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!