Archives for November 2008

Just one week shy of her 4-month birthday, Hannah reached out and grabbed a toy for the first time!!  Yay!  An important milestone reached!  I hope she continues to try and reach for everything she wants!

[youtube=http://www.youtube.com/watch?v=o3tTcUOb7vw]

The lady from ECI came over this morning.  She is a nurse that works to assess children to see if they qualify for the early intervention group of programs.   We went through all her symptoms, and the list of specialists that she currently has (a pediatrician and 5 specialists).  Because of Hannah’s possible diagnoses, she is automatically eligible for services.  (I don’t know why that is more upsetting to me than comforting.)

Long story short, we have another meeting with an ECI specialist and a nutritionalist (because of Hannah’s possible metabolic condition) on December 3rd.  They want to have Daddy there too, because that meeting is to come up with a plan of action.

Since Hannah is really too young therapy services at this point, I think, the nurse said they may just monitor her monthly just to keep tabs on her development.  If she does show signs of any type of delay, the appropriate therapy will be ordered immediately since she will already be in the system.

Her eye doctor appointment went better than I expected.  I kept thinking how much I hate getting those eye drops in for dilation and sitting there staring into those machines.  How the heck would they get an almost 4-month-old baby to do that?

Well, they used drops that first numb the eyes that supposedly feel like water.  They must have been close, because Hannah was a bit annoyed at first, but then she got over it.  Then, about 5 minutes later, they did the dilation drops, and she took it very well!

We had to wait 30 minutes for the drops to set in. 

Good news — no cherry red spots!!!  Not sure exactly what this rules out, but I know it isn’t the NPC or Gaucher’s.  But perhaps it is another type of disease that they can rule out.  Her eyes are anatomically normal!

She is a bit delayed developmentally with her eyesight, however.  It takes her awhile to find a noisy object.  Sometimes, she just doesn’t find it and isn’t really looking for it.  But when she does lock into something, she definitely can stay fixated on it.  Definitely something to bring up to ECI tomorrow.

Another appointment down, another one tomorrow.  Oh yeah, she has her ENT (ear, nose, and throat) doctor on Monday to check out her breathing and swallowing issues.

What I would give for some answers right now.

Hannah is 13 lb 1 oz!  I cannot believe how much she has grown!  I mean, she was 12.8 lb when they did her skin biopsy last week!  Crazy, crazy!

Her liver does seem bigger to him, maybe by a centimeter or so.  Her platelets are holding stable at 103,000.  Her spleen is still enlarged at 6 cm. 

He also started her immunizations.  Better late than never.  He did the 3-in-1 shot, but he is going to do this slowly and not do all the 2-month-old shots just yet.  Because her spleen is involved, he doesn’t want to overwork it with all these immunizations, even though he got the go-ahead from the genetics doctor.

New symptom or not…she has this, I’m not sure how you would call it, like an rough-skin patch on both of her ankles.  He termed it lichen-something or other.  I have an email to him asking him for the name again.  So, he wants us to slather them in vaseline tonight and cover it with a sock overnight.  Kind of like Big Boy E’s eczema outbreak routine.  He says it could be something related to whatever she has, or it could be totally separate.

The breathing issue is getting worse, and he wants us to see an ENT (ears, nose, and throat) doctor now.  Not like she doesn’t already have enough doctors already (this will be #6).   He saw the gasping when he was examining her.  It isn’t like she is struggling to breath, because I do look for the signs of that (nostrils flaring, chest retracting, etc).  She just gets so riled up with excitement sometimes that it starts.  But usually, it just happens mildly — that is what he saw. 

He called her a medical mystery.  I hate that.  I called my mom after the visit, and she told me I sounded “deflated.”  Honestly, that was a good description of how I felt. 

Tomorrow is the opthamologist for a retinal exam.  I’m PRAYING they don’t see any cherry red spots in her retina.  If they do find it, it means she most likely does have one of the lysosomal storage diseases (like NPC or Gaucher’s).  If she doesn’t have them, that still doesn’t rule those diseases out. 

I wish we could get something concrete soon.  Off to cuddle her some more…. her smile just melts my heart!

With all of Hannah’s medical appointments and everything, Daddy and I agreed that I would not go back to work yet.  Even though the medical bills are starting to pile in and we had to get Daddy a new car because his 8-year-old car finally bit the dust, we figured we are still going to be okay through the beginning of the new year without me working.  

Truth is, I hate not being around Hannah.  I love rocking her in my arms, having her fall asleep on my chest, seeing her smile when I come to pick her up from her pack-n-play, staring at me walk around the house while in her swing, stroking her face and hair, and just gazing into her beautiful eyes.  I’m not obsessive about it, as I don’t mind letting her stay and visit with our neighbors for an hour or two or hang out with my husband.  But when I do have her with me, I just want to be with her…play with her…hold her.

There are many times during the days that I forget that she is sick.  I have even gotten to the point where I don’t even notice her “tire” anymore (her spleen is so enlarged that it is sticks out the side as well as her liver).  I am always reminded when she has her little breathing episodes, which sound like asthma perhaps (going to talk to the pediatrician about that one next week.)

But I find myself getting caught up in what is going on when there is talk about the future.  When we opened her savings account for college, talking about going to elementary school, sharing clothes with her big sister when she is older.  I find myself freaking out a bit thinking “will she make it that far?”  And then, like now, I get completely crushed. 

I hate that all the diagnoses on the table have the potential of taking her away from me before she has a chance to even become her own individual.  I just keep thinking that it just can’t be possible.  I mean, why would God put us through so much to get her here, 11 years, only to take her away? 

The not knowing what is causing all of her symptoms is the worst.  I feel like I could better deal with whatever it is if I knew WHAT it is we are dealing with.  I hate thinking about the worst-case scenarios because with her symptoms and matching possibilies, they are too realistic and just suck. 

I feel like I can’t treat her normal yet.  I don’t want to put her in her crib in her room yet because I just want to keep her next to me at night, just in case.  She’s almost 4 months old, and I know she can’t sleep in that pack-n-play forever (and the crib won’t fit in our room).  I just don’t want to let her go.  I’m not ready.  I’m so afraid.  I’m just not ready.