June 16, 2015 ~ Tyson’s Disability Story

Today they told us that the ultrasound that we took yesterday hasn't changed at all from the first one they took on Sunday. So that is good, that means that the ventricles in his brain are not swelling any more then they were on Sunday. They will continue to monitor him and make sure that he doesn't start swelling or swell more then he already has. But this will be monitored for months to come as well.

We also had the speech therapist come and evaluate him for the first time. She worked a lot with putting a little bit of formula on a binki and putting it in his mouth to see if he will swallow and or choke. From what she saw he did well and has the potential to improve. He was sucking on the binki lightly and he would swallow occasionally. She also said that having him sit up in a chair is very helpful and can assist him with his ability to handle his secretions and continue to learn to swallow better.

His physical therapist also made a visit and she talked to us about a few stretches that can be done to help his muscle tone. His ankles are pretty stiff and she recommended that we buy some high top shoes for him to assist in keeping his feet in the proper position. We will be doing his " baby yoga" with him a few times through out the day and we will continue to have in home therapy when we go home as well as outpatient therapy and occasional visits to Primary Children's in the months and year to come.

We spoke with the resident doctor on his team and she started mentioning the going home process and that they were starting to think about that as a team. They still need to talk to the neurosurgeons to decide how they want to monitor him going forward. The speech team will need to do a swallow study and see if he is eligible for a g tube placement or if they will keep his current feeding tube which is in his nose for the months ahead to see if he can progress enough to eat on his own in that amount of time. His seizures will also need to be under control before we are discharged.

Thinking of going home is very overwhelming. I will have in home health assistance but I will be responsible for managing his feeding, meds (there is about 10 or so that he takes through out the day), therapy and making all of the appointments and signing up for all the programs that he will need to be apart of. And I used to think that taking care of a regular baby was a lot of work! I know that I won't be alone and that there are a lot of people to help but it is just overwhelming to think about right now. We are excited about the prospect of going home though. I wouldn't be surprised if we are in the hospital for an additional 5 to 7 days from now though.

Grandma Kim and I decided to be naughty and do arts and crafts for Father's day with Tyson. We were lucky and the nurses didn't come in while we were doing it. I am sure Tyson thought we were being ridiculous but we thought it was fun. I was also able to hang out with my little brother Brian yesterday for a few hours. Its kind of fun to realize your little brother is actually easy and enjoyable to hang out with. He also played the piano for me in the lobby of the hospital so that was fun to hear as well.

The afternoon and evening was pretty uneventful. We played with him while he was awake and then let him relax while he was sleeping. It has been so fun and nice to be able to hold him whenever we want. It was really hard to not be able to hold him for about two weeks.

I have learned a few things while being in the hospital about what to say to families going through hard times. We have had different members of the cleaning staff come in every day to clean our hospital rooms. And almost every time I hear them say to me "I hope he gets feeling better soon." That phrase never struck me before being in this situation but now I realize that it is probably something that should not be said by hospital staff to families. Especially when they don't know the situation or what is wrong with the child. Because some times that child will not get better or like in our case it will be a very long road until he is "better" or at a functioning level. I know that it is said with the best of intentions but it is hard to hear that as a parent of a very sick baby when you don't know if they will get better or not.

The other saying that is really interesting is "How are you doing?" I know that everyone who asks has the best of intentions but how do you respond when your life feels like it is falling apart and the child that you had will never be the same again? I generally respond by saying "I am doing good all things considered" just so I don't have to think about it and experience all of those emotions again. I don't want to discourage people from asking me or my family that question but there is more behind the surface of my response. I really do appreciate and love that people care about us and check in on us daily and I know that there is not a better way to ask that question but it is just something to think about.

Alright I will get off of my soap box now. I really do appreciate the different notes of encouragement that different people send me every day. It really touches my heart that people I know, barely know and never met are touched by our story and experiences. I know that we are being carried through this trial in our lives right now and I hope that heaven will continue to help us as we learn what is best for our little Tycoon as his life progresses.