Jacob turns 2!

Last week marked Jacob's 2nd birthday! We are grateful to celebrate another year with our sweet, little man. To reflect on everything that has gone on in our lives these past two years is crazy, and a bit overwhelming if you dwell on it for too long. As wild as his journey has been so far, we could not be happier to have him with us on his special day.

There has been quite a bit that has happened since the last post, oooohhh, about 5 months ago. Ooops! Wow, where to begin? For starters, Jacob is no longer the baby of the family. He was promoted to the title of big brother on February 17th. Dominic and Jacob welcomed another brother into their silly crew, Adam James or "AJ". Although the verdict is still out if Jacob is a fan of this change, he does throw a smile AJ's way here and there. Along with a new addition to the family, we have packed up our old house and have been renting a temporary home before we figured out our next move. Over the past few months we have secured a lot to build an adaptable home for Jacob. We have kept ourselves busy putting together the perfect plan to fit the ever expanding needs for him. We are due to break ground this week. Hopefully Jacob will appreciate having more freedom and room to move around in his chair with the design we came up with.

Speaking of moving around, Jacob has acquired a new piece of equipment. About 2 months ago he received a new stander. This stander replaced the old, mid-century looking one we received from the county. Although we appreciated being able to loan the stander from them, it did not seem too comfortable being strapped basically to a backboard for 20 minutes at a time. His new stander is on wheels and allows us to push him around the house. It gives him a sense of independence and being able to stand upright and "walk" throughout the house. It also has a tray on the front of it that allows him to interact with toys or anything else that is placed in front of him. To see the huge grin on his face when he is in his stander is priceless. Our goal from day one for Jacob is to keep him content and comfortable. The stander definitely reaches both of these standards for him.

Jacob has also received another instrument called a percussion vest. This is essentially a wrap that goes around his chest area attached to two tubes and into a machine. The vest inflates and the tubes push air in to the vest so it is basically patting his chest, at a more forceful rate. He has to wear the vest two times a day for 20 minutes each treatment period. The hopes of the vest is to break up any congestion in his chest and make it easier to clear out his lungs and airways. Although it may sound a little torturous, it is not as bad as it sounds and Jacob gets excited each time we put the vest on him. It seems like anything that seems painful or uncomfortable to us, he always tends to find joy and excitement in. We will take his smiles and giggles any day over his tears!

We received the vest for Jacob just a few weeks ago and it could not have come at a better time. Last month, in April, Jacob was admitted to the hospital for what we thought was going to be a quick stay. Turns out he ended up having to remain there for 9 days. Prior to taking him in, we had hospice come out to check him. For two days prior to the visit he was slowly deteriorating with his respiratory status. When Shawn took him to the ER they saw him right away and admitted him. For the first 3-4 days Jacob would not even open his eyes and it was a challenge to keep his vital signs where they needed to be. His temperature, oxygen levels, and respiratory rate were anything but normal. All of the tests and blood work kept coming back as normal. During the last couple days of his stay they found out that Jacob was infected with the adenovirus. We were glad they found the root of all of this and he was on a slow road to recovery. By the 9th day they sent him home with a NG feeding tube in that remained there for the next week until he was able to eat again fully on his own. I spoke to soon when I mentioned the month earlier that we made it through the entire winter months without a hospital stay. Who would have thought winter would have stayed around all the way through the end of April. Only in Cleveland!

Unfortunately there is one last area to update on with Jacob. What we knew was inevitable with Jacob's diagnosis from day one has finally become a reality. Starting back in December Jacob has slowly started to have questionable activity. It all started in mid-December one morning before I left for work. Jacob woke up screaming in his crib. This is normally not how he awakes on any given morning. When I went in to check on him I noticed what seemed to be stiffening of his body. I picked him up and held him in the rocking chair and realized he was having what appeared to be seizures. I tried to break him from this cycle but could not. I took him downstairs hoping the change of environment would stop them. I tried to comfort him the best I could, and after about 5 minutes, this activity stopped. After this occurred his temperature spiked, heart rate raced, and became very lethargic. For the remainder of the morning in to the afternoon, Jacob slept and rested. Unfortunately this has been the first of many episodes.

Several months back they performed a one hour EEG on Jacob to see if they could track any abnormal activity. Up to this point each of his EEG's have been normal. The following week our main neurologist was out of town so the head neurologist ended up giving us a call to fill us in on the results of the EEG. He was very concerned with the results and decided to increase some of his medication. He was mostly concerned about the right mid-brain. When reading up on the function of this part of the brain, it made sense to us why his temperature, heart rate and respiratory rates were racing and abnormal. This part of the brain controls these different functions. The following week our main neurologist ended up calling us stating that he was not concerned with the EEG and he did not feel he was having seizures. This was a bit puzzling and frustrating because it was hard to know which doctor to believe. Since this time we have just been documenting the frequency of these events. We were able to finally capture one of Jacob's episodes on video and showed it to our main neurologist during our latest appointment. After all of these months he was finally convinced, after viewing the video, that these could indeed be seizures. Jacob is now signed up for a 3-day EEG study in June to track his brain activity. So we shall see sooner than later if we have any new answers with all of these changes occurring with Jacob.

Everything else in our lives with Jacob is business as usual. He still receives his aquatic therapy every week, monthly visits from hospice and the county, along with routine neurology visits. As always, his time in the water is his favorite part of the week.

We will have a very busy summer but let's hope I make my way back to updating on Jacob before Christmas rolls around :)









Happy birthday to me :)

Getting his vest treatment set up - thanks to Dominic's assistance!













Tummy time with my little brother!

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!