Overall things look really good. Most of her scores were right around a 3 year old level. Her understanding of language is really high for her age.
It mentioned that she has a slight hand tremor and that as she gets older some daily living skills might get harder for her but based on the scores she is not going to qualify for OT right now (that is one nice thing of having a special ed degree and reading these test results, I get what all the scores mean and what she needs for qualification for things, Brent's comment was it looked like French and just to give him the Cliff notes).
It mentioned that at a few times during the testing that Jillian wanted to play with things and not do what they asked... she is 2yr old. That is so typical of a 2 year old. In fact we are just starting to see behavior where she is wanting to do her own thing and as much as it is frustrating sometimes, it is very age appropriate and shows that she is developing. Yea she is going to want to play with a toy instead of do hard work, I do too!
Her gross motor skills came out low. I don't think they are as low as the test showed and the full PT test we do every 6mo does not show her to be as low as their test did. Gross motor is hardest for her, but it is going to be.
So overall the test showed that her needs are physical and not cognitive which is exactly what we were hoping it would show.
I also got to talk to genetics on Wednesday (I had just complained to GI that genetics was not communicating and then magically they called). The woman called me and said she was returning my phone call and I was like "the call from like 2 months ago?" yea that one! They let me know that Jillian's muscles look like they are not used at all. She walks so obviously her legs are used. They have no idea why her muscles would look like that. I asked what we do next and they said we can rerun the big genetic test once a year to see if science has learned anything new that can help us. We will rerun it once a year in July but our chances of it telling us anything are still 20-30%. Other then that they don't have anything they can do for us. I find it hard to believe that there is nothing anyone can do to figure out an overarching diagnosis for my kid. I am really happy now that we go to Madison genetics for a second opinion next month. Hopefully they have some ideas.
We met with GI on Wednesday. Jillian is up to 25lb!!!!!!! She is still at the 5th percentile for weight but making it to 25lb is a huge milestone for her. We are going to leave her formula/tube feedings alone since she made weight gain. We are upping her acid reflux med and her gastric emptying med since she gained weight. We are also adding the rest of the meds on the mito cocktail. The mito cocktail is a mix of meds that are given to people with mito to help their muscle work better. Since our best guess is that Jillian has mito her GI dr wants to start her on the med mix for it. They are all vitamins so the likelihood of them hurting anything is super small. I would rather give it a try. We have ordered all of the vitamins online and are waiting for them to come it. Overall I think it was a good appointment. Other then upping meds we are leaving everything else the same. Right now from a GI standpoint Jillian is stable and that is a really nice place to be!
 |
| All bundled up for winter. Her lungs are not a fan of going out in the cold but she is good about keeping her winter stuff on between the car and home |
 |
| Just Dance Kids |
 |
| Playing stickers with Cheese. Auntie Sandi made her a sticker treasure hunt through my parents house. She loved it! It was fun spending time with people for the holidays. |
No comments:
Post a Comment