Cha Cha Cha CHANGES!

It has been a little over a month since I last updated and there have been plenty of changes since that time. The biggest news is that in the beginning of July, Jacob got approved for an in-home nurse. This was a very unexpected surprise as we were told time and time again that this would probably takes months to years to be approved. In my head I already prepared myself to stay home for another school year. In fact, I already submitted my letter for leave of absence to my employer weeks before that. When I received the call from the Ohio waiver program I was in a bit of disbelief. After I got off the phone with the case manager I actually ended up calling the county to double check that they showed in their system that we were approved for the in-home nurse. They verified that yes, we were indeed approved. After I got off the phone with the county I started to go into a bit of panic mode figuring out how we were going to get everything situated before I was be due back to work on August 10th. The case manager reassured me that we would have a nurse in place at our home starting by August 1st. She stated that if this did not happen, than she would not be doing her job well and should be fired. Well, needless to say somebody could have been given a pink slip since we did not get the nurse situated until after I started back to work. Haha, kidding. Although I wanted to be able to have some time with the nurse and get her situated with Jacob and how a typical day goes, I am thankful that Shawn was with her for her first day. Today was actually her first day with Jacob with no one else at our house, and guess what, they both survived! So fingers crossed that this all works out for the entire school year.

Besides the nurse situation, Jacob has had a slew of appointments. We met with the physiatrist in the beginning of July to assess Jacob's muscle tone and comfort level. We addressed our concerns for his increased tone and his lack of comfort during his rest periods. The physiatrist decided to order another round of Botox for Jacob. During the last week of July he received his second round of Botox. On the day of his appointment Jacob was doing much better than the first time he received Botox. His first round was back in February. During that time he was recovering from RSV and bronchiotis. His lung quality was poor and they chose not to sedate him. It was a horrible experience as we had to pin down our own son while he was fully awake as they administered the Botox. This time we were confident he would be okay for sedation. When they took him back to begin the procedure, they began to question his airway quality again. Shawn kept trying to reassure them that the slight congestion was all nasal and normal for Jacob. After some thought, they decided to go ahead with the sedation. So, to say the least, this administration went way better than the first time. As usual, Jacob handled it all like a champ and did not skip a beat once he got home. We are hoping this second round provides some relief to Jacob's muscle tone as it did the first time.  We also found out in July that Jacob's physiatrist has accepted another position out of state and would be leaving at the end of the month. We really like this physiatrist and feels that he truly understands Jacob's needs. Hopefully the next one will be just as good.

Jacob also had a couple of appointments with the occupational therapist. She did a lot of work with stretching his hands and feet, along with working on him in the stander. Jacob has been clenching his hands more and scrunching his feet. This all goes along with the increased tone. For the stander she brought a couple new toys to encourage Jacob to touch or bat at objects. The first is a stand that she hung colorful beads from. He loves the how shiny and colorful the beads are, but gets too excited when he sees it that he tends to clench his arms close to his body. I am glad he has found another toy that catches his attention, but I think it is going to take some time before he comes close to trying to bat at this one. The second toy was a regular Leap Frog electronic toy. The toy was specially wired to a big red button. When the button is pressed, it will then set the toy off. This was a really neat concept and the therapist stated that they will work a lot with Jacob on these types of toys when he enters preschool. He actually did press the button several times during the session, which we think was more accidental. Either way we will take it as a sign of progress! After our last session we found out our occupational therapist will be leaving. This was a huge upset because she is very good at her job and working with Jacob. 

Along with the occupational therapy, Jacob has been continuing with his aquatic therapy twice a week. This remains his most favorite time of the week. The therapist started to use a flotation device called the SwimAva ring which is a swim ring that goes around the child's neck. It doesn't sound appropriate and looks even crazier on, but it is such a great addition to his therapy. By wearing the SwimAva, Jacob can float and move freely in the pool all by himself. It made me slightly emotional watching him in the water with the ring on because it was nice to see him be able to do something completely on his own without continually being supported by a person or positioner. Besides his therapies, we were visited by the hospice nurse and social worker several times. These were all just routine visits to check up on Jacob and make sure there were no changes in his health. All checked out well and we are always happy with that news.

Aside from Jacob, we celebrated Dominic's 4th birthday this past weekend. He has been counting down his birthday, and "wish list" of toys, since Christmas. We had a great time with family and friends and it was a fun, HOT, day. I also started back to work on August 10th. It was exactly 15 months since Jacob was born. It is crazy to think of everything that has gone on in our lives and with Jacob over this time, but when I returned, it was as if I never left. I am entering my second week of work and all is going well so far. Although I miss my boys dearly, it is nice to be back in to some sort of routine. I also think Shawn is glad to know that I have to at least shower before dinner time and wear something more than a t-shirt and running shorts.

Here's hoping this next month goes well with all of our family changes and Jacob stays in good health as we start to enter the fall season.