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.

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.