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September 3, 2003
Weekly, heck...we can't even get monthly going on here!
Ellie had an appointment with Dr. Gieron today. She's still not gaining weight/height/head
circumfrence the way she 'should' be, but she is gaining, so that's good.
Ellie is officially sitting independently now, and has been for almost a month
(bad mommie didn't update the blog...). It is so awesome to just put her down in one place and she doesn't fall over!
She's started reaching out for toys now, too (see the change in "Rigatoni Status"). She is still just shaking them to
play with them, though.
We are starting OT tomorrow with a new lady, as her old one left to have a baby.
I am kind of glad about that, as I wasn't pleased with the lack of work she was doing with Ellie. So, fresh start tomorrow!
I have also purchased Ellie's first age-appropriate toy - a little pink ride-on
fire truck! She can't really move it on her own yet, but she's trying real hard. She doesn't really grasp the
concept that she can make it move all on her own. But, she will. It is just going to take time...a long long time...
Well, that's about it for now. I'll post more, oh, probably when she's 12!
July 23, 2003
Okay, so this is more of a weekly blog than a daily one. So shoot me, we're
busy!
Ellie has started OT, but I don't really care for the style of the OT, so we might
be changing. She doesn't really talk to Ellie directly at all, or really try to engage her in any activity. Nor
does she explain to me why she is doing what she is doing. So, I'm probably gonna change to OT at All Children's Specialty
Care, where Ellie gets Speech and PT, too.
Anyway...Ellie is doing very well. She just had her 12 month old shots yesterday,
and what a little trooper she was! She cried this time (which we like! Shows that she has body awareness!!), but
stopped after a few minutes of cuddling and playing with the paper on the table. She cracks up laughing everytime she
plays with the paper on any doctor's examining table. You'd think she was watching Comedy Central or something!
So, we left the doctor's office with her clutching some paper and headed toward
Campbell's Dairyland for some much deserved ice cream! Ellie had her first soft serve, and boy, did she like it!
She also saw some older girls playing on the playground toys, and she almost leapt out of her stroller to join them!
So, I helped Ellie play on some bouncy toys, and she had a great time! She really liked laughing along with the other
kids, too. Looks like it is time for a play group!
July 4, 2003
Ellie has been doing awesome today. She is really going strong on the learning
to crawl gambit. I think she'll be moving forward by the end of the month! (Editing to add:
Boy! Was I optimistic, or what? Little Nutbar didn't crawl until almost 6 months later!! I'll get this Ellie-time
figured out eventually.) That is, if she stops trying to hide under
the sofa...
Every time I turn around, she has got her legs under the sofa. At first I
thought it was an accident, but every day this week and last week, she'll roll and scoot herself over to the sofa and shove
her legs under it. Go figure. She's just getting acquainted with it for next year when she's pulling up
and cruising on it!
May 27, 2003
Okay, here is the skinny on Ellie's neurology visit.
First, Ellie still does not have a diagnosis. Dr. Gieron has ruled out most of the scary, progressive syndromes and
genetic disorders (based only on clinical presentation and her test results; Ellie has not been to see a geneticist or had
her DNA tested). Because she is progressing so well, Dr. Gieron isn't concerned about the progressive myopothies (these
are congenital neuromuscular disorders similar to muscular dystrophy, but much more rare), either, even though her muscle
biopsy back in September of last year did show that some of her muscle fibers are smaller than others. Apparently, this
is mild and so non-specific it doesn't signify anything. It doesn't mean that nothing is wrong, either, but clinically
speaking, it doesn't mean much, if anything and doesn't get us closer to a diagnosis.
Dr. Gieron was very pleased with Ellie's progress
in the 6 months since she's last seen her, but she wants to start seeing her more often. I don't know if that is a good
sign, or not. Ellie is still not sitting up on her own, crawling in any manner or babbling at all. But, she is
getting stronger with her sitting every day, and has started bearing weight on her legs.
One thing we are all concerned about is that Ellie
hasn't gained any weight in the last 6 months. She's gotten longer, but her weight is essentially the same and her head
circumference is small for her age. We are going to see a gastrointestinal doctor soon, but I am very worried about
her lack of weight gain. She is progressing cognitively, which is the biggest concern with babies who get classified
as "failure to thrive". She is still on the growth chart, but if she doesn't gain some weight by next month, she won't
be. She is happy, alert, as active as she can be and interested in the world around her, so I just don't know.
At the Ivillage online hypotnia support group alot of other parents whose kids have various hypotonia problems have trouble
keeping weight on. There is a consensus that our kids have problems with their muscles, and their muscles have problems
processing energy from food correctly. Many of the know causes of hypotonia are, indeed, related to metabolic disorders.
It appears that Ellie must have a metabolic component
to her disease. It is seeming less and less likely we'll ever know for sure what is "wrong" with her, but it doesn't
really matter, in the end. No matter the cause of the hypotonia, the only treatment is therapy, therapy and more therapy.
The only treatment for her seizures is anti-convulsant medication. Even if the doctor finds out tomorrow what Ellie's
syndrome is, nothing really changes. For most of the known congenital neuromuscular disorders, the prognoses are so
varied from child to child the doctor's won't give the parents any kind of a straight answer anyway.
May 26, 2003
I haven't updated in a few days (bad Webmommie), but we've got a little bit of
news.
Ellie has her appointment with her neurologist tomorrow morning at 9:00 am.
I am worried, but not as much as I was at her last appointment.
Ellie is doing so much better now. Her sitting (with support) is getting
better and better, and cognitively she is doing awesome! She is playing with toys more and more, and will actively reach
for and wiggle to the toy she wants! Yeah! Smart baby!!!!
I had wanted her to be able to sit up completely independently by her neuro visit,
but she's doing so much better all around, I'll take the 10 seconds she can do! Hopefully, she'll be sitting up by her
birthday next month.
Speaking of her birthday: To All Family Members who want to get Ellie a gift:
Please don't send clothes! Ellie's Grana just got her a whole bunch of adorable clothes and she really doesn't need
anymore. Books and toys (appropriate for a 3-6 month old or a 6-9 month old) would be okay. Of course, a nice
card would be fine, too. She is only going to be one, after all.
Can you believe that? My little baby girl is going to be one year old next
month
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