Four months went by so fast from Hannah’s 8-month DAYC summary testing.
- Cognitive Age Equivalent – 10 months
(at 8-month assessment, she was assessed at 8-month level - Communication Age Equivalent – 8 months
(at 8-month assessment, she was assessed at 6-month level) - Social-Emotional Age Equivalent – 14 months
(at 8-month assessment, she was assessed at 11-month level) - Physical Age Equivalent – 8 months
(at 8-month assessment, she was assessed at 4-month level) - Adaptive Behavior Age Equivalent – 9 months
(at 8-month assessment, she was assessed at 5-month level)
At least she is still gaining skills. Dr. B., our pediatrician, warned me months ago that the gap between where Hannah is and where other kids her age are is going to keep getting wider from here on out. I can start to see that now, especially when I see Hannah with other kids her own age and younger.
These results, along with the NIH’s neurological examination impression that Hannah is at a 4 – 6 months level neurologically at 11-1/2 months, definitely shows the obvious affects this disease has on her. This is, by definition, neuronopathic.
The only positive out of all of this is that Hannah doesn’t seem to know any different. Her skills truly are scattered, all over the place. I mean, she still can’t get to a sitting position from a lying down position yet she can stand and hold on to a walker for 10 to 15 minutes, even just using one hand for a minute or so while she plays.
The next assessment at 16 months is going to be very telling in terms of progression of her disease. It is starting to make sense why both Dr. Schiffmann wants to see her back in 4 months and the team at the NIH wants to see her in 4 to 6 months.
As you said, she is still progressing and she is still happy and she has a lot of people looking out for her. 🙂
Hey Carrie- I hope that this gives you some hope..Hannah is more advanced than Josslyn was at that age and Josslyn’s disease doesn’t even affect her learning abilities. She couldn’t transition out of any position until she started to crawl at 15 months. Heck, she never even put ANY weight on her legs until she was 10 months old even with getting PT and OT each twice a week!
There is hope. Stay optimistic. Hannah is making improvements and that is something to hang on too. Don’t worry about what other kids are doing her age, that’ll only remind you of how far behind she is. She is on her own schedule like Josslyn, and that’s okay!!
Yea for Hannah- I know she’s worked through therapy to make those gains! I know it’s hard to try to not let it bother you that she is behind her age level peers. Like you said, she’s happy and she’s making progress- that’s important! 🙂
It’s difficult to compare your child to everyone else’s child. Hannah is progressing… she’s doing it on her own curve. Try to not let the numbers get to you. (I know… almost impossible… that’s why I said “try”. Love you.
I am so happy to see her standing in that photo… she gets more and more beautiful each day. I can only imagine how hard it is to see the difference between her and other children given her disease because I know how it affects mothers of mainstream children. (I hope that’s the right word.) But it’s good that her spirits are up and she’s happy. As always I’m sending you guys good thoughts, bunches of hugs, well wishes, love and prayer.
.-= Petula´s last blog ..Wordless Wednesday: Picture perfect =-.