Now What

Filed Under Boo!

2012-01-14T13:13:00.000-08:00

I just realized in my switch back to Blogger, I lost all my pictures from the start of my blog (in 2004) through most of 2007. Sadly, I already deleted my Typepad blog and have no real way of knowing what the pictures were since they were loaded directly to the blog and not linked through an external site. This is going to take forever to fix.

Boo!

Better Late Than Never....Eliana in 2011

2012-01-12T11:24:00.000-08:00

I plan to do this separately for the other kids too after I write their updates. However, since I wrote Ellie's first, here she is in 2011. When I was putting this together, I couldn't believe how much she had changed and grown up. Even though I'm her mom, I was kinda blown away by it.....my sweet, sweet Ellie Beans.

January

February

March

April

May

June

July (well, actually two for July, I couldn't decide)

August

September

October

November

December

Update 1 - Ellie

2012-01-04T13:07:00.000-08:00

The last update I wrote (albeit long ago) was on Gabe so I thought I would start with Ellie this time. Good gracious, where do I even start? Let's see....right now she is nearly 2.5 years old which is hard to believe. Maybe it would be easiest to attack this by category.

The Brain:
Knock on wood, but Ellie's shunt has been stable since she was 2 months old. These days we only see the neurosurgeon once a year and when we saw him in June, he didn't even order a CT scan since things seemed to be going so smoothly.

The Eyes:
Ellie's left eye is still slightly turned out. The doctor keeps saying that eventually they will do a surgery to tighten the muscle so that it is more centered. He thinks she can still see pretty good out of that eye and wants us to patch it daily for 2 hours. We have not had much success with that at all. We had a period of about a week where she kept it on and that was about it. I feel guilty a lot about not trying harder with this but what can I do?

The Foot:
Ellie now has AFO's (ankle foot orthotics) to help support both of her feet. Her clubbed foot still naturally turns in and her other foot is pretty weak as well. The braces really make a huge difference when she is standing. Unfortunately, she can only wear the braces when we are actively working on standing/walking with her since her heels slip out of them when she crawls around and that is not good for her feet. Ellie gets excited when I first put them on her but tires of them quickly. Early last year I took her to get a second opinion on her clubbed foot since it seemed like her current orthopedic doctor wasn't doing anything but the new doctor agreed with her current treatment. We haven't been back to see either doctor since even though we are supposed to see them every four months. Guess I better call about that this week.

Growth:
Oh, how I hate this topic. In the last year Ellie has only gained about a pound. She still only weighs about 19 lbs which is at the less than 1% on the chart. Her curve just keeps dropping off downward. I don't really understand why this is the case though because she eats pretty good, not like a pig by any means, but certainly enough to gain weight. Last spring the doctor ran a bunch of blood tests to check for several things and the only thing that came back weird was her growth hormone levels. However, these levels can vary throughout the day so it really wasn't a great indicator. As a result, we went to see the pediatric endocrinologist. This proved to be the most useless and frustrating appointment I have ever been to. The lady spent most of the appointment talking about me and how do I handle all the stress of three kids and do I have support. She blamed Ellie's weight gain issue on me having another baby. It was completely ridiculous because Ellie has had issues since the day she was born and even in the womb for that matter. She told me to add a carb to her dinner and get her up in the middle of the night and feed her a bottle of milk while she is asleep. Totally ridiculous. The pediatrician recommended we go to another pediatric endocrinologist but for now we are not pursuing this.

Development:
Ellie has been trucking along in this area at her own pace. Socially she is right on target. Last year her fine motor skills developed so much she shouldn't qualify for occupational therapy anymore through Early Intervention (she still gets it though since she is already in the program). Her speech in the last few months is going through the roof. She is saying a ton of words and making sentences. Her comprehension is great. Its been funny to hear her sweet little voice telling us things. She calls herself "yaya" and pronounces Eden as "Ena" or she will call her "baby bear" (which is what we affectionately call Eden). After a long lull, she is finally making some gross motor strides. Labor Day weekend, she pulled up to a stand for the first time and now she is cruising around furniture and climbing stairs. She is even taking some steps with a walker which is really exciting. Her physical therapist thinks that she will walk before Eden, but we will see.

The person that is Ellie:
Ellie is quite the fickle girl. She can be very grumpy and spend hours or days whining and crying. It can be very aggravating. She can also turn tail quickly and be silly and happy. She is truly a beautiful little girl and I think she knows it. She likes to flash this cheeky little "I'm cute" grin when she doesn't want to do something. She can be so sweet, nurturing Eden and her stuffed animals. She can be quite ornery too hitting, scratching, and biting her brother if she is in a mood. She is totally a daddy's girl and is happiest when Ben is around. In the last few months she has come out of her shell and is finally letting others see her cute little personality. It has been a lot of fun watching the changes as she moves from a baby to a toddler.

Happy New Year

2012-01-01T07:31:00.000-08:00

One of my goals this year is to blog again. I'll write some updates soon but to start, here are some pictures of my cuties.

My littlest little...Ms. Eden:

Ms. Ellie:

All three kiddos (I would post a picture of just Gabe but he doesn't let me take his picture anymore. Its a miracle I have him in this one.)

And Then There Were Five

2011-07-30T12:29:00.000-07:00

Eden Rose Nelson arrived right on schedule on Tuesday, July 26 at 8:53AM weighing 5lbs 14ozs and 20 inches long. She and I are doing great and we all came back home yesterday. I will try to give more details soon.

In the meantime, here is a picture....she looks nothing like Ellie, but still very beautiful all the same.

First Grader

2011-06-27T12:57:00.000-07:00

It has been awhile since I wrote a post about Gabe. Its getting harder to do actually....its not like when he was two and I could tell you about his new words or latest gross motor feat. By age six, these things tend to be more subtle.

I guess I could start by saying that Kindergarten was a success for the most part. Academically, he did really well and learned all the things he was supposed to without issue. He also made quite a few friends and enjoyed it so much he was sad when school ended. That being said, we did run into some behavior issues in the second half of the school year. Mainly, what we like to call "the crazy". You see, Gabe has this amazing, free spirited laugh. He laughs with reckless abandon...the kind of laugh that makes you smile and join in. He has had it since he was a baby and its one of the things I love about him. However, there are many a instances where he laughs at inappropriate times and has a hard time reigning it in once he gets started. To make things worse, he is also very, very silly. So when you combine the two, it can get him into a bit of trouble. Sadly, his behavior/listening marks on his report card declined throughout the year. I attribute this to him becoming comfortable in the classroom as time went on and therefore letting loose a bit. While I definitely see the value in appropriate behavior and listening skills....I guess if this is the worst that he gives us, I can't complain. We will certainly be working on this at home (where its MUCH worse) and during first grade. I don't want him to ever lose that laugh or the silliness, I just need him to pick his moments.

This spring, Gabe played t-ball for the first time which was awesome. He is very reluctant to try new things, especially if he thinks he might not be good at them. I was nervous about his level of participation for this reason. However, he ended up being incredibly enthusiastic about it. It turns out he is very coachable (according to Ben) and pretty good too. The games were very cute and could be quite hysterical since the ages were four through six. He loved it so I'm sure we will be signing up again next year for coach pitch baseball. In the meantime, I think he has decided to play soccer in the fall so we will see how that goes (previously he was vehemently opposed to playing soccer).

One of the not-so-fun Gabe developments of late was a diagnosis of asthma. It has been kinda bizarre actually because he never had any issues whatsoever until this past fall. About the time fall allergies started up last year, Gabe started up with this crazy, dry cough. He would get it any time he would laugh or exert himself physically. He would not be able to stop it, and he would cough and cough for hours. He never wheezed or seemed overly troubled by it, but it went on for a few months. At the time, I didn't take him to the doctor because I kept thinking that his lungs were just irritated from all the coughing and thus, more prone to a coughing fit. About the time I hit the end of my rope with it and was ready to take him in, it went away. Everything was fine during the winter so I didn't really give it another thought. Just before Easter, his spring allergies started up (as usual) and along with it came the cough. Only this time, it was 100X worse. He would cough until he would gag and very nearly puke. He started wheezing and couldn't catch his breath. The cough was worst when he would laugh or be active, however it would also start up for no reason at all including waking him up in the middle of the night. He would cough so violently, he would even get gushing nose bleeds. Since Easter, I have taken him to the doctor six times and tried many different medications. I think we may finally have the right combination of drugs for him and things are FINALLY getting under control. He is on Singulair (which he is going to stop after tomorrow), Zyrtec (for allergies), Pulmicort (an inhaled steroid), and Albuterol nebulizer treatments (for attacks). I think it was the Pulmicort that finally solved things. He was also on a five day course of oral steroids in the beginning which worked great until two days after we finished it. During this time it was very sad to see my silly, rambunctious, six year old reduced to quiet sitting because he was afraid of setting off an attack. I had missed his laughter so much. There was one point in the middle of a particularly bad attack that he said to me between coughs, "Mama, I think I'm going to die." It was horrible to watch him go through that...especially since I know exactly how it feels. The doctor seems to think it is related to allergies and that he might be able to go med free in the winter. I hope that is the case. The good news is, when allergy season starts up again, we already have a med protocol to fall back on and we don't need to go through months of suffering while sorting through that again. The weirdest thing is, its strange how it took until six for this to show up.

He is still the same Gabbers he always has been. He can talk your ear off. He loves to play with his guys and his imagination is unbelievable. He loves playing video games and drawing pictures. He is an amazing big brother to Ellie. The two of them are so cute together. Gabe lets her wrestle him, slap him, poke his eyes, etc. and he thinks its hysterical. I keep telling him not to let her do that since then she will think its OK to do it to others. However, I think I'm pretty much wasting my breath. He has a lot of patience with her and takes care of her in a very nurturing way. She in turn loves him right back. He still isn't thrilled about Eden coming and told me yesterday that we should sell her in a garage sale instead of bringing her home from the hospital. However, I'm sure he will be just as good of a big brother to her as he is to Ellie.

One of the things we are really working on with him lately is independence. Gabe is definitely not an aggressive, "I'll do it myself", kind of kid. Actually, he is not aggressive about anything. He is pretty content to never really try new things or tackle something that someone else might do for him. I've been forcing him to learn tasks that any six year old should really be able to do by now (ex: open the outside door so he can come in the house, or buckling his own seat belt). I've been met with a bit of resistance in this area but I'm not budging. Soon, with two babies in the house, I'm just not going to be able to coddle him in the manner in which he has become accustomed (insert sad Gabe face here). This has also been the case in areas like taking care of his own dishes, putting away his dirty clothes, etc. I think this has been good for both parents and child.

In a few short weeks (July 15) we will celebrate our sixth Family Day, the day he came home to be with us forever. In some ways, six years feels short because its hard to remember what life was like before Gabe. In other ways, I can't believe how big and grown up my little boy is. I love him so much and I hope he always knows that the quantity and quality of my love is in no way dependent upon how he came to be part of our family. While his adoption will always be an important part of his (and our) story, it doesn't change how I feel about him. I'm so unbelievably grateful and lucky to watch him grow and to have the chance to love him in a way only a mother (or in this case, mothers) can. My hope is that he always knows just how cherished he is by me and the rest of his family.

How about some pictures?

Here was Gabe on the first day of school

And on the last day (sorry, no car for reference..we had to trade in the Fusion for a minivan)

Prior to the beginning of t-ball, all the little league kids got to march in a parade. Sadly, this is the only t-ball picture I have since I am not great about taking pictures.

Finally, Gabe the pirate. He saved up his dollars to buy this pirate kit from CVS. He was very proud to buy it himself with money from the tooth fairy and his Aunt Rachael.

Two!

2011-06-16T17:01:00.000-07:00

Today my sweet Beaner Boos is two years old. I love you baby girl!

Birth Day

One Year

Two Years

Its 2AM and I am Writing This Post

2011-06-13T23:50:00.000-07:00

Gotta love pregnancy insomnia....you get up to pee and then stay awake for the next three hours.

So it seems kinda weird to be back on Blogger. Its like a throw back to the good ol' days or something. I started out here and then moved to Typepad in December of 2005. I decided that I needed to go back to a free service so here I am.

Sorry that I disappeared for so long. My only excuse is that we had some rough things going on and I often find it hard to blog when things like that are occurring. The first thing is my dad has been having some health issues which the doctors are still trying to get to the bottom of. This has led to a few emergency trips on my part since my mom is afraid to drive. The second thing is there was a shake up at Ben's job which led to him changing positions and losing a considerable amount of his salary. Both of these events have been stressful and scary and I tend to turn inward at times like that.

So how am I otherwise? Pretty good. I'm 31 weeks and counting down the days. For the most part, things have been uneventful. I hardly even see the doctor which is weird. I did fail the 1 hour gestational diabetes test which was surprising. I tried to take the 3 hour test last Friday but only made it about 5 minutes before puking up the entire glucola drink. It was even still cold when it came up (yum!). So now I have to visit the lab and do a fasting draw and then a post breakfast draw 2 hours later. I have to do this once a week for the next two weeks. I have definitely hit the uncomfortable stage and I'm eager for the pregnancy to be over. Due to the risk of rupture, they are going to deliver me at 37 weeks or roughly 41 days from today. They are also going to tie my tubes and bring this 11 year family building saga to an end.

I'm somewhat reluctant to share the name we picked out for this little girl. We have told a lot of people and have not received very positive responses which is unbelievably aggravating. Its amazing the things people will say. If I was ever going to do this again (Ha! See last sentence of prior paragraph) I would not share the baby's name until after he/she was born when I would hope people would keep their negative opinions to themselves. Even my own mother said, "You can't name her that because I don't like it." I was pretty pissed about that and told her she didn't get a say and I didn't want to hear another word about it. However, I will share the name if you promise not to say anything negative about it....we are going to name her Eden Rose. Ben and I love it and that is really what matters. I especially love it when I hear Gabe say her name. It sounds so sweet coming from him.

Well, I should probably try and go back to sleep. I will write separate updates on Gabe and Ellie (for real this time). I also want to talk a little bit about how the job change/salary cut has impacted us.

Until then....

The Verdict is In

2011-03-10T08:29:00.000-08:00

I had my ultrasound today to check for birth defects similar to Ellie. Its all good news.....the baby looks perfect so far. So perfect in fact, there isn't really much to say about it at all. Even my placenta is behaving (mostly). Its anterior and no where near the cervix. The only possible issue could be since its anterior, I could have issues with accreta again. They will just watch it and see.

Can I just say, the relief is immense. We could deal with it if there were problems, however I'm glad for the sake of this baby we don't have to. I was so nervous, I couldn't even sleep last night. Maybe, and I hesitate to even say this, I will have an uneventful pregnancy, delivery, and baby. But, let's not get ahead of ourselves here.

So I suppose you want to know the gender, eh? Its another girl! We are both very happy about that. I made no secret of the fact that I really wanted this baby to be another girl. I wanted Gabe to be the only boy. I never wanted him to feel like he had to compete with a biological son. Speaking of Gabe, just like last time he totally called it. He has insisted all along that this baby was a girl, just like with Ellie. Of course, he also thinks we should name her Ellie too so......

Sorry once again I dropped off the planet. Its not my fault, see the day after my last post I came down with the flu. The bonafide, I want to die its so horrible, flu. I'm still fighting off the last remnants of it in fact. Of course, Ellie got it after me and Gabe had it before me, so the sickfest continued around these parts. I think we are all healthy.....for now. I have things to tell you about Gabe and Ellie, they each deserve their own posts. Hopefully it won't take me a month to write them.

Finally, more great news......Ben has been cancer free for a year now (well, officially in April). His scan came back completely clean. Hooray! Its been a good couple of weeks (sickness not included) for the Nelson's.

Here's my baby girl:

I have some 3D pictures of her face as well, but she still looks a bit alien-like. Maybe next time.

This Post Should Be Titled: Why is Someone Always Sick in my House?

2011-02-22T07:38:00.000-08:00

It started at the end of January when Gabe got the stomach flu for the first time. It was very sad. I guess its pretty amazing that it took 6 years for him to know what puking was like (the last time he puked he was about 14 months and obviously doesn't remember that). It took awhile for him to fully recover from it and begin eating and going to the bathroom normally. In the meantime, I hovered in a state of terror that either Ellie or I would catch it. Thankfully no one else did.

About a week after his recovery from the stomach bug, Gabe started coughing and sniffling. This all culminated in him sitting slumped against me in a booth at a coney island with his hat and winter coat on. By the time we got back home, he had a fever of 102. Unfortunately, it was the first time we tried to go out to eat in months and it was a total bust (Ellie spent the whole meal crying hysterically for some unknown reason). The fever lasted another couple of days and the cough/sniffles for about a week and a half.

About the time Gabe started recovering, I was feeling smug that no one else had caught this particular cold as well. However, that Saturday, Ben and I woke up feeling absolutely miserable. He and I were barely limping by for about a week. Sure enough, Ellie woke up on Sunday with the same thing. It wasn't until the following weekend that the three of us were feeling better. Then, Sunday Gabe started coughing again and Monday brought another fever. This morning he came into our room sobbing that he didn't feel good. Grand! Did I mention that the school sent home a letter last week stating the someone in his class had strep and scarlett fever?

It kinda reminds me of the early daycare days. Oh man, that was awful!

So that is why I haven't really blogged. Between me feeling sick from the pregnancy and all the other various ailments going on, I just didn't have the energy. Plus, I feel so sad seeing my energetic boy forlornly shivering on the couch. Where Ellie brings the drama, Gabe invokes the pity.

Alright, switching directions.....

I saw the high risk doctor last Wednesday, the infamous Dr. G. It was the first time back at that office and I wasn't sure what to expect. The nurse went through my whole history again, did the weight, blood pressure, pee in a cup thing. Then she listened to the heartbeat with the doppler. It was the first time anyone was able to get it with a doppler (since my uterus is tipped backward). As soon as she put the wand on my stomach, there it was beating away at 164 bpm. She didn't even have to move it at all. I was relieved because I was feeling nervous about things being OK in there.

Afterwards, Dr. G came in and we caught up on Ellie and Ben's cancer. I talked her out of a pap (score for me again!). She said she would only do one if they needed to do a speculum exam later for another reason. Seriously, I could have given her a big, wet kiss on the mouth for that one. She asked if we ever received a diagnosis for Ellie and whether we would consider going to see a geneticist for one. I don't know, I guess its something to consider, but what a can of worms to open up. Maybe I'm a bad mother for not going to the ends of the earth to find an answer.....I guess that is something I grapple with on a daily basis. Anyways, since we don't know, she can't give us any odds on whether this baby is at risk or not. If its simply hydrocephalus with no genetic cause, then it is unlikely to reoccur. We laid out a plan of ultrasounds, starting with March 10. I will be 17.5 weeks then so they will begin to look at the anatomy for abnormalities. I was 17 weeks when they first discovered Ellie's issues. She said they will do another scan at 20 weeks and possibly another 2 weeks after that. Then, I will have a few more scans later in the pregnancy. I don't know, in my gut I think this baby is fine.....doesn't mean I'm not nervous though. I turned down the quad screen testing and the nuchal translucency, opting only for the anatomy ultrasounds. If it does turn up something, we will do an amnio as well.

That's pretty much the scoop around here. I still feel sick some days but its getting better. I only take the Zofran about every other day and only puke when I get a migraine (which is somewhat frequent unfortunately). I'm still down a couple of pounds so that is good. I am starting to feel the baby occasionally, just some soft little flutters. I have to admit, I love that.

Ben had his 1 year scan today. We will get the results next week and I feel really nervous about that. I don't even know what I would do if..........I can't even go there.

Well, I should wrap this up since Gabe needs another dosing of Motrin, but I will try not to go so long between posts next time. Spring is just around the corner folks.....I hope its a good one!

PS - Thanks to everyone who was checking on me these last couple of weeks! I appreciate it!

11w1d The World Continues to Spin

2011-01-24T08:57:00.000-08:00

I'm not sure how it happened, but two weeks went by. Oh, yes, I know. I was sleeping.

Friday I woke up to some spotting. Of course it would happen on a Friday when the Dr's office is only open for a half a day. As a result, I was scheduled for an ultrasound this morning.

Conclusion: Baby is still alive.

Phew!

It was floating around with a giant noggin, arms, legs, hands, feet, and torso. I didn't see any movement, baby must be joining me in my sleeping extravaganza. Its little heart was beating away at a 171 beats per minute. So hey, we may actually be having a baby.

I also have a tiny bit of the placenta covering my cervix. At this point with Ellie, I already had a complete previa that never moved. Hopefully this bit will grow away from the cervix and not be drawn across it. I would really, really, really like to avoid a previa this time around. I've been put on "pelvic rest" which means no fun time activities at all. None. Its Ben's worst nightmare**. Good grief, the amount of time we've been banned from relations in the course of our marriage is unnatural.

I'm still feeling lousy most days, but the Zofran is helping. I actually made dinner a few times last week and even managed to do some dishes. I'm hoping I will turn the corner soon. I feel like if I can just make it to spring, everything will be OK. But sweet moses, spring needs to get here soon.

I know I need to write about the kids and something other than pregnancy updates. There is other life occurring around here....at least from what I can see from under the comforter of my bed. If you can just hang with me a little while longer......

Here is Nelson child #3. Head on the right, torso on left, blobs on top and bottom are the arms. Not pictured, legs.

**Well, Ben can have fun time activities, but I alas, cannot.

Reporting From the Trenches

2011-01-09T04:47:00.000-08:00

Tomorrow is my birthday...I will be 33....is that considered my mid-thirties? Scary. I still feel 25 somehow.

I'm hanging in over here. Somewhat. Some days are better than others. I saw the OB a few weeks ago and the look on her face was priceless when she walked into the room and saw me. If only I had a camera. The appointment itself was uneventful unless you count the fact that I talked her out of giving me my pap (score!). We had a conversation about Ben's sperm and the effect of the chemo. She said the sperm that impregnated me would have been created about two months prior which would put us well outside of the range of his chemo treatments. That certainly put my mind at ease. She said that men tend to recover from these things quicker and easier than women and didn't even seem surprised that it had happened at all.

The doctor also said that at twelve weeks I will be transferred back to the high risk practice. I wasn't surprised by this but asked her why that was the case. She said that my delivery had been complicated and this one needed to be handled by them as well. I told her that was news to me. While pretty much everything about that pregnancy was difficult, it seemed the delivery was the most simple part. I don't recall Dr. Mo making any sort of comments about its difficulty. Now, that being said, the planning for that delivery involved a lot of complications. If you recall, they were very concerned I would lose my uterus due to placenta accreta (where the placenta burrows deep into the muscle or scar tissue from my previous procedures). There were plans to insert balloons in my groin to cut off all the blood supply to my uterus so that I wouldn't loose too much blood. A second IV line was inserted prior to my c-section just in case a blood transfusion was required (by a person who was in no way good at putting in IV's I might add). There was also the newly developed Nelson stitch created just for me. However, I didn't get the balloons because of the hour of my c-section. I also didn't need a blood transfusion and I didn't lose my uterus, obviously. My recovery was a piece of cake, in fact, I hardly even remember it to be honest.

I'm certainly not upset that I'm being transferred back. I really liked all the doctors there and they were very, very good at what they did. My regular OB said they will certainly remember me because I was such a "unique and interesting" case. If I had a nickel..... I think Dr. G is just going to shake her head at me. I should definitely have my camera handy.

Going in a bit of a different direction....

I'm nine weeks even today and feeling pretty crummy. Week seven was a breeze and I thought, "Huh, maybe this time will be different". Ha! A few days into week eight found me confined to bed, puking my guts out all day. So, I'm pretty much feeling the same as I did with Ellie. Well, except for one really weird symptom that is new. My feet are mad, crazy itchy. I guess this is common but it makes me nuts. I told Ben I'm going to pay someone just to itch my feet all day long. While I haven't had any certain proof that this baby is still alive, I'm not stressing too much about it right now. I see the regular OB one last time at the end of January and she will listen for the heartbeat then. If she can't find it, they will send me over for an u/s right then. I will be just about twelve weeks at that point so it will make me feel a lot better.

So that is what is up over here. Mostly, I'm just trying to survive and get through this rough part of the pregnancy. I can't wait to be able to function normally again. I miss my husband and my kids even though we are in the same house. I just have to keep telling myself that this will end eventually.

Ellie in 2010

2010-12-31T03:36:00.000-08:00

(Gabe is down below)

January

February

March

April

May

June

July

August

September

October

November

December

Gabe in 2010

2010-12-31T03:07:00.000-08:00

January

February

March

April

May

June

July

August

September

October

November

December

Better Late Than Never

2010-12-28T01:27:00.000-08:00

I've been feeling pretty lousy lately so I didn't get this up sooner. This was the best picture I could get of both kids for Christmas. Despite the current state of my stomach, we had a great Christmas. It just doesn't get any better than Christmas with young kids.

6w2d Ultrasound

2010-12-21T10:13:00.000-08:00

Yesterday was my nurse's visit at the doctor's office. As I suspected, her eyebrows nearly lifted off the top of her head as I told her about my history, Ellie's history, and Ben's chemo. I never can understand why I need to give my entire reproductive history every time this happens. They have computers, why doesn't it carry over my history. That seems so inefficient to me. It all has to be in there, right? Why not just ask me if anything has changed. I mean, for crying out loud, I can't remember the years of all my miscarriages. At the end of the appointment she asked me if I had any questions, "Just one, can I get an early ultrasound?" Surprisingly she scheduled it right then without even conferring with a doc. Score.

So this morning Ben met me at the doctor's office so that I could see if there was a heart beating in there or not. The u/s tech recognized me right off the bat, which is funny because if you remember I was transferred out of the regular OBGYN's care and over to the perinatologist office early on. She said something to the effect of, "What a surprise to see you here." Yep, tell me about it. I really like this lady, she has always been good to me.

I dropped trou and climbed up on the table. Ben pointed out (as he always does) how the u/s wand gives him the creeps.....all gooped up and condom covered. "Well, its not pleasant" I say, "But its no bone marrow biopsy", to which he visibly shivered and muttered something about how awful that was. I sure know how to kill the mood.

But you don't care about any of that.

The baby had a good strong heartbeat of 126 bpm and measured exactly 6w2d. I'm really shocked, I didn't expect a heartbeat.

Ben accused me of not being happy afterward. I'm not unhappy, I'm just reserved. As I told him, its one hurdle down, about 85 million more to go. I can't help it, I'm cynical now. I won't have the rug pulled out from under me again. I will be prepared. I will continue to be reserved. Its safer that way.

Still, it is good news.

Struggling

2010-12-18T05:30:00.000-08:00

One of the more formidable issues I have with pregnancy is depression. Its weird, I don't have issues with depression ever in my life, but a few weeks into pregnancy and I'm heavily weighed down by it. I can't exactly remember if it let up later in pregnancy last time or not. I'm pretty sure that the progesterone doesn't help. This depression makes it impossible to enjoy life. It makes me not want to do anything but lay down and stare at the wall. I don't even want to watch TV or read. Even sleeping feels like a chore. Its not like I'm crying or sad....I'm just under a cloud of despair. When you add the nausea on top, the despair mounts.

Many women have issues with postpartum depression, however that wasn't the case with me once Ellie was born. I felt ecstatic after her birth. Its probably the happiest I've ever felt in my life. I will never forget the way I felt driving home (after being in the hospital for so long) with my baby in the back....home to my Gabbers....our four person family under one roof. If I could bottle that feeling and sell it....well, I'd buy some for myself right now.

I know I will get through this. I know it is a good thing. I know it will come to an end eventually. However, right now, I can't see through this fog. This pregnancy feels impossible. I don't know how I will make it.

Finally Got My Snow Storm

2010-12-13T12:51:00.000-08:00

Today was a snow day and Gabe did not have school, nor did Ellie have therapy. We got a good bit of snow and ice yesterday and now its crazy frigid (wind chill of negative eight). It is exactly what I was hoping for....except for one minor problem....Ben dropped my car/house keys in the snow either at our house or his parents. We cannot find them anywhere and I suspect they won't be found until everything melts.

On an unrelated note, given the new turn of events, I may need to modify my blogging goal. Since I can already feel the quese coming on and the strong desire to climb into bed at 7pm, I will try to post two times a week instead of three. I'll try not to completely disappear like I did last time...even if shutting down is my M.O.

So, pregnancy thoughts....

I don't even know where to begin. I guess by saying most of all, I'm shocked. Beyond shocked. Ben finished chemo a mere seven months before this occurred. Plus, I was specifically avoiding my fertile week because one of my goals for this year was that no one wanted to throw up over the holidays. Its a good goal to have, ya know. The timing seems so far fetched, that I started to wonder if it actually happened the month prior, but I don't think that's the case after all. When I took the first test from the dollar store, I really expected it to be negative. When it came up positive I told Ben and then promptly left the house to get a few more expensive tests. I honestly thought the first test was faulty. Then the other two tests came up darkly positive and I couldn't deny it anymore. Although I did try and spend the whole first week in denial.

I am happy about having another baby, I've always wanted three, but after everything that happened, I had accepted that this was not to be my fate. That being said, in no way am I excited about being pregnant again. My pregnancy with Ellie was awful. There is no way around it. I was so miserably sick for the first 22 weeks, this caused massive depression. Ben had to do everything around here while I was just a lump of matter lying up in bed. I was useless. Around the time things started getting better in that department, we found out about all of Ellie's issues. The terror and heart break that caused was overwhelming. I never thought I would be told that I may want to consider terminating my baby. Then, when we had somewhat come to terms with what was happening with Ellie, I land myself in the hospital for a month. I keep reading this paragraph and thinking, "But this isn't even conveying the horribleness of it all....it doesn't even scratch the surface." And it doesn't. Not that Ellie wasn't worth all of that. She absolutely was. However, I'm in no hurry to repeat that experience in any fashion. The thought of being sick again for five months fills me with dread. The threat of something being wrong, possibly even worse than Ellie, makes my body shake with fear. The mere idea of being hospitalized again and away from both my kids (particularly Ellie who really needs her mama) makes me feel crazy.

Its funny, because if you ask Ben or me what our gut says, we both agree that this pregnancy will not end in miscarriage. I don't have any real reason to think that, but I do. Yet, I wouldn't be surprised if it did. I realize this is a complete contradiction, I can't really explain it but in my brain it works. Still, Ben told me he can't really see past the twelve week mark. Not me...my brain goes straight to the logistics of how this is going to work. I can't deal with or fix the things I mentioned above. However, I can try to solve where this baby will sleep and the fact that we will need a new vehicle since none of our vehicles can hold three car seats. I can feel happy knowing my stash of cloth diapers will be used a second time and hey, we have a ton of boy and girl clothes.

I was looking forward to a quiet year. 2009 was lost to pregnancy, the madness after Ellie's birth and her various procedures, pumping, and no sleep. The first half of 2010 was lost to chemo, more pumping, more procedures, and no sleep. Things were finally settling down for us. Ben was in remission and Ellie had turned one and we were reaping the benefits of coming out of that newborn stage. I'm really not mentally or emotionally ready to jump into another perfect storm. I realize that this was created by my own doing. I have no one to blame but myself (well, and Ben). We should have known better, really.

Again, I am happy and I'm sure things will work themselves out one way or another, right. You can't stop life from marching on rather you want it to or not. I just kinda wish it would have come a year later. Perhaps when we have both recovered somewhat from the last few years. When we come to that point where we look back and say, "Hey, maybe it wasn't that bad." If such a point exists. At the very least, we could have rested a bit and regrouped. I just hope we have the strength it takes to do this again.

The Great Progesterone Debacle

2010-12-08T12:13:00.000-08:00

I don't know about you, but just the word "suppository" give me the heebes. I prefer not to supposit anything, anywhere. So when you know such a thing is going to occur, you want the whole process to go smoothly (pun intended).

I don't know if I ever told you this, but when I was pregnant with Ellie, my doctor decided that maybe I should give progesterone a try. If you remember correctly, I had already had three miscarriages, and while the assumption (or my assumption at least) was that it was due to my uterus this could not be proven. My doctor called me up at home and basically said, "Hey, I can't guarantee this will work but it does for some people. Let's give it a try." I was all for giving anything a try. The rest is history. Now, maybe it wasn't the progesterone that caused the right amount of voodoo magic for Ellie to come into being.....but part of me feels like it certainly contributed. So after getting that freakish positive on Sunday, first thing Monday morning I called to see if she would prescribe it again.

As these things tend to go, no one from the doctor's office called me back on Monday. So first thing Tuesday morning I called back once again. The receptionist promised that someone would look into it and give me a call. By 3:00, I was tired of waiting. You need to start the progesterone as soon as possible for it to be effective. I called the office once again. After some file searching, I was told that it was called in on Monday to my local pharmacy (CVS). This was news to me because a) no one called to tell me that, b) why didn't they just tell me that when I called in the morning, and c) I was under the impression that this medication has to be specially compounded and only the pharmacy at the hospital does this.

Nevertheless.

I woke Ellie from her nap and bundled her up and off to CVS we went. Only to be told that they had to special order it and "maybe" it would come in tomorrow so please give them a call before showing up again. Ugh. But fine. That brings us to today. I called this morning and was told it had come in and I could pick it up anytime. So after dropping Gabe at the bus stop, Ellie and I schlepped back to CVS to wait in their long pharmacy line. After being cut in front of by, not one but two senior citizens, the pharmacist sends me off with my prescription.

Once at home, I open the box and what do I find......a freaking chemistry set. I have fatty acid in a jar, and a glass tube of powdered progesterone, some crazy suppository mold, and various implements to concoct said suppositories. The instructions were two pages long and were quite involved and used words like, "after the pharmacist mixes..." (the key word being "pharmacist"). Clearly, this was not in my realm of expertise. I have no desire to perform a chemistry experiment on something I'm about to shove into my body. So I called the CVS once again. After being on hold for 10 minutes, I was hung up on and then put on hold again. Finally, the pharmacist gets on the phone and calls me Stephanie and has no idea what I'm talking about. Plus, he doesn't speak very good English. I try to explain the predicament and he finally says, "so you want to bring it back and have us mix it?". Yes, genius, that's exactly what I've been saying for the LAST TEN MINUTES! At this point, Ellie has now eaten her whole lunch, and that is no quick task.

Soooo, I bundle the recently unbundled Ellie back up and off we go yet again. After much more debate and back and forth, and the pharmacist once again calling me Stephanie, I finally convince him to take the box from me. He opens the instructions and does a double take. He confesses at this point that he has no idea how to do this and that he's never seen anything like it before. At this point, I have absolutely no confidence that I'm going to get an actual progesterone suppository. But, I wait anyway. The pharmacist comes back three more times to tell me that its going to take awhile, and do I need this today, and once again that he's never done this before. Finally, he hands me the mold contraption back with some crazy device to push out the suppositories. I'm not impressed.

At this point, I figure we are done with this saga. But no, I figured wrong.

At about 4:00, I finally receive my call from the doctor's office. They wanted to let me know that they had called in my prescription to the pharmacy in the hospital. Confused, I mentioned the debacle with CVS. The nurse seemed skeptical and mentioned again that very few pharmacies are actually skilled with compounding medications. Yeah, trust me, I know. Now I'm feeling even less sure of the molded product currently sitting in my fridge.

So what do I do? I bundle up both kids, neither of whom are the least bit happy about this plan, and get them buckled in the car. This involves yelling (on my part) and the Gabe's resultant request for a hug (winner mom, let me tell ya). We drive 30 minutes out to the hospital and finally get the "real" progesterone suppositories that I needed all along.

Now all I have to do is look forward to their wonderful side effects...extreme fatigue, nausea, and headaches....Hooray!

This Explains A LOT!

2010-12-07T11:05:00.000-08:00

Yes, you are seeing that correctly. Go ahead, take another look if you must. I know I have, and then I looked a couple more times. The impossibility of it all is immense. Laughable even.

This explains the feeling slightly depressed and out of sorts lately. It also explains why I'm nodding off midday and content to sit and do some solid wall staring rather than cook dinner or do, well, anything. Glad to know I'm not just going crazy.

Thoughts on this latest development to come....once I figure out what the hell they are.

PS - If you know me in real life, mums the word. I've only told two people (my best friend and one SIL). For obvious reasons, aka my old pal miscarriage, we don't want to get the whole fam riled up over this news.

Discouraging Appointment

2010-12-04T01:46:00.000-08:00

As I mentioned in my last post, Ellie had her 15 month (at nearly 18 months) appointment. I hit Ellie's weight right on the button. She was exactly 17 lbs 8 ozs. Her length was 28 1/4 inches. I was suprised by this, I expected her to be closer to 29 inches. I updated Dr. D about all the various specialists we see and what they had to say since I last saw her. This always takes awhile. We talked about what she is doing developmentally. I like that she just lets me tell her what she can do. With Gabe, they always ask about specific milestones. Dr. D seemed impressed with her new skills. Then she went to plot her growth.

Sigh.

For the first time, Ellie fell way off her curve for height. No matter what her weight has done, her height has stayed very consistent at the 3rd percentile. Dr. D said she was very concerned and wants me to bring her back in 3 weeks for another weight and length check. I asked what she would do if its not any better and she said run labs to check her liver and kidney function and possibly order a sweat test for cystic fibrosis.

I don't know if I ever mentioned this, but she had soft markers inutero for CF. Honestly, I don't believe she has it, but I'm not going to lie and say that it doesn't niggle in various parts of my brain. Part of me would like to have the test done so I can rule it out, but the thought of waiting for those results terrify me. The soft marker they saw was a brightness in her bowels which could have just been poop or possibly a sign that I'd had an infection during the pregnancy. The perinatologists offered genetic testing for Ben and me but we declined. Ellie did not have any bowel issues when she was born (which would have been a sign). Also, I have to confess, I have licked her skin and its not salty (which would also be a sign...and what the sweat test checks for). I don't know, I can't even go there. I mean, CF is a deadly disease.

Dr. D would like to see Ellie gain a pound in 3 weeks. I can already tell you, that isn't going to happen. I almost told her to forget it at that point and just order the tests. However, I didn't want to go through all that before the holidays. Then she said we should start speech therapy at 20 months if Ellie doesn't have 10 words by then. Which also isn't going to happen, nor would I even expect it to.

So after all that fun, they gave her two vaccinations and we drove home with both Ellie and I crying. I always leave those appointments feeling like a complete failure of a mother.

When we returned home, I printed out a growth chart and plotted her height and weight from her 13 month and today's appointment. To my shock, Ellie went up the curve in weight and for the first time EVER was on the 3rd percentile line. I checked, and rechecked, and then checked again. I was using the WHO charts and everything was right. I could hardly believe it. Now, sure, she fell of the curve for height (quite a bit too) but she's never done so great in weight. I'm not sure if Dr. D overlooked this, or plotted it wrong, or used a different chart....but I'm taking my chart with me the next time I go.

I don't know. Nothing is really normal about Ellie. Part of me doesn't expect that her growth would be either. Maybe there really is something bigger (genetically) going on that ties all her various issues together. Maybe it would explain her "failure to thrive". The truth is, Ellie is a mystery. I don't know that we will ever solve it.

Still Waiting For My Snow Storm

2010-12-02T12:23:00.000-08:00

Its been awhile since I've put up some pictures of the kids. However, before I do that, I just wanted to say that so far the nystagmus hasn't returned after Ellie's eyes were dilated. So far so good. Dr. R said that the back of her eyes look great and that even though she favors her right eye, he thinks her left eye is pretty strong. He still is talking about doing a surgery on the left eye, maybe before she is three. He keeps changing when they are going to do it at every visit...first around one year, then two, and now three. Round trip, we were gone for four hours which was way too long. Since Gabe was at school, I didn't have him to keep Ellie awake in the car which led to a second consecutive no nap day for the Beans.

Tomorrow I have Ellie's fifteen month appointment (at eighteen months...I am notoriously late with these appointments). I'm hoping the pediatrician doesn't give me a hard time about her weight. At one point I had her up to about eighteen pounds, but then she got sick for three weeks and that number went spiraling down. I'm guessing she's back at about 17.5 pounds which is way, way too small for an eighteen month old. That being said, she has gained about 2 pounds since her last visit. She eats great, but she does not want to drink her milk at all. When she won't drink, that cuts a couple hundred calories out of her diet and cutting calories is not what we want (well, its what I want but that is another post). I dread going to these appointments. Its like going to the dentist and knowing that they are going to lecture you about flossing or going to your annual OBGYN appointment and anticipating the lecture about self breast exams....only worse because this is the health of your kid.

On an unrelated note, Ben's birthday is Saturday. We are going out to dinner and then to his dad's Christmas chorale concert. I'm also going to bake him a pumpkin pie in lieu of a cake. This is his request. The man loves himself some pumpkin pie. I guess I will be doing some swearing at pie crusts after all. That's OK though, he's worth it. A year ago, he was a few short days away from starting chemo so it will be a good birthday indeed.

This is Gabe's sweet face

On the opposite side of the spectrum, here is Ellie's sad face. Its the face she makes when she fake cries. Now she's just started making the face instead of making fake cry noises. I guess she's getting lazy with her drama.

Apparently, cookie cutters make great toys. Both kids have been playing with them everyday while I cook dinner.

Finally, Ellie's hair is getting out of control and its always poking her in the eyes. It looks really cute when I pin it back with a barrette, but she pulls them out about two seconds after I put it in. Everyone is pressuring me to cut her hair but I'm not going to do it. I don't want her to have bangs so it doesn't make any sense to cut the front. I tried some pigtails the other day, but I don't think it went over too well.

Of a Random Nature

2010-11-29T13:43:00.000-08:00

Cohesive thoughts and I don't seem to be getting along lately. I'm not sure what is going on with me but I feel out of sorts. I wouldn't call it depressed really, but just not myself. I don't know. I need to snap out of it though, I'm starting to bug myself....and is there anything worse than annoying your own self?

So if you don't mind, I am going to go with some more bullet points to cover my random thoughts for the day.

Today Gabe read his first words all by himself. "See", "Bee", and "Three". We've been trying and trying to help him sound out words and the concept was completely lost on him. He knows all his letters and letter sounds, but it just wasn't happening. I knew once he got it, that would be it and he would be reading like a champ in no time. That is how he has done everything (and I mean E-V-E-R-Y-T-H-I-N-G). I think he is going to love reading.

I think Ellie has started to say her first words, "dada" (of course because she is 100% a daddy's girl), "brabra" (aka "brother"), and last of course "mama". She also said "ball" during therapy today, but only because she was repeating.

Gabe is getting close to losing his first tooth. Its been wiggly for a few weeks now. I think it may fall out in the next month.

Oddly enough, Ellie is about to get her first tooth and its the same one Gabe is about to lose. Nothing like waiting until 18 months to finally push through a tooth.

I have no idea what to get Gabe for Christmas this year. Anyone have any ideas?

I cannot wait for it to snow. I want a big ole snowstorm. Then it will definitely feel like Christmas.

I ate my first Clementine of the season and it was delicious (no seeds this time). I'm sure the five pound box I just bought will be gone in a week between Gabe and myself.

I'm feeling nervous because Ellie has her opthomology appointment tomorrow and they are going to dilate her eyes again (its been a year since they did it last time). Maybe it was a coincidence, but starting the day after they dilated them last time she had nystagmus for several months anytime her head turned to the right. Nystagmus is when the eyes move wildly back and forth, in Ellie's case from side to side. It is really scary and I thought she was having a seizure. It scared Ellie too. This is one of the reasons she wouldn't turn her head and ended up in the molding helmet. I think it finally went away in the spring. I don't know for sure if the dilating caused it and I have dilated one eye since (in lieu of patching we did dilation drops instead for a week). However, I am pretty freaked out about it. I really don't want to see that happen again. It would be a huge set back.

I think I needs some dessert...maybe a bowl of vanilla ice cream with bananas and hot fudge. Sounds good doesn't it....now you totally want some too. ...and now you are cursing me because you have neither bananas nor chocolate sauce. Sorry about that. And on that note.......

How was your Monday?

Hard To Believe

2010-11-27T11:28:00.000-08:00

I can't really fathom where this year has gone. Today we decorated our house for Christmas (except for the tree which will be next weekend since we do live trees). I said to Ben, "I swear just a few weeks ago we were sweating our butts off at your brother's wedding and now I'm staring at ceramic snowmen."

Of course, decorating always makes me think of this video. Gabe was almost three here and I cannot believe how sweet his baby voice sounds.

When I was a kid I used to dream about what my future family would be like, particularily around Christmas time. I would daydream to the Carpenter's Christmas album my mom always played. I was going to marry the boy I had a crush on in middle school. We were going to have two kids, a blonde hair blue eyed girl followed by a similar looking little boy. My family doesn't look like that exactly. In a lot of ways its nothing like I pictured. However I couldn't have imagined it going any better. In the words of Ben Folds:

I am
I am
I am
The Luckiest

Seriously, just try and listen to that song without tearing up.

Giving Thanks

2010-11-24T13:24:00.000-08:00

I have a lot of things to be thankful for this year.....let me list a few:

My amazing husband, without whom, I wouldn't want to tackle this crazy life. If everything else fell away, he would be enough.

My most special little boy. Its hard to believe this is our sixth Thanksgiving together already.

My amazing tiny girl.

The fact that Ellie can see. A year ago, it didn't seem she was able to see anything.

I hesitate to even type this one but....no shunt surgeries in 2010 (thus far).

Ellie crawling and generally progressing developmentally.

Chemo is over and Ben is cancer free. I am so, so, so thankful that it isn't a year ago when that journey was just beginning.

All the people IRL and in the computer that supported us this year.

My MIL/FIL. I cannot imagine how we would have made it through this year without them. They helped us out so much. They watched the kids, fed us, and just generally provided support. I couldn't ask for better in-laws.

I'm thankful that we are hanging in there financially during these crazy times.

I'm not pumping or pregnant. Neither of which were enjoyable at the time....but I'm glad that I had the ability to do both....even more glad that I'm not doing either now.

I'm very thankful for my new SIL who has been a great friend and sister to me this year (and I'm not just saying that because she reads this).

My parents and brother whom I love very much.

That I didn't have to swear at make pies this year since my SIL has become the pie guru.

Happy Thanksgiving everyone!

Thanksgiving Rambling

2010-11-22T13:07:00.000-08:00

Thanksgiving used to be my favorite holiday. However, I think I've fallen out of love with the it. I've been cooking Thanksgiving for my family since 2004. Starting in 2006, Ben's parents joined us since they did not have any family to celebrate with. I didn't like the idea of anyone spending Thanksgiving alone. Over the years the balance shifted, my grandfather passed away, my brother moved to Phoenix, Ben's brother came home from the army and got married, and Ben's grandfather died leaving his grandmother with no one local to celebrate with. So now there are far more of Ben's relatives attending and only my parents on my side.

Last year I cooked Thanksgiving, but we served it at Ben's parent's house on account of the rat. This was much easier because our house is very, very small and their house has a great setup for entertaining. Plus, then I didn't have a kitchen full of dishes (except for what I used to cook). My parents felt a lot like they were tagging along to the Nelson's Thanksgiving dinner. I can understand where they are coming from on that. This year, they said they weren't going to come to dinner for that reason. My mom wasn't being mean or manipulative about it, just matter of fact.

I didn't like the idea of my parents spending dinner alone and we long ago decided that we were not going to split holidays between houses or do two days in a row. I managed some juggling and now Thanksgiving is back at my house and my parents, Ben's parents, my BIL/SIL, and Ben's grandma are coming.

Further complicating matters, there are a few other factors with my family that are at play here that I'm not at liberty to discuss on this here blog. Adding it all together, I just feel stressed about the whole thing. The "other factors" alone give me a tremendous amount of anxiety. The stress of just keeping everyone happy and finding space for everyone piles on that. I just can't enjoy the cooking and eating and whatnot like I used to.

Oh well, I guess there is always Christmas.

Spicy Chicken Corn Chowder

2010-11-20T09:56:00.000-08:00

It is no secret.....I love cooking soup. Love it! Its one of my favorite parts of winter. Spicy Chicken Corn Chowder is our second most favorite soup and its easy and fast to make.

Indgredients:

A small onion

2 cloves garlic

2 cups milk

1 can cream of chicken soup

1 small can diced chilis

2 cups cooked, diced chicken

1 can (or 1 bag) of corn with peppers

2 tbl parsley

1 block of pepper jack cheese

Cayenne pepper

2 tbl butter (not pictured)

Step 1: Dice the onion, mince the garlic, chop the parsley, and shred the whole block of cheese.

Step 2: Cook the onion in the butter until its soft and translucent. Add the garlic and cook for one more minute.

Step 3: Stir in milk, cream of chicken soup, chilis, chicken and corn with peppers. Bring to a very soft boil and then immediately reduce the heat down to low.

Step 4: Sprinkle in cayenne pepper. The amount depends on how spicy you like this. I like it really, really spicy.

Step 5: With the heat as low as it can go, add cheese to soup one handful at a time. Taking care to stir the pot between each addition until the cheese it melted.

Step 6: Stir in parsley.

Step 7: Devour.

If you don't like spicy food, or want to serve this to kids that won't eat spicy food, you can omit the cayenne pepper and use monterey jack cheese instead of pepper jack. You may need to add a touch of black pepper instead.

Also, if you are against canned creamed soup (like my MIL)...I found a homemade substitute cream soup mix here. I haven't tried it yet so I can't attest to it.

Additionally here is my tip about having cooked chicken on hand, courtesy of Ina Garten (yes I watch A LOT of Food Network). When split chicken breasts go on sale (typically for $0.99 a lb here) buy a huge package. Place them on a baking sheet and bake at 350 degrees until they reach about 161 degrees (not sure how long that takes since I use a digital thermometer). Let them cool a bit and then remove the skin, cut off the bone, and dice up. I usually portion them into 2 cup baggies and freeze. Then when I need cooked chicken, I already have it. This is miles better than boiling or cooking boneless, skinless chicken. It stays really moist and tasty. So good and easy.

Finally....No, my children did not consume this meal. Gabe cannot have milk so the spicy/not spicy point is moot and Ellie doesn't quite know what to do with soup so she's out on this one too. However, Gabe was quite happy with his substitute meal.

Nugglets

2010-11-18T12:16:00.000-08:00

In bullet point form:

I have been without cable or internet for several days. It turns out that my newest neighbors in the south house decided to steal cable and in the process, removed our services. Needless to say, they were caught and I was annoyed. I'm so glad that they could enjoy their free cable/internet at my expense.

Three out of the four of us have Ellie's cold....but Ellie is still by far the sickest.

I volunteered at the school bake sale today just for a break from my children. It was blissful. Draw your own conclusions on that one.

I may become the new PTA treasurer. Why is it that spreadsheets seem to follow me at every turn?

I spoke with my old, old boss today and it was great. Not only is it good to keep the connections...well....connected, its was just plain good to talk to him. I was really sad when he left Ford.

Our health insurance is going to be drastically different next year. Given all the medical expenses we incur, this is mildly terrifying. I cannot quite decipher whether the changes are favorable or not.

Gabe only has a total of four days of school for this week and the next. Draw your own conclusions on that one as well.

When I was talking to my oldoldboss, I mentioned that our best friends Liz and Chasen had moved to Texas. He asked me who we were hanging out with now and I said, "Well, nobody." I've been feeling very sad about it ever since. Its really hard to make friends, especially now that I'm not working.

My house is a mess and we have uncharacteristically eaten way too much fast food this week. I'm not sure what happened.

Reading over this post, I think I'm feeling a bit down.

My Day

2010-11-15T08:36:00.000-08:00

So how is your Monday going?

Grrrrr!

2010-11-13T13:31:00.000-08:00

I've been trying all day to get on Typepad and haven't been able to log in. So frustrating. Now the post I wanted to write will have to wait because its late. Plus, Ellie is sick (again) and off schedule and won't go to sleep now. She has taken to just randomly blowing snot out of her nostrils in snot rocket fashion, but when you hold a tissue to her nose, she won't do it. We've started calling her the tissue ninja because she can get her hands up and swat the tissue out of your hands before you even know what happened. Tell me, is there anything more sad than a baby who wants so badly to suck her pacifier but cannot?

Oddly enough, Gabe did not kick this latest cold-fest off. Although, yesterday he got off the bus and was visibly off and complained of being cold (which I've never heard him say). Last night was movie night at his school and he had woken me up that morning excitedly stating that fact. He did not want to miss out so he didn't want to let on that he didn't feel good. At dinner I took his temp and it was almost 102 degrees. Nothing was bothering him and his nose wasn't stuffy or running so I'm not sure what brought it on. After a dose of Motrin he perked up and we went to the movie anyways. This morning he woke up just fine and dandy. I don't know.

OK, if Typepad freezes up while I'm saving this, I will join Ellie in screaming.

Grrrrr!

2010-11-13T13:29:00.000-08:00

IEP Goals

2010-11-10T11:52:00.000-08:00

So I know I said I wasn't going to talk about Ellie's new IEP (individual education plan). However, I figured I should document it for documentations sake. Hopefully in a year from now I can revisit these goals and say that Ellie blew them out of the water.

Ellie is still receiving physical and occupational therapy in our home. A teacher comes to our house every Monday and is joined by either the physical therapist or the occupational therapist. They trade off weeks. Beans has two new therapists this year, but the same teacher. I am really happy with her team this year and Ellie seems to like them as well. Unfortunately, it takes about half of the hour long session for her to warm up. Even still, she is so shy, they never really get to see her personality or half of what she can do. In addition to the home visits, we can also attend the baby group once a week at the school. However, its at 9:30 in the morning and I would have to find a sitter for Gabe. Plus, the few times we did attend, Ellie didn't really care for it.

The goals are set by the teacher and the therapists, but I have to sign off and agree to them. I can also add any additional goals I would like to see met. I have deferred to the pros for both IEP's so far and have not had any issues. Last year, Ellie met and surpassed every single goal.

Ms. Jeanette's goals (physical therapist):

Learn/maintain cruising skills

Learn/maintain walking skills

Learn/maintain climbing skills

Ms. Becky's goals (occupational therapist):

Learn/maintain reaching skills

Learn/maintain finger control and grasp release skills

Learn/maintain bilateral hand coordination, transferring for object manipulation

Self feed finger foods with inferior pincer grasp

Drink from cup/straw

Tolerate/respond to/participate in tactile stimulation activities

Tolerate/respond to/participate in oral motor activities

Ms. Sandy's goals (teacher):

Look at familiar objects/persons when named

Imitate/initiate vocalizations and words

Point to/name people, pictures, and objects upon request

Ms. Jeanette had set some original gross motor goals for Ellie and by the time she came back two weeks later, Ellie had already met them so she had to make new ones. Its a good problem to have for sure. Its hard to imagine Ellie walking in the next year, but she always seems to surprise me.

I'm very grateful that these services are available to us for free. I'm also grateful that they come to my house. I think I would be lost without these people.

Here Comes Trouble

2010-11-07T11:22:00.000-08:00

Alrighty

2010-11-04T10:02:00.000-07:00

This morning I woke up with a raging migraine. The kind of migraine that causes your stomach to revolt against you, so much so, you aren't sure what is worse.....the headache or the stomach ache.....and instead of solving the puzzle, you curl up into a ball and hope for death to release you from your misery. Also, there is nothing like being interrupted mid-hurl to, "Mama, are you throwing up in there?" and the indignation that occurs when you don't quite have the ability to answer right then.

So Ben came home and I went back to bed for three more hours and now feel much better. Thank goodness.

Anyways.

16 and Pregnant....let's discuss. I'm pretty sure I know where my need to watch came from. I was fifteen the first time I had sex. My boyfriend at the time was a few years older than me (biologically, not in maturity by any means) and very hard for me to hold on to. It was a disaster of a teenage relationship and he was heavy into drugs and partying and had dropped out of high school. We spent most of our time fighting about him leaving me to go out, with him only really wanting me when I tried to break up with him. I don't think we even liked each other at all. I can't remember there ever being a time when we had fun together. Like I said, a disaster. One that went on for several years. During those several years, we did not use protection of any kind.

Can I just say, thank god for infertility! Let me say that one more time....THANK GOD FOR INFERTILITY!!

I would have been one of those girls. The one whining and crying at my absent, distant, oppositional boyfriend. The person struggling to finish school and pay for diapers. I would have been the girl sadly shaking my head when my best friend strategically asked me if we ever used condoms or the pill. My parents would not have supported me for sure. I remember a conversation my mom had with me one day when boyfriend and I started dating. I believe her exact words were, "I would not allow you to have an abortion. You cannot give a baby up for adoption. There is no way you can take care of a baby so you have no options." We had conversations about sex and protection in my house. I should have known better but I believed, like every other kid on that show, that it wouldn't happen to me. If not for infertility, it absolutely would have been me. I have no doubts.

My life would have been a disaster. Just the thought of being tied to the boyfriend for the rest of my life makes me shudder. He would have wanted to be a good father/partner, but I just don't think he would have had it in him. Ben and I would have never married. Would I have finished school or gone to college? How would I have cared for a baby at sixteen? It is hard enough at the ripe old age of 32 with a loving husband and father.

So that is why I watch the show. Because it makes me think about what could have been. Because it makes me grateful that "what could have been" was not. Plus, I can always feel myself pulling for the girls. I want them to accept the responsibility off the bat, ditch the loser guys when necessary, and finish school. I want to jump through the screen and give them hugs and support. I'm always a sucker for the underdog beating the odds.

I watched Teen Mom as well. Mostly for the couple that made an adoption plan for their daughter. On the finale, when they had a chance to visit the baby in person....I cried so hard. Buckets of tears. As a mother of a biological child and a mother of an adoptive child, it really caused a mountain of emotion.

Unexciting

2010-11-03T14:14:00.000-07:00

I've been laying here, staring at the curtains with the laptop balanced precariously across my stomach for about twenty minutes. I seem to have hit a wall today and have nothing to blog about.

I could tell you about Ellie's new IEP (individual education plan) but I'm the only one who really cares about that.

I could tell you about my day but I'm not sure you are interested in how I made homemade yogurt, ran the dishwasher twice, and did a load of laundry in addition to the normal day-to-day stuff.

I could tell you about my crazy new plan to make my own laundry detergent, but then I might freak you out and make you start to question if you even know me at all.

I could talk about more bad TV shows that I'm shamefully watching like "16 and Pregnant" but I've already kinda covered bad TV.

I could talk about how I read another book and what I thought, but nah.

And so instead I stare at the curtains, trying to be witty but coming up dry. Perhaps three blog posts a week was a bit of a stretch for me.

This picture......

.....reminds me of this old picture.

Ooookkkaayyy....well, I guess I will wrap up this unexciting post. It goes without saying....but I'm going to say it anyway.....I love these boring days. Keep 'em comin'.

Happy Halloween

2010-10-31T14:17:00.000-07:00

Gratuitous halloween pictures.......

Gabe's pumpkin

My pumpkin

Ben's pumpkin

And a rare photo of me and the kids (I'm always the one behind the camera)....and yes, I'm not wearing any makeup, don't poke fun.

Revamped

2010-10-28T13:36:00.000-07:00

Anyone who knows us, knows we love to paint, and then repaint, and then repaint again. With the exception of the mudroom, we have painted every room in our house. We've painted the living room three times, the nursery twice, and now our bedroom three times.

When we first bought our house, the master bedroom had ugly, worn out blue/gray carpet with no padding underneath. My neighbor told me that the previous owner bought used carpet that was in the display for the Detroit Auto Show. No wonder it sucked. For some strange reason, we decided that we would paint all the walls AND the ceiling a light blue. We then added blue curtains to go with our blue plaid comforter. Egad! What the crap were we thinking! To make matters worse, we didn't have enough paint to cover all the walls and ceiling so there were white cloud patches bleeding through where the paint coverage was thin. It was like sleeping in the sky....only not in a good way.

Exhibit A:

By the way, doesn't that bed in a bag set look like it belongs in a dorm room? Sadly, I bought it for us when we were first married. In my defense, I was just twenty-two.

A few years ago, we purchased new carpet for the living room and the master bedroom. We bought a just slighly off-white carpet for our room. Prior to having the carpet installed, we decided it was a good time to paint the room again. We looked at a bunch of colors, but ended up back at blue for some reason. We chose what we thought to be a nice deep denim-type blue. Weeeellllll, that blue didn't quite go on the walls exactly as we imagined it. After three coats (and repainting the ceiling white this time), it looked like someone stretched a smurf across the four walls. I hated it from the start, but Ben said to me, "Don't even ask me to repaint this room." So I kept my thoughts to myself for awhile, instead choosing dark chocolate brown curtains and a matching solid brown bedding in an effort to mute the electric-blueness of the walls. It helped slightly, but mostly just ended up causing the room to be too dark, despite there being three very large windows.

Exhibit B: (I don't have an official picture of the room, that's how much I hated it. I just have this pic of Gabe jumping on the bed. In it, you can see the wall and the curtains. The brown bedding was waaayyyyy too hot for summer so its not on the bed. For that matter, it was wayyyyyy to hot for winter too. We could never sleep under it, at night I would remove it and we would sleep under the comforter shown in Exhibit A. See, that room decor was a disaster all around)

As I said before, Ben had stated that he would not, under any circumstances, repaint the bedroom again. However typically, if I have my mind set on something, I can swing his vote. I let a year go by and started commenting (by way of joking) about sleeping in a smurf room. Eventually, Ben agreed that it didn't exactly come off as planned. We started discussing what we would maybe do differently with the room. What finally did it was the bedding. As I mentioned, we really hated the sweltering-ness of the brown comforter and the fact that we had to have a sleeping comforter and a decorative comforter was just plain ridiculous. One day I was flipping through the Target ad and saw a comforter set on sale that I loved. About a week later, Ben showed up after work with it in his hands. What do you know, that very weekend we were painting again. I am much, much happier with the room now. I wanted it to be light and airy, mission accomplished. We painted the walls a grayish-creamy beige color. This way, I can change bedding however I want and not worry about it matching the walls. I also bought some new sheer curtains for the windows that allow the sun in, but add a bit of color to the room. Finally, we purchased and hung some new art on the wall. The room looks a million times better and I love waking up in it now.

Exhibit C:

I probably should have taken this picture during the day. Maybe I will swap it out tomorrow. Also, ignore the corner of the treadmill and the sweater drying rack.

On a completely unrelated note, I had to scan that first old picture in. Now that I know how to do it, I will have to share some old, funny pictures of Ben with his long hair and crazy wide leg pants. Tee hee hee!

I've Had It Up To Here!

2010-10-26T13:12:00.000-07:00

My friend was over a few weeks ago, lamenting the newborn stage. My SIL often stated the same thing, that she hated the newborn stage.

Not me.

I mean, I understand where they are coming from. The sleep deprivation, the crying, the inability to communicate their needs, the constant nursing/bottle feeding. It is a hard time, no doubt about it. However, I definitely enjoyed Ellie's newborn stage much more than I am enjoying Gabe's five year old stage.

Why?

Good grief.....I can't take the arguing anymore. I am so sick to death of it. Every, single thing I ask of him results in arguing/bargaining/pleading/whining/sighing, etc. Every.Single.Thing. I just can't take it anymore. Tonight I had to send him to bed an hour early. It was either that or stab myself in the temple with my dinner fork. Before, he was simply disobedient. Typically this meant he was ignoring me. However, the arguing is taking that to a new level. I actually miss being ignored.

I feel mentally and emotionally exhausted by the end of the day. Is this a stage kids go through at this age? Is it going to pass? Or is this how its going to be until the day he moves out?

At least newborns can't talk to you. You just hold them, feed them, and change their diapers. They can't tell you "no" or debate why they must come to the table to eat and didn't you just say come to the table and not sit in the chair and I'm busy drawing this picture anyway so I can't eat dinner right now and I don't need to take care of my dishes can't you just do it......and so on....and so on.....

Conversation

2010-10-24T09:56:00.000-07:00

Me: Don't you think "shampoo" is a funny word?

Ben: ?

Me: Say it a few times....shampoo, shampoo, shampoo, SHAAAAMMMMPPPOOOOOO

Ben: ?

Me: shampoo

Ben: Its kinda like when you sit down because you think you gotta go, but its just gas.....its a shampoo.

Book Recommendations

2010-10-22T13:02:00.000-07:00

I love to read. I consider it such a treat to go to the library (by myself) in the evening and browse through the books. I usually will choose one book from each aisle and leave with 7-9 books. I don't really have a rhyme or reason to choosing them, as I've said before, I usually pick the book by the cover.

Its been a long time since I've read a book I really liked. Usually I finish a book and say to Ben, "Well, that was disappointing." It seems that books fall into two categories.....plot driven and character driven. Obviously, any good book has elements of both, but the main thrust tends to fall in one or the other category. I like both types, but find that character driven books are the most appealing. I love reading about how events shape people and how they change and grow.

I just finished reading a book I thoroughly enjoyed. It was called, "This is Where I Leave You" by Jonathon Tropper. It certainly fell in the character driven category. It was about a man whose father passed away and his dying wish was that his family sit shiva for seven days. The book covers these seven days with the family staying in their childhood home. I loved all the characters in the story....each family member had their own issues and quirks. It was so easy to picture the characters in my head. The story had the perfect balance of resurrecting the past and dealing with the present. I found the dialogue hysterical and Ben kept asking me why I was laughing while I was reading it.

So if you are looking for a good read, I highly recommend this book. If you happen to read it, drop me a comment and tell me what you think.

Spiral

2010-10-19T13:24:00.000-07:00

Remember when I said most days I don't even think about hydrocephalus?

Well, today I'm going to talk about the non-most days.

Sometimes I go through these periods of intense worry, anxiety, and stress about Beans. Times like right now. This typically happens when we discover some new issue with her or if something goes awry (or at least I perceive it to go awry). It was the former that set me off this time.

It seems that one of Ellie's legs is longer than the other. The other day I was changing her diaper and she had both of her legs up in the air. I noticed that the leg with her club foot wasn't quite as long as the other leg. I mentioned it to the physical therapist on Monday and she said that she had noted that the last time she was there. Its interesting that she didn't say anything to me....but none of the teachers will. Maybe they are familiar with the worry cycle (as I'm sure I'm not the only parent to do it).

The spiral always starts with me wondering how so many odd things present themselves in this one tiny body. Was it merely a bad genetic draw? Is it cause-and-effect, with the one or two major issues spilling out to cause the other minor issues? Is there some underlying rare condition that binds them all together? Are we going to end up on Mystery Diagnosis? Then it all starts to feel overwhelming.

The second part of the spiral is me wondering what oddities await us? I worry about how she will be socially. Will she ever start looking people in the eye instead of looking past them? What if she never talks? What if something goes terribly wrong with her major organs? What if it becomes life threatening? What if there is a ticking time bomb waiting to explode in our faces? The what if's can be paralyzing.

The final spiral phase is depression. I feel sad that any of this happened to Ellie in the first place. I'm upset that she will have to deal with these issues for her whole life. I wish I could go back in time and fix it all...as if there was a way to do that. I want so much for her that my heart aches and I feel so limited on what I can actually do about it. Why my Ellie Beans?

Don't get me wrong, I'm not feeling sorry for myself....or for Ellie. That's not it at all. However, I'm not really sure I can explain the worry and the whys that accompany having a child with special needs/disability. Before I had Ellie, I thought I knew how it would be.....but you never really know until you are there. I guess I just needed to put my thoughts out there, so maybe they will stop haunting me.

Cooked

2010-10-16T13:59:00.000-07:00

We are on round two of colds now. Everyone got better and then one day later, Gabe started coughing again. Sure enough, Ellie started after only being well for about three days. Its tolerable when Gabe is sick, in fact, you wouldn't even know except we go through significantly more tissues. I've only seen him actually act sick twice in his whole life. Otherwise, nothing stops that boy. Ellie, on the other hand, cripes! The drama, the crying, the non-sleeping....its debilitating. Plus, she stays sick FOREVER. So between Ellie not sleeping (at night or for naps) and Ben working late all week, and this morning, and then going to the football game today....and I've had enough. Take me out of the oven because I'm cooked.

In an unrelated, yet related, story. Today Ellie tried to eat a piece of paper, gagged, and then puked. All while I was actually, thrillingly, having a conversation with another adult on the phone. It smelled strongly of grilled cheese.

All this to say that I don't have it in me to write a decent post today. So instead, I will share with you a conversation that I found unnecessarily hysterical yesterday. Then you can be the judge of just how loopy I am.

Ben (upon seeing some geese flying in the sky): Hey, someone should tell those geese they are flying north.

Me: It doesn't really matter, canadian geese no longer migrate anymore.

Ben: Yeah

Me: Yeah. They're just a bunch of posers

Ben: Yeah, just call them poose.

Oh, how I laughed. I laughed until I cried.

Someone help me.

Now, if you want to read something really funny....read this blog post.

It Was a Year Ago....

2010-10-14T13:24:00.000-07:00

...that it all started. I think all it took was for the leaves to start falling and Ben to start coughing with the cold we've been trading around, and I was right back to last year.

The cancer society has been running those commercials lately, talking about how they sponsor more birthdays. Ben said to me the other night, "Its funny, but I don't remember these commercials last year." They ran though, I vaguely remember. Now I notice every single one. I always stop what I'm doing and watch it. Thank God for more birthdays.

Ben says he doesn't feel like a cancer survivor. He says it just feels like something he had to go through a long, long time ago. I guess it doesn't feel like he had cancer to me either. Yet, chemo sucked! I guess that is what sticks with me more than anything. Everyone said the treatment is worse than the cancer, and they were right.

I'm so, so glad that time is over. I hope to never revisit it again in person. I prefer to hide it in the depths of my mind, to be trotted out for brief periods to remind myself that things are better now. I look forward to living everyday, with my husband. The man I love. My cancer survivor.

I Give Up

2010-10-11T02:02:00.000-07:00

My Love of Cloth Diapers

2010-10-09T15:44:00.000-07:00

When my best friend Liz told me she was going to use cloth diapers, I looked at her like she was crazy. Gabe was about three at the time and not quite potty trained. Gabe eats a lot of fruit and well....you can imagine where I'm going with this. My thought on cloth was, in a word, gross.

When I was pregnant with Ellie and on bedrest, I had a lot of time to fill. After awhile, I ran out of my usual things to surf on the web. I started, just out of boredom, to look at some different cloth diaper sites and product reviews. I had seen first hand how easy cloth was for Liz, so my mind had been opened to it a bit. Plus, I refused to buy Pam*pers anymore due to their partnership with UNICEF and no other brand had really worked with Gabe. I also knew I wasn't going to work anymore and I had financial considerations in mind.

Initially, I was drawn in by how cute the cloth diapers looked. I also found that they could be very simple, with many not needing any pinning at all. Several kinds came on and off just like a disposable, only you washed them instead. It seemed as though the most complicated part of cloth diapering was the wash routine.

I started buying a stash of diapers during my bedrest time between my two hospital stays. Each day, I would look forward to the FedEx or the UPS man to visit my door so I could pour over the cuteness of my diapers. After that, there was no turning back. When Ellie first came home, she was way too tiny for even the smallest cloth diapers. Even the preemie disposables (which only Pam*pers made..Ugh!) were huge on her. It was a few months before I was able to start putting my cute little diapers on her hiney. Now we only use disposables if we are going to Children's or we are going to be gone from the house for most of the day.

I use two different kinds of diapers on Ellie. The first kind is called a pocket diaper. These are diapers that have a pocket where you stuff the absorbant material inside. The diaper is then put on like a disposible. The nice thing about these diapers is that they are easy to put on and you can stuff them with various amounts of absorbancy. The particular diaper I bought is made by Bum Genius and its their one size diaper. It comes with snaps on the front so they can be made smaller or larger and essentially grow with the baby. The downside with these diapers is that they are more expensive and I've found them to be a bit bulkier.

The second kind of diaper I use is a prefold with a cover. The prefold is the cloth that you most often think of when people say "cloth diaper". I like to use a Thirsties cover. These come in a ton of cute colors and patterns. The prefold is either folded in thirds and simply layed in the cover or it can be pinned or Snappied on the baby and cover is then put on over the cloth. The covers velcro over the cloth part like a disposable would go on, they are not like the plastic underwear pants of the past. The benefit to this method is that it is cheaper. I've also found it less bulky. You only need a few covers since they can be reused between washes and several of the prefolds. The downside is that you do have to buy several sizes as the baby grows. Also, they are slightly more difficult to put on a wiggly baby.

The washing of cloth diapers is obviously what gives most people the "no-ways" about it. However, I've been doing it for a year now, and honestly its no big deal. If there is just pee in the diaper, simply throw it in the diaper pail. No rinsing or anything needed. If there is poop and its solid (sorry), then simply shake the poop into the toilet and then throw the diaper in the pail. If the poop is loose (sorry) or if the diaper has some poo on it, then I will let it soak in the toilet for a bit. After its soaked, I don some rubber gloves and rinse it out in the toilet water, wring, and throw in the pail. Its not really any grosser than cleaning off a poopy butt with wipes. In fact, even Ben agreed that its no big deal. I have enough diapers in my stash to run a load every third day. I wouldn't want to go much longer than that or they will start to smell (and the pail is full by then). I run the diapers through one washing in cold water with slightly less than 1/2 tablespoon Allen's Naturally detergent. Typically, I will set the washing machine to soak the diapers for 15 minutes before running this load. I will then run the diapers through a hot washing with another 1/2 tablespoon of detergent and then do an extra rinse cycle. Once clean, I dry the prefolds and any inserts in the dryer. I hang the covers and the pocket diaper shells up to air dry (the dryer ruins the velcro tabs and wears out the laminate coating that keeps them waterproof). That's it. Not nearly as overwhelming or gross as one would think.

A note about detergents: It is critical when choosing a detergent to pick one that does not have enzymes in it. Most commercial detergents you can pick up at the grocery store have these enzymes. The problem is, that this what the bacteria is eating that makes the diapers (and your washcloths, towels, etc.) smell once wet. Even the detergents marked "Free and Clear" tend to have these enzymes. After a ton of research, I chose to go with the Allen's Naturally which I purchase online. The bottle costs me $20 but you only need less than 1/2 tbl per load. My last bottle lasted over six months. I've also started using this detergent for all of my towels and washcloths and now they never have that nasty, musty smell when wet. Similarly, you never would want to use fabric softener or dryer sheets on diapers for the same reason.

So that is probably more than you ever wanted to know about cloth diapers. Just like last Saturday was more than you ever wanted to know about making jam and the Saturday before that was more than you ever wanted to know about applesauce. Maybe this will be my Saturday theme....."more than you ever wanted to know".

PS - All of my links go to the Cotton Babies website. Not to state the obvious, but they didn't pay me for this. Its just, that is where I buy most of my stuff and I've been very pleased with their customer service.

I Wanted To Share This With You

2010-10-07T13:53:00.000-07:00

I wanted to share this with you a year ago when it first aired last Thanksgiving. This is a video that the local TV station ran on hydrocephalus. I met the father in this video at one of the few Early Intervention baby groups I attended. His son is about five months older than Ellie. He is doing really well too, but his head was considerably larger than Ellie's, proportionately.

I like this video for several reasons. First of all, I can completely relate to the emotions the family speaks about. I also think they present a very good explanation about what a shunt is and how it works. However, the surgery part is hard to watch because I can't help but picture Ellie on that table. Finally, Dr. Sood is Ellie's neurosurgeon too. Out of all the doctors we see at Children's, Dr. Sood is my favorite by far. Whether he actually does or not, it always seems like he remembers Ellie.

Anyways, I hope you watch it. Its not too long.

Tell Me I'm Not the Only One...

2010-10-06T13:23:00.000-07:00

...watching Sis*ter Wives on TLC. That way I don't have to feel so bad. I watched the first episode just out of boredom and curiosity, but the next thing I know I'm DVR'ing it the next week. Here are my observations thus far:

They are trying really hard to come off like this "normal" family. Two of the women work, they don't wear weird clothes or have eighties hair. Still, I just can't get there.

I find it interesting that they are not religious, but instead view it as a lifestyle choice. Did you catch the part where they said they didn't care what religion or faith their kids had as long as they decided on their own.

Seriously, what does this guy do career-wise to afford that house, all those kids, and that trying-too-hard-car.

The guy, Kody, really rubs me the wrong way. He creeps me out, especially because he seems just a little toooo pleased with himself. Its like he's trying to hide the fact that he really thinks he is the king. Plus, his floppy hair bugs me....and the way he's always caught on camera in his pajamas. Yuck.

The first wife, Meri, only has one child. She says in an interview that she had a hard time with it for awhile, but now she's OK with it. However, if you are a long time infertile and watch her face, you can see that's not completely true. Infertility is hard enough, can you just imagine how awful it would be to have your husband's other wives popping out babies left and right. That classifies as torture in my book.

The first wife is also responsible for bringing Kody and the soon to be fourth wife together. However, she is the one claiming all these feelings of jealousy. Why create the drama in the first place then?

So, if you watching this show and are willing to out yourself, what are your thoughts?

**This post is brought to you courtesy of colds-for-all-the-Nelson's. Thank you Kindergarten.

All Jammed Up

2010-10-02T14:39:00.000-07:00

As I mentioned in a previous post, making jam is more method than recipe. Not that the recipe isn't important, it is very important if you want your jam to set. It is just that the recipe is given in the directions included in the box of pectin, and you will want to follow that to the letter. However, I stray from their method of jam making, in lieu of something a bit easier.

Typically you will need the following to make jam:

Jelly jars

Brand new lids for the jars

The screw bands that hold the actual lids in place (these should come with the jars, but you can buy them separately if you don't have them)

Fruit (see pectin instructions for exact amount)

Sugar (see pectin instructions for exact amount

Lemon juice (see pectin instruction to see if this is needed and if so, the amount)

A box of pectin (this can be found in the canning aisle and its called SureJell or Bell makes their own version which I think is simply labeled "pectin")

Two large pots

A wooden spoon

A pair of long tongs

A ladle or a one cup measuring cup with a spout for pouring the jam into jars

A spoon

A small bowl

Clean, damp washcloth

Kitchen towel you don't mind staining

In one of the large pots, place all of your clean jam jars, lids, and screw bands and cover with water. Bring to a boil and continue to boil throughout.

Prep your fruit according to the directions in the pectin box. Typically, you will put the fruit, pectin, and any lemon juice in the pot first. Then you will bring this mixture to a full rolling boil while stirring constantly. This takes awhile (hence my picture in the post). After that you stir in all the sugar and bring it back up to a full rolling boil. I believe you boil it for one minute. The mixture will usually foam up during boiling so after you turn off the heat, you will want to skim off the foam with the small spoon and deposit it into the small bowl. For this part of the process, I comply with the pectin directions.

Once the heat is turned off, you will want to work as quickly as you can since the jam will start to set up as it cools. You want it to set in your jars and not in the pot. Here is where I deviate from the pectin directions a bit. Using the tongs, fish a jam jar out of the boiling water and give it a bit of a shake to drain the water off. Grab the jar with your kitchen towel and use the ladle or measuring cup to pour the hot jam into the jar. You will want to take care not to splash the jam on the jar as much as possible. You will want to fill the jam within a quarter to an eighth of an inch of the top of the jar. Using your damp washcloth, wipe the top rim of the jar, making sure there are no drips so that the lid will seal properly. Grab your tongs and fish out a lid and quickly place it on top of the jar (lining it up as best as possible). Tighten the screw band on top firmly and turn the jar upside down and set off to the side. Repeat with remaining jam. You will probably end up with some jam that doesn't quite fill a jar, make sure to put that directly in the fridge and use it first. You cannot properly seal a jar that isn't full. After ten minutes, flip the jars right side up and set them some place where they will not be disturbed for twenty four hours. You should start to hear a "pop" sound which means that the jars have sealed. It sounds the same as when you open a sealed lid (like on a pickle jar). Keep your ears opened to hear all of the jars "pop". It could take up to a half an hour. However, don't panic if you don't hear them all "pop". If you examine the lids, you can see which ones have sealed. Look at the middle to see if the lid is slightly concave. You can also lightly tap the middle of lid with your fingernail. If it sounds hollow, it probably didn't seal. Compare any questionable jars to the sound of jars you know sealed.

That's it. The whole process is actually very simple and the longest part is simply prepping the fruit.

My MIL has been preparing her jam like this for 30 years and I quote, "I haven't made any one sick yet." And hey, neither have I. Which is always a good thing.

So give it a try and let me know how it works out.

A Post About The Gabbers

2010-09-30T12:37:00.000-07:00

OK, is it just me or does Typepad look different? Also, the font selections are different and the one I was using previously isn't available. Weird.

Anyways.

I was looking at my recent posts and I realized that I haven't put up a lot of pictures of Gabe. This is for two reasons. The first is now that he is in school, I have less opportunities to snap shots of him. Secondly, when I try to take his picture, he runs away and hides. I looked back over the last month and these are the only non-face-hiding photos I have:

OK, well, there were three but after I put them in my post I realized that third one had my underwear in the background. Since I've already been banned from putting my underwear on the internet, I couldn't put that picture up.

Just so that I can remember, some Gabe-isms

Gabe likes to use the word "mine" instead of "my". For example, "I'm covering mine eyes." Its so cute that we have never corrected him.

Instead of saying "my hands are full" he says "I have too many hands"

Instead of saying "wait for me" he says "wait without me"

The other day when Ellie's teacher and therapist was here, Gabe poked his head into the living room and said, "Ms. Sandy, you have 43 minutes and then you are sooo out of here."

After eating that freeze pop in the picture above Gabe came up to me and shoved his hand in my face and said, "Look at my hand, its in your face, and its freezing." Except he said it with this tough guy Brooklyn accent. It was hilarious.

Finally, except for a few additional emotional breakdowns, things have kinda settled Kindergarten-wise. I think he also made two friends (both of them girls) because I've heard a few stories about a Maggie and an Ava. That is a relief to me. He seems to really like it. In fact, when school was cancelled last Friday, he was incredibly disappointed. We will see how long it lasts.

Consistently Exceeds Expectations

2010-09-29T01:26:00.000-07:00

When Ellie's EI teacher Sandy said she thought Ellie would move from her inchworm crawl to a formal crawl in about 2 weeks, I didn't believe her. She had been inch worming for months with no attempt to take it to the next level. Sure enough, she was right. My girl....she is always surprising me with what she can do. My goal was for her to formally crawl by eighteen months, she is just over fifteen.

Way to go Beans!

Hel-moot

2010-09-25T12:00:00.000-07:00

Yesterday Ellie had an appointment with Dr. Helmet (I'm just giving her that name now that we are practically done there). The appointment was scheduled for 1:20, which meant I probably wouldn't see her until at least 3:00 because that is how they roll over there. I had arranged for my MIL to pick Gabe up at the bus stop, but as it turned out, school was canceled on account of no power due to the insane wind we were having. Thankfully, she kept him anyways. I think I've mentioned before that he turns into a maniac at doctor's appointments.

Typically, Dr. Helmet's waiting room is packed with people, kids, and strollers...in fact the masses tend to spill over into the hallway of the hospital. Imagine my surprise when I opened the waiting room door to...no one. We were brought back to a room right away. I would blame it on school starting, but we started seeing her in March. Ellie was not pleased to be there. In fact, all we have to do is enter the parking garage at Children's and she starts crying, plus she was missing her nap.

My pediatrician seems to think that Dr. Helmet poops rainbows. She frequently proclaims her a genius and says she felt honored just to be in her presence when her son was in a helmet. I don't know. I never see her for more than three minutes (seriously, no exaggeration) where she merely measures Ellie's head, dishes out a one sentence instruction to me, and then bustles out of the room sending me on the way to her disgruntled office staff. Genius? Possibly. But I'm pretty sure I could measure her head and determine whether or not its symmetrical.

Since Ellie was the only patient, she actually stayed for about six minutes. We reviewed the pictures they took at each appointment so we could see the progress she had made. Dr. Helmet proclaimed her a success and said that we should have one more appointment when Ellie turns two, and unless something goes drastically awry, I wouldn't need to see her anymore. Yeah!

After Dr. Helmet leaves patient's rooms, she dictates her report into a mini tape recorder. She does this right at the reception desk so parents can hear everything that she says. Her dictation always includes all the other health issues with the child. I often hear her add that the child "looks well nourished, healthy, and thriving." Its funny, but she never adds that to Ellie's report. Maybe I should be offended.

I certainly won't miss you stinky helmet.

Even if it was stinkin' cute when Ellie's hair would poke out of the top like a little fountain of blondeness.

Not Another Excel Spreadsheet

2010-09-23T13:32:00.000-07:00

Yesterday my former boss called me out of the blue. He said that they hadn't yet filled my old position and was wondering if by any chance I wanted it back before they tried. I was kinda surprised by the question, if anything I thought he was going to ask me if I wanted to work on a project from home. In any event, I told him that I hadn't given work much thought at all lately (except for my last post of course) but that I was very happy staying home with the kids.

I am very happy at home with the kids. Oh sure, I have days where they make me absolutely crazy...days where I think I might lock myself in the bathroom just so I can eat my lunch in peace. But, I'm glad I can be there to walk Gabe to the bus stop and (except for the other day when the bus came way early) be there when it the bus drops him off. I'm thrilled to be the only one taking care of Ellie. With everything that she has been through, I don't know what I would do if I was forced to work.

Even beyond that, I don't know how I would work it if I had to go to an office everyday. What would happen with Ellie's therapy? Its run through the school system and they don't do home visits in the evenings. How much work would I have to miss for all of her appointments? How would I find the right person to spend an hour feeding her breakfast and then another hour feeding her lunch? Not to mention, it was hard enough just trying to get Gabe out of bed, dressed, fed, and off to daycare with all the appropriate items. I cannot even imagine trying to do that with two kids. I know people do it everyday, but man, there were some days I felt like I had trekked through a whole day before I even made it to work in the morning. I certainly don't miss those days, let me tell you. I would much rather eat my lunch in the bathroom.

Anyways, I'm not really sure of the point of this brain dump except to say that I'm really grateful I don't have to work right now. I'm grateful that Ben has a stable job that pays us just enough to get by. I'm grateful that we lived within our means the first ten years of our marriage. I'm grateful that we stayed in a house that we can afford, even if its not ideal and we still talk about the one that got away from us. I'm grateful that I get to be with my kids instead of making yet another excel spreadsheet about taxes.

On a completely unrelated note, does anyone have any questions for me? Since I'm commited to blogging three times a week, I'm open to discussing anything.

Weird and Random

2010-09-21T13:52:00.000-07:00

I'm watching Biggest Loser, the first challenge and thinking..."Gee, that building sure looks familiar". Oh yeah, familiar all right. That is my former place of employment, the Ford world headquarters building. Just seeing that glass house makes me shudder a little. I bet Ford paid a pretty penny for that advertising. Although, it would have been pretty cool to watch that from my office window (except my office faced the back, but you know what I mean).

On another note, my computer got infected yesterday with a virus that put p*orn icons all over my desk top (among other things). I was yelling, "Son, turn your eyes away" while Ben laughed hysterically on the phone at me freaking out. Thankfully, he fixed it so I'm back online today. Just a word of warning, don't use Swag*bucks....well, unless you like pictures of girls covered in whip cream on your desktop.

Look! First pony tail!

Slapplesauce**

2010-09-18T15:39:00.000-07:00

Here goes my first official tutorial.....how to make applesauce.

The first step is preparing the apples. I like to do about 12 lbs of apples in a day. I usually use Jonamac apples from the regular ol' grocery store. I've done bushels of orchard apples in the past but honestly, you can't really taste the difference. Save the more expensive orchard apples for pies or eating and use the cheaper store apples for sauce. If you can't find jonamacs, I've found macintoshes, jonathons, or cortlands are good. You would not want to use red delicious apples for this.

You need a nice big cutting board, sharp knife, vegetable peeler, one or more large pots, washed apples, and a bag for peels/cores. You don't necessarily need a giant knife like mine, that is just my go-to-knife for just about everything. I love that knife. I usually prep my apples one, three pound bag at a time to keep my hand from cramping.

Next you need to remove some, but not all, of the apple peel. I like to peel one circle at the top, one in the middle, and one on the bottom. You want to leave some peel on because that is where the bulk of the apple flavor is contained. Have you ever noticed that a peeled apple doesn't taste quite as good?

Dice the apples and toss in the pot(s). The smaller you dice them, the quicker they will cook down. Repeat until either (1) You run out of apples, (2) You run out of pots, (3) You run out of patience for peeling and dicing apples.

Add water to the apples. Unfortunately, I can't tell you the exact amount. It depends on the size of your pots and the apples themselves. You will want enough water to cover the bottom of the pot so that the apples don't burn. The water will also help to transfer the heat to the apples. However, if you add too much water your applesauce will not taste good because watered down anything lacks flavor. In my big pot shown here, I started with about 2 cups of water and ended up adding a little bit more (maybe a half a cup). Once the apples start to cook down, they will lend their own juice to the pot and this will help them cook down. Cook the apples on medium low to medium heat. You don't want them to boil, maybe just under a simmer. You will want to stir the apples frequently and rotate the bottom apples to the top and vice versa.

Once the apples have softened and begin to look like the picture above (it will probably take several hours...this also depends on the kind of pot you use, the apples, and your stove) its time to move on to phase II of applesauce making....saucing the apples.

Gather up your phase II tools. You will need a blender (a normal stand blender would work but I like my immersion blender) a ladle, a colander, a large bowl, a large spoon or spatula, sugar, cinnamon, containers for storing the applesauce, a measuring cup, and a smaller bowl (optional). Just a quick note about the colander; I use a special colander just for this purpose. However, I'm sure you could get a regular colander to work provided the holes were small enough. You could also leave your applesauce lumpy. I cannot however, because Ben does not like lumpy applesauce.

Blend your lumpy applesauce until its mostly smooth. There will be some skins and lumps left over. Mine looked like this:

Next ladle the sauce into your colander to remove the skins and lumps.

This is the gunk that was left after I pushed through the first few ladles of sauce. Yuck! I usually will have to do some interim rinses or the peels will clog the holes too much. Because of the way my colander sits in a stand to suspend it over a bowl, I usually fill the small bowl and then dump all the sauce into one large bowl before adding the sugar and cinnamon.

Stir in your sugar and cinnamon (if desired). The amounts depend on the apples used and personal preference. I recommend starting with less than you think you might need and...

.....employ a taste tester as you go. I suggest adding the sugar and cinnamon once the applesauce has cooled a bit. I've found that it tastes very different when its hot vs. cool/cold. This could really change the amount of sugar you want to use.

Ladle the finished sauce into whatever containers you want to use. I have a zillion of these containers that are made specifically for freezing or preserving. They are pretty cheap and come in various sizes. I use them for everything. However, I'm sure any ziploc or gladware container would do. I'm not sure I would want to store this in baggies though. I usually chill the sauce in my fridge overnight and then move it straight to the freezer. When I'm ready to use one, I just pop it in the microwave and make sure to give it a stir every couple of minutes. I've found that the flavor is much better after freezing than when its made fresh.

My twelve pounds of apples yielded six quarts of sauce.

So there you go....that's how I make my applesauce. Its delicious and definitely worth the work and I guarantee that your kids will love it.

**We were on a streak for awhile when I was pregnant that we ate ground turkey sloppy joes, applesauce, and corn for dinner since it was fast and easy for Ben to prepare. Since the sloppy joes and applesauce were always together we started referring to it as slapplesauce.

I Knew It Was Coming

2010-09-15T15:02:00.000-07:00

Before I officially begin this post, I wanted to make an announcement. Given the interest in applesauce making, I will do a little tutorial after this weekend's saucefest. I will share how I do my jam, too. Although, its more method than recipe.

Onward.

Things have been going well in the Kindergarten arena. Even the bus situation is running smooth (even if it does drop off twenty minutes later than the listed time). In fact, only Ellie does the crying at the bus stop. She is terrified of the bus and god help me if I run out of graham crackers during our extended wait. Despite the smoothness of the first few days, I knew there was a silent ticking time bomb of pent up emotion just waiting to blow up and scream at me at inhumane decibels.

The other morning Gabe was reenacting some ancient battle between Spiderman, The Hulk, and a Little People school bus driver. The battle was getting rowdy, as they tend to do, and I asked Gabe to lower the volume a tad. This request repeated several times before he was asked to move the battle into the next room. Once in the next room, the battle became even louder...as if it was occurring in the crook of my ear. Once again, I requested things be a little quieter. Well, something must have snapped in Gabe's brain because he came stomping into the living room, tears flowing and yelled, "Fine! You don't even want me to talk to you and YOU DON'T EVEN LOVE ME!!!" This was followed by him stomping up the stairs to his room.

Now, I've gotten the "you don't even love me" line before. He likes to change it up with "I'm the baddest boy ever". He knows that he can get a swift reaction out of me using either one. Of course he does, I fall for it every time. I let him stay upstairs alone for a few minutes and then went up to talk to him. I told him that I do love him and I never said that he couldn't talk to me. His reply was, "Yes you did. I'm not going to come downstairs. I'm not even going to eat lunch. AND I'M NOT GOING TO KINDERGARTEN!!" This was followed by more stomping around his bedroom. I asked him if it was Kindergarten that was really bothering him. He finally sat down next to me and said sadly, "yes". We talked about it for a few minutes and he told me he is scared and that he misses Ellie and me. Afterward, I asked him if he would like to come downstairs and he repeated his stance about absolutely not coming down. So I took a quick shower and then came back up under the guise of making beds. Gabe was being pretty quiet. As I was heading back down the steps, he came running down the hall, "Hey mama, wait!" He met me midway down the stairs and flung his arms around my legs, "I'm sorry I said I wouldn't talk to you or come downstairs and I'm sorry I said you didn't love me." He repeated his apology several times before school started.

That day, Gabe was hesitant to get on the bus for the first time since school started. He came back twice for hugs. I told him that he wouldn't even think of me once he sat down and started his day. After school was over and the bus dropped Gabe off, he was fine and barely tolerated the hug I gave him. On our walk home from the bus stop he told me, "Mama, you were wrong, I thought about you the whole time I was on the bus." I asked him what he thought about and he answered, "That I love you." That kid, he melts my heart.

Things were better today. I knew that he was going to have some sort of extreme emotional something regarding school. He is pretty sensitive. I hope things continue to go smoothly...and he makes some good friends. He is so shy around other kids (not so much around adults). Everyday I ask if he talked to any kids or made any friends and he tells me "no". That breaks my heart a little. I know how it feels to be the shy kid. I was painfully, painfully shy as a child. He is so sweet and funny, he would make a great friend for sure. He had two really great friends at his old school (one boy and one girl)...so I'm sure it will just take some time.

My final comment regarding Kindergarten (for now at least) is that I did not cry the first day...well, at least until I got home and saw Gabe's best bud Stan lying neglected and alone on the living room floor. For some reason that got to me. I guess Gabe's mama is a little sensitive too.

Preparing for the Long Hard Winter.....Or Something Like That

2010-09-13T14:57:00.000-07:00

Sometimes I must think I'm in Little House on a Prairie. Well, if there were modern appliances and deep freezers in Little House on the Prairie. Similar to how beaver's build extra thick dams before really cold winters** I've been jamming, freezing, saucing, and syruping like no other year.

It all started with the jam.....all 37 jars of it. I made two batches of strawberry jam, one batch of triple berry, and three batches of peach. Yes, we will probably consume all 37 jars. Gabe eats PB&J every single day for lunch without fail and Ellie likes to have her morning waffle slathered in triple berry (no peach for her thank you very much). Ben and I also like to sample the yummy goodness from time to time as well. Last year, I only made about one third the amount of jam and we ran out about half way through the year. This was a travesty because going back to store bought jam after eating homemade is rough. The stuff is barely edible. Yuck!

In the midst of my marathon jam making, I started freezing in season fruits. It was harmless at first, a couple pints of blackberries here, some sliced strawberries there, it couldn't hurt to throw in some Michigan blueberries, right? Late August is peach season here in MI, and MI peaches are amazing. They taste sweeter and juicier than any California or Georgia peach. I've been doing peaches for years now with my MIL. She picked me up a bushel at a local farmer's market and once ripened, we peeled, sliced, and froze them in a light simple syrup. I think I have about 20 quarts in my freezer now. These are Gabe's favorite for sure. He especially likes to drink the syrup after consuming all the peaches. They are so good and fresh in the winter....like a little bite of summer.

I don't typically do a lot of veggies. Last year I tried freezing green beans however, when I cooked up the first batch I quickly discovered that they were limp and disgusting. There really was no recipe to resuscitate the flavor or texture. I was pretty disappointed about that. I have had a lot of success with corn, though. This year I did 65 ears of corn which yielded 26 one and a half cup bags of sweet michigan corn. That is the perfect portion for us as a side for dinner. While time consuming, corn is pretty easy....simply shuck the corn, boil for five minutes, cut the kernels off the cobs, and portion in containers or bags. I just take a bag out at dinner time and dump the kernally goodness in a pot, cover with water, and cook until warmed through. So good! The only other veggie I did was zucchini and that was purely in the form of bread...because, zucchini....ick! Oh, you know what, I lied. I also diced up some red peppers, jalapenos, and cubanelles into individual portions for dishes and froze those. All but the red peppers came out of our garden.

The last effort remaining for my "winterization" is applesauce. This task begins this weekend now that MI apples are coming in (I prefer jonamacs or just plain macintoshes for sauce). Applesauce making typically spans a few weekend and always involves me trashing the entire kitchen. Last year I made 27 quarts of applesauce. The very last one is in the freezer as I type. Just like the jam, I'll never buy store bought applesauce again. Hey, maybe I'll do a post on applesauce making (I know, hang on to your shorts, right?).

So all this to say that my deep freezer is nearly full of fruit, veggies, bread, and meat of course. I can't even find things anymore. Wouldn't it be weird if we really did have an exceptionally cold winter? Let's evaluate come spring time.

Proof: Me looking bored during the most tedious part of jam making, the stirring until a full rolling boil is achieved.

On a completely unrelated note, doesn't it look like I'm sporting some booty pops? That's au natural, baby! Bet you didn't know I was so bootylicious did you?***

**I know what you are thinking, "Oh No, here she goes again with the crazy animal metaphors."

*** Now I'm really going to get some strange google hits. Won't they be disappointed when they get to read all about the joys of jam making and produce freezing. Wrong kind of peach buddy....wrong kind of peach.****

**** (Look, a footnote on my footnote!) Now I'm desperately trying to remember all the "real life" people I gave this link to so I know who to feel weird around after the strange turn this post has taken.

I'll Be Here Waiting for You When You Get Back

2010-09-10T05:31:00.000-07:00

And without so much as a glance back he took off running for the bus, climbed the steps, and he was off....full of courage, confidence, and excitement.

Things That Bring Me Relief

2010-09-09T14:49:00.000-07:00

Currently the following things bring me relief and waves of peace (in no particular order):

Not ever having to pump again

Not having to feed a baby that doesn't want to drink 8 bottles a day

Not worrying about Ellie's calorie counts

Not having to go to work and worry about tax returns, deadlines, getting to work on time, Sunday night dread, maneuvering the landmine of various work personalities, etc.

Financial stability (for now)

Fall and cooler temperatures

The fact that my wonderful husband is officially six months cancer free

Ben's scan came back completely clean. Even the scar tissue from the tumor has disappeared. The doctor said that his CT scan looks like a completely normal person. Relief doesn't even begin to describe the feeling. I'm so excited that we get to enjoy the fall and all the various holidays this time of year brings with no one sick or puking or without the fear that a giant shoe is about to come crashing down on our heads. Between the cancer last year and my pregnancy the year before, its been two crazy fall/winter seasons.

Ben has been having some heart palpitations, so they ordered an EKG and Echo-cardiogram just to double check things since one of the chemo drugs can damage the heart. They don't expect to see anything, its more of a peace of mind thing. I think those tests are next week.

Thanks for your prayers and good thoughts for Ben and his scan....its working!

My Little Ellie Beans

2010-09-07T15:20:00.000-07:00

Where or where do I start with the Beaners......

The Head

As of right now, we have finished with the helmet. At Ellie's last appointment with the Cranial/Facial Surgeon she said that Ellie had "rapid phenomenal change". Her small size actually ended up being an advantage in this case because her head still had a lot of growing to do in comparison with other babies of her age group. She ended up only having to wear it for four months which is on the lowest end of the time scale. I am very, very glad to be rid of it. Bean's poor head just sweat like crazy under that thing. As a result, her head and the helmet itself, permanently smelled like a teenage boy's sweaty shoe. Yuck! Plus it was a pain to clean the helmet and her head every single day, not to mention driving an hour to the orthopedic place that made/adjusted the helmet and then separate four hour long doctor’s appointments for a five second measurement. Surprisingly, we didn't get a lot of weird looks or comments from strangers. I guess most people know what they are for at this point. Also, as a bonus, it saved her noggin a few times when she fell over in the grocery cart....ehemm.... So now she has a lovely, perfectly shaped melon.

The Club Foot

Not much to say about that really. It is definitely turning in more and more and isn't nearly as flexible as it once was. When she stands, she tends to let it curl to the side so she is standing on the outside of her foot. I will typically hold the foot down and stretch it while she is standing. We have an appointment with orthopedics (yes, a different orthopedics than the helmet one) in a few weeks. I'm not sure what they will say.

The Eyes

We saw the pediatric ophthalmologist last week. I was very pleased to hear that her lazy eye is getting slightly better. He still says they will most likely perform a surgery to correct the eye, possibly next year, but they have to wait until the eye stops changing. He still wants me to try and patch her good eye.....but come on, really......you try and keep a patch on a one year old that absolutely does not want to wear it. Last time, he prescribed drops to make her good eye blurry. I was supposed to use them for a week straight, which I did. I wonder if it had anything to do with the eye getting better. I've been told that patching does not correct a lazy eye, however, it does help to force her to use the bad eye and strengthen it. The fear is that she will stop using her bad eye and eventually, her brain will just cut it off permanently. Now if that doesn't strike the fear in ya for patching, I don't know what will.

The Brain

Stable....someone knock on some wood. I hate to even type this but it has been a year since her last shunt surgery.

Therapy

We had none during the summer. We've spent the last three months on a waiting list for private physical therapy. That was useless....maybe we will actually make it to the top of the list for next summer. Early Intervention is run through the school system so they don't work in the summer. Well, they did hold baby groups a few times but the occupational/physical therapists weren't there. I went once and didn't go again. They were not very helpful at all and Ellie hated it. In any event, EI starts up again on Monday. I'm sure Ellie will be none too happy about that. All she has to do is hear the teacher's voice and she cries.

The Person that is Beans

My funny little Ellie....she's so sweet and cute. She is still the tiniest little thing at about 16 lbs at nearly 15 months. She is nowhere near the growth charts on weight but still maintaining at the third percentile for height (same as her 5’1” mama). She loves table food and eats what I consider to be a lot of it. She still prefers to not drink her bottles of milk and I’m lucky if I can get her to take ten ounces in a day. I think she would be perfectly happy if I never gave her another bottle ever again. She is definitely getting around doing her inchworm crawl. She gets up on all fours and then stretches out her upper body until she is laying flat, the brings her butt up until she in on all fours again. It is hilarious. She is fast that way too. She has all the parts of real crawling down, but she doesn’t seem to want to put it all together. The physical therapist said that now that she has an effective way of getting around, she will be less inclined to learn a different way. She can also go from sitting to all fours and from all fours to sitting. She is certainly a trouble maker and into things in a way that Gabe never was. Whereas Gabe could care less about plugs and cords, Ellie must consider it her mission to find everyone in the house. She waves “hi” and claps. She can do “so big” and point to her hair and toes on cue if she is in the mood. She has just started giving sloppy open mouth kisses. I can tell she understands a lot of what we say to her and even though she doesn’t say any words, she loves to mock letter sounds. She is quite timid and shy and while she will go to almost anyone, she will not smile or show an ounce of personality to strangers. We get stopped at stores all the time so that people can tell me how beautiful she is and fuss at her and Ellie will typically barely even glance in their direction. Hands down, she is a daddy’s girl. All she has to do is hear the door squeak in the evening and her face lights up in anticipation of Ben coming and picking her up. I run a distant third to daddy and big brother. She follows Gabe everywhere and steals his toys. He lets her poke his eyes and yank on his lips and just laughs and laughs. They actually play really well together. Gabe is always his sweetest with his baby sister.

Most days, I don’t even think about Ellie’s disability. It is not really until I see another child her age, that I realize how small and delayed she is. At one year she was tested developmentally and met through 11 months on cognitive/social skills and met most of her 8 month gross motor skills. I suspect her gross motor skills will start to lag a bit more. She is nowhere near walking and cannot pull to a stand yet. She can stand holding on to something, however she will not bend her knees at all once she is up there. Since she won’t bend her knees, I cannot get her to take steps while I hold her hands. I am starting to suspect that something is going on there, but I don’t know what. It is part of the reason I am eager for PT to start up again. Then again, I never thought she would crawl as soon as she did either, so I guess I shouldn’t sell her short. My goal is for her to formally crawl at eighteen months and walk at two and a half years old. We shall see.

I realize this reads like I only think of Ellie in terms of her various issues, but that isn’t the case really. Like I said, most days I don’t even think about hydrocephalus. I just see my daughter, who I love. I see her beautiful smile, long eyelashes, and gorgeous blue eyes. I see her silly things she does and listen to her babble. I watch her dump over her brother’s toy bucket and sift through the goldmine of things too small for her. I hug her, kiss her, enjoy her, because she is a gift…truly….one I never thought would be.

This picture just cracks me up everytime I see it.

Let's Talk About Me

2010-09-04T15:03:00.000-07:00

Ellie probably needs her own post so I will just talk about myself today. However before I do that, there are a few things I forgot to mention about Gabe. Most importantly, a few months ago, he quit sucking his thumb. It happened without any fanfare...so much so, I didn't even noticed that it had happened. He simply stopped doing it. Also, he and blankie parted ways. I'm a little sad about that but he has a new best pal which is an antique stuffed monkey we named Stan (well, more formerly he is known as "Stan Stan the Monkey Man Stanley").

OK, let's talk about me now.

I mentioned in my last post that we started working out. Typically, I run for 30 minutes three times a week, either on the treadmill or at the track. Sometimes I do the Jill*ian Mich*aels 30 Day Sh*red DVD, which is actually really hard and I'm only on Level 1. I'm pretty disappointed though because since I stopped pumping in June I've gained 8 lbs despite working out and eating better. Gah! Even though I'm really working out for health reasons, I still wouldn't mind dropping a few lbs.

Also since I've stopped pumping and no longer have to feed a baby every 3 hours, I suddenly find myself with a lot more time than I have had in the past year. I've been unemployed for over a year now and I'm finally settling into a more natural life pace. Its had me thinking a lot about personal goals. So far, I've come up with the following:

1. Blog three times a week

2. Finish that blasted quiltI started before Gabe even came home

3. Cut our spending/expenses by a yet undecided percentage

4. Run a 5K next summer, running the entire time

5. Learn how to sleep through the night again

Goal number three has been a big focus for me lately. However, that probably deserves its own post as well. Don't worry though, this isn't going to become a frugality/coupon blog. While I enjoy reading a few of them, I have no intention of writing one. Although, I may bring up whatever shenanigan I am cooking up at the moment (the kind that make my loving husband roll his eyes at me).

As for goal number five.....I used to be a champion sleeper. When Gabe came home, he was already sleeping through the night, so I didn't have to deal with the sleep deprivation that a new child brings. Ellie would have happily slept through the night very early on, however we were not able to allow that due to her weight and my need to pump enough breast milk to sustain her. When I stopped pumping, we also stopped waking her up. However, my body does not seem to know how to revert back to champion sleeper. I usually fall asleep just fine, but will wake up and then lay there for hours, typically around the times I would have drug myself out of bed for a feeding. I sure didn't want to wake up back then....why now all of the sudden?

Other than that, things have been pretty calm for me. I still worry about Ben of course however, the crazy anxiety times have passed for now (Shhhhh!!!! Don't say that too loud...Sept 8 is only a few days away). I still miss my best friend like crazy and have a lot of lonely days...particularly since Ben has been working a lot. All and all though, I can't complain. I love the quiet times between the storms. I've learned you have to really cherish them and soak them in. During the many crazy times we've had, I always remind myself that "this too shall pass" just as it had times prior. I can only hope this quiet lingers for a long while.

Catching Up

2010-09-01T07:39:00.000-07:00

I guess I should start back by giving an update on everyone. Thankfully we’ve had a pretty quiet, albeit busy, summer. We are pretty much homebodies so you can tell our perspective on life has changed after the last year. We had a family wedding, a trip to the zoo, a fun evening at a carnival with fireworks, a road trip to the Warren Sand Dunes on an incredibly hot day, the family reunion on Lake Erie, and an even hotter day at Cedar Point. Ben and I even squeezed in a date night that not only didn’t involve a rat, but did include dinner AND a movie. Look out now folks.

Ben is doing great. He had his six month CAT scan last week and we find out on September 8 whether he is still cancer free. Every time I think about that appointment I feel a little queasy. I know that most likely he is fine, but I just don’t trust “most likely” anymore. I become a little paranoid every time he says he’s tired. I get a wild look in my eye (or so I’ve been told) and spout out a litany of questions beginning with “what kind of tired?” All his hair returned pretty quickly after finishing chemo, so except for a few extra pounds, you would never know it even happened. The chemo did leave some lasting effects; he has some tingling in his feet at times, he says he can feel his heart flutter on occasion and he has some swelling that comes and goes. We’ve both been trying to eat better and we’ve been working out (running mostly) three times a week.

Gabe starts kindergarten on Friday. I’m nervous, he’s nervous, there’s a whole lot of nervous going on. I just can’t quite imagine putting him on a bus and not knowing whether or not he’s made it to the classroom and everything that may occur in between. I know he is going to be OK, but the mom in me is freaking out a little. I think he is going through another funk, similar to last summer. He is having trouble with listening and being rude. Its very frustrating. Part of me wonders if its purely boredom or too much togetherness. I do know, that I can’t wait for it to pass. I’ve definitely heard the phrase, “I’m bored” too much this summer. Now I finally know how my mother felt all those summers. He still likes to talk my ears off most days and has amazing comedic timing. He loves to draw, play video games, build with legos, and create imaginary battles with his guys. I love him….even when he makes me crazy.

OK, nap time is almost over so I will have to talk about Ellie and me in the next post.

Someday I will be able to look back at this picture and remember Gabe exactly as he was at five. This is a classic Gabe pose when he is explaining something. Oh, and just the mere fact he is in that pool, no matter how small, is amazing. The kid is kinda a wimp about water.

After ten years of marriage.....he's still a hottie.

Turning Over a New Blogging Leaf

2010-08-30T03:55:00.000-07:00

I’ve been doing a lot of thinking lately about this here old blog. As of next month, I’ve been writing it for six years. Six years! That’s a long time. I used to post on a regular basis, but as life got more boring followed by more complicated, I fell off the blogging path. Once you’ve fallen off the path, its hard to get back on. I came to a conclusion last week that I was either going to shut my blog down for good or start blogging on a regular basis again. Most of the week, I was leaning toward shutting it down. However, I went back and started reading some of my older stuff and I realized I loved being able to look back and recapture my thoughts, feelings and tidbits about life I had forgotten. I’ve now decided that for the next year I am going to blog at least three times a week. There, now I have put it out there so I’m committed.

So in order to kick this off, I thought I would take us back in time to revisit some past posts. After all, this blog has covered a lot of life events…..

Infertility

International Adoption

Miscarriage....One and Two (I blogged about Three on a password protected blog that has since been deleted)

A Very Troubled Pregnancy

A Special Needs Baby

A Cancer Diagnosis

I've also made some of the worst analogies ever. Egads.

This blog has seen me through some of the most critical moments of my life and I guess I'm just not quite ready to part with it. At one time, I had a lot of readers (back when I was still on Blogger) and was even mentioned in the Adoptive Families magazine as a good read for Guatemalan adoptions. Unfortunately, shortly after that happened someone alerted me that a picture of Gabe and I was stolen and used on an anti-adoption website. I moved to Typepad and went password protected for a time after that discovery. Between that move and my lack of posts, I'm not sure anyone really reads anymore. However, I get a lot of value simply out of writing it and rereading it later.

So anyway, that's where I'm at right now. I'm actually looking forward to getting back into writing. I've missed it.

Gah! I know, I'm a terrible Blogger

2010-08-05T14:26:00.000-07:00

I apologize but I've been busy enjoying the summer. Heading out for a weekend long family reunion on Lake Erie tomorrow and then Cedar Point. Hope to return to some semblance of normal posting eventually (even if for my own sake). In the meantime, some pics from my BIL's wedding at the end of June.

Ms. Eliana

The Gabbers (who did not want to dress up thank you very much).

The Fam

Happy Birthday My Ellie Beaner Boos

2010-06-16T01:56:00.000-07:00

Happy birthday sweet girl! What a gift you have been to your father, brother and me. You continue to amaze me everday. What a journey your first year has been. I love you so much.

One Year Ago:

And Now:

More about the beaners later.....

End of the School Year

2010-06-07T09:24:00.000-07:00

Gabe on the first day of school

Gabe on the last day of school

So as not to be left out....Ellie on the first day of school

Ellie on the last day of school

Our family after a very difficult year

OK, this picture makes clear to me the need to get back on the treadmill. Yuck!

Let's Talk About Our Reproductive Future

2010-05-25T11:08:00.000-07:00

....because that is a topic that has never been discussed here before (cough..sarcastic...cough). When I started this blog almost six years ago, we were pretty early on in our adoption journey. I still discussed infertility a lot. Over the course of those six years Gabe came home, I got pregnant three more times and miscarried two of those pregnancies, started another adoption, and then got pregnant and gave birth to Ellie.

Despite the fact that I actually did manage to carry a baby to term and give birth to a living, breathing child, I am still considered 80% infertile. This means that I can expect to miscarry four out of five pregnancies, in the event that I actually do manage to get pregnant (no easy feat there either). If you remember correctly, I wanted the doctors to tie my tubes during my c-section. However, they were incredibly reluctant to do so since I was having such a tumultuous pregnancy and giving birth to a baby with an uncertain future. I remember Dr. G saying as delicately as she could, “Well, what if things don’t go well with the baby and she dies or is born with severe disabilities?” At the time, I was very perturbed by her comment. Like another baby would fix the things that were going on with Ellie. But I guess somewhere deep inside I got the spirit of her point, however misguided the wording. So I did not get my tubes tied (and there was much rejoicing by all three docs). If you also remember correctly, there was a very real threat of me losing my uterus, which I was completely OK with. However, that didn’t happen either (and there was much rejoicing by all three docs).

Honestly, I kinda wish I would have either had my tubes tied or lost my uterus. Why? Because that would put a great big period at the end of this family building saga sentence. I could get rid of my baby stuff, we could move on to other things. In fact, I waxed poetically about looking forward to this very thing. We had been trying to build a family for nine years and I was ready to take a new path for awhile and leave this one for good.

Unfortunately, old habits die hard. Turns out, I’m not really sure what life looks like without striving towards another child. I’m not sure where to focus that chunk of energy. I’m not sure how to let those thoughts die and turn toward a different goal. What would that goal be? I’m not talking about raising the kids I have…that’s always an ongoing goal of course. But what is my new long term project. I feel a bit lost without that one thing flailing about constantly in the back of my mind.

Secondly, getting back to the spirit of what Dr. G said, there is a large part of me that wants to know what it would be like to have a normal pregnancy, birth, and a baby without medical issues. I know, crazy right? Like that is ever a guarantee…..especially given my history. Its true, Dr. Mo said the chances of me getting placenta previa again is slim. True, Ellie’s issues (as far as anyone can tell) are not related to a genetic issue and hydrocephalus does not tend to repeat within families. However, man, weird shit always happens to us. I guess I don’t fully trust fate/God/whatever that it won’t be more freaky things coming our way. But still…what if? Holy crap, who knew I was a secret optimist?**

Our current plan is that we will let whatever happens, happen. If nothing happens by the time we are 35 (I’m 32.5 now) then we will officially close up shop in some permanent way or another. Its very unlikely that anything will happen….I’m 80% infertile….Ben is supposed to be sterile from the chemo. Maybe we are like, 95% infertile now combined. Who knows? But here we are, the reproductive door swinging in the wind once again. I would be completely happy with the two kids I have…..I would be completely happy with a third…..I’m terrified of having another and the risks therein…..I am a mess of contradictions.

**Just to be clear, I love Ellie. I do not regret a thing about that wonderful girl. Would I change what happened to her? In a heartbeat. Would that make me love her any more? Absolutely not! But we still don’t know her prognosis and what happened to her sucks. I wish it didn’t happen.

OK

2010-05-12T07:16:00.000-07:00

According to statcounter, two people from Ford are reading this blog, but I don't know who they are. Can you please drop me a line or make a comment and reveal yourself? I can't remember who I gave my blog link to and I'm curious.

Thanks!

Its Official....

2010-05-10T10:00:00.000-07:00

...I am no longer an employee of Ford Motor Company. I called my boss today and told him I was not going to be returning to work when my leave ends on June 1.

I didn't really write a lot about my job here since there was a stated company policy about such things and I needed that job. I did have a smattering of posts and a mention here or there. I guess now I can be more specific about what I did exactly, I was an international tax accountant for Ford for nearly 10 years. I did enjoy the job for the most part but my heart has truly wanted to stay home with my children since before Gabe even came home. In fact, if you remember correctly, I even quit after Gabe came home but then had to return for financial reasons. Thankfully, things are different now. Ben makes more money, we don't have adoption debt hanging over our heads or the need to raise great amounts of funds for a second adoption. I am incredibly grateful that I don't have to work anymore. I love staying home. Not that it is easy, but since I've now done both things, its soooooo much easier than being a working mom. Hopefully that doesn't offend anyone, but for me and my situation, its true.

I'm sure I will have to formally do something regarding my resignation but otherwise I'm done. I haven't been in the office since April 24th of last year (which ironically, in a mix of pregnancy hormones and stress, I attempted to quit and was talked out of it by my boss only to end up in the hospital the next day) and I haven't worked period since June 1. I worked remotely for the month of May, first in the hospital and then at home. Since I've already been gone nearly year, I had already transitioned all my work. In a way its a bit anticlimactic after a full year of leave but its nice to officially cut the ties. I feel like the world is my oyster and the kids and I can leisurely enjoy our summer together (last summer didn't count since it was purely survival with everything that was going on).

Woo Hoo to me!

Its Hard To Believe...

2010-05-02T09:46:00.000-07:00

...that a year ago I was in the hospital the first time. That had to be the fastest year in the history of all years.

Not that we didn't have anything going on at all.

My hope for this next year is boredom. I could really use some boredom up in this place. After I wrote that post about feelings, things have normalized quite a bit. It feels good to be normal again. AND, I even got to have lunch (without kids) with an old friend I hadn't seen in a long time which was awesome (thanks Emily!) So there you go.

Now, if Chasen and Liz would just come back to Michigan....

I'm not sure there is any real point to this post, except to note the one year anniversary of my incarceration. Thank goodness that is over.

Oh, look over there...pictures.

I call this series....Cancer! Don't even think about it....

That's what I thought!!

Sob...My Baby Boy!

2010-04-16T09:57:00.000-07:00

Today I registered my Gabbers for Kindergarten. Standing in that gym, like so many other parents I'm going to assume, I had to fight back tears. People often like to call Ellie our miracle. However, to me, Gabe is my miracle. I dreamed about Gabe and worked so hard to bring Gabe into our lives for years. So many events had to align for Gabe to become part of our family. We could have adopted a different child...Gabe could have gone to a different family. I'm so glad that he is my son. I am truly the lucky one in this scenario. He and I had to work so hard in the beginning on attachment, that even now I am so protective over him (much more so than Ellie). Obviously, I love both of my children fiercely, but only one can be my first. I cherish this little boy who made me a mother.

Before registration, Gabe and I went to see a play as part of his school field trip. On a whim, we stopped and had lunch together, sitting in the same side of the booth. I had to take some time and just take him in. To remember the way he smiled and the sound of his voice. The feel of his head on my arm and the way his hair smelled. I just want to gather these little things up and put them somewhere safe forever. To never forget the way he was at five years old because its already hard to remember the little baby he had been.

I know that from the day he was born it has been his job to grow up and away from me. I also know as a mother its my job to equip him and let him go. But sometimes it feels like my heart might blow up from the joy and pain of it. Both emotions fighting one another.

Despite all of my dreaming, I couldn't have imagined a more wonderful son.

A Post About Feelings

2010-04-09T05:23:00.000-07:00

Kelly suggested in the comments that I might find talking about what is going on with me to be a stress reliever. I wish that were true. The truth is, this post is a long time coming because I actually feel worse when I examine and talk about how I'm feeling. Its hard to think about. Plus, I'm out of practice with actually discussing my feelings. Why? Well,I have no one left to really discuss them with for one. For two, I just get so sick of being the person with a sob story. I mean, who wants to be that person all the time. Ugh.

I guess if I was going to summarize my thoughts on the last six plus months it would be this: Scared, Sad, and most of all, Lonely.

Scared. On the surface, I guess this one is obvious. There is nothing like the terror that has confronted me with the possibility of losing my husband and best friend. There is also the terror of Ellie's various issues (many of which I haven't discussed in detail). However, to go even deeper than that, I'm scared of everything now. If you look back at all the freakish things that have happened to us just in the last two years its crazy. A shockingly conceived baby that ends up having a rare congenital issue...a husband that went to the ER with a cough and came home with cancer....just to name a few. After several incidences, you start to believe that something awful is constantly lurking around every innocuous corner. The smallest thing could be the beginning of a terrible series of events. Now, I know what you are going to say, "Kim, you can't live your life in fear, we all could get hit by a bus at anytime." Yeah, yeah, I know. That's true in theory, but its different when the metaphorical bus has ran you down time and time again. Oh and by the way, please don't say that to me. Sure, Ben is in remission now, but the threat of relapse is real. The chances of secondary cancers, also real. Possibly lung damage, heart damage, other unknown damage..real, real, and real. The possibility that Ellie won't be OK, that's real too.

Sad. I am mourning the life I thought I had. I'm fearful that things will never be "normal" again. That we will never get back to the way things were. I'm talking about simple things. I want to have Ben come home from work on a Friday, go grab dinner, and then stay up past 9PM watching bad TV and laughing. I want Ben to come home from work frustrated about his boss and not the fact that he is having chest pain and more fatigue. I want to be goofy with my husband, have long heart felt conversations, and share child care duties again. I want to have average household worries. I'm sad that we've missed out now on a half a year of living. Halloween, Thanksgiving, Christmas, New Year's, birthdays, and six months of the kids' lives have passed and not really lived despite the attempt to do so. I'm sad because I feel like this will never truly be over. This sadness tends to lead to desperation and eventually depression.

Lonely. This by far is the predominant feeling I've had over the last six months. I miss my husband. I miss the silly, goofy, indestructible man. The man who could make everything better, could fix anything, who took care of all of us. I miss laughing with him and talking with him. I miss connecting with him both emotionally and physically. Although we have gone through this experience together, the bulk of the time Ben was sleeping or just feeling miserable. Now obviously, I don't hold any of this against him, that's crazy. He has been amazing, coming through this cancer the way he did with grace and strength. However, its going to take some time for us to reconnect. Its going to take some work on both of our parts. To make matters worse, Ben's diagnosis came right on heels of our very best friends moving to Texas. I have always been a quality over quantity person when it comes to friends. I usually have one great friend and few others. Liz was that person for me. She is my best, best, friend. The only other person I trust fully with my thoughts and feelings. To say that it has been hard here without her is an understatement. I can sincerely say that family has been awesome to us during this time, particularly Ben's parents. I couldn't have done it without them. However, I can't exactly spill my guts out to them or call them up to hang out on a bad day. Family by nature has its limitations when it comes to these things. As for my other friends, I just don't feel comfortable spilling out my feeling to them. I get tired of being the "downer" with another sob story or another trouble. No one wants to hear about how Ellie's non-eating affects me anymore. Its a tired tale. No one wants to tell me about their issues anymore because "it doesn't compare to what I'm going through" or they like to tell me that I give them perspective about their own life's troubles. I don't want to be anyone's "perspective". I don't want anyone's pity. I just want to laugh with someone, go out to lunch without kids, be normal, and maybe if I'm feeling up to it, I could be honest about how I feel.

So there you have it....probably more than you ever wanted to know about my innermost thoughts. My head is a scary place to be sometimes.

Pirates, Cosmonauts, and Cuteness

2010-04-08T13:17:00.000-07:00

Pirates

Cosmonauts

and Cuteness

I need to write a post about Beans opthomology appointment and their opinion about the vision specialist's assessment. I also need to write about what is going on with me. You would think since this is my blog I would get to that, but as with life, kids before self.

Gaps

2010-03-19T04:07:00.000-07:00

On Wednesday Beans had an appointment with a vision processing specialist. She donated her time to our Early Intervention school and Ellie's teacher saved her a slot. She is different from a regular opthomologist because she checks how children process what they are seeing versus the actual physiological aspects of the eye. Bean's teacher warned me that a lot of parents get upset when they hear her diagnosis. I promptly told her that hearing a diagnosis doesn't change what is already happening to Ellie and I already know she has vision issues. I didn't really expect to hear anything different from what I currently know.

It turns out I was wrong. Why does that always happen?

So it seems Ellie has a lot of gaps in her vision. Her left eye can see to the left, down, and right, but does not see up. Her right eye is significantly worse and can only see left and down. I was kinda shocked to hear this. I knew she had issues but I did not realize she had such gaping holes. No wonder she always looks down or to the left...its the only place both eyes can see. I'm surprised that the opthomologist we see couldn't figure this out. I know told her teacher it wouldn't bother me, but it did. This is the first real, permanent damage we have discovered from the hydrocephalus. It was a wake up call that real problems may be lurking that we don't yet know about.

These gaps cannot be repaired. Unfortunately, the nerves in these areas cannot be recovered. Our only option is to work with her to try and teach her brain how to try and compensate and work around these gaps. So now I'm armed with some therapy techniques and I believe Beans now qualifies for vision therapy once a month. I'm considering going outside of EI though to see if we can get insurance to pay for private therapy.

As with all of her various therapies, I feel very overwhelmed with the tremendous responsibility of utilizing this small window of time where her brain is malleable. The weight of this responsibility keeps me up at night. I'm constantly worrying that I'm not doing enough. I can't screw this up, too much is at stake. Ellie doesn't have a choice regarding how much work needs to be put in...she's too little to decide for herself...or to have the determination necessary. I am her only advocate. I cannot fail her.

Sometimes this is harder than I ever expected.

Some Pics (Wordy Post Below)

2010-03-06T01:13:00.000-08:00

My handsome five year old

Very serious on the computer

Mario Cart intensity

Proud of his first trophy

Sleeping Beans

"I'm happy in this Bumbo seat"

"I am NOT happy in this Bumbo seat"...this girl can be quite sassy at times.

Siblings

A year ago, I didn't think I would ever see this beautiful face.

Finally!

2010-03-05T08:43:00.000-08:00

I'm finally posting...Yay! I thought I would just start by posting an update on everyone.

Ben

I guess I don't really have to say much about Ben since he is writing his own blog now. He just had chemo treatment #7 of 8 yesterday. It is unbelievable how strong, brave, and awesome my husband has been. I know each treatment is getting harder and harder on him, and yet he presses on. I will be so glad when this is all done.

Gabe

Can you believe my baby is five? I know I can't. Lately I've been going back and looking at old pictures from the summer Gabe came home. Its hard to believe that he has grown up so much, so fast. He had been going through a really rough phase of non-listening and rudeness. After about 9 months of me pulling my hair out everyday, he finally turned a corner. He is doing great in preschool but informed me that he does not want to go to kindergarten next year, nor does he want to ride the bus. Lately, we have started playing Mario Cart on the Wii together as a family. Its been a lot of fun to do this together and Gabe has become quite the driver. Sadly, he can beat me a lot of the time now. One unfortunate side effect of this though has been I now have a five year old back seat driver in the car. I'm constantly hearing, "Mom, pass that car!" or "Mama, don't slow down!". I have to explain that in real life we can't just flip the car and then keep going. He has also taken to drawing. He loves to make pictures of super heroes, or recreations of scenes in Mario Cart. I've been really impressed by his creativity. He adores his baby sister and he still gets the most smiles and laughs out of everyone. I love my son and enjoy his company, despite the "all boy-ness". He is an awesome little kid.

Ellie

Oh my Beaners....where to start? At last update, Ellie had just started physical and occupational therapy. Every Monday for an hour her teacher and either the physical or occupational therapist come to the house. After visiting the first few baby group meetings, I decided I wasn't going to attend those anymore. We also had her assessed by a developmental center and they deemed her "within normal limits" for a baby of her adjusted age. I'm not sure about that to be honest. I felt it was pretty much a waste of an hour in my opinion.

I'm not sure if I told you this or not yet but she has also being seen by a pediatric opthomologist. They said that her eyes are structurally sound and the optic nerve has not been damaged by the hydrocephalus (it can get stretched out). She does have vision issues for sure, but she is not blind. She has strabismus (aka lazy eye) in her left eye. I'm supposed to patch her right eye for 2-3 hours everyday to help strengthen her left eye. Let me tell you how much she loves that. She also has nystagmus in certain positions. This is when her eyes move back and forth. This seems to be improving, which is good. There are a few other issues, but I cannot remember the names right now. She can and does track objects now and will reach for toys. However, she does spend a lot of time looking down and when you talk to her, she most likely will not look at you but will respond with smiles and other ways. So all in all, her vision issues are improving, but still evident.

Beans still hates eating. I spend so much of my life trying to feed this child. I'm either pumping or feeding or worrying about both. Its been 8.5 months of pumping and I cannot wait to hang up my horns. I thought I was going to be able to do this when she was 11 months old since I have over 1000 ounces of frozen milk, however I've recently discovered that it doesn't defrost well and smells really bad. So I guess I have another 3.5 months to go, unless my supply runs out before then which it seems to be threatening to do. In December, she was drinking about 24-25 ounces but she hasn't taken nearly that amount in months. After some fits and starts, it turns out she does like solids (for now). Unfortunately, solids have less calories per ounce than milk. I select her food based on calorie counts and often add olive oil to veggies to boost the calories. I really struggle to get her to take between 80-100 calories per kilogram in order to gain weight. Currently, she weighs just over 13 pounds which is below the 3rd percentile for weight. I look forward to the day I don't have to count every calorie she consumes...if such a day ever comes.

Last Friday, Ellie was fitted for a molding helmet to fix the shape of her head. Ellie has always preferred to turn her head to the left. There are many theories as to why (her shunt is on the right, NICU placement, the nystagmus, etc.) but she would absolutely freak out if you tried to turn it in the other direction. It isn't an issue of torticollis (where the neck muscles are tight) it is purely by choice. As a result, the left side of her head is flat. So the poor girl will get her pink helmet in a few weeks. She's going to hate it. Also as a result of her head turning, she has scoliosis. Although, that seems to be correcting itself as she spends more time on her tummy and sitting upright.

Other than that, Beaners has been progressing and learning new things. She can grab and manipulate toys, including choosing her favorite ones. She can intentionally shake a rattle and know what it will do. I can carry her on my hip without her flopping over like a wet noodle. She finally has good neck control and is close to sitting up on her own. She enjoys tummy time and can lift up on her arms. She is babbling and has some new sounds, "baba", "lala", "dada". I'm really pleased with her progress so far.

Next post...pictures and me!

Poking My Head Out of My Cave

2010-02-25T16:00:00.000-08:00

Sorry for the long silence but I'm hoping to post an update soon. Unfortunately, I've had a really sick baby fpr over three weeks now and I'm giving breathing treatments around the clock. Here's to hoping the steroids start to help. Life has been hard these last few months for sure. Thanks to all that have been reading and commenting on Ben's blog and thanks for all of the good thoughts and prayers.

IEP - Individualized Education Plan

2009-11-19T10:02:00.000-08:00

Over the last few weeks, I've been working with our local district's Early Intervention program to get Ellie set up for physical and occupational therapy. Our pediatrician wanted us to do it at the Children's Hospital but I grew weary of waiting for them to call me back. Plus, EI comes to my house one day a week and who can complain about that. Also, its free.

Beaners had her evaluation a week ago last Tuesday. The Early Intervention for our district is held in a school a few cities over so we drove out and met two of the nicest ladies ever. Seriously, if I was going to pick two people to work with Beans, these would be them. They evaluated her in several areas and as expected she qualified fully for services. In gross motor skills, they couldn't even get a baseline and in most other areas she ranked in the 0-2 month range. The good news is that in cognitive and social skills she tested firmly in the 3-5 mth range. Many of the tasks she failed due to the eyesight issue (which I expected). She can't very well grab for a toy that she doesn't even see. So now we have an official plan with goals and everything. So far, I am very pleased with the program.

The current plan is that a teacher will come to the house every Monday from 1 -2pm. The physical therapist and occupational therapist will alternate visits along with the teacher. In addition, we can attend a group session on Tuesday mornings (at 9:30...GASP!...that is really hard to pull off these days). The group is for parents and babies three and under. I went to my first group meeting last Tuesday. I felt completely ridiculous singing songs to Ellie with a bunch of parents, but I'm pretty sure I will survive. This week they were doing an infant massage class, but this was a one off thing. I think its usually more therapy driven with different activities that you rotate around to. I guess I will see in two weeks time (we have to miss next week since Beaner's opthalmology appointment is at that time).

I feel a lot better having a plan in place and hitting the ground running with it. Hopefully the rat won't make an appearance during a home visit. I'm pretty sure he doesn't qualify for services, not being a taxpayer and all.

Not Mickey Mouse

2009-11-13T12:48:00.000-08:00

So the rat story....I know you all have been waiting with bated breath. We've had some bad luck with creatures, remember this and this.

About a month ago, I was sitting on the living room floor pumping at around midnight when I heard what sounded like a mouse (or something) behind the couch. Ben, thinking I was crazy, moved the couch away from the wall and looked all around but we didn't see anything. The next night, we heard the creature in the crawl space under our house, banging on the heating vents. Over the next few weeks, we heard it in the wall between the kitchen and the bathroom. Finally, one morning I came downstairs and found pieces of bread that had been sitting on the kitchen table eaten. Thinking we had a mouse in the walls, we set a few mouse traps and waited to get the little bugger.

The first night, one of the traps had been tripped and flipped over but there was no mouse to be found. A couple nights later, I was laying on the couch with Beaners when I heard the same trap tripped again. I went upstairs and woke up Ben to see if we caught something. Once again, the trap was empty.

Shortly after that, I started to hear the creature during the day....only louder now. It was becoming clear that whatever it was, it was larger than a mouse. I could hear it scurrying behind the kitchen cabinets and stove. I could also hear it gnawing on the wood. At this point, I started to freak out. I thought it was probably a squirrel or a chipmunk and it was only a matter of time before it found its way out into the kitchen.

This brings us to Friday. Ben and I finally went on a date last Friday for the first time since...well....I can't even remember (well over a year at least). We went out to dinner and then came back to the house to watch a movie. We were cuddled up on the couch when Ben said, "There it is!" I look into the kitchen and there is a rather large rat on our kitchen counter. So, so, so gross! It quickly jumped behind the stove when Ben got off the couch. Our date pretty much ended right there. Ben tried to block the space between the wall and the top of the stove and then we left to pick up the kids. When we returned to the house I walked into the living room and quickly screamed and jumped onto a chair because the rat ran out of the bathroom, behind the entertainment center and back behind the counters.

We had pest control come out last Monday. They put a bunch of poison out (enough for two houses he said). However, they warned me that it could take some time before they would eat it. Needless to say, I jump at every little noise and I hate coming down to feed Ellie or pump at night by myself. I am totally creeped out. We've been sure to keep any and all food locked away and all crumbs swept up.

I feel so icked out by the whole thing. I feel like my house has been violated. I swear we keep a really clean house, but I know some of my neighbors (rentors) don't necessarily keep their yards clean. In any event, I can't wait until that sucker is dead.

PS - Ben has a new post up about Wednesday's oncologist appointment.

So In My Version of NaBloPoMo....

2009-11-09T10:28:00.000-08:00

...I post more often, but not everyday. I can't commit to everyday.

So I wanted to tell you about the rat. He ain't no Mickey Mouse, that's for sure. However, Ben is working late so I have my hands a bit full. It will have to wait to tomorrow.

In the meantime, Ben has started his own blog to keep people updated about what is going on. Its Welcome to Struggleville. I know I don't have many readers anymore, but if anyone still out there wants to go over and show him some support, I would greatly appreciate it!

Until tomorrow...

How a Rat Ruined Our Date

2009-11-06T13:37:00.000-08:00

Story to follow tomorrow......

Diagnosis

2009-11-05T04:11:00.000-08:00

Ben has nodular sclerosing Hodgkins lymphoma. I don't know much else at this point except that if you are going to have cancer, this is the one to have since it has a 96% survival rate and an 86% non recurrance remission rate. The thoracic guy thinks they won't do surgery and may only do chemo, not radiation. However, we won't know anything for sure until we meet with the cancer people.

Ben is upbeat and positive (as usual). I am feeling positive too, but sad that he has to go through this. I am in a state of shock though. I can't believe my husband has cancer.

Updated: Ben has an appointment on Wednesday with the oncologist so we will have more info after that.

I Certainly Didn't Miss My Calling With This One

2009-11-04T14:56:00.000-08:00

All the parents of the children in Gabe's preschool class are required to be a "helper" twice throughout the school year. Today was my day. It was music day so I had to sing "I'm a little teapot" complete with motions. Not my cup of tea let me tell you. I was also in charge of the craft of the day which involved gluing tissue paper balls onto a brown turkey cut out. While I enjoyed spending the time with Gabe, I don't really see the PTA in my future. I'm just not that kind of parent (or a joiner for that matter).

I honestly don't know how these teachers do it. They have a tough job, wrangling a classroom full of preschoolers. I start twitching just thinking about it. To make matters worse, its a very strange group of kids (my son included).

I have started making friends with some of the parents (not a weird group thank goodness). I'm trying to work up the courage to ask a few of them out to lunch. Have I mentioned I'm kinda shy? I guess if I'm going to do that I should probably learn their names instead of just "Alex's mom".

In any event, those kids wore me out so I'm going to bed...for an hour at least. Then I have to rouse myself and Beaners so she can not drink her bottle.

The Beaners

2009-11-03T14:24:00.000-08:00

Ohhhh the Ellie Beaners...where do I start? Actually, Ellie is doing really good.

I think the last thing I mentioned about her was that she was having a MRI and they had over sedated her and she wouldn't wake up. That was quite awhile ago. We saw the neurosurgeon in early October and he reviewed her MRI results with us. He showed us the pictures of her brain just after the first shunt was placed and then compared them to her brain at the time of the MRI. Now that the excess fluid is drained, her brain has completely reclaimed the space. He said that her brain is structurally normal now. Hooray! Of course, she will always need a shunt, but things look really good right now. Unless her shunt fails again, we only have to see the neurosurgeon every three months until she is one year old.

I also mentioned to the neurosurgeon my concerns about her eyesight. She hadn't been tracking objects, looking at faces, or looking to find the source of sounds. She would move her eyes around so I didn't think she was blind, but something clearly wasn't right. He shined a light into her eyes and declared, "Well, her eyes are reacting to the light because her pupils are dilating, but she is not reacting to the light." He believes now that her brain is healing, it will eventually learn how to see. However, its going to take a little bit of extra time. In recent weeks, I have seen evidence of her brain learning to see. She has begun tracking objects (with her eyes only but not moving her head to do so). She has also started to look at my face, particularly if I'm talking to her. Mostly though, she has been watching Gabe. Even still, we have an appointment with opthalmology on November 23rd to have her eyes examined at the Children's Hospital. The neurosurgeon recommended we have everything checked out to rule out any structural issues with her eyes.

As I posted before, Ellie finished her serial casting on her club foot. We had a follow up appointment with orthopedics. I was convinced that they were going to cast her foot again. It had begun turning back in shortly after the last cast was removed. The doctor examined her and said while its not quite as flexible as it had been, its still bending appropriately. He decided we should start putting a brace on her foot overnight. So I met with another company who measured her foot and said the brace would be ready in about a week. I waited and waited for a call but none came. I finally broke down and called them (thankfully he had given me his card) and they said, "oh yeah, its been here awhile". Great service, I tell ya. So I drove back down to Detroit to have the brace fitted. Ellie hates the brace. She screams and screams. Plus, I'm not convinced its doing exactly what it should. It is made of two parts, one that hold her foot up at a 90 degree angle and then a second larger part the bends the knee and turns the foot outward. The part that holds the foot up is fine, but the bigger part turns her foot out at the knee and not the ankle. Her knee is fine, its the ankle that needs to be stretched. I've been using only the smaller part and she will wear that one for at least a few hours. I also manually stretch her foot every time I change her diaper.

We saw the pediatrician for Ellie's four month appointment a few weeks ago. Ellie was weighing in a 9lbs 14 ozs and 23 3/4 inches long. She is finally on the charts for length and slowly inching closer for weight. Although, she had just had a huge growth spurt and had been eating really good. The following day she decided eating was for wussies and promptly slowed that down. I doubt she's gained any weight since that appointment. Ba-bye charts.

The pediatrician also noted that her spine is curved like an "S", in other word, she has scoliosis. She said it could correct itself with time and as she learns to push up on her arms and sit up. If not, well, at least I'm familiar with orthopedics. She recommended I have some films taken of her spine. I have yet to go do that. I'm not sure of the point at this juncture. If the only treatment right now is physical therapy, why bother.

Speaking of physical therapy, we are currently awaiting an evaluation from early intervention so Ellie can start physical therapy. I was going to go through Children's Hospital but I got tired of waiting for a call back from them plus, EI will come to my house. I am anxious to get this show on the road. Currently, Ellie has no neck control even though she is 4.5 months old. I acknowledge that she is going to take longer to do the normal baby things, but I will gladly take any help we can give her.

So I've talked a lot about what Ellie cannot do. Let's talk about what she can do. She is very smiley and reacts to Gabe's, Ben's, and my voice with big smiles. She is also cooing up a storm and its so awesome to hear her "talking" to me. I've even heard her laugh a few times. She has discovered both of her hands and she enjoys chewing them into a soggy mess. She even will hold onto a toy if you put it into her hand. Gabe particularly enjoys this skill. I often find him putting various toys into her hand and then laughing as she pokes herself in the face with them.

Ellie is really the sweetest, easy going baby. She hardly ever cries, she sleeps good, and she's just a sweetheart. I mean, the poor thing cries whenever her big brother cries. Its so sad. He will be crying in the corner and her bottom lip will turn down and her eyes will fill up with tears. She loves her big brother. True, she is a difficult eater and she has a lot of medical issues, but she is the greatest baby.

Mono May Have Saved My Husband's Life

2009-11-02T13:14:00.000-08:00

Ben has been sick now for almost two months. It started out with a simple cold that progressed into a nasty on and off cough. The first three weeks he was still maintaining some semblance of a normal life. He was still working, going to football games, still helping around the house and with feedings. However, the last few weeks, things took a drastic turn for the worse.

As with most men, I had to prod and prod to get him to go to our doctor who promptly wrote up a scrip for some antibiotics to help avoid pneumonia. Several days went by but Ben did not get any better, instead started feeling worse. He called the doctor back, but instead of getting another appointment, he just put him on stronger antibiotics. Ben took the new pills for several more days. About two weeks ago, he finally gave in and left work and collapsed into bed. He had a fever, chills, sweats, the cough, and extreme fatigue. Fearing the swine flu, I talked him into going straight to the ER the next morning.

I didn't go to the ER with Ben since I was not about to drag the kids to that germ fest. I was napping on the couch when he finally returned about six hours later. He said, "The good news is that I don't have the swine flu, the regular flu, or pneumonia. However, they found a mass in my chest x-ray/cat scan and I have to get a biopsy." My entire body went numb and I couldn't even speak.

The following day, Ben returned to the family doctor who ran some additional blood work and went over the cat scan results. It turns out the mass is not in his lungs as first thought, but is in his chest cavity. It is rather large (about four inches) and is surrounding his aorta, windpipe, and lung. However, its not affecting any of those things which is why he didn't know it was there. He referred him to a thoracic guy for further treatment and a biopsy.

The appointment with the thoracic guy was a week ago. He too, went over the cat scan results and agreed that the mass definitely had to be biopsied. He said it was too large to be nothing and was definitely "something". He went over the different possibilities of what it could be. Most of those options are cancerous. In fact, it looks very likely that Ben has cancer. Possibly lymphoma. The good news in all of this, they are treatable with chemo and radiation.

Last Friday, our family doctor called with the results of the blood work done and it turns out Ben has mono. Thank goodness he did and I forced him to go to the ER. Otherwise, this may never have been found at all.

To say I am terrified would be an understatement. I can't lose Ben, I can't. He is everything to me. He is my best friend, the one person I can't live without. I always expected something like this to happen to me...not my husband. We have been through some really tough things, but this takes the cake. At this point nothing should surprise me, but I am shocked that this has happened to us.

Ben had the needle biopsy today and we should get the results in 3-5 days. I feel ill just thinking about it. I want to know but at the same time I don't want to know. Nothing in life prepares you for news like this.

Life is Overwhelming Right Now

2009-11-01T13:58:00.000-08:00

Sorry for the long abscence. As my title states, life is overwhelming right now. Sadly, not in a good way either. I've decided to unofficially try NaBloPoMo again this year. Last year I found out I was pregnant the first week of November and since I wasn't spilling the news quite yet, I stopped writing. The pregnancy was all I could really think about at the time. So I guess I have 30 days to catch you all up.

In past years, I always shared my Halloween pictures on Nov. 1 so I will do that again this year.

My Teenage Mutant Ninja Turtle

Ellie (aka "Ells Belles", aka "Els", aka "Ellie Bean", aka "Beaners") came along for the ride.

My pumpkin

Ben's pumpkin

Gabe's pumpkin

Halloween hangover

Next post: How mono may have saved my husband's life

Short on Words

2009-09-30T14:46:00.000-07:00

I am lacking in the words department lately so I thought I would throw some pictures out there instead.

The boy:

What a great big brother

The Girl:

In some lights, Ellie's hair is very red. Weird.

I've been trying to capture this face for awhile. We call this the poo face. Ellie always makes this face when she is filling her pants. Cracks me up.

Finally, my mom with her grandkids. You can see where I get my young looks from. She looks pretty awesome for 52 huh?

You Guys Are Going To Think I'm Making This Stuff Up

2009-09-17T13:39:00.000-07:00

Ellie was very nearly admitted today after the MRI. She wouldn't wake up from the sedation that they had given her. We were at the hospital from 9:30AM until 5:00PM. She ended up having two separate IV's and was poked four different times (one for each limb). We were waiting for a room when she finally opened her eyes.

Honestly. I don't know how much more my heart can take. I know people go through worse things with their kids, but how do they manage? How?

Maybe that is a stupid thing to say though....what choice is there? You can't very well throw up your hands and walk away.

I don't know anything about the MRI. I suppose I will have to call the neurosurgery office tomorrow and see if I need to schedule another appointment.

Good lord I'm tired.

ARRRGHHHH!!!! (Insert Swear Word Here)

2009-09-16T13:17:00.000-07:00

I need to have a whine.

Things that suck in no particular order:

1. So the new washing machine was delivered today and I HATE it. HATE IT HATE IT HATE IT!!!! I called Home Depot to see if I could exchange it and they said no because I used it. Ummm, hello but how else can I determine if it works or not??? So do NOT buy a GE washer with hydrowave technology. There is no way on this earth its going to clean clothes. The sales man who told us all about the washer did not say anything about this new technology so I thought it was just an ordinary washer. Nope. This thing sucks and I'm stuck with it. I just feel sick about it since the washer plus the warranty was $500. I didn't want anything fancy...just a plain old top loader that cleaned clothes. I guess I should have been more specific.

2. Yesterday I awoke from my slumber by a small voice that said, "Mommy, I got blue paint on the carpet". Yeah, not just some blue paint.....a whole hell of a lot of blue tempera paint. Giant puddles about a foot wide all over the carpet. Replacing carpet is not in the budget.

3. A few weeks ago there was a slash in my tire and we had to buy a new one.

4. The dishwasher door also broke and now weighs about 50 pounds and comes crashing to the floor if you don't catch it.

5. The new lawn mower died the same week as the tire slashing.

6. There is a gigantic cricket in the house somewhere. I chased him around the living room with a cup (because he would leave quite a mess on the carpet if I squashed him, he's that big) but he's gone missing. This totally creeps me out.

7. Ellie was having a bad eating day and then threw up one of her feedings. I think her tummy is bothering her.

8. Her MRI is tomorrow and they have to sedate her.

9. Gabe is finally starting to act out as a result of not getting the same amount of attention as before. His behavior (not listening and being rude) has been unacceptable.

10. On Sunday I backed into another car in the parking lot. Although in all fairness, it was probably her fault as much as mine but I took the blame). A police report was filed and now my insurance is going to go up.

11. I feel like a horrible mother right now. I worry that I don't hold Ellie enough or stimulate her enough. I also worry because I don't have any one on one time with Gabe and I know that it is affecting him. Its not like I'm doing other things during the day. I don't know where my time goes....oh yeah, pumping and feeding Ellie. Everyday I lose my cool with him and he doesn't deserve that.

12. I made an appointment with the pediatrician because I think there is something wrong with Ellie's vision. Hey, why not throw a pediatric opthomologist into the mix of doctors involved in my daughter's life. The more the merrier.

13. My grandfather passed away about a month ago and my mom is grieving. I don't know what to say...or really there is nothing I can say...to make it better.

14. I cried today and I hate crying.

Seriously, when is the drama going to end. I just want to live a boring old life. Please, that's all I want.

428 - 10 - 8: A Number Post

2009-09-13T14:00:00.000-07:00

428 - The number of ounces of breastmilk I currently have in my freezer. My best guess is that it will take about 960 ounces of breastmilk to cover one month for Ellie. Of course, this is for sometime in the future when she is theoretically drinking about 32 ounces a day. Since my girl doesn't really like to eat a lot, I view the 32 ounces as a stretch, especially if she is eating solid food at the same time. Currently, we try desperately to get her to take 21 ounces a day. This equates to the exact amount of calories she needs to gain weight.

10 - The number of days I have been without a washing machine. We have horrible luck with washing machines and this is our second one in eight years. I swear I don't abuse them or overfill them. I don't know what the deal is. Our new one won't be delivered until Wednesday (a full week after purchasing it). This time we bought the extended warranty therefore guaranteeing that it won't break in the next five years but most certainly will in the sixth year. It is really difficult to be without a washer for that long, especially with a baby. Also, since I've been without a washer I've been forced to use disposible diapers instead of my cloth diapers. I miss my cloth diapers, they are so much better than disposibles. My cloth diapers hardly ever leak, but with the disposibles I currently have a giant pile of poo covered baby clothes that I cannot wash.

8 - Ellie is currently weighing in at 8 pounds. Hooray! We worked hard to get to that 8 pound mark. Even at her adjusted age, she is still only in the 3rd percentile. Just 12 more ounces and she has doubled her birth weight. Strangers always comment on how tiny she is and remark, "Ooooh that is a new baby". I don't usually tell them that she is actually almost 3 months old. She is still wearing newborn sized clothes, but she is almost to the point where she is too long for them. She has a crazy long torso.

This week Ellie has her MRI. I am dreading that for sure....not the procedure itself, but the findings. I really don't want to know if they find other structural issues with her brain. It will just give me more things to obsess and worry about. The only reason I agreed to have one right now is just in case more surgery is needed. I know the pediatric neurosurgeon mentioned that another one might be called for once she is at least 6 months old. I don't want to think about that right now though.

Buzz and Woody

2009-09-07T07:02:00.000-07:00

Finally Back Home

2009-09-03T06:19:00.000-07:00

The thing about Children's Hospital is that there is always someone worse off than your child. That is neither good nor bad, I don't think a value should be placed on that statement. I'm simply saying that it helps you keep perspective.

I was a bit surprised this time that Ellie was not back in the NICU. Instead, she had a private room on a different floor. Parents were not allowed to sleep in the NICU so there was no point in staying all night at the hospital. However, I could not leave my tiny baby in a room all by herself all night. What if she cried? No one would even know. Needless to say, I spent Monday night with her.

Tuesday, Ben and I waited and waited for them to come and get Ellie for surgery. She hadn't been allowed to eat since midnight and it was getting well into late afternoon. I was very frustrated, even if there was no on to be frustrated with. The poor girl was starving and crying. Finally, about 3:00, they took her for surgery. She was back to her room by about 4:30, so it was pretty quick. The doctor said the tube that ran from her brain to the regulator was blocked so he replaced it. The regulator and the tube that ran from the regulator to her stomach was fine.

The staff all agreed that we should not give Ellie morphine this time after what happened with the last surgery so she hadn't been given any pain meds as she was waking up. I held my poor girl as she whimpered in my arms. It was truly heartbreaking and I had to fight back tears. Once she was awake enough, they gave her some tylenol with codeine orally. As we were waiting for it to take effect, her heart rate was climbing higher and we both started fearing a downward spiral like last time. It took about an hour before the pain med kicked in and then her heart rate started to return to normal.

Ben stayed up at the hospital with her that night I went home to stay with Gabbers. We thought Ellie was going to be discharged yesterday but they decided to keep her overnight so I stayed with her again last night. We were finally able to come home around 11AM today.

I wonder how many more times we will have to do this. Sometimes its tough being a parent.

Finally Home Again

2009-09-03T06:07:00.000-07:00

Tuesday Ben and I waited and waited for them to come and get Ellie for surgery. She hadn't been allowed to eat since midnight and it was getting well into late afternoon. I was very frustrated, even if there was no on eto be frustrated with. The poor girl was starving and crying. Finally, about 3:00, they took her for surgery. She was back to her room by about 4:30, so it was pretty quick. The doctor said the tube that ran from her brain to the regulator was blocked so he replaced it. The regulator and the tube that ran from the regulator to her stomach was fine.

The staff all agreed that we should not give Ellie morphine this time after the last surgery. So she hadn't been given any pain meds as she was waking up. I held my poor girl as she whimpered in my arms. It was truly heartbreaking and I had to fight back tears. Once she was awake enough, they gave her some tylenol with codeine orally. As we were waiting for it to take effect, her heart rate was climbing higher

Real Quick

2009-08-31T08:36:00.000-07:00

I'm about to head back up to the hospital with Ellie. They tapped her shunt today (basically stuck a needle in her head to drain some fluid to test the pressure and to send a sample to check for infection). They believe her shunt is partially blocked so they want her admitted tonight for observation while they wait for the test results. If she does not have an infection (probably not, the fluid was clear) then they will do another surgery tomorrow.

Hopefully things will go smoother this time. I hate spending these nights apart from my baby.

Wish us luck.

PS - Gabe was a champ the whole time as we waited and trudged all over the hospital from the neurosurgeons to the ultrasound to X-ray and back. He was a great listener for the most part. Way to go buddy!

My Poor Girl

2009-08-30T13:39:00.000-07:00

She's been through so much already.

I have a feeling tomorrow is going to be a crappy day.

Starting yesterday, Ellie's soft spot has started to bulge slightly. This isn't the first time since she's been shunted that this has happened. However, since I haven't yet wrote that update you don't know about that fun little day yet. In addition, her shunt site has swelled up. The combination of these two things do not bode well for my tiny girl. Most likely this means that parts of her shunt have disconnected and she will have to have a revision done (aka another surgery and quick). We called the 24 hour line for her pediatric neurosurgeon and he called back within five minutes (how's that for service). He told us if she started vomitting or acting like she had a headache (how you can tell with a ten week old, I will never know) then we were to go to the ER, otherwise we need to come into the office at 9AM tomorrow.

Revisions are very common, I would actually say they are expected, and it is very common to hear about kids who have had between 5-10 revisions in their young lives. Ellie has had her shunt for two months and I had hoped to make it a bit farther before bumping the count up to two. I dread the surgery for sure after what happened last time (with the ventilator and what not). I know I will be instructing them not to give her morphine this time since that seemed to instigate the down hill slide after the last surgery.

Even if they don't do the surgery tomorrow, the day will be very long. The wait to see the doctor is very lengthy even if you have an appointment and since we are just showing up, it promises to be even longer. That is the downfall of Children's...long waits and being simply a face in the crowd (its a VERY busy hospital). Plus, I have to bring Gabe with me which I am really dreading. Typically, he stays with Ben's parents during any and all appointments, but they are out of town. I'm not sure what it is, but my usually well behaved child turns into a complete monster at any doctor appointment. So add Gabe's behavior to a already stressful situation and throw in the difficulty of pumping every two hours somehow and feeding Ellie and you have a total mess of a day....and that is without even considering what is happening with my girl.

My stomach has just been in knots since yesterday when this all started. I am so anxious about how Ellie is doing and I hyper analyze everything. I can't help it. There is nothing worse than having something wrong with your kid...especially if that thing can be life threatening.

My poor, poor girl.

Update Still Coming - In the Meantime, Pictures

2009-08-29T13:42:00.000-07:00

The Boy:

Corrected

2009-08-28T15:34:00.000-07:00

Once again, sorry to disappear like that. Things have been crazy and stressful and I promise to update on the happenings over the last month plus (eek, that is long). However, that is a longer post than I have time for today.

I have exciting news to share though. Ellie's club foot has been repaired and it was relatively easy. Back in July she had an appointment with the orthopedics people out at the Children's Hospital. I thought it was just going to be a consultation...this is what we see...this is what we are going to do....come back next week. However, we were called back to the room and the guy starts whipping out cast supplies and I'm all like, "Whoa there bucko, what's the deal here?" I don't know about you, but I need to brace myself when they are going to be doing something to my child. Shortly thereafter, the doctor breezed in, poked at her foot, and the started putting on a cast. I won't lie, I cried all the way home, even if Ellie did not.

The plan was to have the cast replaced once a week with each week correcting the foot a little bit more. He thought it would take 2-3 months and most likely would not need surgery. So faithfully, we trudged downtown every Thursday for a cast change through rush hour traffic. Luckily, it only took 4 casts to over correct her foot and as of last Tuesday, she is cast free. Hooray!

Here is what her foot looked like before:

Here she is with her third of four casts (in the second picture you can see her shunt tube in her belly, hopefully she will fatten up some day so it won't be so visible):

Here is her foot today:

Doing Well

2009-07-18T10:18:00.000-07:00

Sorry to leave everyone hanging there for so long. Things are just...well....crazy, as you would expect with a new baby in the house. Ellie won't latch and has had feeding issues from day one. She isn't overly interested in eating and has to be roused every three hours and basically force fed which is time consuming and frustrating. Generally, I would be against this policy, but since she didn't gain weight for weeks it was a must. After the shunt was put in, she started doing a lot better, but it still is a battle sometimes and can take up to an hour to get her to take her two ounces. Since she doesn't latch and will much more readily drink breast milk rather than formula, I've been pumping and bottle feeding her. In addition, we are fortifying my breast milk with a 1/4 tsp of high calorie preemie formula to bump up the calorie count. So to do the math, I pump every two hours for twenty minutes and she eats every three hours for about an hour. And that my friends, is where all my time goes. I've been painfully working my supply up (afraid of what will happen if I can't keep pace with her). I've learned to stay away from websites where people talk about how they can pump 4-6 ounces in one session. That depresses me since I get excited when I can get two ounces. Oh well, we are managing. The good news is, she has gained a full pound since her birth a month ago and now weighs five pounds, six ounces.

Ellie has been home from the hospital for almost two weeks now. Her shunt (knock on wood) is doing really great so far but we have been warned that they have a high failure rate. We had some really scary days there in the NICU. Ben and I split the day so that one of us was with her at Children's Hospital and one of us was home with Gabe. It is crazy how much her soft spot has sunken in as a result of the reduced pressure on her brain. Her head is still larger since the bones obviously won't shrink, but her brain will grow into the bones so essentially she will grow into her head. Not to state the obvious but its so great to have her home.

Gabe has been amazing! He is the greatest big brother and just loves Ellie to death. He has been so gentle and caring towards her. In return, she stares at him more than anyone else (including me). We haven't had any issues with jealousy so far. The only problem we have is keeping him entertained. We took him out of daycare since I'm not working and he isn't used to so much unstructured play time. I definitely have to find a preschool for him for the fall/winter. That is on my to do list for next week.

I suppose you want some pictures, huh?

My beautiful little girl (those are still preemie clothes...I think she may be able to move up to newborn sized clothes by September)

I love how she holds Ben's finger while he burps her.

Gabe has never looked so big to me as he does now.

Quick Update

2009-07-03T14:32:00.000-07:00

Ellie came off the ventilator today...thank goodness! She sounds really raspy and wheezy which the nurses and doctors attribute to irritation due to the tube that was in her throat. She is eating like a champ and resting comfortably.

Its been a scary few days but I hope we are turning a corner now.

Thanks everyone for your prayers and good wishes, they are much appreciated!

More Prayers Needed

2009-07-02T01:45:00.000-07:00

After initially doing well after the surgery, at about 2:30AM Ellie was put on a ventilator.

Any and all prayers are appreciated.

Scary Day

2009-07-01T01:28:00.000-07:00

If you could send some prayers or good thoughts my way today I would appreciate it. Ellie is having her shunt placed today to drain the fluid from her brain.

I think I'm going to throw up.