Saturday, October 15, 2016

July 2016

This month came and went so quickly but we had so many fun and amazing things happen! During the first week Tyson had an Audiology and Neurosurgery follow up which showed that he had no hearing loss and that his brain healing and size is going really well. We also did a 24-hour EEG at Primary's which showed us that the eye glances seizures that he has been having are in fact not seizures at all which is good but I wish they would have figured that out like I asked before we medicated him to treat them. But we did learn that he was having some tonic seizures which up to that point we had never seen before. Basically the only sign of them is that he periodically stiffens up. Tyson hatred being stuck in a hospital bed with the EEG machine on his head for a whole day. He was extremely irritable the entire time. It was an amazing contrast to last summer when he was in the hospital because then he was so out of it that he didn't voice any objections. We are glad he is able to fight back not and let us know how he feels. 

During the rest of the month we did a lot of periodic packing in between all of our appointments and the other fun things we had planned. A little later in the month we were able to go back to the EIRMC PICU to see two of our favorite nurses from when Tyson was in the hospital there. We tried going a few times before that but this was the first time we actually made it there. It was so fun to see them and to see the love they had for Tyson. They were both very shocked at how well he was doing, and both said they never expected him to progress this much with how bad of an injury he had last summer. It was also interesting being in the PICU again because it brought back some traumatic memories but because of some trauma recovery and therapy I have been doing over the last year it didn't send me into a panic or emotional breakdown which is what I was kind of expecting to happen. We are so grateful to this day for those people who helped to safe Tyson at that hospital, we will never be able to thank them enough. 

Towards the middle of July, I decided to run away for a day and go and float a river in the island park area with my wards relief society. It was very memorable to say the least. The float took about 5 or 6 hours when it was originally only supposed to be 2 or 3. And the weather was very cold and windy and we were all sitting in interludes without bathing suits on. Everyone else who was on the river were in jackets and we're out of the water in their boats. We also had a lot of trouble getting to the river due to some traffic along the way. It was extremely memorable and I'm so glad I went. We had such a wonderful Ward family that we left in Idaho. We will miss them so much but we are so grateful they were in our lives over the last two years. 

Tyson's cousin also had his baby blessing while we were still there which was so fun to be a part of. Almost all of Cameron's family was there as well as my sister in laws family. We also had a really fun luncheon at the park afterwards and it was so nice to hang out with everyone and have fun. It has been harder then I realized moving away from all our siblings that we had in Rexburg. We did a lot of family dinners and had them over a lot and we defiantly miss that. 

The week of Cameron's Graduation we had 6 extra family members and an extra dog staying with us in our apartment and in the apartment below us. We had lots of extra help for moving too but it did get a big crazy from time to time. Cameron's Paramedic Pinning Ceremony was really special to be apart. It was also sad because this was the last paramedic class from BYUI since they are closing down the program but all of the students were very excited to graduate and move onto their internship and jobs. I was able to go up and pin Cameron's onto his shirt which was pretty special. It was an exciting accomplishment especially considering all we have been through in the last year. That evening we had a really fun barbecue at our house as well to celebrate together as a family. The next day was the actual Commencement and Graduation Ceremony. Tyson was a bit restless and his Grandma walked him around most of the time. Earlier that day we also picked up his new wheelchair so we were able to test it out. It was so nice that he was able to sit up and enjoy seeing everything around him instead of having to lay down all the time. 

The rest of that week we finished packing and cleaning and by Saturday morning we were moved out thanks to our family members and friends from our ward. We couldn't have done it without so much help! We put our stuff into a storage unit in Saint Anthony while we were on our month long vacation. On our way out of town we had to drop a few last items off at the storage unit before we left for Utah but we got stuck in a Pioneer Day parade that was going on and somehow boxed ourselves in town so we had to wait for the parade to finish in order to get to our storage unit which was frustrating at the time but now it's a funny story. Before we left we were also able to have lunch with Cameron's dad and Sister in Rexburg at the Hickory. It was sad and exciting to leave the town we met in, got engaged in and where we had Tyson. But we are also excited to move on to our next chapter. 




  


Happy 4th


Tyson at his Hearing Appointment 


At the SLC Zoo before his EEG 



Getting his EEG put on again



He was constantly trying to pull the cords off of his head


Our favorite Nurses at the EIRMC PICU


Tyson and Daddy in front of the hospital room he stayed in while here. 


He fell asleep eating 


Aunt Jordyn and Tyson


Cameron's Graduating Class 



Daddy's Pinning






Happy Graduation!


Classic Grandma Kissing Picture


Pulling Aunt Caity's Hair


The walk


Tyson's first dentist appointment


Grandma and Tyson were minion twins


Everyone was super tired from all the packing and cleaning






June 2016

We have had some big changes in our family over the last few months! Just to name a few Cameron Graduated from Collage as a Paramedic, Tyson came off his Phenobarbital seizure medication and has made huge strides developmentally, we were able to travel through 10 Different States to see many of our family members and all of Tyson's living Great Grandparents, and we moved to Oklahoma where Cameron started his internship. I have separated the updates into different months, happy reading!




During the first part of June we attended Tyson's Aunt Jordyn's High School Graduation in Oregon where we were able to see several family members. Cameron was also able to attend the funeral for the son of one of his best friends from high school. Tyson and I unfortunately couldn't go because Tyson became pretty sick while we were there and we didn't know what had. Tyson also started some new seizure medication in Oregon after I spoke with his Neurologist on the phone because he was having some new eye movements that looked like seizures. When we got back to Idaho we took Tyson to an urgent care and figured out he had two really bad ear infections. After we gave him some antibiotics he was feeling much better. The next week we were able to take Tyson down to Primary's for a 1 hour EEG which didn't show us much but we increased his new medication over the next few weeks. 

Tyson's first baby cousin was born in the first part of June which we were so excited about! It is so fun to get to snuggle and we became and Aunt and Uncle for the first time! I am excited for them to grow up together!

As Rexburg finally started to feel like summer we were able to spend a lot more time outside.We enjoyed going to the park, attending our Ward's camp out dinner (with our way to over excited puppy) and Cameron did a few 24 hour shifts at the Rexburg Fire Department. We started doing a little bit of packing towards the end of the month but the move still didn't seem real. Cameron and I were able to go camping up by Island Park one evening while my sister watched Tyson. I was pretty nervous to leave him alone over night especially since we didn't get cell phone reception where we were. But it all worked out great and it was really nice to spend some alone time in nature.




On our way to Oregon



Great Grandma and Grandpa Coon 


Tyson with GG, Grandma Judy and Allison


4 Generations


Brothers and their babies


Cam with Aunt Jordyn



Tyson getting his EEG


He is my superhero! 


Tyson and his Cousin


Tyson doing Hipo Therapy





On our summer campout



Rexburg Air Show


A boy and his doggie


Friday, June 10, 2016

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!