Weekly Updates and "Team Jacob"

Over the past few weeks we have been keeping busy with our weekly routine, along with a couple other appointments mixed in. Jacob has had some ups and downs, but overall has still been doing pretty well health wise. Between the weekly therapies and visits from hospice, Jacob has had a loaded schedule. He has been doing good with his aquatic therapy and is able to relax and stretch out. His therapist has really been working on loosening his legs and also on head control. I love seeing Jacob in the water because that is the one place he always seems so content and relaxed. He has also had a couple visits from the occupational therapist. She has been working with Jacob on attempting to bat at toys, visual awareness, and stretching. Jacob's muscle tone issues cause him to be stiff or flexed with his hands, arms, legs, and feet. It is very important to continually work on loosening and stretching these different muscle groups so the muscles and tendons do not become shortened leading to permanent flexion of certain body parts. The therapist noted that his arms were especially tight and we needed to pay special attention to this area.

Besides the therapy visits, Jacob had a couple updates with the hospice nurse, as well as the social worker. All checked out well with the nurse, so no news is good news. When I met with the social worker she spoke to me about different services and programs that hospice has to offer. When it came to government assistance and programs though, I was given the same information that I received from the other social workers. Even though Jacob is quadriplegic and has many needs, there really are no programs Jacob would qualify for. It gets frustrating hearing this time after time again, and makes me more upset with how backwards the government really is when it comes to assistance. I'll save you from my rant on this though. So basically without it running through some sort of government program, it is nearly impossible to get any type of in-home nurse or aide to care for your child. This is the one area that we have been trying to tackle since day one and have been led to a dead end each time.

Jacob also had his two month update with the physiatrist last week. This physiatrist is the doctor who administered his Botox. He felt that Jacob's muscle tone was a lot better and did not feel the need to schedule another Botox procedure at that time. He wants us to come back in two more months to reevaluate. Since that appointment we have felt that Jacob's tone is slowly starting to increase. He is starting to arch his body more and it is becoming harder to bend his limbs when changing him. Both of his therapists have also noted their concerns for his increased tone. Naturally he would check out fine last week at the doctors and then this week present worse off. We plan to speak with the nurse about it at her next home visit.

Besides all of the appointments and visits, we have decided to participate in a couple running events on behalf of Jacob. We designed our own little "Team Jacob" shirts and will be debuting them this weekend at the United Cerebral Palsy "Race to Empower" event. Shawn, Dominic, Jacob and I will run (more like leisurely jog) as a family in the one mile fun run. In June, Shawn and I will be running in the Akron Children's "Kids Are Number One" 5k race. After the 5k we will include Dominic and Jacob in the one mile fun run. We are especially looking forward to this event for all that Akron Children's has done for Jacob and our family over this past year.

Other side notes in our life - Dominic had his first dentist appointment this week. He did amazingly well and enjoyed his visit. Thank gosh we started off on a good note with the dentist so he will want to go back. Also, Dominic will be starting T-ball next month. They were searching for people to volunteer to coach and Shawn gave me the great idea to offer my assistance. Well little did I know they would actually take me up on this offer. So, I will be coaching Dominic's T-ball team come June. It will be a little scary with 3-4 year olds swinging bats, throwing balls, and running around the field aimlessly. What could go wrong, right? Wish me luck!