Joey's Christmas Present to his Mommy and Daddy

Two Christmas presents. One for Mommy and one for Daddy. Today when mommy and daddy were feeding me, they brought the sippy cup toward my mouth and I SAW IT and opened my mouth for a drink. This time instead of biting it to get the water, I used my lips and mouth to suck on the sippy cup. I was able to suck and continue drinking at the same time. Mommy and Daddy had tears in their eyes. 

Merry Christmas!

Becoming a Scrooge!

Over the years I have become a scrooge. The planning and shopping and wrapping and cooking it's just to much. We celebrate Hanukkah with my family. A Hanukkah party with my moms side and then another with my dads side. We also celebrate X-mas with my husbands side of the family. So things are busy.

The kids have been given homework on their vacation, and not just a little, but BIG projects. I HATE homework. We leave on New Years Eve to go camping. Yeah! Camping is very relaxing and a great way to start of the new year. 

Amongst all the holiday hoopla, I am still taking Joey to his therapy. Twice a week down near LAX we go. He just began his tomatis therapy again. This seems to really calm him and center him. We are not doing any other alternative therapies (ie: HBOT, NeuroSuit, Biofeedback) for a while. I am working on getting Joey to China for Stem Cell Therapy. I am also continuing my research on other alternative therapies. As far as 'How Joey is doing', he made a lot of improvements after his last NeuroSuit session in November and has now plateaued. Which is OK. He is loose and happy and is finally gaining weight after 2 years. Hopefully in March his feeding tube will come out. 

Happy Holiday and Happy New Years to everyone. May 2009 be the best year ever.

My Therapies

I get asked all the time about Joey's therapies. I added a sidebar that lists the therapies Joey has done and is currently doing. 

I am currently researching Stem Cell therapy for Joey. Many kids with the same injury as Joey has had this procedure and has improved greatly. SCT is where they take stem cells either from a fetus, umbilical cord or born marrow and transplant into Joey through IV. This helps create new cells in Joeys brain. I have been researching for a few months now. The therapy cost more than I have ever spent on therapy (approx. $15,000-$35,000, no including travel expenses). It is an amazing therapy and I believe it is worth every cent. Although I still have a couple more months worth of research to do.

Hope everyone has a very Happy and Healthy Holiday.

What I'm Thankful For..............

Happy belated Thanksgiving to everyone. 

Over the Thanksgiving holiday, our family went camping. We have a motor home, so I don't know if you can really call it camping.  Anyways, Joey did not like camping. He has never been this difficult before. So to say the least, camping wasn't as relaxing as we hoped for. Joey showed his displeasure by being stiff, not wanting to eat or sleep and was fussy all weekend. We haven't seen this behavior for about six months or so. Of course as soon as we got home, he was back to himself.

This weekend reminded me of how lucky and thankful we are to have Joey. For years now, we have been so concerned with what Joey can't do and forget what Joey can do.  You forget how important the little improvements are, like being able to hold your bottom lip with your upper teeth, or to bring your thumb and index finger together or to mouth your hand or mommy's cheek. I remember the day he couldn't relax or hold his head up or eat or smile or laugh. It's hard to have seen your son as a typical child and what his potential could have been, to now see your child a completely different way with his potential being much different. Yet I am thankful to have my son and thankful for what he can do and thankful to have a future with him.

I am VERY VERY thankful for my son Joey. For his little and big improvements. I'm thankful for all my family, and friends and therapist who have become my other family and my support group who is always there for me and for YOU.

Reassessment

Approximately 9 months ago, Joey and I started a program called AIAHP (Australian Institute of Achievement of Human Potential). This program involves therapists from Australia coming out to assess Joey and put together a home based program. I am given a home program to work with Joey that involves PT, OT, ST, Vision, Sensory, Oral Motor and Intellect. Every 6 months, give or take a few months, the group comes out again to reassesse Joey. During their first assessment, all of what Joey can do is charted. During his reassessment the improvements are also charted. It can take many years for kids to advance along this chart. There are 6 categories on this chart, example: Gross Motor, Fine Motor, Visual, Auditory, etc.  This weekend, Joey had his reassessment. 

GREAT NEWS, he moved up the chart in three different areas. He also gained 35 new functional behaviors. YEAH!

I can't say that it was all due to this program alone. I believe it was due to the combination of his HBOT, Neuro suit, Tomatis , biofeedback and Equestrian therapy and basic Physical and Occupational therapy. 

I'm pleased to know that all the time and effort and hard work Joey and I and our family put into helping Joey is working.  We still have many years and hard work and levels on the chart to climb, but we are up for the task.

 

My Prize

Today Joey finished his three week intensive Neuro suit therapy session. He also finished three weeks of Tomatis (listening) therapy. 

The first week of therapy was very frustrating. We didn't see much from Joey. Then the second week things began to happen. He began to get better control of his head and arms. By the end of the third week the changes were very apparent. His head control improved alot, his arm control and his control of his eye's improved.  He began to walk with help from two therapists, with no walker or gait trainer. Although the most exciting thing is he began to talk more and a bit more clear. He made all the therapists cry when he said "I Love You". He would say "Hi" when asked and would say "No" when he didn't want to do something. He is a lot happier.

One of the other children, a five year old girl, asked me what Joey was getting as a prize for doing therapy. She was going to Disneyland for the weekend. Joey got a new puppy. Well the family got a new puppy. His name is Winston. He is a Goldendoodle.

Well thats about it. Please pray that Joey will continue to improve and not hit a plateau.

Progress..........slow but steady!

As many of you know from my last post, Joey has been going to suit therapy again. Unlike the first time Joey went to suit therapy, Joey's progress this third time around is slow.  I have noticed that his fine motor skills within his hands have gotten better. He brings his fingers together when he hadn't before. He also seems to be trying to suck. His tongue and cheek movement have improved. His cognitive awareness has definately improved and his feet have also improved do to his AFO's that he wears. 

We still has two more weeks of intensive suit therapy left. Our goals for him are to get him to roll over continuously from tummy to back and vice versa. We also are trying to get him to walk in his gait trainer while wearing his AFO's. This seems to be a challenge for him (forgetting the fact that he doesn't like his AFO's). Of course I wish and pray for faster progress, but will accept his progress slow as long as he continues to progress.

Otherwise, Joey is a very happy boy these days. He is eating well and waking up too early in the morning. His school is on hold for these three weeks of suit therapy. I'm sure he misses his friends. Only two weeks left, then he returns to school.

I'll post more pics soon.

Blessings Always