It's been some time.. but we're still here!

I know it has been some time since my last post. Between summer beginning, Dominic not taking naps, and the Cavaliers playoff games, time to do anything productive has been minimal lately. Over the course of the past month we have been staying busy. Jacob has had numerous appointments, in-home visits, and therapy sessions.

To start with Jacob had his one year check up with his new pediatrician. When we first arrived at the visit the receptionist handed Shawn a 1-year developmental questionnaire for us to fill out. Wow, was that an eye opener to see how far behind Jacob really is. On a daily basis with Jacob you just become accustomed to who he is and you almost forget about what a typical child can do at his age. On the whole survey I do not think he fit the criteria for one item. Every column was checked with a big fat "NO". When it came time to get called back and meet with the pediatrician, the first thing he did was take the questionnaire and threw it in the garbage. He stated that the receptionists do not always know the background of the kids and therefore just give them to everyone. He said we never have to fill those out and it is only just a kick in the gut to families with special needs children. I am glad he is on the same page as us. The pediatrician then overviewed Jacob's growth. He is 90th percentile for length (he is getting to be a very long and lean kiddo), 30th percentile for weight, and 5th percentile for head circumference (we are glad to see he is staying on the charts). Beyond that he switched Jacob over to a toddler formula and addressed any other concerns we had. To end the appointment Jacob received 4 vaccinations. Poor little guy!

The next appointment was with the neurologist. We spoke to him about our concern for Jacob's increased spasticity. It seems with each passing week that Jacob is having higher tone with his muscles and is arching his body back more. Now that he is getting bigger, he is getting harder to hold. It becomes a challenge when he is continually arching out of your arms. Let's just say he has become a good upper body work out for us. Jacob also seems more uncomfortable during his sleep. He gets up multiple times and cries for longer periods of time during naps and at night. The neurologist felt after hearing our concerns and from his observations during the visit that another dose of Botox would greatly benefit Jacob. He also increased some of his medications in the mean time in hopes of providing Jacob with some relief. There was really no other news that came from that appointment so we will meet with him in three months as long as we steer clear of the seizures.

Over the past month we have had several visits from the hospice nurse. She still comes every other week to do a home visit and check up on Jacob. Each time she has come, Jacob has checked out well. So no news is good news with her! We have also had several visits with the occupational therapist. She has started to work with Jacob on oral recognition. Currently, Jacob still does not take any solids and is strictly bottle fed. The therapist is working on different techniques in hopes of stimulating the mouth to accept and allow food in. At this point Jacob still does not seem to understand the concept of moving the food in his mouth to allow him to swallow it. When anything is introduced in to his mouth he does not move his tongue and the food just sits there. This task may take a lot of time to master or he may never grasp the concept at all. The best we can do is try with it, so that is what we are doing. The next thing the therapist is working on is positioning Jacob in a stander. A stander basically looks like a torture device from the outside (you'll see in the picture below), but actually enables Jacob to be able to stand upright on his own with no assistance from us. Allowing Jacob to stand for small periods of time is good for his overall health. When they put him in the stander for the first time it was amazing to see how tall he looked and how old he looked. For once he didn't look like a baby, but a toddler.

We also had Jacob's annual IFSP meeting. Again, the IFSP is like an IEP for babies. It allows Jacob to receive services through the county for his disabilities, which includes the therapy. Since we met only three months ago to tweak his plan, it was a rather quick and painless meeting. All of his goals stayed the same. This included working with Jacob on making better eye contact, being able to bat at and grasp toys, and adjusting him to new equipment. We spoke to the team about schooling for Jacob and when it will begin. We were informed that toddlers will begin preschool at the age of 3 and at that point they will convert over to an IEP. Once they are 3 they will attend preschool from 9-1:00 during the school year. It is crazy to think that is only 2 years away!

The last meeting we had was with a home health care nurse who came to assess Jacob's need for an in-home nurse to care for him in our absence. With Jacob's medical needs, he is not able to go to a typical daycare or have any provider care for him. He needs a person that has a medical background who can administer his medications and continually assess him on a daily basis. Although the meeting seemed encouraging and the nurse felt Jacob has a definite need for an in-home nurse, this normally does not happen right away. There is a long waiting list of kids who need in-home providers so Jacob's request will most likely get denied. From here we will then need to appeal it, reapply, appeal it, reapply, appeal it... you get my point. So, although there is a need, it does not mean that Jacob will receive this service any time soon. And until Jacob receives an in-home nurse, I will not be able to return to work. So for now, we wait to see what the outcome will be.

Aside from the appointments and therapies, Jacob has been on a bit of a rollercoaster lately with his overall health.  He has his good days and his bad days. One day he will be doing well and responding great, and then the next he will be lethargic, breathing harder, and spiking a temperature. Although Jacob's condition has become somewhat of a normal lifestyle for us, it still is very physically and emotionally draining dealing with everything day in and day out. On the bright side, it is finally summer time and I have enjoyed getting some sunshine and fresh air after this long winter. We look forward to spending a lot of time outdoors and adventuring to new places as a family.

 Relaxing During Therapy



Standing like a big boy

 Say Cheese

Jacob's First Birthday!

We made it! We made it to Jacob's first birthday! Since he has been born we have been told that Jacob may only make it months to years. To be able to celebrate his first birthday with him is such a blessing within itself. This year has been challenging, heartbreaking, and draining, yet in many ways rewarding. We are happy that we are able to have Jacob with us today as we know things to this point could have been so much different. I feel as if every day we get wrapped up in appointments, therapies, visits, and our daily routines that I needed to take some time to truly reflect upon this year. Instead of recapping Jacob's first year I decided to take a different approach, so here it goes.


Over the past year, I HAVE LEARNED...

That a special needs child is a child first.

There are a lot of babies who are facing life-threatening disorders and many who may never come home.

A simple smile can be a huge developmental milestone and has so much meaning behind it.

Neurology is like meteorology, it is all a guessing game.

Hospital couches are pretty similar to dirt grounds.

How backwards the government really is when it comes to providing assistance.

To become our children's biggest advocate because we are the only voice they have.

Everyone has an opinion and it is okay if it is not the same as yours.

To stop turning to the internet for answers.

Not to get aggravated with other peoples' ignorance.

That strong people do not get handed difficult situations - anyone can become strong when it is the only option you have.

That those who you thought would be there for you during your time of need may become more distant,

And those you may not have expected to be there for you during that same time may actually be some of your biggest supporters.

It does not make you weak to ask for help but it takes some getting use to.

Laughter can sometimes be the best answer to your problems.

It is okay to cry, and then to cry, and then to cry some more.

That life may not go the way we envisioned it but don't dwell on that.

To take it day-by-day instead of focusing on the big picture, as the big picture can be too overwhelming.

There are a lot of things we cannot control, but I am slowly learning to be okay with that.

Family is the most important thing and can get you through tough situations.

No matter how old we are we will still need our parents, and they will always be there for us.

Stressful situations do not have to tear marriages apart, rather it can make them even stronger.

Siblings can adjust to any situation and have unconditional love for others.

Jacob will teach me more than I will ever be able teach him.


We love you Jacob and hope to celebrate many more birthdays together!

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.