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!

Monday, December 19, 2016

Holiday Break Horizon

We are in full swing of our holiday season - and a full swing countdown each morning until Christmas as well. The boys are still at such a fun age for the holidays. They're filled with so much magic and understand the true meaning in addition to Santa :)

We're gearing up for a nice little holiday break together and hope to get a lot of family time in before the 2017 begins and we start our busy new year. Jay and I are thinking up some fun days and in addition to our typical tour on Christmas Eve and Christmas day, we also have a New Years weekend out of town with the boys at a lodge for a wedding - they are going to love it all!

Enjoy your end-of-year festivities. We send our love and hope for the best health and happiness!

Brady is always my cookie helper!

Jay and I having a little fun in the capital a couple weekends ago

Birthday party shenanigans for a classmate

Augustus the tax collector and a narrating shepherd in the Nativity Story at church


The Nativity story gang
Cool gifts from Jax's feeding therapist. It's Christmas all month long!