Well we have been home since August 21st. The girls started school at TK the very same day and it feels like we have been going with our foot to the floor ever since. Like ever other family in the fall, a little normalcy and a routine.
Nate schedule is a busy one. He has spent Monday, Tuesday and Wednesday afternoons participating in Mary Free Beds day rehab program. He does:
- OCcupational therapy (arm stuff, brushing teeth, hand cycle with stimulation and baking)
- physical therapy (whole body stuff, sitting, propping, attempt rolling, standing in a standing chair and practicing hitting a ball)
- Rec therapy (applying all learned in games)
- psychology (brain stuff, turns out he is stubborn)
Thursday he rides horses at Legacy Stables in Caledonia at Karin’s Horse Connection. He requires someone to sit behind him and side walkers at this point. It is amazing how much this has helped him learn how to balance his body.
Nates ends his week with swimming at Mary Free Bed. He has a floatation ring around his neck and then he goes to town. After his first class he exhaled and said, ‘wow, that felt good!’
Starting in November we added school to his mornings three half days a week. TK’s special education program has amazed me every step of the way. He is in the best of hands. God continues to bring amazing people into our lives that are caring us through.
Are you a little tired after reading all that? We are just your average busy active family getting by each day. It feels so good!!!
I will try to add pictures with captions of some of the other amazing highlights we have been blessed with this fall.
Now to answer the question, how is Nate doing? It is so tricky to answer. He is alive, so he’s great! He breaths on his own, no trach so he is amazing. He laughs and smiles, most of the time, he shares our skittles and loves to play tricks on his sisters, so he is a fabulous five year old.
He is however a five year old who recognizes he can’t play in the play structure at McDonalds, play soccer with kids his age, he recognizes that his ‘stupid’ legs just don’t listen. His mom tells him all the things he can do and how thankful she is that they can learn new things together but when your five that just sucks.
We had an MRI at Motts this week and followed up with the nuerosurgeon. We knew there was fluid around the area of injury that was causing swelling. We were shocked, terrified to see the newest images show the swelling has grown a great deal. The fluid is kind of spinning with no place to go and is damaging or killing off the nerve tissues around and below c-5, c-6. Medically speaking it has damaged those nerves that would help with gaining new movements below his shoulder arm areas. (Well I guess that’s not so medically sounding but how this lower elementary teacher’s brain understands it.)
Can’t you just drain it? More vertebrae would have to be removed and it is a very painful procedure and recovery that would put our buddy back in the hospital for weeks. Not moving in a hospital brings about the chances of lung issues again. Would this change his chance for movement? The surgeon just isn’t convinced it would. The spinal cord above has remained healthy, and he is getting stronger. Can sit with back and side supports, eat with tools and play games. So his team is in high alert that those movements remain and continue to strengthen. We will have another follow up MRI in January.
Please pray that this spinal fluid finds a new place to go, or just starts absorbing magically, that nates movements get stronger and no more damage is done. We are scared this flood of fluid could steal what he does have.
So many thank you’s are due. Your prayers and positive vibes have brought our family this far. We have had meals, lawns mowed, tractor parades, gifts upon gifts for the girls and all of us. Money donations for our dog, gift cards for gas, soup suppers at church, kids selling their own toys at garage sales and donating all the money to Nates care, and anything else you could think of when living on the road.
I’ve tried to send thank yous but cant put a dent in it. I feel guilty because I want each of you to know that your kindness and love was appreciated and noticed. When the time comes we will pay it forward the best we can.
We pray for miracles and recognize each of you and so many others have been Gods answer to those request.
God... we are so thankful we have such a strong, loving Forgiving Lord. God’s time is different than our time. In all things give Thanks.
Humbly, whole heartedly...