2/12 8:45 pm

BIG NEWS!  Ethan is down to TWO pumps. It looks like more but a couple of pumps are just for injections.

The look on Ethan’s face is because he was trying not to fall asleep. His eyelids were so incredibly heavy today. But look at that dandy pole. A single and simple pole. A pole with 2 pumps. Today was the first day he has worn a shirt that was his, in 12 weeks. He also wore his shoes for the first time in 12 weeks today.

He was tired because he was up walking again today. His legs, feet and back muscles were sore. But he kicked some ass and pushed through to walk down the hall. He sat in the beautiful, sunny and off limits room to rest.  He then walked back down the hall.

Ethan then sat in the chair for a few hours dozing off. Hence his face in the first picture.

We are trying to get Ethan to mechanically eat more instead of relying on feeds for nutrition. We also realized that he can swallow pills. This will allow for him to start taking his medications in pill or capsule  form and not with a large amount of fluid as he currently is taking.

Once we can get him switched over to pills/capsules...he will be able to be switched over to HD dialysis. The every couple days for a few hours dialysis. That equals more freedom to exercise.

Everyone keeps telling Ethan he is a miracle. They see him now and they saw him then. Everyone says how much improvement they see week to week.  Finally!

Ethan got a visit from child life which helps keep kids from getting bored. He got to pick out something to build.

So this evening after dinner, Ethan started building a car and using his fine motor skills.

We consulted today with the speech team. I was asking about Ethan’s speech. It is dead on with intelligence and humor but his speed is slower. I asked if it could be due to his stroke or the medications he is still on and being weaned off of. They basically weren’t sure and time will tell. The neurology team is going to be contacted to come and assess. 

They made some changes yesterday with the frequency of which he is getting certain medications. His tremors have significantly reduced and he likes that.

Since Ethan received his beads of courage, we have been diligent on tracking what he has been through this week.

 

Each bead represents something he has gone through this week since Monday. Some sort of pain, procedure, change, or accomplishment. He has had a busy week.

I received a yoga matt today and was able to do a little yoga which my body LOVES!

My bright spot today is all of the great staff here. They go out of their way to make our day better. They are all thoughtful and genuinely excited to see Ethan’s progress. They make my day better from the doctors, to the nurses, to the nursing assistants, all the people that clean and take out the trash several times a day. They all make our day a little easier.