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.

Sunday, January 8, 2017

Rehab Clinic

The rehab appointment proved to be extremely helpful. Jason came with, which was really nice to have the extra ears as well as the extra help in providing information in the physical sports department. Having Jay there meant I didn't have to come home and 'give the news' to him. Instead, we were able to digest it all day on our own and then later in the night connect back about it.

The doc listened to a lot of history about Jax, reviewed his records and his latest appointment with the neurologist, made copies of the neuropsych results and then gave him a physical exam.  Jason wanted her to focus on Jax's step, especially when running. She noted his flat foot step (although he has perfectly fine arches) and his pronation inward. We told her that he wore ankle braces (AFO orthotic braces) from the age of 2-6, for a wide walking gate and outward pronation, in which we removed once the school district stopped his physical therapy. I wasn't sure if we'd be scolded for that or not, but thankfully she said that was completely appropriate.

Her assessment of Jax resulted in her official diagnoses of Cerebral Palsy Hemiplegia. The rehab clinic is the department that gives that final call - although we knew from the neurology dx's that this would be the path. Jax is strong, even given his small stature. The doc was actually impressed. He is high functioning, meaning he has great mobility, most likely from the years of therapy since he was treated since birth. Also, the private swimming for the past year has been extremely helpful for him. This doc's goal is to just help Jax use his body at a more optimal level to get him as close to 'typical' as we can. So, while he can walk, run and jump, he doesn't quite do it well - which may be part of his endurance issues. He puts a lot of energy into movements we take for granted. And God knows our daily struggle to get those oral motor muscles in shape.

The doc had us measure his feet for some orthotic shoe inserts that should help him straighten out his step and provide sensory input to his muscles as well. She has also referred him back into physical therapy. She said to continue our private feeding therapy and our GI/Dietician course to continue his nutrition. As well as following back in the rehab clinic every three months. She was pretty impressed by his growth since starting the growth hormone injections and feels it may also be helping his muscle mass.

She said his hand placement is a very common symptom of his type of CP and he will probably experience difficulty in learning. Which, lead us to the discussion about his special ed increasing along with Dysgraphia and ADHD. Interestingly she gave him an oral exam to recite all the months in the year and then to do it backwards! He pretty much did it perfectly :) She said he's a bright little light who will just need different ways to learn in some subjects. We got this! (I think)

Overall, it was really nice to get suggestions that may help! The only thing that took me aback was the suggestion of getting a wheelchair for when we vacation or have days of long walking. Jay and I kind of looked at each other with a little shock and the doc said we can think about that. Well, we didn't think long about it and decided last night that we're going to see how Jax does with the new shoe inserts, the addition of physical therapy and the continued private swim lessons and then see how he does on a vacation to Washington D.C. this summer. If Jax needs to be carried a lot at that point, we'll reassess for the future. Jason also gave a cute idea of maybe a simple Razor scooter could be helpful.. maybe? (I don't know if he could balance a scooter, lol) We'd prefer to not go the medical devise route if possible. Not because we're ashamed or naive, but we're trying to provide normalcy since he is high functioning. I even put his medical pole away since he was able to walk (we use a medical backpack to hang next to his bed instead).

We officially have some answers and are on the path to rehabilitation with it all. We are all doing well and have been taking it day-by-day, which is all anyone can do. I know this is a time in our lives we'll refer back to many times throughout Jax's life since this is a lifelong thing he'll carry and may show up in different ways through the years. But overall, we are so damn blessed. I know there were days, months and years that life was completely overwhelming, scary, exhausting and frustrating, but it certainly helps us see how much the effort pays off. Oh, this kid... if you've never met him and his brother, I hope some day you do. Spazy, happy, kind and full of light.


Loving a Christmas gift from family. We need to make sure they sit down otherwise they run into things!

First meeting of the basketball season

Shocking. Jax came home with another scrap on his face.

Some Packer game fun with the Roell family. They brought out their homemade Harry Potter WANDS!




Wednesday, January 4, 2017

Back to reality

Whew! We had quite the holiday tour. We had a nice break and everyone is back in the swing of reality now.

The boys started a really strong cough the day before we were leaving for our NYE weekend up in the northwoods to attend the wedding of our friend Gina - she babysits when we go on trips. I brought Jax's nebulizer and all the things needed in case his asthma went downhill. Oddly, the cough was pretty much gone by NYE morning - so ODD. We did neb treatment every 4 hours, and somehow he just bounced back no problem. LOVE IT!

It wouldn't be Jax without possible stitches needed on his face tho. He bumped his face on Christmas day when we were up in Manitowoc at the Lettenbergers. He sliced his eyebrow open and we had Nana and Aunt Sue trying to seal it closed with makeshift butterfly bandages. We did NOT want to sit in an ER for stitches that day, but thankfully the handy nurse work helped a lot. He looked like a hot mess for two days, but alas, that's Jax!

Tomorrow, Jax has his new patient exam with the rehab department. I'm not totally sure what to expect from this appointment, so I'm not totally sure what to think of it. I have my hopes up a little bit that they'll have some amazing treatment or plan to fix some of the issues. I know I shouldn't have those expectations tho... we shall see. I'll update by the end of the week!


A stop by the Garber girls!

Ice fishing outside the lodge


Christmas Eve day in Green Bay

Pretty wedding ceremony!

Uncle Jeff from Tucson!



NYE/Wedding celebration!

Christmas day in Manitowoc with Grandpa Lettenberger

Christmas morning at home

Christmas night with the Hoffmans and Father Dick

We caught him!


Christmas Eve with cousin Amanda

Leaving out cookies for the big guy

They saw the REAL Santa and were peeking at him

Big boy bikes from Santa!

Christmas day with some of the Lettenbergers

Christmas Day

Christmas Eve

Treating a cough at the lodge

Hanging at Nordstroms while daddy gets fitted for a suit

This kid and his accidents...

Lunch with Marley over holiday break

Brady loves her cats

The boys enjoying gifts from the grandparents. New games and gamer chairs...

This cracks me up. When Jax hits a wall.

Jax placing 'Baby Jesus' in the crib as we tell the Christmas story with Father Dick

Holiday break celebration with the Carvers and Bonins!