Archives for April 2009

So, we know that Hannah “doesn’t know how” to use her tongue when she eats.  I really paid attention to it today when I was feeding her, both with the bottle and attempting baby food.  I can’t tell anything with the bottle except for that she sucks really hard without much effort.  When I was feeding her with the spoon, she acts like I am torturing her and refuses to open her mouth.  If I put some in while she is crying with her mouth open, she spits it all out.  I felt so bad that I only tried this for about one minute today because I feel like I’m torturing her now that I know she doesn’t know what to do.

I asked Dr. Schiffmann, Hannah’s neurologist, about this development.  Apparently it is common for Gaucher’s kids to have this problem.  It is neurological, but as he put it, it is something that can be learned. 

During Hannah’s IFSP (individualized family service plan) with Early Childhood Intervion today (more on that tomorrow when I have the sheet in front of me), we decided to add speech therapy to the mix of therapies for Hannah.  Not only will they help her to use her tongue with feeding issues, it may also help her with her communication skills (one area which she scored lower than average).

The procedure went a lot better than I thought it was going to.

The worst part was the chest xray they wanted to take of Hannah before we started anything.  We basically had to hold her down by her legs and arms, and she was hysterical.  That part sucked. 

Then, they put the xray table on its side (up/down) and had this specialized infant seat next to it where she sat buckled in.  They then put the xray machine on the other side, so she was sandwiched in.

Using Hannah’s bottles that I brought, they tried various consistencies of barium from very thin (like formula) to pretty thick.  I also had to force feed her two spoonfuls of barium-laced applesauce, which I only was able to get in her mouth when she was screaming.  But this part of the actual test only took about 15 minutes.

PRELIMINARY RESULTS:  We will get the official results in about a week, but the preliminary results look really good.  She has no swallowing difficulties or aspiration of fluid into her airways during her feelings.  With the very thin formula-only, the speech pathologist said it looked like it was trying to go down the airway, but it never did.   RECOMMENDATION:  Do not give Hannah straight thin juice or formula (if we do give her juice, we are to add applesauce or rice cereal or something like that.  We are to continue with the rice-cereal formula, and she also approves of using the baby food in the formula to help make it thicker.

PRELIMINARY RESULTS II:  Hannah does not use her tongue correctly during feeding.  She curls it in a weird way, which explains why she dribbles so much when she drinks her bottle.  It is something she has done since birth.  Also, once she gets solids in her mouth, she doesn’t know what to do with it, which is why we have such a huge problem feeding her solids.  Once she does get the solids past a certain point, her involuntary swallowing muscles kick in, and there is no problem with the food going down, so it is definitely not a swallowing issue.  However, whether or not this is neurological is unknown at this time, so I have to ask Dr. Schiffmann, Hannah’s neuro.  It could be that she just needs to be taught somehow on the correct way to eat.  Either way, I’ll find out.

OVERALL:  I’m very, very happy with these results.  I was so worried about swallowing difficulties because we know that is a big Gaucher’s Disease symptom.  NO swallowing difficulties seen in today’s exam, and no aspiration of fluid into her airways.  This is HUGE positive news for me. 

Tomorrow we see her pediatrician in the morning, and she has her Early Intervention IFSP (individual family service plan) evaluation to see how she is progressing developmentally.  At 4 months, she was 2 months behind in almost everything (except socialization).  I wonder where she will be tomorrow!

Okay, I admit it.  I’m scared to death about this swallow study this afternoon.  Not about the process itself, although I question how they are going to get her to eat solid food from a spoon if *I* can’t even get her to open her mouth to eat it.

I’m scared to get the results.  It is almost like a crossroads type of result.  If it comes back “normal,” then we know the progression of her disease is slower than expected, which would be awesome.  If it comes back “abnormal,” then we know the disease is progressing and affecting her swallowing, which is one of the next symptoms to look for. 

I have heard from a few people who have had this done before, and there seems to be a mixed answer about getting results.  Some people have gotten preliminary results right then and there, some people had to wait. 

I don’t want to wait.  Please, please, please, please, please let the results be normal.  Please let her few eating quirks be just that…quirks, and please don’t let them be related to her Gaucher’s disease.

Oh yeah, she slept in her crib until 5 AM this morning!  We’ll try again tonight, maybe 🙂

Big mommy moment…

Hannah is asleep in her crib right now, at almost midnight.  I know, I know — I have been paranoid so she has been sleeping in our room in the PackNPlay.  But tonight, I realized that she is pretty smushed in there, so now that we have the video monitor and sleep apnea monitor in there, I can give it a try.

I can’t guarantee that I will let her sleep in there all night, because, well, yes, I am paranoid…But I am going to try.  I know it is more comfortable for her. 

Wish me luck!

Today, we were supposed to jump right back into things by meeting with Jenny, Hannah’s developmental therapist.  She still can’t do the back to front roll yet, as she can make it to her side, but she just can’t figure out what to do with her arm yet.  She can sit by herself and balance pretty well, but she can’t get herself into that position by herself. 

However, I am just exhausted after this trip and decided to cancel for today.  I’m keeping Abigail home today from school because she is beyond exhausted and was really acting up yesterday on the way home.  So, today, I’m going to concentrate on unpacking and doing laundry — we have a week’s worth of dirty clothes in there!

We have a lot of things happening  just over this next week
~ Developmental therapy – every Wednesday, but cancelled for today
~ Swallow study, this Thursday
~ Hannah’s fundraiser meeting Thursday evening (hopefully!)
~ Dr. B, pediatrician visit on Friday
~ Occupational therapy, this Friday
~ Cerezyme treatment, this coming Monday

I’ll admit it.  I’m scared to death about the swallow study.  I just want the results to come back “normal,” but I know that they very well may not.  Swallowing difficulties are one of the next symptoms we have to watch out for with her.  Although she doesn’t seem to have any swallowing issues yet (I attribute her lack of eating solids is because she doesn’t like US feeding her, as she has learned to have no problem with the food if SHE gets the spoon in her mouth).