There have been some positive changes for and with Lennon. For instance he walks more steady these days, but still has some balancing issues that only will go away over time as he gets stronger. He’s new found love is the lil trike they have that can be controlled by Lennon and the Physical Therapist, he always has a blast riding it around the unit.
He’s enjoying school, speech and occupational therapy as well as some therapeutic recreation. He has been able to go outside and enjoy some of the slightly warm day we had, walking but also again riding the trike.
Eating is still somewhat of a challenge, and there appear several factors that are related to this situation.
- He has been soo conditioned not to eat food such as anything with protein.
- He had the breathing tube several times, and then for a long period of time
- He is not used to the muscles in his throat also evident by his still quiet talk
- His taste buds could be off a bit, some of you remember the spicy foods he liked > Mustard
- Developed an aversion to food due to vomiting from sickness and withdrawals
There might be some more issues but this appear to be the main ones that make his eating problematic. So now he has to build a new relationship with food, one that is pleasant and allows him to enjoy it, but also be nutritional. By the time he will satisfy the docs, he will be ready to go home. So for now he gets to eat what he wants, but is fed via NG some KidsEssentials to give him the nutrition about every four hours. At some point this will change to three meals a day so that his body will get used to being hungry at the right kind of time.
In the mean time we are working out his medication schedule, currently he takes about 16, with the majority of them in the morning and then again in the evening. Some of them he takes three times a day. Some of them he will not have by the time he goes home. But its important to get on a routine that works for us at home, which has been quite challenging at times.
Ultimately his mood has been improved drastically. He appears more chipper and happier most days. He is still kind of shy around all the docs, nurses and therapists but since most of them are the same every day, he appears to warm up slowly. He has started to joke around a bit more, laugh and giggle at things he feels/thinks are funny. Its good to see him going back to the Lennon I know. It is interesting to note that his previous severe ADHD issues are currently not present. He is no longer figity and does not bounce all of the place. While I don’t think it is completely gone away, I do think that A LOT of his behavioral and cognitive issues were related to the flucuating levels of ammonia in his system at any given minute in a day. It’s good to know that the transplant did more than just save his life, it has given him an opportunity to live as much of a normal life as possible.
He is still facing some challenges for years to come but I am excited about his new life that appears to be right in front of him. Though as I write this, I still feel hesitant and reserved as rejection can still occur at any time if his levels of medication in his blood are off or not enough. I want to believe that the worst is over and that while he may still have some hurdles from time to time, none of them are going to be like anything that he has gone through in the past three months.
Thanks for reading