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!

Having a good morning

Although I have some general updates over the past couple of weeks, I thought I would just share a little video instead. The other day Jacob was in an overly happy mood in the morning. I was able to capture a little bit of it on video. I don't know if he was really trying to mimic my words/sounds, but whatever the case may be, it was the highlight of my week. Enjoy!

(I will give the updates in another post shortly)

Splints, braces, and a good week

Jacob finally received his hand splints, foot braces, and benik vest. The benik vest is basically a neoprene vest that velcro's on to him and is supposed to help him sit upright. He currently is pretty loose and floppy in his chest/waist area when you hold him. We had the appointment at our house for his fitting and it went rather quick. It is suggested that he wears these around 6-8 hours a day. Jacob does not mind the hand splints and benik vest. We can leave these on him for an hour or two at a time. The foot braces on the other hand is a different story. He only tolerates them for about 30 minutes so we have to build up his tolerance to wearing those. It may be a combination of how tight and restricting they are, along with how hot and irritating they get. It will just take time.

And I am sure I am going to regret saying this in fear of jinxing myself, but Jacob has had an amazing week. This is probably the best week we have had with him since he has been born. He has been eating well, napping consistently, overall seems comfortable and content, and sleeping pretty good at night. Maybe his bronchiotus is finally cleared or he is now adjusting to the new medicine doses. Whatever it is, we will take it. This great week along with the sunshine and warmer weather has made life good! Here's hoping this trend continues :)

Some overdue pictures

I have been horrible with adding pictures to the blog because I usually do all of my entries from my phone. When I try to add photos it never seems to work. I finally transferred some pictures to our computer to share. Below are some pictures of our adventures with Jacob over the last few months. Enjoy!

 Trying to feed Jacob solids.

 What he enjoys most, WATER - at aquatic therapy!

Jacob's stay in the PICU.

Feeling better and being transferred to the main floor.

Jacob loves his big brother :)

Not so happy about his new chair.

Getting his beach body ready.

Not amused.

Trying out his new wheels.

Say cheese!

Cruising with Dominic.

Jacob didn't think my joke was funny.

Neurologist and a new pediatrician

We met with the neurologist this past week as part of our monthly updates with him on Jacob. As usual there were no appreciable changes in development with Jacob. Shawn and I expressed our concerns with his sleeping and overall level of comfort. We also spoke to the neurologist about our expectations with Jacob when it relates to his quality of life, anticipated seizures, development, and a few other items. The neurologist spoke first about the seizures. He noted that he is a little surprised that Jacob has not had any seizures, but it does not mean that they will not be coming at some point in time. He said it really is just a matter of when they will begin. We asked if all of his medication may be holding them off and he stated that his seizures will most likely be too powerful for medication to control. The neurologist went on to address his sleeping situation. He understands that it is important not only for Jacob, but for all of us, to be able to sleep and get rest to function. He decided to start Jacob on another medication to possibly help him relax a little bit better. This will be Jacob's fifth medication that he has to take multiple times a day. Since he has started this new drug we have seen a little improvement with his sleeping. At this point we will take any small step in the right direction!

The neurologist then spoke to us about Jacob's development. He mentioned that even though Jacob's head and body are growing, his brain matter is still severely affected. He said that currently Jacob is functioning at a one month old level. In his lifetime he expects him to maybe advance to a three or four month old level. Hearing that plain out hurt. As a parent you invest a lot of time and energy into your children in hopes that they will grow up one day to be happy, healthy, and independent individuals. Knowing that Jacob may not advance beyond an infant developmentally is tough to swallow. Regardless of this, we will still continue to love and nurture Jacob so he can reach whatever his highest potential will be, while being comfortable and happy. The neurologist then talked about other genetic testing he would like to perform to still try to find a cause for Jacob's condition. As long as insurance covers the testing, we plan to follow through on it.

Today we met with Jacob's new pediatrician. Although a bit further of a drive, we decided to switch primary physician's because we felt our previous one did not feel comfortable with Jacob as her patient. When we would go to our monthly check ups she did not say much to us about our son and she did not seem to care about any updates we had on Jacob. The other specialists said that we should always funnel everything through the primary doctor first. The few times we tried to do that, our previous pediatrician would just refer us to the palliative care team. Our new pediatrician took time to really get to know Jacob, Shawn and I, and our overall care plan for Jacob. He was engaged the entire time and sees himself as a key person when it relates to Jacob's care. At the end he sent his nurse in to meet us so we could put a face to a name if we ever need to call with any questions. Overall, we were very happy with the new pediatrician and glad we made the switch.

As an update to the botox - we have seen some improvement in tone, but not as much as we would have hoped. Jacob can open his hands more than ever before, but his legs are still pretty tight. They say you may not see positive outcomes until the second series of botox. The second round will not be for another 3 to 6 months. But again, we will take any improvement no matter how big or small it is.

Next up - Jacob receives his braces and splints next week!

Botox and Braces

This past Friday we went for Jacob's first Botox treatment. Before the appointment we stopped to get his legs casted for his new leg braces. Currently He scissors his legs and his feet turn inwards. The leg braces will help keep his feet flexed, straight, and his legs apart. He did very well during the casting and didn't make a peep. He was a little trooper that day. We were able to pick out a pattern for the braces so we chose the planes, cars, and trucks. For anyone who knows our other son, he will be elated to see the pattern on Jacob's leg braces and will probably want a pair of his own. We should receive his braces, along with his hand splints, in a week or so.

We then went to Akron Children's for his Botox treatment. What we thought was going to be a quick and simple procedure, yet again, turned out to take a different direction. When they took Jacob back for sedation they did not like the way his lungs sounded. Ever since his hospital stay a few weeks back Jacob has not seemed to fully recover from his respiratory infection. They confirmed that back in the sedation room. They said he was very wheezy, even after suctioning his airways. The doctor than laid out two options. We could either wait and reschedule his injections for a later date, or we could go ahead with the procedure and just give him a pain medication with no sedation. As we talked out the options, rescheduling did not seem to be the best plan. Jacob on a normal day is raspy and wheezy with his breathing. It is just the nature of his diagnosis. If we waited three more weeks we most likely would land ourselves in the same situation.

On the other hand, the second option seemed so painful and inhumane at first. Jacob would receive a heavy pain killer, but would not be sedated and would be fully awake during the procedure. Jacob was due to receive 24 injections in his biceps, forearms, thighs, and calves. I hate taking our children to the doctor to get their immunizations, and now we were being asked to go ahead and stick Jacob 24 times while he is fully awake. As horrible as it sounded, our doctor informed us that this is how it was done not that long ago. He also mentioned that some of his partners still carry out this treatment on their patients with no sedatives. Our doctor stated that he chooses not to practice this way if he has the option to sedate. In some cases like Jacob, it is really the only option you have if you want to receive the Botox treatment. We also thought about how irritable and miserable Jacob can be on a daily basis and it may be best from the quality of life stand point to sacrifice 10 minutes of pain for 3-6 months of possible relief.

So, I hope Jacob won't hate us later in life for choosing to do the injections that day. Let's just say that was the longest 10 minutes I have ever been through. Shawn, myself, and the nurse had to hold down Jacob while the doctor injected him over and over again. To hear his cries and screams just broke my heart knowing there was nothing you could do to comfort him. I think it is safe to say after witnessing that I may not be cut out for the medical world. But at least it is over with and hopefully Jacob will be able to relax his body. They informed us it can take 3-7 days to see the effects from the Botox. We are on day two and have not seen any improvement as of yet. Fingers crossed it worked!

Next up is our appointment with the neurologist tomorrow. We shall see what that appointment brings. Stay tuned!