Very Quick Update
It is soo late, and today has been a long day preparing for tomorrow, so I am just writing a very quick update until I can properly upload Easter pictures and share what's on my mind.
Ty is awesome. We have been very busy, but most importantly, very happy at home. Easter was nothing short of magical. He is feeling better every day and showing some potential for physical recovery. Today, for example, he was able to hold his head up better than ever, and he accidentally pulled his hand up to his face. It was very exciting for him and he bragged about it quite a bit.
"I'm so happy to be home," he says often, which makes me so sad because tomorrow we will be checking him into the Blythesdale Rehabilitation facility. He will be okay, though. He always adjusts well (knock on wood).
We met with the hyperbaric oxygen specialists at Phelps Medical Center today (located just a few miles from Blythesdale) and it looks like they will accept Ty as a patient. I will share more details on how that works soon, I am just so happy that the ball is rolling on this. The doctor was very nice, and I could tell he was very caring. He said we should have zero expectations, of course, but that he has good reason to believe that the oxygen therapy will help to alleviate some of Ty's incessant head pain, and potentially help him regain some of the physical ability he lost as a result of the current radiation necrosis to the brainstem. I believe he is right :)
We need to coordinate a quick outpatient procedure before we can begin (he needs to get tubes in his ears so the pressure in the chamber doesn't cause discomfort) and once that's done we can probably begin early next week. I am anxious.
Other than that, we will know much more tomorrow. We need to meet with his caregivers and Blythesdale, allow for a full evaluation and such, before we will know how long of a stay to expect, and what his daily therapies will look like. Regardless, I am certain he will do very well - reluctant as he may be - and I can't help but have very high hopes. I'm just so relieved that everything seems to be going smoothly right now.
More tomorrow. Goodnight and God Bless.
Ty is awesome. We have been very busy, but most importantly, very happy at home. Easter was nothing short of magical. He is feeling better every day and showing some potential for physical recovery. Today, for example, he was able to hold his head up better than ever, and he accidentally pulled his hand up to his face. It was very exciting for him and he bragged about it quite a bit.
"I'm so happy to be home," he says often, which makes me so sad because tomorrow we will be checking him into the Blythesdale Rehabilitation facility. He will be okay, though. He always adjusts well (knock on wood).
We met with the hyperbaric oxygen specialists at Phelps Medical Center today (located just a few miles from Blythesdale) and it looks like they will accept Ty as a patient. I will share more details on how that works soon, I am just so happy that the ball is rolling on this. The doctor was very nice, and I could tell he was very caring. He said we should have zero expectations, of course, but that he has good reason to believe that the oxygen therapy will help to alleviate some of Ty's incessant head pain, and potentially help him regain some of the physical ability he lost as a result of the current radiation necrosis to the brainstem. I believe he is right :)
We need to coordinate a quick outpatient procedure before we can begin (he needs to get tubes in his ears so the pressure in the chamber doesn't cause discomfort) and once that's done we can probably begin early next week. I am anxious.
Other than that, we will know much more tomorrow. We need to meet with his caregivers and Blythesdale, allow for a full evaluation and such, before we will know how long of a stay to expect, and what his daily therapies will look like. Regardless, I am certain he will do very well - reluctant as he may be - and I can't help but have very high hopes. I'm just so relieved that everything seems to be going smoothly right now.
More tomorrow. Goodnight and God Bless.
I have been following Ty's story for over a year now and check on him every single day. His and your strength are amazing. I wanted to share a little hopeful story about my boy and the rehab facility. Scotty was four, he had suffered severe ADEM and was neurologically blind, comatose, could not move even his pinky. After being told "all we can do now is hope and pray" we have been referred to a neurological rehab facility with 7-9 therapies daily. Including Padovan, Petö, swimming, fine motorics, speech therapy, animal therapy, coordination, any many more.
ReplyDeleteAfter a few months, he walked out of there. He is doing amazing, we are absolutely over the moon. I am not saying this will be exactly what happens to Ty, but I am saying that doctors are very often extremely pessimistic when it comes to children's brains because you just don't KNOW what happens. In that facility, I am sure Ty will regain many abilities and get bedda.
Steffi
http://www.caringbridge.org/visit/scottymorton
I love you Ty, so much I can't even explain. I just know that you are going to do fantastic, Keep fighting, NEGU. My prayers and positive energy will never stop coming your way.
ReplyDeleteAll my love always,
Elaine
We continue to pray for little Ty and your family.
ReplyDeleteThere is one steady prayer in our house said often for God to stop child and animal abuse, make Ty bedda and find a cure for child cancer. I wish not to win a lottery and do not even pay, I only wish my prayers to become reality - that is my lottery.
ReplyDelete