November 16, 2015 ~ Tyson’s Disability Story

Tyson has been doing well over all. His seizures have gotten a little worse but are not as worse as they were before the steroids. He is having 2 or 3 very small seizures a day plus a big seizure around 5 PM or 6 PM every evening. Those evening seizures usually last 5 to 10 minutes with 30 or so spasms. He cries a lot and is very fussy and upset for an hour or two afterwards. Today I talked with his Neurologist and we increased his steroids from 15 ml per day to 20 ml per day. This is the maximum that he can have but hopefully it will help the seizures go away all together. Next Monday and Tuesday we have a total of 6 appointments were Nonna (Grandma Donna) will be flying in to help me with. Tyson will be having another EEG, Neurologist Appointment, Craineal Sacral, a short MRI, Neurosurgery and a meeting our Comprehensive Care/Rehab Doctor and Nutritionist. It will be a very busy few days!

This past week Tyson had a swallow study and he can now swallow thin liquids like water! This is very exciting! In the few days that we have been working with him he can drink 2 oz to 6 oz of slightly thickened formula over about an hour. We give him what he doesn't drink through his g tube. We will be working with our speech therapist and nutritionist to come up with a plan as he turns a year old and how to ween him off of the tube completely! This is very exciting because most doctors and therapist thought this step was still a far way off!

Despite having so many seizures Tyson still continues to progress developmentally. Like I mentioned he is eating more on his own and keeping his binki in his mouth by himself. He is much more talkative and active. He is pulling his head up a lot more while on his stomach and he is gaining more core muscles and holding his head and trunk up a lot more on his own.

The last few nights Tyson has been sleeping a lot better, I started waking up every few hours to rotate him in his crib and that seems to help him sleep through the night like he does with his nurse. It has been so nice not to be awake for 4 to 6 hours with him at night!

Over the last week I have had several periods of hope and of despair in regards to Tyson's seizures. It is frustrating to see him in such agony and not be able to do anything to fix it. I have tried to be in tune with the Spirit to know how to help him. The two things I felt strongly about doing are to give Tyson a priesthood blessing and to start working with a friend of ours who does body code healing and muscle testing.

This morning Cameron gave Tyson a priesthood blessing and it was very simple but beautiful. He was blessed with peace and comfort through his trials from his parents and his Heavenly Father and he was also blessed with an understanding of why he has to go through all of this. It reminded me of his true nature and that even though I can't see it his spirit and mind can understand far more then I can comprehend. I know it wasn't an instant healing but it defiantly helped me know that someone besides me is trying to comfort and help my son.

I have also spoken with our friend who does the body code energy healing and muscle testing and hopefully we will be getting together soon and working with Tyson. I don't understand it completely but I truly feel guided to it! I know that I have seen amazing work with other energy methods that have been done with Tyson and I believe this can help as well. The other cool thing with it is that from what I understand the muscle testing will help us ask Tyson's body questions and receive answers. I think that this will be an awesome way to help him and understand his experience a little bit better.

And last of all this week is Tyson's BIRTHDAY WEEK!! We are so excited to celebrate him this week and eat a little cake!!