Where have we been?!

I know it has been some time since my last post, but it is safe to say life has taken us for some crazy turns lately. I'll first start with some updates on Jacob, our main man. Since the start of the fall season we have been on a bit of a rollercoaster with Jacob's respiratory functions. All summer he was free and clear from junky airways and nebulizer treatments. Unfortunately with the change of seasons, cold and flu bugs going around, and your usual allergens, there is not a day that usually goes by that we do not have to administer one or more treatments to clear up Jacob's airways. Over the past month we had two close calls which we thought were going to land us back at the haunting ER with a PICU stay. Fortunately this year we have an on-call nurse through the hospice center who can make it out to assess Jacob and treat him from home so we can avoid those stays. Typically during the winter months children with neuro and spasticity issues tend to have a harder time controlling their airways along with their body temperature. To know it is only the start of November and we have already seen two instances of this, it makes us just a bit nervous.

Aside from these two episodes, things have been pretty good with Jacob. Our two nurses that watch him during the day have been wonderful and are amazing with him. It is comforting to know that when we are at work and away from our son, he is in the best care. Jacob also received a new set of wheels! It took almost 9 months along with many phone calls and paperwork to get this accomplished. He seems content and less spastic when he is in his new wheelchair and can spend more time in this one than the one we had on loan. What is really neat about the chair is that you can adjust the height of it. So if we are sitting on the floor playing a game with Dominic, we can lower Jacob to our level so he can interact with us. Or if we are at the table eating dinner, we can adjust his chair to be able to push him up to the table with us. It is amazing to see what a difference a new wheelchair can make when it comes to not only Jacob's comfort level but also his interactions with us.

We are also in the process of ordering Jacob a new stander. The current stander we have on loan is wooden, bulky, and pretty barbaric looking. I believe I posted a picture in one of my other posts, but it basically looks like we have Jacob strapped in to a back board. Although he loves his quality time standing up like a big boy and seeing the world in a different view, it can be difficult for one person to put him in and out of it. The process behind getting him just put in the stander is a work out within itself, let alone not the safest for either person involved. We took Jacob last week to test try a few standers and he was a lot less restricted and much more at ease in the newer ones. Since it took about 9 months to get Jacob's wheelchair, we shall see how quick the turn around is for his stander. I won't hold my breath.

Jacob had his first appointment with his new physiatrist yesterday, as his former physiatrist took a job down in Oklahoma. We'll just say the personality of the two are well, different, but hopefully he will receive the same level of care. The physiatrist noted that he feels it is a good idea to keep up with the Botox for Jacob and he definitely notes the spasticity, especially in his lower extremities. He also noted that Jacob was on a surprising dose of medications for his age. Although this may be the case, he still manages to have a higher level of tone and arching throughout the day. Even though on paper it may look like a lot for Jacob, it is the one thing that has consistently been able to keep him calm and comfortable. He also sent Jacob off to get x-rays of his hip. He noted that kids who are quadriplegic usually end of having hip issues sooner than later that will lead them to multiple surgeries. He wanted to gather a baseline for Jacob's hips yesterday to keep an eye on them and to hopefully do as many preventative measures as possible to keep Jacob from running into problems. All-in-all, we are glad that this physiatrist is on the same pace with our previous one when it comes to the concern for Jacob's needs.

Over the course of these past couple months, we have gone through our usual other rounds of appointments, meetings, and check-ins. Jacob has still been going to aquatic therapy once a week. As always, this is his most favorite time of the week. There has not been much progression with the therapy, but the one major thing therapy is doing is keeping him relaxed and stretched out. We have also had several visits from the hospice nurse, hospice social worker, county therapists, and homecare managers. These have all been updates to see how Jacob has been doing overall and noting any changes in his health. It has been a lot harder to juggle all of these appointments now being back at work. I have had plenty of instances where I come home from work and get settled in with the kids and then hear the doorbell ring. Then for the next hour or so we find ourselves meeting with nurses, social workers, county workers, and therapists. By no means am I complaining because we are very appreciative of all the help and support we receive from each of these avenues. I just never realized how it is almost like a part time job trying to manage everything when it relates to a special needs child.

Besides all of the updates on Jacob, I wanted to make mention of a couple of things that we have noticed over the course of the past few months. It seems as if Jacob has really found his voice. We feel that Jacob does know who we are as his parents, but he really knows his big brother. It has been so heartwarming to see how Jacob lights up when he hears Dominic's voice or sees him entering the room. He braces himself with smiles and laughter waiting for Dominic to come play with him. If Jacob is ever sitting in his chair and notices Dominic, he begins to try to "talk" to him. Jacob could be silent for the longest time, and then he sees his brother, and he will not stop "talking" until he gets Dominic to come over by him. It is hard to explain, but when you see it, it is a pretty amazing thing. Jacob has also finally noticed our 100 pound lab, Diesel. Up to this point Diesel would walk in front of him or even lick him, and Jacob would not acknowledge him. Over the past month or two Jacob is able to track him with his eyes and giggles when Diesel runs past him. Any little development is progress to me.

On to some family notes. To make life even crazier we decided to add some big changes to the mix. First, we are in the midst of moving. We did not have any intentions of selling our house so soon, but we could not pass up the opportunity. Shawn and I have discussed the possibility of finding a home or building one that would be more adaptive for Jacob. As Jacob gets bigger, it is going to be harder to constantly take him up and down the stairs to his bedroom and bathroom, along with wheeling his equipment around our house with our current floor plan. Shawn decided to call the realtor to see what price they would list our home at. Low and behold, we had an interested buyer who made an offer before we even listed the home. And better yet, they are allowing us to rent there home that is only a mile down the road. We have been going crazy packing, making plenty of phone calls, updating with address changes, and filling out the endless piles of paperwork. The next step is figuring out where we are going to permanently live and doing all of this madness all over again.

The next big change is Dominic and Jacob are going to be big brothers! Shawn and I always discussed having three children. With everything that had gone on with Jacob, we were not sure if that would ever be a possibility. To be honest, we do not know what the future holds for Jacob. To see the love that Dominic and Jacob have for each other and how they interact just melts my heart. Being told that Jacob's lifespan will be dramatically shorter is a hard pill to swallow. What is even harder is knowing that Dominic's only sibling could be taken from him way too soon. We are beyond excited and blessed to be able to welcome another baby boy into our family in February. I am 24 weeks along and have been doing pretty well so far. They are taking extra precautions with this pregnancy and I have had doctor visits every 2 weeks with ultrasounds every 4 weeks. Up to this point, everything has looked good. We are keeping positive thoughts and prayers for a happy and healthy pregnancy and baby.

With all of that being said, I think it may be understood now why I have neglected the blog for some time. I will be sure to keep updated sooner than later this time!

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.

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.

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!

Physiatrist.. And then the ER

This past Monday we had our appointment with the physiatrist at Akron Childrens. Of course that morning Jacob woke up like a floppy noodle. I had never seen him with muscle tone that low since he was born. Go figure the day we take him to see the doctor for his high tone, he has the lowest tone possible. Jacob loves to cooperate like that when it comes to our appointments 😉. Although the doctor was not able to assess Jacob's tone to the fullest, he did recommend a couple different options. The one he really pushed was Botox. Botox is used to treat high muscle tone because it essentially paralyzes the muscle and helps it to relax. Jacob would receive injections in his calves, thighs, biceps, and fingers. The injections in these areas should help with his therapies, along with his overall well being. Right now Jacob's legs are so tight that diaper changes, clothing changes, and other daily functions are a struggle. It is like trying to break a wooden board in half just to bend his leg, let alone try to pry his arms open. The Botox will last 3-6 months so we should hopefully see after the first treatment if this is something beneficial for him. We will set up this appointment once it clears insurance. I wonder if there is a way they can add a few more vials for me?!? I think mama needs it more than Jakey! Lol!

The doctor also asked what equipment we have for Jacob. Shawn and I both looked at eachother and kind of laughed. We said our arms. If Jacob is not laying on his play mat or on his oversized pillow, we are holding him. We have tried to ask for different types of positioners or chairs for Jacob to sit/stand in, but there really is nothing on the market for special needs babies it seems. The doctor wrote a script for a special needs stroller, stander, chair, leg braces, and neck brace. At that point reality kind of hit me again with the severe needs of Jacob. His poor little body cannot even sit up on his own or even hold his head up. At least these items should provide him with some comfort, mobility, and less stress on our bodies from holding him all the time. Overall, it was a good first appointment with his new physiatrist.

After Jacob's appointment we decided to stop up to see the team at Palliative Care. As the day progressed Jacob was looking worse and more lethargic. We wanted to see if one of the doctors in their office could take a quick look at him. The main doctor who normally visits with us was there when we arrived and wanted to take a listen to him. Once she did, she said she was not comfortable with how he was breathing and felt we should go to the ER. So, our little trip to the physiatrist turned out to be a trip to the ER now. We headed downstairs to the ER and were seen relatively quick. When they called Jacob back to do an initial assessment, his pulse ox was very low and they ended up rushing him to a trauma treatment room. In a blink of an eye nurses were rushing him off and the room filled with 7-8 different medical professionals all performing different tasks. They were asking us a slew of questions and working quickly on Jacob. He was a lot worse than we ever imagined. He was working hard to breathe and they ended up doing several treatments on him. They were running various tests and xrays to find a cause. Jacob tested positive for RSV and the beginning stages of pneumonia. He was placed on a Vapotherm oxygen machine to help maintain clearer airways. It all was a blur to be honest, but once they got Jacob to a stable point they moved him up to the PICU. He remained there for the next three days. Each day he slowly got better and they lowered his oxygen levels. On the third day they moved him out of the PICU to a regular children's inpatient unit to continue to monitor him and ween him completely off of the oxygen. On the fourth day they were comfortable enough to let us take Jacob home. They sent him home with a breathing treatment kit along with a suction machine for his excessive secretions.

Let's just say last week was a really close call for Jacob. You hate to think about what if we went home and never stopped up at Palliative Care? I try not to let my mind go there. It was a long, emotional week but we are all back at home again and doing well!

Sick... AGAIN

For the past week now Jacob has been battling an illness of sorts. He has had an on again, off again temperature, along with being extremely fussy, tired, and overall lethargic. Jacob also has a bad cough and his breathing sounds miserable. It is hard on a daily basis hearing him wheezing with very deep, almost labored sounding, breaths. This unfortunately is to be expected when he gets sick though. As stated before in previous posts, he does not have the ability to effectively clear his airways so he struggles with respitory functions. We have been watching him go through a cycle of sleep, startle, scream, sleep, startle, cry, cough, sleep... Well, you get the point. I hate to see him look so miserable and in such pain, but there really is nothing we can do. And his sleep is horrific. I feel like he is a newborn again waking every hour or every other hour just screaming. We had to skip therapy for him this week too which I am sure does not help either. We hope that Jacob starts to turn it around here soon before he lands himself in the hospital again.

A couple other updates too. Palliative Care came out this week to do a home visit to see how Jacob was doing. We expressed our concerns how he is still very high toned and how he can be stiff as a board when you're holding him. They discussed some different options but really it sounds like more medicine is the key for now. The good news is Jacob's appointment with the physiatrist got bumped up to this Monday. A physiatrist is a rehabilitation and pain management doctor. They will hopefully help us figure out ways to keep him comfortable and not as stiff with his tone. Jacob also got a new bathing chair this week since he cannot sit up on his own and he has definitely outgrown his infant tub. We will try this out soon and hopefully it will make that time a lot easier and less stressful. I think Dominic likes to use it as a lounge chair in the living room more so then having Jacob use it in the bathtub. I found him on it the other day reading a book. Oh Dominic, never a dull moment with you!

Here's hoping this is a better week for Jacob!

Some updates

Thought I would give some updates on Jacob. Nothing major, just little odds and ends updates. Jacob started with a new aquatic therapist last week. This is his third therapist in 5 months. To my surprise, the transition has gone very well. She has done great with him and is comfortable with Jacob in the water. She has only dunked him once.. So progress! Jacob's new therapist also has been doing pediatric therapy for 17 years so she is pretty established. We may even be able to have her come to the home to do some land therapy with him, which he struggles with. To date, he can not hold his head up, roll over, lift his head for long periods of time during tummy time, sit, or grab toys. So anything she can help us with for Jacob is a plus.

Speaking of milestones, Jacob has yet to eat any solids and he just turned 8 months. We have tried several times to feed him rice cereal but he struggles with 2 things: head control and understanding how to swallow food. So as it stands, he is going to remain on formula for awhile. Most of these types of babies never will fully learn how to eat on their own. The steps to eating solids is too complex for their thought process. One big plus is that we are starting to get some relief when it comes to paying for his ungodly pricey formula he has to be on. Jacob has been approved for additional insurance for medical handicapped kids and they assist with paying for the formula. This has been a tremendous gain especially since we are on one income right now.

Another update is Jacob has been fit for hand splints. He often has his hands fisted and is unable to reach for or grab objects. The splints will make it easier for Jacob to keep his hands open and the thought process is that he may be able to eventually attempt to reach and grab for objects. I am glad he will be receiving these because at times his little hands will begin to turn purple from clenching them so hard.

One other update is Jacob is back to sleeping inconsistently 😴. I think this is going to be a common theme for him unfortunately. Last night alone he was up three times throughout the night. Two times a night is the norm for him. The hard nights are when he wakes, you feed him, give him meds, and then he is up for the next hour arching and fussing. Jacob is now 18 pounds and it becomes hard to basically wobble around an 18 pound agitated baby for an hour. It is starting to do a number on my back to say the least, along with my soon to be gray hair! The neurologist did give another med to help him sleep better but we have seen no positive effect as of yet.

Besides all of that, we are set up to see the physiatrist at the end of February and the neurologist at the beginning of March. Until then we wait... And wait... And wait to see what is around the corner for Jacob.

Oh yes, and to top it off, we started Dominic in preschool this week. Although it is only 2.5 hours a day for 3 days a week, it nearly breaks my heart. He was a trooper on Monday and trudged through it. Today, for his second day, not so much. He did not want to go and did not want me to leave. I left him in big, sobbing tears there. I am not ready for all of this!! Ha..

Closing the book on 2014

I think it is safe to say this has been the longest, most emotional, and challenging year to date. It truly is overwhelming to think back to January and all that has occurred over the course of this year. We have been through so much but have also come so far with the birth of Jacob. We endured much heartbreak but also gained much love from this little man. We also have seen what a champ Dominic has been and what an awesome son and big brother he is. We are happy to finally close the book on 2014 and start over in the new year. It does get a little frightening though to think about what may come in the new year. With Jacob's diagnosis and prognosis, will it really get better in 2015? Stay the same? Or get worse? This holiday season was a bit harder than I would have expected. I often pondered the thought while celebrating Christmas with our family, could this be Jacob's one and only Christmas? Hard to believe that could be the reality of it all. I am glad we did have so much time together as a family and enjoyed each little moment. Although we don't know what is around the corner, here is hoping that 2015 is a bit calmer and quieter than this past year!