A New Diagnosis... Rolling with the punches

For quite some time we had been concerned with Bryce’s tone. The scissoring of his legs was the worst we had seen it and his tone had been extremely high. Back when we went through SDR, the operation was to address the spasticity in his legs. The operation did eliminate the spasticity and he was able to have full range of motion in his ankles. However as he recovered and grew stronger it became very apparent that his tone was still a big part of the problem. SDR doesn’t solve for the tone, but other operations could. We have had several discussions on surgeries to address and hopefully manage his tone. Recently we opted to go ahead and begin Botox injections again so that Bryce could get more immediate relief while we discuss the next steps.

In late January we had met with his CP doctor for the injections and to discuss what those next steps should be. They sent in a Child Life Specialist to entertain Bryce during the appointment and to also help keep him as calm as possible during the injections. As they usually do they asked what Bryce loves so they could bring in the IPad and show him his favorite cartoon or play a game. We told her his love of sports and that he would be most happy with that. This decision ended up being key for that appointment. Bryce gets very excited when he watches any games so this gave the doctors an opportunity to see Bryce when he was excited (since most times he is NOT very happy to be there). When they witnessed Bryce and how his body responded when he got excited the atmosphere in that room changed. It became very obvious to them that this was dystonia.
Dystonia is a movement disorder that causes a person’s muscles to contract uncontrollably. Over time the contraction can cause the body part that is affected to twist involuntarily and can result in contractures and abnormal postures.

The symptoms of dystonia can range from mild to severe in nature. So the reaction of Bryce’s body when he is excited is the brain sending the response to certain areas of his body. Bryce when watching sports will point his toes and scissor his legs. His arms get tight and go straight out (like Batman arms). He also has times where he will turn his head a bit and grind his teeth. All of these responses are a result of the message from his brain to these muscles. All along we believed it was just his excitement and his tone kicking in which it was. However, I never considered this as being something bigger and more concerning.

There are several other symptoms of dystonia that Bryce has that we were unaware would be related. When he eats he lets his head fall back and we constantly have to adjust his head position when eating. Some days he will keep his head turned to one side and we have to move the chair sideways so that we can get to his mouth. They also asked if Bryce keeps his arms bent and I explained that he did when we would try and change his shirt but definitely when we were putting on his winter coat (which is a very difficult thing to do). The more we looked into the more things became clear. We knew that things had changed but had honestly thought these changes were a result of him growing. Hearing this news was pretty devastating even though I really can’t say that it was completely shocking.

Why so devastating? The diagnosis of Cerebral Palsy was tough but we also knew that it wasn’t a progressive disorder. We knew that over time we would have to manage his tone but I honestly always believed that once we made it through all these phases of growth that we would be able to better manage his tone so that he could at least be comfortable. Dystonia is a completely different ball game. Most times it is a progressive disorder and (as the doctor told us) it is extremely difficult to manage. It never goes away and it can change over time. Some people deteriorate and can lose abilities. For example, someone that could once eat may need a feeding tube placed.

We discussed several different treatment options and we discussed that every person is different so the right treatment for Bryce will be trial and error. Everyone did agree that we needed to address this now because of the impact that it is having on bone development and so forth. There had been a dramatic change in his right hip from August to January alone…nearing but not quite at the point of needing hip surgery…. yet. So we started a plan to gradually bring on board medication(s) and we have also scheduled phenol blocks that can be injected into very specific nerves. Then we will see how things are at that point before determining next steps. Best case scenario – these things alone will be management enough (at least for now).

For a few days I had to exercise my right to be upset, mad and to kick yell and scream. It’s hard when you can’t find a release – when you are so mad and upset that you have no idea how to let it go. How can you keep spinning the positive when you keep getting punched in the gut? So as much as I wanted to throw my hand’s up and let the entire world know how unfair this is to my sweet sweet boy – I just tuck those feelings away again. We will deal with this and find the best way to manage it knowing now what we are up against.

The phenol blocks have been scheduled for early tomorrow morning. We are to arrive at 6AM and the OR is scheduled for 7:45AM. We should see an immediate change when he wakes up (Botox takes a week or two before any change could be seen). If all goes well we should be able to come home tomorrow. For a few days it may be hard for Bryce to adjust and he could seem a little “floppy” but hopefully this works and will last as long as possible before he needs it again. It is temporary but unlike Botox that lasted maybe 3 months for Bryce – this “could” last up to 10 months for him. I hope and pray that it will last that long for him but with it being his first time we won't really know. I am praying for positive results and a prolonging of a much larger surgery.

Giving Voice

When the boys were younger we were very focused on helping Bryce overcome some of his physical limitations. We knew that he couldn’t sit unassisted, crawl, much less walk. At such a young age he had a very busy schedule full of therapy and specialist appointments. We were doing all that we could to give him every opportunity to overcome some of the many barriers that he faced. It wasn’t until their second year of preschool that we needed to start also focusing on his communication. Sure, we knew that he wasn’t talking but at home we could easily communicate with Bryce. We knew what his different signs were for when he was hungry or thirsty. We knew if he was happy or sad and usually we would know exactly what he was wanting. It isn’t until you realize that the rest of the world might not know those signs that it really started hitting home. Then your thoughts take you to other places…. Bryce is excellent with his head shakes for “No” and “Yes” but I am not always sure the choices we gave him were what he would have chosen to “pick” from. So the year before they were to begin Kindergarten we started the process of trialing communication devices that would work for him. If you have ever met Bryce you would know that he is a bright boy, but even we didn’t know how much he knew. Did he know all his letters? Numbers? We really couldn’t answer that with certainty.

Many devices require use of a hand or finger to make selections for communication. Bryce has little use of his right hand as it stays fisted most of the time. He is a definite lefty but he cannot use his fingers to make precise selections on a device. We heard about a relatively new method of communication that allows a person to make selections on their eye gaze. So all therapists were on board and it was very clear that this would be the best device to start with. The initial evaluation and Bryce’s first time using the device was AMAZING. I wrote a post shortly after on that experience. If you missed it click here. He went through several more working sessions in order to document for insurance that he was successful using the device. Let’s just say that the battle of getting this device covered by insurance has been one of the longest most painful experiences yet. I won’t taint this exciting news by going into the very long process. BUT….Finally last Friday, January 16th, we received approval for Bryce’s communication device. It is so hard to believe that 18 months of trialing the device, receiving many denials, requiring more and more information… Bryce will FINALLY have his very own way of communicating.

The device (Tobii Eye Gaze I15) will calibrate to Bryce’s eyes and he will be able to operate it much like we use a mouse to operate a computer. The amazing thing about this device is that it will mature with him. The software will require updates so that the programs that Bryce will be using will grow right along with him. The device will give Bryce the ability to make choices, express his needs/wants and let us know about his days. It will even allow for him to use synthesized/digitized speech that will “say” what he chooses. You can even select a voice that is age appropriate that can also adjust as he gets older. Eventually he will be able to send emails and text messages and access the Internet. It can even turn channels on the TV, operate a DVD player, turn on lights and open doors! There is a built in camera that would allow him to take pictures and post images. He can do homework or classroom tasks and print them right in the classroom. I am simply amazed and so thankful that we live in a time that such technology exists!

As you might imagine it will take some time for Bryce to build up endurance to use the device for long periods. He will have to train his eyes and strengthen them in order to be able to use it for long periods of time. We just click a finger or type a key to make our selection… sometimes without needing to look at what key we are selecting. Bryce will have to “gaze” at each selection in order for the software to identify what he is choosing. Matt and I will also have a lot of learning to do and will need to participate in some training as well. But it is so exciting to open this door for Bryce! I am so excited that we will be able to communicate with Bryce in a way that he can let us know what he is thinking, how his day at school went, who his new friend is and so on. It will take time and very small steps – but it will be so worth the wait!

Just because a person can’t speak doesn’t mean they have nothing to say.

May Your Days Be Merry

"What if Christmas , he thought, doesn't come from a store. What if Christmas, PERHAPS, means a little bit more."

-Dr. Seuss, The Grinch

 

Wishing You a Very Merry Christmas and Happy New Year!

The Croley's

A Very Special Gift

I often tease that I need therapy. My family has asked what I would like for Christmas and jokingly I have said “a therapist.” Truth is that I wonder with each new battle we face, is this the year….. The year I finally make time to go to therapy? Sometimes I wonder how I have made it this long without going and pouring my heart out to a professional psychologist. What stands in the way is time. I don’t have much of it and if I could somehow find more I have several other things that I could fill the time with. Don’t get me wrong – I do believe that therapy/counseling can be very beneficial. I think that part of me holds back because I would probably end up in a room crying – not talking – then mad that I cried and couldn’t talk. So I avoid it.

A few years ago I lost a very strong supporter of mine. She always made me feel… well, perfect. I could tell her anything and she would listen. If anything was going on she was one of the first people to know. We never went a day without talking to each other. She loved me fiercely and taught me how to love just the same. My Grandma Nancy was much more to me than just a grandmother. She was my friend and my confidant. I have never lost someone that years later I still think of daily. Every time we face a new battle or something amazing has happened, I think if I could just call her. If I could just talk to her – if only heaven had a phone.
Over the last month I have done what I always do, I struggle emotionally and then miss her even more. After the heartbreaking play incident, I thought of her as always. I talked to Matt about how I missed her as we drove to my parent’s for Thanksgiving. After we were there for a while I told my Dad the same. After a few minutes my family handed me a bag… An early Birthday present since mine was the very next day. In that bag there was a frame with an index card with very familiar handwriting….

“Accept what is, let go of what was and have faith in what will be.”

I cannot begin to describe the chills I got when I read this, I immediately new her handwriting. Then I hear my parents’ side of the story. Just a few days before my mom had been watching the boys and my niece. They were piling papers on Bryce as he sat in his chair. They were wild and pushing my Mom’s patience a bit. As she was cleaning up all the paper, she noticed Bryce had one clenched in his fist. She took it and immediately saw my Grandmother’s writing. She couldn’t believe it – no one in our family had seen this card before. She asked Cohen where it came from and he refused to say anything other than – he didn’t do it and put blame on his cousin. My mom told him he wasn’t in trouble, she just wanted to know and he just shook his head. Right away my Mom knew that message was meant for me. After the struggles we were in the midst of, it was clear.

There was one dear friend of my Grandmother’s that knew how special our relationship had been. My Grandmother reached out to her when I was a freshman at college. She worked in the Psychology Department and since (at that time) that was my major she asked her to help me find a job. I wouldn’t know it at the time and my Grandmother didn’t know either but this dear friend worked with her staff to hire me when there wasn’t a position available. I thought of her that day – wanting to share this story with her. I am not sure why other than the fact that she realized our relationship was so special and I wanted to tell her what had happened.

For several years I hadn’t spoken to Leva, both our lives were being complicated by different circumstances. Thanksgiving evening I called my Dad again, I was still in shock over my little framed note and its message. I told Dad on the phone that I wanted to call Leva (as strange as that may be) and share the story with her. At that very moment Leva left a comment on my Facebook which isn’t something that happens frequently. Once again I was stunned and sent her a message asking for her phone number.

We connected a few days later which was emotional – I think – for both of us. We promised to keep in touch and it was such a wonderful feeling when I got off the phone. I know people say that our loved ones never really leave us. That they are watching out for us from up above. I haven’t always believed that everything happens for a reason. My faith isn’t as always strong as it should be. But this….. This was not a coincidence. This was so much more than could be explained.

I honestly believe that my Grandmother knew how much I needed her and I think that she made sure to let me know that even in death, she has never left me. I also believe that she wanted Leva and I to reconnect. It isn’t clear to me why but I know now that there is a reason.

When EXCLUSION makes a Public Appearance

Remember that blog post from August – the last one that I have been able to write because it has been so hard to deal with what we have going on now. In case you missed it and want to catch up Click Here. The school transition has been challenging for Matt and I. It was always a very strong belief that we keep Bryce in the general classroom as much as possible.

As we headed further into the school year it would be obvious that the general classroom participation was almost non-existent. I received zero communication from the regular classroom teacher. A nightly reading log required of all students was never checked for Bryce, but Cohen’s was always checked. Actually Cohen’s log would be graded, highlighted and marked with a sticker each time. The teacher also made sure she pointed out if we missed a night of reading. Bryce’s has never been checked. Each student also has a behavior sheet, Bryce never did. Cohen’s folder would always come home with items he completed during that day, centers he did that week…. A new library book each week… Bryce never brought home anything – for two weeks he didn’t have a library book. We had brought this up in a Parent/Teacher Conference and the ”Resource” teacher took each concern and made changes. She was the only one.

Outside of when Bryce is with the “Resource” teacher, I receive zero communication. I do not know what he does in the general classroom – if he does anything at all. I can tell you that there were at least two classroom parties that Bryce was not part of. So when we got an email saying there would be a school play; that all of Kindergarten would perform on Grandparent’s Day I had many reservations. It would be a “speaking play” where each child would be given a line to memorize. No child would be speaking alone but instead in small groups. Matt and I talked about whether they would actually have a part in the play for Bryce. I specifically told Matt that if Bryce doesn’t get something sent home when Cohen does I was going to make a call. So the day I opened their folder and they both had something for the play, I was pleasantly surprised. I checked Cohen’s first – he was to memorize a line that was three words long – whew… Not so hard. We can handle that.

Next I opened Bryce’s folder, he had a line to memorize that was at very least 7 plus words.

Let me pause right there…………………………

If you don’t know Bryce you wouldn’t know why this would be a problem. Bryce is nonverbal. Bryce does not speak. Anyone that knows Bryce – would know this about him.

I looked in his Communication log to see if I had any note from the teacher but there was nothing. Nothing else except the instruction to “help your child memorize this at home.” I honestly couldn’t believe that no thought had been given to this in the least. Matt and I decided to make it work. We had a recordable switch that we would use so that Bryce could still participate. Please note that no one at school knew that we had this at home.

I wasn’t thrilled about this option – Matt would have to speak the line but then once Bryce hit it there would be a man’s voice that would blast out. But we went with it because we didn’t know what else to do. We sent that switch to school so that he could practice with his peers when they rehearsed at school. However, it would become clear very quick that Bryce was not participating in the rehearsals. Cohen came home complaining about the play; he was tired of practicing and he didn’t want to practice anymore. He said if Bryce doesn’t have to then why should he. I was furious.

The very next day I called the Resource teacher to ask about Bryce’s participation in the play rehearsals, which she couldn’t speak to because she had not been the one to attend with him. Instead a para-educator had been with him. I also brought up other concerns (stated above) that we had moved past but this was all starting to be too much. She assured me she would find out if he was practicing and would also address my other concerns in regard to the general classroom participation. This conversation took place on Thursday before the play scheduled for Tuesday of the following week.

Then comes the big day – Grandparent’s Day and the day of the big play…. Both Grandma’s got to attend and updated me on how it went. Cohen did great! He and three other boys screamed their line. I was shocked because Cohen can be backward especially in front of a crowd. A bit later in the play was Bryce’s turn. An aide pushed him on stage and had his button in her hand. There were three other kids on stage with Bryce. Then comes the big moment….. See the picture below.

Do you see what is wrong with this picture? Bryce is looking at the button that is being placed in front of the other student. Do you see Bryce raising his arm? Let it sink in for just a moment.

It was very obvious that this was intentional; that this was planned, the child hitting the button could speak and the child in the wheelchair cannot. So what explanation could there be for this to have happened. Knowing how my conversation went with school just days before, my Mom called to let me know what happened. I was devastated. I was heartbroken. I was furious. My sweet Bryce had a moment stolen from him (without a decision or choice) and for his very first play. I absolutely could not believe it, especially after the conversation I had just had stating that I was upset he wasn’t practicing.

After having several conversations with the members of the school staff, I learned that a decision was made to not present the button to Bryce since he was “inconsistent” at practice. I was informed that they had good intentions and that they did not want to single Bryce out in front of everyone.

Let me make one thing very clear. What they did to Bryce that day is in no way different than a verbal child getting stage fright every other practice, sometimes remembering his line and sometimes not. Then choosing to have that child not participate – removing the opportunity for that child because he didn’t practice well…. This is not Broadway – this is not up for any award or prize. This was a Kindergarten play that no matter what any child did would be just as cute if every line was perfect or if you couldn’t understand anything that they said. I am pretty sure that the audience full of Grandparents would have been happy with either result. Where was that one person that stood up and said that this is NOT okay? I cannot believe that not one person stood up for him…. or at very least say that the parents should be part of this decision.

I was told in one of my conversations that “they” thought I would be happy that Bryce was being included like all other students. Then I was asked what I would have like to see happen. To address both – Bryce was involved in the only way that he could NOT participate. Even when his parents came up with a plan to make it work; a plan that everyone seemed fine with… he was still shunned. Bryce should have been given the opportunity to press the button and if he chose not to hit it then he was at very least given an opportunity. It would have been his decision and no one would have been upset if he chose not hit it.

I would have like to have seen a bit of consideration. Consideration of the fact that Bryce is non-verbal and the only way to participate was to speak a line. He could have rang a bell as the play started to get everyone’s attention. He could have held up a sign with a line written on it. There was absolutely ZERO consideration or thought put into this. I am appalled at the entire situation. To know that this is not the one and only problem we have had (but this one sure takes the cake) and we have only made it half way through Kindergarten makes me sick. There is absolutely nothing that can change this now and we need to accept it and move on. But I make one promise… we will make sure this doesn’t happen to him or any other child ever again.

All we ever wanted was for Bryce to be included. We do our very best to include him any way that we can. When it came to this play we were determined to make it work so that he had his little part in it. I still cannot believe that we had to transfer to this school because it was this place that would provide the least restrictive environment for him…. We couldn’t have him any more restricted than he is currently. Next year we will leave that school, my boys will no longer be part of that school and we will go back home to where he was accepted for two years. Back to the school where many of the staff became like family, where they never lacked in the department of communication. I was told that a handicap child (specifically one in a wheelchair) has never completed elementary school at Grants Lick. I think it is time to pave a way to change that. What better person for the job than my Bryce Man!



in•clude
verb \in-ˈklüd\
: to have (someone or something) as part of a group or total : to contain (someone or something) in a group or as a part of something
: to make (someone or something) a part of something

ex•clude
verb \iks-ˈklüd\
: to prevent (someone) from doing something or being a part of a group
: to leave out (something) : to not include (something)
: to think that (something, such as a possibility) is not worth attention

Source
http://www.merriam-webster.com/dictionary/include

On Kindergarten, Inclusion and 2014

On Wednesday the boys will be starting Kindergarten. In many ways it is so hard to believe that they are going to school. I was upset when we sent them off to Preschool but Kindergarten has been different for me. There could be a couple of different factors for this.

Maybe because Bryce was turned away from our home school, maybe because that home school waited to tell us 3 days before Kindergarten registration that Bryce would have other plans.

We had done Preschool for two years and never once was it brought to my attention that BOTH boys wouldn’t continue on at THAT school. You can only imagine how “upsetting” it was to have a meeting 3 days before Kindergarten registration informing me that Bryce would need to switch schools… OH – and Cohen would not have the option of changing schools with him. Soak it in for a minute. This was the conversation that I had just this past February 2014….. 2014! I won’t even go into the horrible comments that were made during that meeting. I am sure this person was not malicious but should learn how to approach situations differently. The example of some doctors and their bad bedside manners could really be applied to this meeting.

I cannot believe that any child would be turned away from any school --- in 2014! I guess I remain naïve in some areas because I would have never dreamed that this would have happened. I was so upset that I did contact the State Board of Education and was reassured that I could fight and win this. I was encouraged though to attend the school that Bryce was being referred to just so that I do my due diligence. So that is what we did….and admittedly……. I loved the set up. Matt and I walked in to observe a general Kindergarten classroom and the students were working on writing – that is when it hit me. As much as I was fighting for Bryce to be in the general classroom, there would be times that would be best that he is pulled out to work on other activities (such as his communication device when it comes). I would not want to force Bryce to sit in that classroom for an activity that he cannot participate in. I wouldn’t force him to sit and watch when he cannot do what all the other children in the class can do.

Ultimately we did make the choice to go with this school – it has always been about what is best for Bryce and NOT about proving a point. With that decision, we still had another problem…. I was NOT going to allow the boys to be in separate schools. After all the conversations we have had with Cohen….different is different… but different is ok…. BUT you are so different you cannot attend the same class let alone the same school! That was simply not an option. Fortunately we were allowed to apply for a “waiver” which they amended just this school year. The waiver would allow for Cohen to also attend the school since his sibling was “referred.”

I was very hesitant about the entire situation. We purposely did preschool at the home school to ensure an easy transition. Our home is minutes away from that school, but now our drive will be 25 minutes one way.

The boys did go to Jumpstart last Friday and both had a blast. We learned once we picked them up that they met some friends, had Teddy Grahams and toured the school bus. The awesome part was the resource teacher made sure Bryce also had Teddy Grahams and toured the bus. It wasn't a handicap bus so she took him out of his chair and he sat with her for a little bus ride around the parking lot. I was so happy to hear that without a lecture of inclusion and Bryce, she had done this. I already love her for that!

Later that day I had a meeting with the some of the staff to inform them on some of Bryce’s history, daily challenges and what we expect to happen with him in the coming months. I won't bore you with the details but I was more than happy with our discussion. When I left that building my entire view completely changed. I do believe we did the right thing and we will move on from what happened back in February. I just want people to know that this sort of thing still happens. I just thought our nation has come further along than that – but I have been proved wrong.

Wednesday I will send my two little miracles to Kindergarten knowing that this new school is gaining two very awesome little men. I appreciate the staff I met with on Friday for making us feel more than welcome. I can now say that I am excited for this Kindergarten Year! I couldn’t have said that a few months ago. So I will drop them off and smile like one very proud Momma as they walk through those big doors probably blinding them with camera flashes.

SDR - One Year Later *** and a Quarter Auction Event!

It is hard to imagine that we are coming up on the one year anniversary of Bryce’s SDR. It was July 9th of last year when we were in St. Louis nervous and scared for surgery number 13. Most other families who have had this surgery celebrate the anniversary with a party. I wondered if we would end up doing the same. But if I am being honest – I really don’t care to celebrate the surgery. If I am being honest I would say that I am not sure how much the surgery really helped Bryce. If I am being honest I would say that I envy others who had more success with this surgery. I had hoped that SDR would have more of a positive impact on Bryce and his physical abilities. Don’t get me wrong – I know that Bryce was physically “more involved” than some of the other children. I never expected him to be able to walk within a year like some have done. Deep down I really do believe SDR did help Bryce (just not to the extent that we thought it would). It is hard to say what changes might have happened over the past year had Bryce not had the surgery. Relieving the spasticity was successful – therefore making the surgery a success. Our success has just been defined differently.

Bryce still has very high tone in his legs and one leg is beginning to really turn in at the knee. Tone is not the same as spasticity and has to be addressed in a different way. Now we have to make the decision on addressing the tone. There is a surgical procedure that can be done to help lengthen the muscles as Bryce’s bones have grown at a faster rate that his muscles. The ortho surgeon would go in and make “x” like incisions in the muscles. This will allow for the muscle to be stretched. As you can imagine it is a painful process once the stretching begins…. But the surgery itself is less invasive than SDR.

So this is where I once again struggle. I am trying to be realistic – Bryce probably will not walk and if he ever could it would be in very limited environments. I had gotten to a point of acceptance – I had gotten excited to talk about power wheelchair training and all the places he could go with power-wheels. Then St. Louis calls to check on Bryce and they really do feel like we are in this “Window of opportunity” since he is only 5 years old. They feel we should move forward to maximize the full benefit of having the SDR.

So – for another round of emotions – I had mentally gotten myself to a place of acceptance. I am right back at being confused about what to do. I can tell you that there is NO ONE OUT THERE that wants to see Bryce make physical gains more than Matt and I. There is NO WAY we would ever want to hold him back from that chance of making those physical gains. I don’t want to seem as if I have given up – this is something WE would NEVER do. EVER!! I am just trying to find that balance of accepting and moving on. It is hard for me to put him through so much for the “what-if’s”. I wish that he was mature enough to consider the option and let us know what he would want. I would have to think though that he would want us to give him every chance. It is just so hard when you are making the decisions but he is the one having to go through all the pain and all the rehab. I know one thing for sure – I do not want to be asking myself in 5 years “what if we had just tried it.”

*********************************************************************

The W.E. Believe Network will be hosting a Quarter Auction tonight and have chosen Bryce to be the benefit recipient of tonight's event. It continues to amaze me the amount of love and support that our family has received. From people that know us and those who don't - I thank each and every one of you. We have had an army of people behind us during this journey and many of those people have been there since the beginning. I am excited that tonight I get to see many of those people!

For the First Time

The boys had never been to the ocean, they had never seen the waves or the sand. (What better time to let them experience the beach than for their 5th Birthday?) Matt and I were standing with them at the edge right where the waves break. It was early evening and there the four of us stood. The boys' faces were filled with excitement feeling the coolness of the water and the sand being pulled all around their feet as the waves rolled back in. I closed my eyes for just a moment – time seemed to stop. I had been to the ocean many times before, but I was feeling it all for the first time years later. After all that we had been through and knowing all that we would face, in that moment we were a family of four loving every minute together. We were thousands of miles from home on our first family vacation celebrating two little miracles turning 5 years old. I once thought (and even said) that we would always be back and forth to Children's. It is hard to imagine just how far each one of us has come.

One of the greatest lessons I have learned while on this journey, is that the little things really are the big things. I have learned that we take way too much for granted. Our lives are too busy to appreciate the beauty around us.  The first three years we had the boys I was so focused on what our future might hold, what should we do, which therapy would be best… You can’t imagine where my mind would take me – it wasn’t the happiest of places to be. Then one day I just stopped, I am not sure why or when it happened but suddenly I let it go. The movie, Frozen wasn’t around at that time so I can’t contribute it to that song.

It was a huge step for me as I have always been such a worrier. I cannot say that I still don’t have days that I drift to those thoughts. But I can honestly say now that I do not let myself “go there” as often. Life is so much better when actually start allowing ourselves to enjoy it. We have fun – We play – We dance –We act silly. As I have gotten older I realize more and more that this isn’t something that most can say. Maybe you have been to the ocean with the sand between your toes – but have you ever really felt it? Have you ever stood outside and just closed your eyes to breathe all of it in?

I look at these two precious boys and I know that we are so blessed to have each other. For a very long time there was a lot of…  Why him? Why me? Why us? This is not fair? After all we had been through. The days and days of hospital bed rest. The complications, one problem after another – from sepsis to contractions to all of the unimaginable tests; when we did all that we could. WHY?

 It would be a lie to say that my mind never goes there anymore. It would be so easy to be bitter, lay blame and throw my hands up. But then I see these two perfect faces that make me a Mom and I know that it was all so worth it. You see that million dollar smile and you know that you have been so blessed. That smile is not forced - it is not fake. That smile is nothing but complete happiness… and after all – that is all we have ever wanted. Who could have known that we would end up so happy in return and so changed in a way that can make you feel untouchable. Our definition of happy has truly taken on a whole new meaning. My life is forever changed and as hard as it gets at times, I know that I have been given a great gift (more than one actually). I can tell now that all that I have been through all throughout my life was molding me for being a Mom to Cohen and Bryce. There is absolutely nothing in this world that I wouldn’t do for them. Absolutely Nothing! And their Daddy - he would do absolutely anything for them too! We are all so very lucky!

Parenting Guilt

There have been numerous times that I allow parenting guilt to take over. No one ever knows the right "things" to do. You just evaluate the options and decide what might be best. Truth is- you don't always know what that best is. We have been in our fair share of decision-making and we just hope and pray that we have chosen the right thing- the right path. When Bryce was three days old we were given the choice to let him "go" and we always knew we made the right decision. At the same time I wondered what we had chosen for Bryce. Then again we knew all along that wasn't a choice at all.  A few months later we were given another choice. 

Bryce's first shunt placement surgery went terribly wrong. The surgery itself was successful but when they were closing they removed the ioband which ripped his premmie skin exposing the shunt. A few days later the neurosurgeon let us decide what to do. The option was to move the shunt away from that area or to externalize him. By externalizing it would mean the shunt tubes coming out of his head so that if infection set in the hardware would not be directly infected. However if the shunt was moved and infection would appear then we would have no choice but to externalize (causing two more additional surgeries). We decided to take the chance and try to limit the number if surgeries. A few weeks later infection did set in. We made the wrong choice. We created the need for the third surgery. I can't tell you how heartbreaking that was for us. 

We did the same thing with Bryce's SDR- not knowing for sure what might happen. Unfortunately there isn't a manual out there to help guide you. There have been so many decisions that we have made and we just hope and pray that they have been the right ones.

Therapies for example... We have chosen our fair share but I would be lying if I said that I don't look back and wonder if things would have been better had we taken a different approach. Parenting guilt at its finest. 

We have also made a list of things that we would do- check them off as we go.

This list sits on my counter. The problem with it is that it cannot come up and slap you in the face so that you remember that it is there. Then one day you stare at it. There goes the parenting guilt again.

We go through phases knowing ( at least hoping) we are doing the best that we can. Many people praise us for the way we are with Bryce. Truth is (most people) would do whatever they can for their kids. Most people go through some form of parenting guilt. It's hard and it takes constant work.

I just hope and pray that we are doing all that we can for Bryce but that parenting guilt can strike at any moment. As much as I try to not to let it in it always finds its way back.

You really have to hear this! Another insurance company rant that will blow you away.

I will apologize in advance as this will be a venting session.

Right before the New Year I called in Bryce's monthly prescriptions as I have done every month for years. Once I went to the pharmacy to pick them up I was told that his Prevacid would need a PA (Prior Authorization) in order to be able to get the refill. As a side note this is for his GERD (gastroesphageal reflux). Reflux for Bryce is not like indigestion or heartburn for me. It can cause many other gastroenterologic complications and even hospitalization.

I was frustrated but it wasn't a huge deal because we still had a few tablets left and I would call the doctor to get it straightened out (which I did the following day). The doctor called the pharmacy and faxed in the required paperwork to my Insurance company. I go to the pharmacy yet again and they still do not have what they need to fill the order. I leave much more frustrated because at this point we have no more Prevacid for Bryce. So on the third day I call the insurance company again and ask for a status and they inform me they have not received the information from my doctor (the doctor that informed me the day before that they sent everything to them via fax). Hope you are still following...

So (since I do work full time) I decided to try back a little later. The doctor's office phoned me before I had a chance to call them back. The nurse on the phone said she had been rounds with the agent she spoke to with my insurance company. Basically - the medical director decided they would like for Bryce to "try a new prescription." They also suggested that he trial Nexium. This is where I completely lose my mind. As most people know Bryce is a very complex little boy. One thing is for sure - we DO NOT mess with something that is working for him. Years ago Bryce's GERD was out of control and we had to trial many things before we found that Prevacid is what he needed. He cannot take Prevacid that is on the shelf at your local Walgreens because he cannot safely swallow the capsule. He is prescribed a salutab that dissolves in his mouth and it has worked very effectively. In fact, he did go through a small spell a few months back which required us to increase this dosage. After a day or two - it was back under control. So you can imagine my frustration with the denial of this refill.

I (of course) call the insurance company and speak to a supervisor. Apparently starting this year they have decided that this prescription would need a Prior Authorization before being covered. They also denied this PA even though Bryce has been on this for years. I asked and they confirmed that we were not notified in any way. Apparently they do not have to inform you of this change. I went on to explain Bryce's history - I explained that he had already started tapering off on eating and he had spent the past night in bed with me and Matt refluxing all night long. The supervisor informed me that the only thing I could do was to file and emergency appeal that would take 72 hours to review. Keep in mind Bryce is already 5 doses behind.

I have many issues with this.
My first issue is that he is a medically complex child and that can be seen by opening his file. The insurance companies DO NOT HAVE the right to determine if my son needs a specific medication or not. That determination is up to the medical professionals that treat him daily.
My second issue is that if such a policy change occurs regarding a specific medication, then that company should be required to inform any patient that is currently taking this medication. There should be at least a 30 day notice of the change in a situation such as this. This allows the parent or guardian to take the necessary steps BEFORE the medication needs to be refilled. This would eliminate the time the patient must go without that medication. Where is the right of the patient?

My third issue is that my son’s PA was denied and then we have to go through an appeal process. The emergency appeal would take 72 hours which is just added time where he is not able to receive his medication. Since there was no notification sent to the patient/guardian then there should be policy in place to allow a remaining refill so that the patient does not go through a prolonged period without the medication that they need daily.

Ultimately our absolutely awesome Dr. Chris Bolling (Pediatric Associates) did write an emergency appeal on behalf of Bryce. The letter he wrote was amazing. He did state that "abrupt discontinuation of this singularly effective regimen is medially reckless." Have I mentioned that this man has always fought for Bryce as much as I have. We continue to await the decision of the insurance company. I did go to the pharmacy to check on privately paying for his meds and it would cost me over $600.00. I certainly cannot afford that so I have purchased 6 pills that cost over $50 to get us through a couple of day. He takes two pills daily. I have also written an official complaints and submitted them - but there has to be change! I am absolutely blown away with this and as a parent your hands are tied but I promise to make several calls a day and be as nagging as possible until I get this approved. I will also see if there are any possible steps I can take to ensure that they change their procedures.

Bring On 2014!

2013 has been good to us. The boys have grown and matured so much over the past year. Cohen has done excellent in preschool and has become quite a little leader according to his teacher. He loves waking up each day and going to school. He has been so different with Bryce and has really started encouraging his brother. He has asked many questions as well which shows me he realizes more and more that Bryce is different. I just really hope that we have provided the right answers. We try to be honest with Cohen but it is hard when you don't know when these questions will come. Cohen desperately wants Bryce to talk as do the rest of us. I hope this new communication device (that should be coming soon) helps open that communication barrier.

Bryce has made it through a major surgery and recovered so quickly. I really had in my mind it would be terrible and truth be told, it was pretty easy for such a big operation. Bryce has made his way off sippy cups and drinking from open cups now. That has been a major milestone! We are sippy cup free in this house now!!! He has been doing an excellent job at potty training as well. I have always been told that the age of 5 is a big age for special needs kids. Age 4 has been huge so if 5 is the "big age" then I absolutely cannot wait to see what is in store. It has been the first year in many that I am really excited for the new year! I just know that many special things will be happening and I am ready to see what they are. We will continue doing what we have been doing with therapy - we might have another surgery that will need to be scheduled for Bryce in June - but we also have many more memories to make!

Happy New Year Everyone - May 2014 be wonderful for everyone!

Post Op in St. Louis

Things have been so busy so updating the blog has hit the back burner but wanted to provide an update on Bryce's post-op appointment with Dr. Park on December 9th. The appointment wasn't good and wasn't bad...it was just an appointment very far away and driving as much as we did in a 30 hour period just wasn't fun.


Dr. Park was very encouraged by the results we were reporting back on Bryce and what all he has been doing. SDR obviously eliminated the spasticity in Bryce's legs which is awesome but we have a few "bad habits" to break Bryce of. Whenever Bryce gets excited he can fire up both his legs and arms. This is called patterning. Basically it was a response that Bryce has developed (because of the spasticity he always had to deal with). Now Bryce has to learn that he can get excited and he doesn't have to respond in this way. After years of developing this habit, it isn't something you can "train" in a short time. It will take time to break this patterning.

One area that Dr. Park was not so happy in was the scissoring the Bryce continues to do when taking steps. Basically, he still takes one leg far across the other when walking. He had modified Bryce's SDR so that they could help eliminate the scissoring, obviously that part of the surgery was not successful. The plan is to give Bryce six months and we are to focus stretching the muscles causing this. He also needs to stand and walk as much as possible. In six months we will send a video to Dr. Park and he will determine (if clear from the video) if Bryce needs more medical intervention to help with this. If it is determined that Bryce still needs help in this area, he will have a surgery to lengthen the abductor muscles to help rid him of scissoring. It should also help with positioning. There are many times (especially at night) that Bryce's legs literally twist around one another and we have to help him "un-twist" them.

There are many Good things happening right now so we won't let this hinder the good we have seen. Bryce is off of a sippy cup and drinking from an open cup. He is about 90% potty trained and some days has zero accidents. He is proud and excited as much as the rest of us are. Bryce's balance and sitting has improved and he is much more vocal and making new sounds every day. It has been a VERY EXCITING time for him and I cannot wait to see what another year might bring for him. Cohen has been a great brother. He has been encouraging Bryce more and more. He points out when Bryce is doing something that he couldn't do (so easily) before.

Cohen truly loves Bryce and has started celebrating his accomplishments more and more. He has also been questioning things a lot more. He has asked why Bryce is different - he has said he cannot wait for Bryce to talk to him. It is so tough to not break down when you hear him saying these things. We are being open and honest with Cohen and I really think doing that has made Cohen feel like he has a very important position being Bryce's brother. He is the sweetest ever - of course (like any child) he has his moments with him, but more and more he has come to understand things and has gotten so much closer to Bryce. We are so completely lucky to have such a great little family. The four of us are so fortunate to have one another and I could NOT be happier. I wanted to take time to Thank each and everyone of you that have read our story, that send texts, messages and emails. All the support you have shown us again over this past year has been amazing. We hope everyone has a very Merry Christmas and a very HAPPY NEW YEAR! Hugs from our family to yours.  

"Judgement Not Allowed"

This past weekend was the 3rd Annual CP Inspires Expo. There was tons of work put into making the event successful but even I didn't realize just how inspiring the day would be. I was able to meet a lot of other parents of special needs children. I met new vendors and caught up with many I already knew. 

That evening there was a performance by Handicap This! I was so moved by their story. Mike Berkson and Tim Wambach share the journey of their friendship. 

There were tears and laughter and somehow they perfected the balance of each. Every person should see them. I was fortunate enough to talk to them after the show. Even more fortunate to talk to Mike's father. To hear the hardships that both Mike and his family shared really hit home. His Dad said some parents step up and some don't. Those that do should never give up hope. We also laughed that once you become a special needs parent you can tell it when one walks into a room. That is such a true statement. 

 I am so honored to say- I pledge to "keep on, keeping on." I will never give up! I encourage everyone to look these two up. You are sure to be inspired. 

Relying on technology for communication

I didn't start questioning speech until I started realizing more and more how smart Bryce is. Of course we always knew he was smart and knew what we said to him but even we don't know how much he "knows." We always steered away from trying a communication device because we felt like it was giving up hope that Bryce would talk one day. That hope will always be there but it was time to explore devices. We did use switches/buttons. We also used some iPad apps but the screen was too unstable for Bryce to use effectively. So it was time to make the next step.We have started a new chapter in what is becoming quite a novel. As I have written about before Bryce is nonverbal but cognitively very age appropriate. We have encouraged him to talk for such a long time. Bryce has said a few words but never consistently.

He has mastered the art of "yes" and "no" with head shakes. We know many other cues as well. For example when he is thirsty, hungry, when he wants to play or when he just wants to watch cartoons. I have to admit for most of his life we focused on the physical part of Bryce. Funny how I started out hoping for him to just mobile in some way. Now, if I had to choose, I would rather him be able to just talk to us. I would love to know what he thinks about.

So this week we had a communication evaluation that I was very excited about. Had this been a year ago I would have cried leading up to this kind of appointment... Probably would have cried during it too. I answered lots of questions and made my own suggestions and ended up trialing the Eye Gaze communication device (pictured) and loved it! It calibrates to Bryce's eyes and then Bryce navigates the system with his eyes. It was amazing! It's hard to believe such technology exists.

The therapist had told Bryce what they were going to show him. She explained she would let him play a farm animal game. She asked him once they were ready if he would find the rooster- it was her favorite. More than 10 minutes had passed once everything was set up and calibrated. She pulled up the animals and he immediately finds the rooster and triggers it to make noise. Then he looked at that therapist ( 1 of 3 in the room) as if to say I found it for you. It was awesome!! The device can be set up to allow Bryce to tell us what he wants. He had it say three times " I want a drink."

The therapist asked me if I thought Bryce would look around the room if she asked him to look for Dad. I said no since Bryce knows he isn't here... He then had the device saying " I want my Dad" over and over. 

It was so exciting to see... And Bryce was so excited. He did great for his first trial. Even more amazing was asking for a drink and asking for his dad! It wasn't a picture of Matt so it was surprising he would know what he was choosing to say. You might call it coincidence but I don't. 

It was bittersweet thinking we - that Bryce- will have to learn such a complex system in order to communicate. We truly take for granted how easy it is to just talk. At the same time, technology today for all the good and bad, will give my sweet boy a way to communicate with people. No longer will he be restricted to communicating with the few people that can read him. We will soon be able to see what all he wants to say. I for one cannot wait! Another insurance battle begins.... I am becoming a pro at this.

Blessing in disguise

As a result of Bryce's three hour seizure in December of last year we were referred to a pulmonologist that specializes in sleep disorders and seizures that occur while sleeping. This year Bryce has had a total of three sleep studies. After the first one I swore that I would never put him through that again. I had said it would have to be a life or death type situation before I would even consider it. You would think by now I would know to watch what I say.


The first sleep study showed that (in the 3.5 hours that Bryce actually slept) he had seven major events. So seven different times Bryce stopped breathing for an average of 30 seconds with his oxygen saturation dropping into the low 70% range. Of course this was very concerning to all of us. Bryce also had blood work done showing he was deficient in iron and ferritin which led to another daily medication. Iron and ferritin contribute to sleep so adding the supplement was necessary. Bryce was also diagnosed with central apnea. Central apnea is very different from sleep apnea in that the brain doesn't tell his body that he needs to breathe. There is no "cure" for this diagnosis but there were treatment options. It was thought as a result of the central apnea and the significant events that Bryce has it could have led to the seizures that he has had in the past while sleeping. Oxygen therapy is often used but we would need another sleep study to see what oxygen level would be needed. Therefore we were on for sleep study #2.

After the second sleep study they found that Bryce needed 1/8th of a liter while sleeping. With that level of oxygen Bryce had three significant events but if they increased up the oxygen then it was too much. By having too much oxygen it caused his CO2 level to increase which is like poisonous breathing. So 1/8th it was and we were to repeat the sleep study in another 3 months. Almost every night Bryce would take the nasal cannula off. We have a video monitor where we could see him pulling at it. Many times it ended up in his mouth and he would chew on it or it would be across his eyes or forehead. Many occasions I would go in and fix it and threaten that if I had to come in there again he would be in big trouble. He would still pull it off, look right into the camera and start belly laughing. The 4 year old attitude just shining through (but I have to say I love it). Most mornings we would go in and the oxygen would be off and he would be completely wrapped in all the tubing. I am not kidding when I say that we would go back at least 5 times or more to put the cannula back on. Cohen even helped us out - he had his flashlight that he would shine right in Bryce's face. He would come out and announce that Bryce had once again taken off the oxygen. He is such the little helper.

Once the 3rd sleep study came around (and I swear it was the worse one yet) we were ready just to get it over with. The point of this sleep study was to see if Bryce was doing okay with 1/8th or if it needs to be increased. We went through the sleep study and I asked the following morning where the oxygen level ended up. The RT informed me that it was never turned on. I was actually furious. The point of the study was to see what he looked like at his current level. I left angry - I felt it was a waste of time and now we would need to do it again... There was NO WAY I would have him do another one this year. So once the time came to meet with the doctor to discuss results I went in aggravated. I told her that I couldn't understand where the communication was missed. She agreed she had no idea where they would have gotten instruction to not turn on the O2.



Then she went on to tell me about the results.... Bryce had ZERO spells - he didn't stop breathing - his oxygen saturation stayed normal the entire night!!! I was in shock. Talk about being completely surprised. So surprised that it took a while to register what she was saying. She determined that Bryce no longer needed oxygen at night. So for almost a week now he has been sleeping much better (with the exception of a few nights). I am so thankful (for once) that an error ended up being a good thing this time. I just hope that I never go through what I woke up to on December 15th last year.

2nd Annual World CP Day!

I never imagined that I would become a mother of twins boys. I also never imagined that I would be a mother to a special needs child. In the beginning of our journey I was very naive in thinking that as long as the boys survived delivery then we would all be fine. I had read books and heard stories about twin pregnancies and some of the difficulties that some women experience during pregnancy. I also read stories about twins born prematurely having many long lasting health issues. All I was focused on was just staying pregnant. I was admitted to Good Sam at 20 weeks pregnant after starting preterm labor. What I thought would be a night or two stay turned into 58 days in that hospital. The boys and I went through so much... Amniostesis, amnioreduction, almost daily contractions, blood poisoning from an IV line.... On the 54th day I went into true labor - after being pumped full of meds to stop my contractions I quickly dilated to 9cm and my water broke. That day was terrifying - we all knew how small the boys were. After three days Bryce had a bilateral Grade IV brain bleed and we almost lost him. As a result of that brain bleed he has cerebral palsy. The doctors had met with us and explained that Bryce would be a vegetable, not able to eat or drink on his own. They told us we needed to consider his quality of life and make a decision on how to proceed. It was crushing news and we were completely shocked to be asked to consider stopping his treatment. This was not a dog - this was a human being - this was our SON. It was in that moment that I realized that we would need to fight for him - we would need to believe in him.

We still continue fighting for Bryce. We still continue believing in him. Bryce has been writing his own story from the very beginning. I look at him and I am so amazed. He has been through so much and yet he always smiles. Bryce has been such an inspiration to so many people. Today is the second annual World CP Day! In honor of all individuals with CP let's break the barrier for all people with special needs. Let's see them first as a person instead of a person with a disability. Let us focus on what they can do and less on what they can't.

There will be a CP Inspires Expo at Kings Island this year. The event is for parents/caregivers/absolutely EVERYONE. Come on out and be inspired. We are also taking nominations - you can nominate someone with cerebral palsy that has touched your life and INSPIRED YOU.

For additional information please visit www.cpinspiresfoundation.org. I hope to see you there!

3rd Annual CP Inspires Expo

This year I was asked to be on the CP Inspires Foundation Committee to help in planning the 3rd Annual CP Inspires Expo. I was also asked if they could use Bryce's BELIEVE shirts for the event - what an honor! I am very excited about this event and hope to see lots of you there! Come out and BE INSPIRED!

6 weeks post op

The world of physical therapy is far from new to us. Bryce started therapy when he was just 6 months old and barely 7 pounds. In the four years of his life he learned ways of moving his arms and legs. Due to his high muscle tone his movements were not functional. Since having SDR Bryce has had to learn ways to break the "patterning" that he became accustomed to. This is still an every day battle for him. Bryce is still weak in many ways but we are starting to see that he is also getting stronger each day. 

Since having SDR just 6 weeks ago Bryce has completed 80 hours of PT outside of what we do at home. He has learned the route to each place we go... At first he would cry when we pulled in the parking lot... Now he cries as we get off the exit. Funny he has such great sense of direction when his Mommy has absolutely none. The tears are hard but he always ends up enjoying most of each session. He does hard work with great determination that has been so inspiring to see. 

Bryce has been doing traditional PT, conductive education, spider therapy and aquatics. In October we will add hippo therapy (horseback riding) to the mix. Sometimes I feel like we are spending all of our time on the road... And we kind of are.

This week we have been getting great reports- Bryce is getting much stronger in his legs and his head control is improving. He has been doing awesome with potty training too! His therapist was also excited to see him with more controlled and purposeful movements. Bryce is also nonverbal but his sounds have been changing and he tries so much harder to talk. 

We have a long road ahead but I can't wait to see where that road will lead Bryce - and us! So exciting that although slow we get to see all of these improvements happen right before our eyes! In the coming weeks we keep up and increase the PT, get casted for new night splints and day braces and yet another sleep study. We will also be adding in preschool! Did I mention how tired we all are? 

A Must See This Summer

Two nights ago we were outside enjoying the weather and a very unexpected moment occurred. Funny how when we start letting little negative thoughts enter our mind - Bryce reminds us that HE IS IN CONTROL. The video speaks for itself!

http://youtu.be/-jjXBJc1o9I

I just knew...

I had prepared for a very tough summer. Knowing Bryce would have surgery and afterward would be in so much pain. Then all the therapy... Yeah that would be tough too. He hates therapy so that wouldn't be fun at all. We knew that we wouldn't get to do much this summer. We were prepared to not have much fun.

I have to admit- I had it so wrong.... And sometimes I love being wrong! This summer has been awesome, amazing, life changing. It hasn't been all fun and games but close to it! It is one that I will never ever forget!