Tuesday, January 13, 2009

Next Steps

It has been so long since I posted. We have been so busy and yet sometimes I feel like we have not gotten much done. That must be the perfectionist in me.

Mikah is doing amazing! I will attempt to get a picture into this posting. I am not the most computer savvy so hopefully I can figure it out:) Ellie has been telling everyone that Mikah will walk when he is 2 y.o. Well, I am not sure that will happen since his birthday is this month on the 23rd but miracles do happen everyday. He is moving forward though and that is great. I also want to try to post a video of him going down his ramp. He has been using his legs in a crawling motion and he zooms down.

We are taking this week off from patterning to take time to recover from mommy and Ellie being sick and we are adding in a couple components to his home program. We started a reading program yesterday. This is for both Ellie and Mikah. When I brought out the cards and started going through them with him he became very excited! It was so wonderful to see him enjoying himself.
We are also starting an Oxygen enrichment program this week called masking. This will allow more oxygen to reach his brain and also help to expand his lungs and make his breathing better. His pediatrician is very excited about this part of the program and we found out he has been spreading the word about Mikah's program and all the progress he is making. Everytime we walk into his office he goes on and on about what a different child Mikah is each time he seems him.

Mikah is doing fabulous on the blended diet and seems to be really thriving for the first time in his life on real food. It is a vegan diet with lots of veggies! He has also been occassionally asking for food to eat orally. And if we don't figure out what it is that he is trying to tell us, he becomes very upset! The reading program should help with our communication too. We are going to create Choice Boards. Today we are actually going to start learning some of our "choice" words. Yes, No, Eat, Ouch, Play, Done, More, Maybe, Other...

I was creating all the reading cards and lists of words and I found myself getting really excited! There are so many words I want to teach them! We have always loved to read and it is such a joy to be able to share that with our children especially Mikah. We may not be able to share a walk in the park or watching him go down a slide or chase his sister right now but I can share with him the experience and joy and fun of reading. It fills my heart with joy.

I am so anxious to go back to the Institutes. I want to learn so much more about how to help Mikah and I desperately want their insight and guidance and encouragement for the programs we are doing with him. Another couple that was in the class with us in June described going back as a "breath of fresh air". And I believe them. It was a breath of fresh air just to read their post on their blog about their visit.

I am actually going to be calling the Institutes today and talking to them about setting up a Home Program consultation. This is where we do an extensive phone "interview" with them about where Mikah is, what we have been doing with him and what we should be doing with him. It is the next best thing to taking him to the Institutes. Afterwards, we work on our new program for three months and then call them back and let them know what we have done and where Mikah is and they will let us know if he is accepted into their Intensive treatment program. If he is then we get to take him to the Institutes and over 3 days they meet with us and Mikah and evaluate him and create an even more specific program for him. Dave and I would also receive 2 days of "continuing education" in the form of intensive lectures. We are excited about the next lecture series as they discuss even more about brain injured children, nutrition, masking and intelligence programs.

Frequently I think there is so much more I should have been doing with Mikah. It seems like June was so long ago and I have been reviewing our notes from the Institutes and realizing there are many things we are not doing quite right or that I just plan forgot. I am also continually trying to remind myself how much he has improved. When we took the class at the Institutes he couldn't even lift his head and was pretty much like Ellie's Raggedy Ann doll, floppy and limp. He was constantly sick and vomiting and refluxing and not sleeping well. He was gaining less than a pound a month. Now he is holding his head while on his belly, he supports himself, he doesn't get sick nearly as often and vomiting is rare. His relfux is improving and for a while he was able to be completely off his reflux meds. He is also sleeping. Most of the time :) And since we started his blended diet he is gaining OVER a pound each month! He is also MUCH stronger as his patterners will tell you :)

He may not have progressed developmentally as much as mommy was hoping but his health has improved by leaps and bounds. With this New Year I am hoping and praying that he learns to read, learns to eat a little more and that he WILL be walking by his 3rd birthday. That next Christmas he will be tearing around the house trying to pull all the ornaments off the tree. I pray for faith like Ellie's to be able to believe that he will be walking on his 2nd birthday. These are my hopes and dreams for my little boy.


Toole Photography said...

Beautiful post Michelle. We were actually talking about your family last night in small group. Personal testimonies was the subject and the impact that the life experiences of believers and the stories that we share can have impact on both those who know Christ and those that don't. Reading these posts have immense impact. Thank you for sharing them. Please don't let 4 months go by before your next one. ;)


Toole Photography said...
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teresa said...

I am amazed everytime that I see Mikah and the improvment that he makes. I look forward to the next year and all of the exciting things which God has in store for your family. These posts are an encouragment to all of us.