Maddie has had some developmental delays thus far among other congenial issues and I haven’t written about it just because I was hoping it was going to go away or be a non-issue. So I’m going to start writing about it all so it’s documented b/c I am starting to forget and for me to vent and deal with it all because it’s very stressful. We’re taking it all one day at a time because otherwise I freak out Googling about every symptom, condition, or change.
Maddie was born with three holes in her heart and low pulse ox, the holes have since closed up, so that it great! The same week we went to the cardiologist, she was admitted into the hospital for wheezing so now we see a pulmanologist and treat her for asthma.
Also she’s at 5 months (she’ 10 months) in gross motor, 6 months in fine motor, and a little higher in everything else with her verbal being the highest which is the low end of average. She has hypotonia (low muscle tone) which results in a lot of the delays. We saw a genetist and are waiting on the results, had an MRI which indicated delayed myeleniation and are seeing the neurologist in 2 weeks which hopefully will give more answers.
I expect to have another MRI in a few months.
She has some eye issues in that her eyes aren’t aligned so we’ve been patching every day but she will most likely still need eye surgery.
She does PT weekly to work on her mobility, but she’s not crawling and just started pushing up at 9 months. She back scoots to get around and can roll. She can sit up unassisted when positioned (8 months).
This week we heard her use multi-syllable nosies, ba-da, da-da, va,da and were excited about that.
She’s been evaluated and enrolled our state’s early intervention program which will help coordinate evaluations, treatments, and work on her meeting her goals with her individual education plan (IEP). I’m sure I’m forgetting something as there’s lots to note and I’ve started making a binder of all her information. I’ll probably post some posts on her individual issues as there’s a lot involved in each one.
She’s such a happy baby and so relaxed and easy going. We just compare her to herself and she is making progress, it’s just at her own pace. She loves to watch Victoria and Victoria is her best motivator and we love her so much!
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