Thursday, January 26, 2017

Another answer!

I've been waiting until after Jaxon's physical therapy assessment was complete to update. We saw the therapist that he had for awhile as a baby. She pulled out her old notes on him, which were really interesting. Everything indicated his right sided weakness, even the fact he couldn't take any assisted steps unless you held his left hand only. Oh, hindsight...

Anyway, she had me called back to the room where she assessed Jax. The first thing she said was, "I know why his legs hurt him!" I was shocked! Even she was since she's so used to seeing Jax cruise around the clinic when he's there each week for feeding. She assumed she'd see his step/foot needed correcting and to just help us with the shoe inserts that we got from the rehab clinic.
She said his lower back muscles along with his hamstrings and ankles are all extremely tight and he has very little range of flexing. This alone would make anyone very sore after walking for any length of extended time. Add that in with any heat and his asthma will interfere as well, so she said she's not surprised at all that he'd be done after 15 minutes of walking.

She showed me a few moves that were very easy for her and I to do, and should be even easier for a child, but then she brought in Jax, and wow... he can't even bend forward and touch something 10" from the ground with his legs straight. I was shocked. She showed me a few others and it was just amazing to never realize this. Now that I know what to feel for, his legs are just so tight with very low flexibility. She said it was a very common CP symptom, but that it was great to see how great the rest of his strong body was. And given how outgoing and active he is, she wants to see him get better range of motion so he can enjoy long days out walking and enjoying activities now that he's too old for a stroller.

She also thinks that his legs have probably gotten a lot tighter over the past couple years with his sudden growth he's experienced. Which would make sense as to why we've notices physical issues arise more in the last two years. She thinks the private swimming with the physical therapy will really help his endurance - we hope it does! He doesn't like the feeling of the inserts in his shoes, so we'll be working our way up a little bit each day with him wearing them. Can you imagine having your step changed?

With all of these new diagnosis with the addition of more therapy and increased special ed services, I've decided to reach back out to the Katie Beckett program. We received Medicaid services for disabilities for Jax's first 5 years of life. He became ineligible once his speech had improved and they told me to contact them again if any services increased or if further diagnoses came along. I called the county representative and we had a talk about it all. I didn't want to go through the application process if she felt there was an obvious disqualification. She said there wasn't, but it's definitely not a guarantee since Jax does have full mobility. A child qualifies if they have a medical need that requires trained nursing skill (trach, feeding tube, oxygen etc) and a severe developmental need. This insurance offsets the massive costs that families have with children in that category. Jax now receives six therapy sessions a week between school and private services and he's also taken out of class for two periods a day as well. So, I've been on the long application process with all the paperwork and reports from school and the doctors. I have an in-home visit this upcoming Tuesday and then it's in the state's hands if they approve us or not.

This is to help with the cost. Just therapy alone is $900/month for the two services, then there's the medications (don't even get us started on the cost of the hGH injections and his daily asthma inhaler), the specialist appts every 6 months (GI, Endocrinology, Asthma and now Rehab too), medical supplies and then of course the complete out of pocket cost no matter what the deductible is at is his formula he drinks by mouth and his medical diapers. WHEW, this is a million dollar baby!
Good thing he's cute ;) SO, if we can get the help, great. If not, then it is what it is and we'll deal.

The boys and our neighbors went go-karting out at a boy's night.

Playing Pac-Man with Claudia (my mom's foreign exchange student from Peru) at Dave and Busters

Couldn't resist the huge Rock 'em Sock 'em game.

Hibachi dinner with Uncle Clint and Nana/Papa.

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