Wednesday, June 2, 2010


Jude had therapy today, and I was able to attend. The good news is that Jude was eating for his speech therapist. He was opening, and closing his mouth, looking bites, and using his tongue. This is very encouraging for him. After speech Jude went to physical therapy with his therapist Kelly who likes to work Jude out. I like her because she pushes Jude to do more, although Jude would rather just lay on her bean bag (the red mark on his cheek is from speech therapy working with his cheeks and reflexes).

While Kelly was working with Jude she encouraged him to keep his head up, and I finally got the nerve up to ask a question. Let me preface this by explaining that Kelly wasn't being mean or discouraging in her response, she was just being honest. I asked, "In your experience with children that have such poor neck control, do they ever get to a point to where they can keep their head up?" I knew by the expression on her face, that it was a "probably not". She just replied that generally, no, but there are some who do find their way, and gain control. She mentioned how there are several of her kids that were older, and still weren't able to hold their heads up. However she did say that she fully expect Jude to roll at some point.

Jude has an appointment with the neurologist on 6/15, and we have lots of questions for him. Jude is getting closer to two years, and that's when they wanted to repeat the MRI. We will also have a swallow study done, and a new EEG. In addition I am going to inquire about the special bedding to help Jude's legs. We are also going to talk to him about emergency seizure meds since the seizures are becoming more violent.

Our new found friend "Reality Steve" wrote about Emily on his blog today. As of five o'clock Emily has received almost $1000 in donations, and has a new pleothra of facebook friends. Please take a minute to check out his blog Kudos to him for taking a moment out of his life to recognize an 11 year old girl, he is a very neat guy.


Liz said...

I read about your daughter and her charity on Your story is inspiring and heartwrenching. I am the mother of a 3 year old and I can't imagine how hard this must be for you, your family and your sweet boy. Best wishes to your family in the future. I hope to read great news about Jude's progress.

Candace said...

Glad you got to go to therapy.... I know that piece of information must be hard to hear. Hugs

Sherry C said...

I think Jude is going to learn to hold his head up .. my daughter had a CME therapy since she was 3 months old. Her therapist placed her on a table with head hanging over and slowly lifted her head to aline it with the table. On this website there is a video with picture drawings of a therapist and a child the third demonstration is the head control exercise. Maybe your therapist can look at it. I hope she's doing some exercises to help him learn to hold up his head. We did this twice or three times a day with Ashley until she learned it wasn't hard to do. We played music and she enjoyed it. We did on her back 5 times, and 5 times on each side. CME is great I hope you don't mind me sharing this.

This site is the creator of CME therapy. I'm sure Jude would be benefit from this. I could tell you more about CME if your interested it's so great.

My daughter is learning to walk because of this she is 5 and still can not stand but I know she will get there.

CME is so great because the therapist move your child body the way it should and do over and over again. They help teach your childs brian how to respond. They show the parents or care gives ways to do it at home and it's not that hard and really helps.

I hope you don't mind me mentioning this. I know there are so many different therapy options this one is just so great. If you visit CME website watch Teya's video it's amazing.

He is going to hold up that beautiful head of his. I'm so sure.