Eli had a fairly quite morning. Bob and I got some grocery shopping done and a few errands. This afternoon Eli had therapy. It was PT, ST, and ASL. We had a long talk. Alot of discussion about his legs and walking abilities. Nobody is sure what the best course is. His in home leads will be changing. His ASL therapist will become the lead. Then his ST will come maybe twice a month to work on his IPAD for communication. Then he will have OT and PT in home. We have been going to 2 different therapy centers to get all of his therapies as well as working with in home. It has gotten to be to much. Eli struggles with that much and so do we. We have decided to stop 1 therapy center where he was getting all 3 therapies and switch to simply in home. He will still receive intensive PT and water therapy at 1 outpatient facility. His in home PT agrees that some of the physical issues are getting worse BUT she believes if we weren't doing the intense therapies and interventions that it would be considerably worse than it already is. That's rough to hear. She worked with him for a bit today in his hip helpers and in his AFO's and he really struggled with exhaustion. They wear him out so quickly. He did do a bit of work on the stairs and did well with that.
It has been a bit of a struggle to decided to lessen Eli's therapies. There is a slight guilt over not giving him every single thing out there. On the other hand he is exhausted and it puts an added strain on his body. We are trying to find the balance of giving Eli what he needs, but also allowing him to be a kid and have a large amount of down time. Eli is already sleeping so much, and already needing so much more energy. He sleeps 12 hrs a night and around 4 hrs a day. For a total of 16hrs a day. Mind you there are only 24 hrs in a day, meaning he is only awake for about 8hrs max. So it's hard to find time to fit in all of the other activities. We are hoping that we are making the best choices. We have chatted with so many of his docs and therapists and they all agree. It's not giving up, but it's allowing Eli a break. It's realizing that no matter how many therapy opportunities we provide he simply won't catch up. He won't reach all of the milestones that we have been pushing him so hard to reach. I'm sure to some that this sounds like giving up, but I promise you it's not. It's about loving our little man unconditionally and allowing him to be simply Eli. We are hoping this is the right choice, because we don't see many other options and we truly believe this is for the best.
Emily came home today with big news today! They had a school spirit assembly and she won an award. She made principal's honor roll. She was super excited and so are we!
Tomorrow we have Eli's ASL tutor who comes once a week to teach us ASL. We enjoy this time and learn a lot.
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