2017 ~ Tyson’s Disability Story

Today marks two years since Tyson was admitted to the hospital for Meningitis. We have been on quite the journey and as I came to write this post I was thinking about the name of the blog. It was titled "Tyson's Journey with Bacterial Meningitis." I don't feel like this accurately describes where we are now so I have changed it to "Tyson's Ability Journey." I have learned that I love celebrating his abilities and I want to focus less on his disabilities. I want him to know that we brag to others about what he can do and not focus on what he can't. He has worked so incredibly hard to be where he is now. He was definitely born with lots of stubbornness, personality and determination that has never diminished. This morning he woke up giggling to himself and was full of smiles just happy to be alive for another day. Like some how he knew that this was a memorable day and that he has come so far.

For a long time I struggled looking at pictures from before Tyson got sick and I also struggled reading the blog posts I wrote from when Tyson was in the hospital. These things are difficult for me at times but I no longer wish I had whatever the meningitis took from me. I just enjoy the fun times we had and remember the difficult times with patience. I truly don't know how I wrote such long blog posts during that time. I truly believe it was my coping mechanism. I am grateful for the strength God gave me to write them at the time because I would not remember all of the details or the ups and downs that happened every day during that time.

To give you a little update on how Tyson is doing he is meeting and surpassing all of his goals that his therapists set for him. Every 6 weeks they reevaluate him to make sure he is progressing and meeting the milestones they set. Every time he has accomplished what they have asked him to do. He is pretty much sitting up on his own now and is learning how to feed himself with a spoon. He is learning to walk and stand. He is learning how to identify every day objects and is very accurate when selecting them from a field of two. His speech therapist who helps him with his communication just finished completing a huge application for a communication devise. Tyson's insurance is reviewing the application now and we are hoping he will be approved soon! This application typically takes 6 months to put together and his amazing and dedicated therapist finished in in about 5 weeks. We know there is a lot more he is thinking then he can communicate.

Tyson is also learning how to drink from a cup and is going to start working on chewing his own food. Up to this point he has been on puree foods with some small soft chunks. His therapists are always pushing him beyond what I think is possible.

Tyson's health is amazing as well. He hardly gets sick which we are extremely thankful for. He is able to handle his nose drippings when he does get sick which is amazing because even though you don't think about it, swallowing and snorting is a very complex swallowing process. Especially when you lost all of that ability at one point. His seizures are something that have been changing every few months but his Neurologist has been great about keeping up on changing his plan and medications to what fits him the best. There is a new medication that sounds very promising that is in clinical trials right now. We are looking forward to starting it in the next 6 months to 2 years when it is FDA approved. There have been great results with children who have the same type of epilepsy as Tyson.

Over Memorial Day weekend we hung out at home as a family and enjoyed spending time together cooking, cleaning and going to the splash pad. Tyson was not a huge fan of the splash pad but we love giving him new experiences and letting him be around kids his age. I truly think that more individuals with unique abilities, like Tyson, need to be in the every day world so that there can be more exposure. I used to get really bothered by all of the looks and stares but now I embrace them and when a curious child or person comes up to Tyson I try to engage them as much as possible so that they can know it is ok that Tyson is a little different. His happiness is so infectious, people just love being around him.

One of Tyson's favorite weekly activities is going to nursery at church. He loves his nursery leaders and planing with all of his little friends. They all know his name and they welcome him every week and say goodbye when class is over. He gets super excited when we tell him that it is time for nursery and singing time is probably his favorite even though he sometimes falls asleep. We have been blessed so much by the members in our ward being so loving and open with our family and Tyson. Tyson loves to skype/facetime with his grandmas and grandpas. Every time he hears the music of the call he gets extremely excited and then tries to eat the phone, we like to think he is giving them kisses. Tyson will also be starting preschool this coming November. We are excited and a little nervous about it but I think he will love it. He is SOOO social and loves to engage with new people.

This past week we received a beautiful quilt for Tyson from a friend of Tyson's Grandma Nonna. It is an amazing quilt made by a sweet lady who does quilting conventions all over the world. She heard about Tyson's story when he was in the hospital and wanted to make something special just for him. It has a bit "T" on it and reminds me of the superhero that he truly is. There are so many people who love our little boy, even people we don't know personally. I am so glad that his little spirit has touched so many lives.

As far as a little family update I recently started a new job with a company that is doing a big urban development project in Oklahoma City. I am the Administrative Assistant and so far I am loving my work environment and the people I am working with. I was really struggling in my last job as far as the company and my boss so this was a huge blessing. Cameron is in his second semester of school now for his second degree of Occupational Health and Safety. He will probably finish in the beginning of 2017. We also recently purchased a second car. It is a 2013 Prius and I am in love with the MPG!! I only have to fill up my gas tank every two weeks and I commute 30 minutes each way to work!! It is truly a blessing and with me starting my new job we finally felt comfortable in purchasing the car. Cameron is also an amazing Daddy and loves being home with his little buddy every day.

Overall we are doing great in Oklahoma and I think we survived our first tornado season without seeing any tornadoes! We have seen some amazing thunder / lighting storms and super strong winds. I thought Idaho had strong winds until I moved here! I am grateful for the safety we have been blessed with as well. We are truly a very blessed little family!

Here are some fun videos and pictures from the last few months:

My Happy Boy

This is how Tyson enjoys I-Hop

I think Charlie is a great therapy dog for all of us!

We found a huge spider coming out of our attic! It took over 20 shots with the salt gun and a commando knife to finally kill it. He is my superman spider killer!

Face timing with Nonna

Tyson and his puppy

Daddy and Tyson coloring

Learning to drink water!!

I love my little boy!!

"Dad this is my hungry face!!"

Learning to bowl

He opened the cabinet and took all the games out himself. Most people are sad when their kids figure out how to do this, I was so excited!!

Tyson and his best friend Kellan

Valentines Day!

This is the typical nap shot

Charlie is so protective of Tyson, he will come and lay his blanket on Tyson to keep him warm and to tuck him in.

New Glasses!

This is Tyson's favorite toy and he loves playing with it just like this. The middle part is supposed to bounce balls around but Tyson just likes feeling it bounce in the middle.

He loves the lights!!

One day I came home and Tyson was gabbing constantly to me the whole night. Here is a little bit of our conversation.

This is when Tyson first started his language therapy. He has since improved a great deal but I don't have a more recent video.

Tyson loves to swing!

Tyson was trying to learn how to give mom a back massage.

This boy loves his daddy!

This is Tyson learning how to drink from a cup. The water is thickened but he loves it.

Tyson learning to eat with a spoon. This was pretty early on as well. He is getting a lot better at this!

We have had many changes to our family over the four months. It is crazy to think that we have been in Oklahoma for that long already. We moved here in the beginning of September for Cameron to finish his Paramedic internship with a company in Oklahoma City. We also took on the task of switching ALL of Tyson’s programs, doctors and therapists to Oklahoma. We were very sad to leave the people who had helped us so much during the first year of his recovery from meningitis but we were also excited for our new adventure.

The first few months were very hectic with Tyson not having insurance for about a month and also trying to adjust to Cameron working full time. We finally were able to get Tyson’s Oklahoma Medicaid approved around the end of September and the day after it was approved I took him into the Children’s Hospital ER to be evaluated for the new seizures he had developed over the summer. These new seizures were occurring about 5 to 15 times a day where he would have a spastic movement with his arms and he would be out of it for a second or two and then come back to whatever he was doing previously. At the time this was the best option to get him to be seen by a neurologist as fast as possible. I did a lot of research before we moved to find Tyson the best Neurologist in the area and was told that Cook Children’s in Fort Worth, TX is where we would want to take him. I set up an appointment with them in May or June of 2016 but the first available appointment was not until the end of November and I didn’t want to wait that long for him to be seen. We were able to see a Neurologist at the hospital but they referred us to a local Neurologist in the Oklahoma City area where we could be seen within the next few weeks.

We do believe that we were guided here by the opportunities we have experienced, the amazing people we have met and great support we have from Tyson’s doctors and therapists even though it is difficult being farther away from our families. We will see where this year takes us but we are happy and enjoying life even though we have different bumps and turns along the way. Thank you for all of the love and support we receive from our friends and loved ones!

I realized during this ER visit that basically unless you are very serious patient or they are concerned about your acute issues you will wait ALL day to be seen. Thankfully this wasn’t that serious but we were able to start with a new Neurologist and develop his new plan to control his seizures. Since then we have added, adjusted or removed about 3 or 4 new medications. As the next few months came we would see some improvement with his seizures but they never went away completely. Thankfully he hasn’t developed worse seizures that require emergency medication or hospital trips. He will always be at risk for having large Grand Mal seizures or similar type seizures that are potentially life threatening.

By mid and late November we still had our Appointment with Cook Children’s hospital and decided to go to that appointment. It took about a month of working with his insurance and pediatrician to get this out of state appointment approved and we were so thankful it was. Out of pocket that appointment alone would have been very expensive let alone the treatment that followed. We met with his new Neurologist and she was very optimistic and pragmatic about Tyson, his progress so far and where she would like to see him go. What really impressed me is that she has read up on his history before we arrived which saved us about an hour of going over his story. Before this appointment I was very interested in starting the Ketogenic Diet which is a very high fat diet used for about a hundred years to control or manage seizures. Tyson’s previous Neurologists were open to the idea but at the time trying different medications made more sense. The first treatment idea that the Neurologist at Cook’s had was the Keto Diet which I was very excited about. They have had a keto program for several years there and have very experienced nutritionists as well. They were able to set us up to start the Keto diet about 2 weeks after that appointment. Generally getting a child into a program like this can take 2 to 6 months at least to get into because it requires a hospital stay and they only have one or two children start this diet at a time per hospital.

A few weeks after our first appointment we came back down to Texas to admit him to the hospital and to start the Ketogenic Diet. It was quite the whirlwind. Since it has almost been a year and a half since Tyson has been admitted to the hospital we forgot that you don’t get any sleep in a hospital and its super heartbreaking seeing your baby poked and prodded all the time. On the first day they basically gave Tyson a little bit of the keto formula and water so he was starving all day which was hard to watch. He also had an EEG on for the first 24 hours so we could get a clear picture of what was going on with his brain and his seizure activity. On the second day we were able to make some keto meals for Tyson that he could eat orally which made him much happier but he had a lot of retching and his stomach was pretty upset adjusting to the new diet. Gas and nausea medicine seemed to be a good short term fix. Gradually Tyson started adjusting to the diet and his blood sugar was very stable which was also a good sign. Tyson also had a swallow test and a sedated MRI while we were inpatient. These are procedures that generally take months to get done while being on large waiting lists so it was very convenient to be able to get them done in the hospital.

Tyson’s new Neurologist was very interested in getting the new MRI done and the 24 hour EEG because even though he has had those things done in the past she wanted to get her own full picture of what was going on with him which I appreciated very much! It was very interesting to see the difference between this hospital stay and the one we had when he had the meningitis because I think Cameron and I have both become very strong Tyson advocates and Tyson experts. We were helping the nurses out with his medications and g tube button and we were also very bossy when they were not quick to get his items he needed to decrease his pain. Since Cameron also has a lot more medical experience people were always surprised when he would be explaining things to them in medical terms. They always asked him what medical experience he had.

The MRI and swallow study were very interesting. The swallow study unfortunately did not show any improvements so he is still needing to eat thickened purees and has to have all of his liquid via g tube but we hope to see improvements in this area over the next 6 months and do another swallow study. His MRI was pretty scary for me because it brought back a lot of the traumatic feelings I initially had when he was in the hospital for meningitis. I hated putting him under sedation then and I hate doing it now. Thankfully he is in a much better place health wise and there were no complications with the sedation. His MRI took about 2 hours to finish between the actual MRI and the recovery. His brain initially showed a lot of pockets of brain damage but now it has healed and has shrunk and filled in the missing holes. This is what the doctors expected considering his previous brain injury.

The keto diet is very interesting because everything Tyson eats we have to measure down to the tenth of a gram and make sure he eats all of it. Thankfully there is an amazing website we use that helps us figure out the correct ratios and has all of the nutritional information added so we don’t have to figure all of that out when creating new recipes. Since we have been on the diet for about a month now we have seen some huge improvements with Tyson’s cognition and muscle control which is extremely exciting! Tyson has also adjusted to the diet really well, a lot of times it causes major GI issues. We are still waiting to see some improvement with his seizures but we are adjusted the diet a little bit last week and hopeful it will improve his seizures over the long hall. It can take up to a couple months to see improvement with the keto diet.

We have some amazing new doctors and therapists. Something exciting is that here in Oklahoma we are able to have two different speech therapists. One to help with his eating skills and the other to help with his language skills. He also currently has one Physical Therapist and one Occupational Therapists but in a week or so we will be adding a second Occupational Therapist. It is amazing to see Tyson’s language skills developing. We are teaching him how to identify between different types of items, communicate through sign language, verbal language and soon electronic language. His feeding therapy is also making huge improvements. Unfortunately with the swallow study he had in Texas at the hospital we are not able to give him anything but thickened puree but his therapist is teaching him how to swallow correctly and how to move his tongue in the right motion so he can gain more control. We also absolutely love his pediatrician. There is a really amazing rehabilitation hospital for children in Bethany (a city close to us) and it helps children who have complex brain injuries or need other injuries heal. They also have an outpatient clinic associated with the hospital where all of the pediatricians and specialists are very familiar with working with children who have special needs. Typically this clinic is very difficult to get into and I called a few months before we moved here and they told me their waiting list was about a year long. Once we moved here I was on the phone for about 2 days straight trying to find a pediatrician who was willing to take Tyson on and who also had open availability. Thankfully I called the Children’s Center back and they had recently taken on a new doctor and we were able to get right in with him. He is very comfortable with all of Tyson’s needs and anytime we need to come and see him we can get same day appointments.

We have been so blessed with all of the people who have welcomed us into their lives since we have moved here. Our Church ward is so welcoming and so willing to help us with whatever we need. We feel so lucky to have them. We also were able to meet a sweet family who has a child who is very similar to Tyson in his needs and age. We have enjoyed getting them together and sharing ideas about therapists, doctors and equipment. We were able to have them over to celebrate Tyson’s second birthday where he was able to do a smash cake! I was pretty heart broken during his first birthday because he was so miserable with having the infantile spasms and being on steroids so he couldn’t handle much of any stimulation let alone smashing a cake. But this year he loved tarring into the cake and eating as much sugar as he could handle. It was also fun to be able to skype with our parents and share the party with them even though they were very far away.

For Thanksgiving we were able to visit some of my family in Texas and celebrate with them. Since my extended is so large it is hard to move anywhere in this country without being within a few hours of some kind of family member which is an amazing blessing and support. We were also able to go and tour downtown Dallas which is somewhere we had never been before. We definitely will not forget the large eyeball statue any time soon. We were also able to visit with some of my Cousins and enjoy some holiday Christmas lights which was very fun. It is really fun to get Tyson together with his second cousins and see them all play together.

For Christmas we decided to have our very first Christmas with just our small family. Every year since we have been married we have spent it with one of our parents. We enjoyed sleeping in (I don’t think we will have many more years like this) and going to church. Then we coming home and opening presents together. I think Tyson enjoyed playing with all of the wrapping paper more than anything. It was nice to watch Christmas movies, make dinner and read books together.

As life goes for most people that I know life plans often change. When we moved out here we planned on Cameron working as a paramedic for a few years and then deciding if he wanted to go back to become a flight paramedic or a PA. But during Cameron’s internship he decided that it was no longer for him. He ended his internship in November and decided that he wanted to do something else even though he didn’t know what at the time. It was pretty overwhelming for the both of us but we knew we were making the right decision. He still has graduated with his bachelor's degree but no longer wants to work as a paramedic. He did a lot of research into different career options available and during our visit to Texas he was able to visit with one of my cousins who originally planned on going to medical school but has an undergraduate degree in Occupational Health and Safety. This was very intriguing to Cam because it is something that applies to the medical and science background he has but is not as intense as being a paramedic and it also pays much better. Through his research this career path felt right to the both of us so starting in February Cameron will be going back to school online to pursue this degree which will take him about a year and then will give him a second bachelor's degree.

Since we still needed to figure out a way to provide for ourselves in the meantime Cameron tried for about a month to get a full time position but nothing was lining up. We also considered the option that I go back to work and Cameron stays home with Tyson while going to school. One of the very first positions I applied to I received after going to a job fair. This was a big sign that we were on the right path for us and it will give Cameron and Tyson some amazing quality time over the next year. So I have accepted a position of managing a self storage facility about 15 minutes from where we live. I also considered teaching school (that is what my degree is in) but they do not pay very well in Oklahoma and I knew that would be an exhausting job for me.

We are also planning on becoming homeowners and real estate investors this year. We have the amazing opportunity to be mentored by my parents and their business partners who are very successful real estate investors. We feel very blessed to live where we do right now because it is an amazing market for owning rentals and making amazing passive income.