The House of Doo

The House of Doo

Thursday, August 7, 2014

Reaching Out.

Following our geneticist's recommendation, I am now trying to get physical therapy through the school system for Colt.  Here is my latest email (minus names) to the county Special Education Services:

Ms. I.,

I have a little boy (Colt D., 3 1/2) that receives speech therapy through Cherokee Ridge. He was tested by T. C.  in October 2013, after aging out of Babies Can't Wait. We were assured he would qualify for Special Ed Pre-K because of his delays, but indeed, he did not. I was told his cognitive ability was too high. I realize that is a good thing, but it left us with a lot of problems and no solutions, also nowhere to go. We ended up at Siskin Children's Institute and love it, however, because we live in Georgia he cannot receive therapy through them. I mentioned we get speech and I am thankful for that, but he was receiving PT through BCW and wasn't approved for it through the school system. I was very unhappy with this testing and I feel that because he DOESN'T have a diagnosis, he is allowed to let "fall through the cracks." Luckily, we see some amazing doctors that are trying to give us direction, but none can seem to figure out why our school system isn't helping us more. We recently saw Dr. Stevens, our geneticist, and she strongly recommends Colt receive PT again. Can you please help me? What can I do? 

I was referred to you by C. H., a dear friend and W. County teacher. She has a son that has some similar issues to my son now and she has been a wonderful resource and sounding board. 

Thank you in advance for any help or direction you can give. I refuse to let my precious boy fall through the cracks. He doesn't deserve that.


 So, here's hoping we can get a little help and hopefully add PT back in to our life.  Wish me luck!

Monday, August 4, 2014

One Year Genetics Follow-Up

Today was our follow-up with Colt's geneticist,  Dr. Cathy Stevens. If you have been following Colt's journey for the last couple of years,  you will know he has been through lots of testing to try to find the root of all of his developmental delays. We had two rounds of genetic testing done with no answers and decided to stop for a year and see what happened. Colt was having nightmares and it was getting harder and harder to watch him scream and fight while they put him to sleep or poked him with needles.

So, it's been a year and here we are, a whole year of unbelievable progress from our precious boy. We have so many people to thank for that - therapists, praying friends, fantastic teachers, and a very supportive family. Dr. Stevens was VERY pleased with Colt's journey. She couldn't believe how much he can say, when only months ago, he communicated with signs and very, very few words. She says he is still terribly large with a large head, but now thinks the head size may be genetic. Thanks,  Ryan. ;)

She is still a bit concerned with his low muscle tone. She thinks we should get back in with a physical therapist and is writing us a recommendation. She thinks that should also help with jumping, climbing steps, etc. The speech therapy should continue for enunciation/clarity purposes.

She also would LIKE another MRI to check his brain damage and see if it has changed at all. However,  we are going to wait. It really won't change anything for him right now,  so maybe if he is still behind his peers before starting Pre-K, we will have another one.

So, there we are!  Continue therapy and wait it out. Now though,  I have no idea how to go about getting PT started again without the help of Babies Can't Wait.

I am very happy with the visit and thrilled to know she doesn't think we need to pursue any more testing for now. Our hard work and awesome support system is paying off.  I can see that in Colt every day.