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Thursday, December 6, 2012

Medical and Therapy Update

Play time! 
Attempting to get a Thanksgiving picture was not that easy!
 -Thank you for praying for our visit two weeks ago with the pediatric neurologist.  It went very well, and we are grateful to have a local neurologist on our team!  We were thankful for the doctor’s wisdom as well as his medical knowledge.

-John also saw a mitochondrial specialist (one of two in the area people travel from all over the world to see!) last week.  She was great!  We decided to start John on a new medication: Leucovorin.  It is basically something that occurs naturally in most of our bodies (Folinic Acid), but some children with mitochondrial dysfunction are deficient.  You can’t know without a spinal tap, but there aren’t any side effects according to the research so we will try it out and see if it helps!  It’s kind of exciting to have a new medication that may help! 

-John continues to love horseback riding.  Last week, Pinkie was lame so John got to ride a big horse named Goose.  John sat tall and proud!


-Swim therapy is also going well!  It’s harder to make it a regular occurrence in these colder months (don’t worry, we go to an indoor pool!), but John continues to make progress.  Before starting swim therapy, he rarely kicked one leg and then another (instead he would kick both at the same time).  Well last week, he did 8 reciprocal kicks and then this week achieved two PRs!  13 reciprocal kicks and then later 14 reciprocal kicks at the end of the session!

-John has a new physical therapist coming to the house once per week.  His initial evaluation was last week.  We pray the Lord uses Katie in wonderful ways in John’s life! 

-Please continue to pray for crawling and sitting.  Thank you so very much!!

-Lastly, I’d love your prayers for wisdom regarding Medicaid and the public school system (that is how the state provides services for children with disabilities after they turn 3).  

*And we'll end with a laugh... here we are last night attempting to get our Christmas tree and a cute family picture.  We achieved one of our goals.  And made some memories. :)




3 comments:

  1. I absolutely LOVE the Christmas tree pics! It just screams the reality of parenthood! And John smiles all the while! xoxo

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  2. Hey Mary Elizabeth! I have loved reading your blog and looking at all the sweet pictures of your family. I wanted to let you know that I am not currently practicing, but I have a good bit of knowledge in the area of special education law and the IDEA, ADA, and Rehabilitation Act of 1973 if you ever wanted to chat or grab lunch and chat about such things. It is such a complex area of the law and there are so many great resources available to children, but unfortunately they make it so confusing for parents to navigate. I hope y'all have a very merry Christmas!

    -Alice (Henderson) Strachan

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  3. thanks for the update! praying for your sweet fam and especially for john. you look so happy in your antlers - i love it!!

    LOVE YOU!
    hannah

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