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.”

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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.