October 24, 2015 ~ Tyson’s Disability Story

Over the last month Tyson has made some huge progress. He has started eating about 1-2 oz of baby food in one sitting and he is handling thinner consistencies then he used to be able to do. This is a really great step on his path to being able to fully eat and drink again. We still need to see him gain more strength in order to handle thinner liquids but he is defiantly on that path! Tyson has also started loving his binki again. He can keep it in his mouth all by himself without assistance and loves to suck on it any chance he gets. I believe he is teething right now and getting his two front teeth.

Unfortunately about 3 weeks ago during conference weekend Tyson got an ear infection. Early on in the week he developed a cough and by Saturday it was getting worse. I decided just to take him in to see his doctor because I didn't want to have more issues through the rest of the weekend. When we got there his doctor took one look at his ear and said he had an ear infection and probably some time of viral cold. I had to talk myself down from a little bit of panic and remind myself that normal healthy kids get sick some times. Its hard to see him get sick and not jump to where we have been recently because that started with him just being sick as well. I worry a little bit because he never developed a fever. I know that not all kids get fevers with ear infections but I worry if he will be able to have fevers when he needs them because his brain damaged hurt the part of the brain that controls body temperature. But we were glad to catch his ear infection early and we got him on some antibiotics and probiotics. Unfortunately since Tyson got sick he digressed a lot with how well he was feeding through his tube. I had him getting about 8 oz of formula over about 45 minutes every 4 hours. We went straight back to continuous feeds (being hooked up 20 hours a day) because he couldn't handle the volume coming in that quickly. He is now getting his formula over about 15 hours per day and that is better but not where we want it. Hopefully over the next week or two we will continue making progress. It is hard to gage how to feed him because normal babies can tell you when they don't want to eat or if they don't feel well, this is not the case with Tyson. He is very difficult to read and tune into but I am glad I can follow the mommy instincts that I do have.

A week after Tyson's ear infection his Nonna (Grandma Donna) and his Aunt Jordyn came for a visit. They just couldn't stand to be away any longer. We had a lot of fun while they were here. Tyson snuggled with them both a lot and during that time Tyson started crying! Only a few minutes after I took him from his Nonna to rock him he looked at me and started doing the Moro Reflex (where little babies jump like they are falling) and then cried. We were all excited and worried at the same time! I know most people don't think crying is a big deal but he hasn't cried since he went into his coma the first night in the hospital. His Nonna was just happy she wasn't the one that he cried with first! It only lasted for a few minutes but from what we can tell he either has some kind of nerve pain that causes him to do that moro reflex or he is overwhelmed by what is around him that he doesn't know how to handle it. Since he comes off of a little bit of medication every week we have seen more and more alertness from him. I believe that he was so snowed over with the medication that he is finally able to be aware of what is going on and he doesn't always know how to handle the stimulus. Since then he has cried almost every day. The other cool thing to note is that the day before he cried he had finished a pool therapy session and his therapist has also taken a little bit of Cranial Sacral classes. She worked for about 15 minutes with him and he loved it. I personally don't think those two things are coincidences and that the Cranial Sacral therapy really helps him!

While Nonna and Aunt Jordyn were here we were able to go to a pumpkin patch that is only 1 or 2 miles from our house. It was fun to get out, take pictures and pick some pumpkins. After his Nonna and Aunt Jordyn had been here for about 5 or so days my Mom showed up to help take Tyson and me to Salt Lake for follow up appointments. It was fun to visit all together and to enjoy everyone's company.

Since Tyson is becoming more aware he is getting to be a lot more fun to play with. While my mom was here she was able to play pick-a-boo with him and have him smile/giggle from it. I haven't been able to do that with him. He defiantly loves both of his grandma's!

On Thursday of that week we all woke up early and drove down to Salt Lake City. We met my Uncle in downtown for lunch at a Greek Deli. It was very yummy but while we were there Tyson fell asleep in his car seat and then woke up about 30 minutes later while we were still there. He woke up crying and freaking out. He cried for about 10 minutes which is longer then he ever has before. It was difficult because I wanted to just hold him tight but I felt bad staying in the restaurant and disturbing all of the other people. Since Tyson is about the size of a 2 year old with low muscle tone he is difficult to hold and carry out of the room while crying. We ended up just staying in the restaurant and let him calm down. But it was good to see that he doesn't handle new and unusual places very well. During the rest of the afternoon we walked around Temple Square, went to the park and visited our Cranial Sacral Therapist, Leesha.

It was so good to see her after a few months and she loved seeing the progress Tyson had been making. She worked with Tyson for about an hour and helped him relax. Release tension and pain that he was holding onto in his lungs/gut. It is also really neat to hear her explain everything she is doing even though I don't understand it completely. I know that this therapy is really making a big difference for Tyson. That evening we went to my Grandparent's home in Farmington and spent the night with them. That evening Tyson was very awake, talkative and ate almost a whole jar of baby food in one sitting! Before now he has only had maybe 5 to 15 small bites of baby food at once. This is something else that I think was an improvements from him getting Cranial Sacral therapy. He was also very mobile and would grouch at us when we were making him do things he didn't like.

The next day we had a very busy day of appointments and getting lost in Salt Lake. Tyson met with an Audiologist and we tested his hearing anatomy to see if it was all working well. According to the tests he has perfect anatomy but the hard thing to test for his how he is processing everything in his brain. We know that he reacts to sound but we don't know how much he understands of what we are saying. Later that afternoon we met with his Ophthalmologist and after a 2 hour appointment we learned that Tyson's eye anatomy is completely intact and perfect. This is amazing because usually when kids have traumatic brain injuries or suffer from a lot of brain swelling like Tyson did. They will see optic nerve damage from the pressure of the brain that used to be there. We were so happy to find out that this was the case. His doctor also recommended that we start seeing a vision therapist to help with Tyson's tracking and promoting eye movements. Just like his ears we can't tell how his brain is processing everything he sees but he is slowly regaining tracking abilities. Tyson generally looks off to the left side and can't really do much when we are trying to get him to look to the right. We asked the doctor about this and he said that it is common with brain damaged people and that it generally comes back over the period of a year to a year and a half.

After we left that appointment our car fob to the rental car we had broke and didn't work. We ended up waiting for 45 minutes for AAA to show up and let us into the car. We then made a quick trip to Costco and to get the battery fixed in the fob. That evening we went back to my Grandparent's home and spent time with them. Early the next morning we left for Idaho and were dropped off by my mom. It is always so fun to see her but so sad when she has to leave.

Over that weekend while we were in Salt Lake Cameron and his brother were able to go camping and get some good guy time in. Cameron is also loving his Paramedic program and comes home every day so excited about what he is learning and doing. I think he will make a great Paramedic! I have also started seeing a therapist over the last month and it has been really helpful for me! The therapist I am seeing also has a special needs son so she understands more then most the emotions and fears that go along with that. I am starting to feel more normal and I am slowly adjusting back to our new normal.

Tyson is also progressing well in his physical, occupational and speech therapy. He is sitting up better and getting better trunk control, his head can stay up mostly by himself, he can roll from his back to his side by himself and all the way to his stomach with a little bit of help. He doesn't like putting weight on his hands but we are working on that right now. It is so amazing to see him struggle so much but to overcome and progress despite his struggles!

We currently have a nurse coming 3 nights a week to be with Tyson and we also have my sister coming 3 days a week to work with Tyson and give me little breaks. They are both wonderful reliefs and Tyson is defiantly taking an army to raise!

The other thing I have been working on is a plan for what he will be eating when he turns a year old. Right now the plan is to give him a blended diet (mixing different foods together in a smoothy form and feeding him that way). In the tube fed world and with nutritionists this is not the usual normal choice. Most people who have feeding tubes get a mix that has all of the calories and vitamins and minerals that are needed but it doesn't give all of the nutrition that a person needs to thrive. I have heard accounts that when children are on these mixtures they are more lethargic, they have dark circles under their eyes, don't interact well and have a grayish skin tone. Most nutritionists like this option and believe that it is the most complete nutrition that tube fed kids can get. I have decided to do the blended diets because it is more natural, kids adjust back to regular food a lot better after being on these kinds of diets and they don't have the negative side effects that the other mixtures seem to give. There is a transition process and I will be reviewing it with his doctor and nutritionist in Salt Lake before we begin in November. I also hope to be able to keep him off of most/all dairy and gluten. I have researched several studies saying that those two things can inhibit brain recovery and health. I want to give Tyson the best chance he can have and I believe this to be the best option. I have also found another really neat product that is called liquid hope. It is a nutrition supplement similar to the ones mentioned above but they are all natural, organic and provide way more nutrients then the typical mixture. Since we will be able to get some time of supplement from the home health company I hope that we can choose this option and use it as a supplement to his blended diet.

Tyson also turned 11 months old a few days ago and this was the update I gave about him: Yesterday Tyson turned 11 months old!! He is 32 lbs and 32 inches long. He wears Size 2t and size 5 diapers. He has most of his head control back and is starting to use his abs to try and sit up. He maintains eye contact and can roll over with minimal prompting/help. He loves to talk to us and can eat 1-2 oz of baby food in one sitting. He is sucking and keeping his binki in his mouth without help and is sleeping like a normal baby his age. He likes to grab and play with toys while laying on the floor and he loves sleeping on his side. He likes when we sing five little monkeys and kiss his little lips. He has started to cry and laugh just about every day. He loves his daddy so much and always talks to him when he gets home from school. He doesn't like when we touch his head or face but can lay in the pool and float around for hours content as can be. He is coming of a little bit of medication every week and is handling that as well as can be hoped for. We love our little man and feel so blessed to celebrate his birthday in one month!!

That is pretty much what has been going on with us over the last month. We appreciate everyone's continued love, prayers and support. I have attached some pictures and videos of Tyson.

This is part of doing his speech therapy and its what we do before he eats so that he is all warmed up.

This is one of the first times he cried. His cry is a lot stronger now but I took this video to send to his doctor to make sure that we shouldn't be worried about anything unusual.