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!

A month filled with appointments!

Over the course of the last few weeks we have had our fair share of appointments with Jacob. To start with, we had her six month update for Help Me Grow. This meeting included our caseworker, county physical therapist and occupational therapist to review what is basically like a baby IEP. When Jacob was three months old he was put on an IFSP which allowed us to utilize therapists through the county to work towards Jacob's developmental goals. We first reviewed the goals we made for Jacob at three months of age and then from there discussed new goals for him. It was crazy to hear the goals we had for him when he was three months old as we know so much more about him now and what the reality of his development will be. At three months we originally had goals for him to be able to make eye contact, sit up on his own, crawl and hold on to objects. One great thing is that he is meeting his eye contact goal about 50% of the time. The other goals had to basically be erased as we understand those are no longer obtainable for him. Our new goals revolved around adapting him to his new equipment (stroller/stander), batting at objects and working on head control. After we revised his goals we then discussed our desire to receive more occupational therapy for Jacob instead of physical therapy. Since he does aquatic therapy twice a week we feel he will benefit more from occupational therapy through the county. Towards the end of the meeting we discussed our need for an outside and inside stroller for him. The occupational therapist went on to schedule an appointment with Miller's equipment.


Within the next week a representative from Miller's equipment came out with a couple different models of adaptive strollers to possibly fit Jacob's needs. It was difficult to figure out which one was the best suited for him without being able to see a demo of each stroller in the catalog. Knowing that Jacob will be spending a good majority of his day in this stroller, we wanted to make sure it was something he would be comfortable in and would also be easy to transport around. After our initial appointment we met with the representative one more time to put together a couple quotes to submit to insurance. It is amazing the costs of adaptive equipment. For instance, a regular baby bumbo is maybe $25-30. A chair that is made out of the same material is about $400-500. It is just draw dropping and sad to me that families have to go through a lot as it is raising a special needs child and then on top of it pay insane amounts of money on way overpriced adaptive equipment. Back to our appointment though.. Jacob hopefully will be receiving an indoor chair and outdoor stroller hopefully in the next few months. This will soon be his main set of wheels inside and outside. I am sure Jacob can't wait!


One of our next appointments was with our neurologist. We had our usual monthly update. He felt that Jacob was making a little bit better eye contact and vocalizing, or cooing, more. The neurologist still felt he was only at a one to two month level developmentally. He was glad to see Jacob a little more content and decided to keep everything with his meds the same. He did feel that seizures could still pop up at any time but to just enjoy these calmer and content moments we are experiencing with Jacob recently. Our next appointment with the neurologist will be in 2 months.


The next appointment was our initial home visit with the Western Reserve pediatric hospice nurse. When we met last with our palliative care team at Akron, they suggested meeting with the hospice team. When the nurse came she explained a lot about pediatric hospice as we had quite a few questions. Pediatric hospice is not the same as adult. Although it may be possible, this does not mean Jacob will die today, tomorrow or in the next few months. It means he has a chronic condition that has a shortened life expectancy. Children can remain in this program for years.The goal of Western Reserve is to decrease the amount of hospital visits and gives them the ability to send a nurse out either weekly, monthly or when needed to treat minor issues that may arise. Our goals for Jacob are to keep him as comfortable as we can and give him the best quality of life. These goals align with hospice care. The Western Reserve has two "paths" of care, either hospice care or palliative care. The difference being palliative care provides less in home scheduled visits by the nurse. But all other services can be utilized. This is the path we have chosen for now. We can always change programs back and forth as Jacob's condition may change. They also have a social worker that will help us find ways and or government programs that could help us. The nurse will come to our home every other week to update on Jacob's condition and field any questions we have. The social worker will visit once a month to provide any additional support for us or our family members.


Besides that, we have had Jacob's aquatic therapy twice a week and the occupational therapist from the county is coming every other week. So between his aquatics, occupational, and hospice alone we have been keeping pretty busy. Jacob overall has had a great month. He is still taking consistent naps, sleeping decent at night, eating well, and is staying healthy. It has been a welcomed change for all of us!


On another note, Dominic is doing well too and still enjoying preschool. The other week in school they were discussing the true meaning behind Easter. They had to fill in a sheet on what they were thankful to Jesus for. We looked for Dominic's sheet on the wall and there it was - "Dominic is thankful to Jesus for ....waffles." Haha! We than spoke to him about what they learned about Jesus. He said that Jesus was hurt and took an ambulance but some other guy died. You have to love the way their little minds works!



And sorry - not sure what is going on with these fonts and white outlining lately on this blog!