There has been quite a bit that has happened since the last post, oooohhh, about 5 months ago. Ooops! Wow, where to begin? For starters, Jacob is no longer the baby of the family. He was promoted to the title of big brother on February 17th. Dominic and Jacob welcomed another brother into their silly crew, Adam James or "AJ". Although the verdict is still out if Jacob is a fan of this change, he does throw a smile AJ's way here and there. Along with a new addition to the family, we have packed up our old house and have been renting a temporary home before we figured out our next move. Over the past few months we have secured a lot to build an adaptable home for Jacob. We have kept ourselves busy putting together the perfect plan to fit the ever expanding needs for him. We are due to break ground this week. Hopefully Jacob will appreciate having more freedom and room to move around in his chair with the design we came up with.
Speaking of moving around, Jacob has acquired a new piece of equipment. About 2 months ago he received a new stander. This stander replaced the old, mid-century looking one we received from the county. Although we appreciated being able to loan the stander from them, it did not seem too comfortable being strapped basically to a backboard for 20 minutes at a time. His new stander is on wheels and allows us to push him around the house. It gives him a sense of independence and being able to stand upright and "walk" throughout the house. It also has a tray on the front of it that allows him to interact with toys or anything else that is placed in front of him. To see the huge grin on his face when he is in his stander is priceless. Our goal from day one for Jacob is to keep him content and comfortable. The stander definitely reaches both of these standards for him.
Jacob has also received another instrument called a percussion vest. This is essentially a wrap that goes around his chest area attached to two tubes and into a machine. The vest inflates and the tubes push air in to the vest so it is basically patting his chest, at a more forceful rate. He has to wear the vest two times a day for 20 minutes each treatment period. The hopes of the vest is to break up any congestion in his chest and make it easier to clear out his lungs and airways. Although it may sound a little torturous, it is not as bad as it sounds and Jacob gets excited each time we put the vest on him. It seems like anything that seems painful or uncomfortable to us, he always tends to find joy and excitement in. We will take his smiles and giggles any day over his tears!
We received the vest for Jacob just a few weeks ago and it could not have come at a better time. Last month, in April, Jacob was admitted to the hospital for what we thought was going to be a quick stay. Turns out he ended up having to remain there for 9 days. Prior to taking him in, we had hospice come out to check him. For two days prior to the visit he was slowly deteriorating with his respiratory status. When Shawn took him to the ER they saw him right away and admitted him. For the first 3-4 days Jacob would not even open his eyes and it was a challenge to keep his vital signs where they needed to be. His temperature, oxygen levels, and respiratory rate were anything but normal. All of the tests and blood work kept coming back as normal. During the last couple days of his stay they found out that Jacob was infected with the adenovirus. We were glad they found the root of all of this and he was on a slow road to recovery. By the 9th day they sent him home with a NG feeding tube in that remained there for the next week until he was able to eat again fully on his own. I spoke to soon when I mentioned the month earlier that we made it through the entire winter months without a hospital stay. Who would have thought winter would have stayed around all the way through the end of April. Only in Cleveland!
Unfortunately there is one last area to update on with Jacob. What we knew was inevitable with Jacob's diagnosis from day one has finally become a reality. Starting back in December Jacob has slowly started to have questionable activity. It all started in mid-December one morning before I left for work. Jacob woke up screaming in his crib. This is normally not how he awakes on any given morning. When I went in to check on him I noticed what seemed to be stiffening of his body. I picked him up and held him in the rocking chair and realized he was having what appeared to be seizures. I tried to break him from this cycle but could not. I took him downstairs hoping the change of environment would stop them. I tried to comfort him the best I could, and after about 5 minutes, this activity stopped. After this occurred his temperature spiked, heart rate raced, and became very lethargic. For the remainder of the morning in to the afternoon, Jacob slept and rested. Unfortunately this has been the first of many episodes.
Several months back they performed a one hour EEG on Jacob to see if they could track any abnormal activity. Up to this point each of his EEG's have been normal. The following week our main neurologist was out of town so the head neurologist ended up giving us a call to fill us in on the results of the EEG. He was very concerned with the results and decided to increase some of his medication. He was mostly concerned about the right mid-brain. When reading up on the function of this part of the brain, it made sense to us why his temperature, heart rate and respiratory rates were racing and abnormal. This part of the brain controls these different functions. The following week our main neurologist ended up calling us stating that he was not concerned with the EEG and he did not feel he was having seizures. This was a bit puzzling and frustrating because it was hard to know which doctor to believe. Since this time we have just been documenting the frequency of these events. We were able to finally capture one of Jacob's episodes on video and showed it to our main neurologist during our latest appointment. After all of these months he was finally convinced, after viewing the video, that these could indeed be seizures. Jacob is now signed up for a 3-day EEG study in June to track his brain activity. So we shall see sooner than later if we have any new answers with all of these changes occurring with Jacob.
Everything else in our lives with Jacob is business as usual. He still receives his aquatic therapy every week, monthly visits from hospice and the county, along with routine neurology visits. As always, his time in the water is his favorite part of the week.
We will have a very busy summer but let's hope I make my way back to updating on Jacob before Christmas rolls around :)
Happy birthday to me :)
Getting his vest treatment set up - thanks to Dominic's assistance!
Tummy time with my little brother!
