June 10, 2016

Where to begin. Last week we had an exciting adventure of going to Oregon for Aunt Jordyn's Graduation! We had so much fun being with family and getting out of Idaho. Cameron and I were able to go on a little date night to the coast which was really fun even though we got lost on our way there. Tyson saw lots of Grandparents and Great Grandparents and we got two different 4 generation pictures which is so great!

Tyson also became a cousin for the first time last week! Cameron's brother and his wife had their first little baby boy! We haven't been able to see him yet since we have been getting over a bad cold/cough since we arrived back in Idaho but I cant wait to see him and snuggle him! I am so excited to be an Aunt!

While we were in Oregon Tyson started a new medication called Topamax for his seizures. We were able to pick it up in Oregon and start giving it to him right away. Luckly we haven't seen any more cluster spasms but he has started doing these little 1 second long glances where his eyes drop to his right side and he goes out of it for a second. Around the same time he started the medication he developed a really bad cold/cough where he had a high fever and was very sleepy. On Sunday we stopped by an Urgent Care in the Boise area and he also had a really bad double ear infection. We have him on antibiotics now and he is healing quickly and back to his normal self. When we got home I also came down with the same cold/cough and it knocked me out for a few days! But we are both on the mend now.

Yesterday we went down to Primary's for some follow up visits. Tyson and I took off in the morning to go down to SLC and we had a good drive down. His first appointment was an EEG to scan his brain waves to check for seizures. The test went well and he had good amount of time where he was sleeping and then after he woke up from sleep where we caught some of the seizure like behavior that I have been seeing at home.

After that we went over to our Comprehensive Care visit where we unfortunately didn't get to see our normal doctor because he had something come up. But Tyson was able to get botox in his hamstrings and we also got a prescription for some knee braces to help stabilize him. Tyson is also starting to show some hip dysplasia. Which is caused because he isn't putting very much weight in his legs like a normal child would be at his age. Right now its very slight but we are doing lots of preventative measures to hopefully not let it get worse. The preventative stuff we are doing is having him in the stander, botox, his braces, and helping him stand against the couch.

We then went and had some lunch at Primary's cafeteria and then had his Neurology Appointment. We found out that he is not having the Infantile Spasms (the seizures he was having last winter that are very damaging) which is great. The cluster of spasms we saw about 2 weeks ago could have been a break through of them but they didn't show up yesterday so either they stopped or the new medication is controlling them. They also couldn't tell if the short eye glances are seizures or just abnormal brain activity. They saw them on the EEG because I marked them but its unclear what they are right now. So the plan of action is to pull him off of the Phenobarbitol medication that he has been on for about a year now which will take about 9 weeks. So I am very excited about that because I don't really like that medication. It can cause him to be very slow and lethargic so It will be cool to see what he does off of it. And then we will keep watching him to see if there are changes but for now his doctors want to keep his new medication.

His Neurologist that we have been working with since Tyson was in the PICU at Primary's will be graduating from her Fellowship at the end of this month so this was the last appointment we had with her. We are very sad to loose her and have loved working with her. She has been very attentive and accessible to us which has made a world of difference.

After Tyson's appointment we went and did a blood draw to check Tyson's vitamin D levels and afterwards they gave him the cutest little super hero stuffed animal. They always give kids little treats after they have blood draws which I think is so sweet and just adds an extra measure of care. We then took off and headed back to Idaho and made it home around 10 PM. It was a super long day but I am happy that we had mostly good news!

Our Superhero!

Tyson with Grammy Coon and Great Grampa Coon 

I got to try Mo's for the first time!

 

My Happy Place!! 

 4 Generations and Tyson with Aunty Jordyn! 

Lots of Family Love!

4 Generations!

Cameron and Jordyn!!

Sick little baby and his puppy on our way home from Oregon  

This is how we give Charlie water on our road trip!

A few days after getting on his antibiotic, he was feeling much much better. 

Tyson getting his EEG put on. If you haven't ever seen it before there are about 15 different probes they put on with some tacky gel like substance and then cover his head with a bandage so he doesn't pull it off and they stay in place. By the end of the hour he was pulling on it pretty good though.

These are the marks from Tyson's botox shots, two on each leg. The doctor asked if I would pass out from seeing the needle, and I told her that if I can poke my kid almost every day for a month I can handle someone else doing it with a smaller needle lol. 

                            

 As I'm sitting here in the cafeteria at Primary's I remembered how exactly one year ago today I was life fighting my baby from Idaho. He was intibated and almost non responsive. As I walked through this very colorful maze into the PICU with the life flight team I desperately wanted my real life back. As the next few weeks passed by I often sat alone in this cafeteria just wanting my baby to be with me. And today he was! It was amazing how far he has come in this last year! I often get frustrated about the little set backs he has now but it's nothing compared to where he was, so I can't limit or worry about the future holds because it's bright and full of hope! We have found our new normal!