There is this man...

I am a very lucky woman.

Almost 11 years ago now, I fell in love with this man that I met while working at Channel 12. We had worked together for about a year before we had our first "unofficial" date.  I knew immediately that I could marry him. We had fun together, we laughed all the time, we traveled seeing concerts all over the place, we just enjoyed being together. Five years of dating and we got married, we had the perfect Wedding Day. I am not just saying it because it was ours. It was beautiful - my Grandmother made the comment to me that it looked like a Mafia daughter's wedding. It was an absolutely perfect outdoor wedding. The place was perfect, the decorations were perfect, the weather was perfect and the company was perfect.

We were very good at being newly-weds. Not a lot changed - we still had fun and always laughed. Once we decided to have a family and I got pregnant - we had found out the day after my birthday. We were so excited. Matt of course went to the first appointment where I was sent in for a "quick scan." It was immediately obvious that there were two - we were on Cloud 9. I never dreamed that there could be problems - our life was perfect. It wasn't long until we knew that the pregnancy would be difficult. Everyone knows that story. We were tried many times as a couple over the first year of the boys lives. I am convinced that the only reason why we did make it through was because we were so strong together.

Matt has always been the Best Dad - the Perfect Dad. He truly amazes me on how he is with the boys. He always is the one that makes sure that Bryce gets to experience what other kids do.

He is Bryce's legs - Running him around in the yard and playing kick ball. I honestly do not know how he can do this as long as he does. Bryce has gotten heavier and older so it isn't the easiest by any means.

He is Bryce's arms - Helping him play with his toys, play basketball and t-ball. Really he does everything with him -- and of course Cohen.

He is Bryce's Hero - I am sure of it - they share a bond that no one can touch. They love sports and they love to play.

Matt is amazing with these boys and I know that NO OTHER Man would quite match up. We are all three very lucky to have him. I hope my boys turn out to be like their Daddy - These three men make me the happiest woman in the world! And they are my world!

When You Believe

When I was told by a Perinatologist at Good Samaritan Hospital that I would be lucky to leave the hospital with two babies, We BELIEVED that we would bring BOTH of our boys home.

When Bryce was three days old and the Neonatologist came to my room at 3AM to tell me that there was nothing else that could be done for Bryce, that he was dying..... We BELIEVED that he would fight and LIVE.

When we were told when Bryce was four days old that he would never eat or breathe on his own; that we should be thinking about his quality of life.... We BELIEVED that we could give him a happy life.

I didn't write this but today and in the coming days - I am finding comfort in this quote:

Good things come to those who Believe,
Better things come to those who are Patient and
the best Things come to those who
Don't Give Up.

We BELIEVE in Bryce.... and I hope that he knows how many other people believe in him too.

For The Love of Sports

I remember back when the boys were around one year old, my mom was in the car with me and we were headed back to my house. I distinctly remember crying telling my Mom that I just hoped that Bryce would never be interested in sports. I never wanted him to love sports knowing that he would probably never get to play.

God must have been laughing at me that day. I am pretty sure there is no other kid that loves sports quite to the extent that Bryce does. He absolutely LOVES watching sports - any sport. From football to basketball to golf and tennis - this kid LOVES all sports. He gets so into watching them on T.V. that it is next to impossible to hold him. After any game (if you have held him) you are sure to feel like you got an upper body work out. The kids absolutely LOVES it.

When I first realized Bryce's love for all things sports - I was mad. Really? Why would God let this little boy love sports knowing that he will probably never get to play? Over time I changed my view... Just because I think that he would be upset or unhappy because he cannot play doesn't mean that is how Bryce views it. What if he truly is just happy to be a fan? To be able to sit back and watch all of the action in front of him... What I believe defines happiness for Bryce really might not be his definition of happy. Sometimes you have to adjust the way you view things - spin the positive right?

So since surgery has been creeping up on us quickly, we have been trying to make as many memories as possible. We took the boys to their very first Cincinnati Reds baseball game. I didn't think that Bryce would get much out of the game. Being in the stadium is fun and exciting, but I didn't think he would be able to see much of the action. It would be very different than watching the T.V. with all the action up close. I couldn't have been more wrong. Bryce had the time of his life. He LOVED being there and he got to watch the game. He was yelling, laughing, trying to leap off our laps - he was loving it.

Cohen loved it but for different reasons. He loved the huge bag of popcorn and the fact he got to drink some Coke.... He loved the kids play area that we had to keep going back to the entire night. Both boys loved it and both boys experienced the night very differently but they both had an amazing time. ...and so did we.

At one point Matt looked at me and said, "This is Father's Day." It was a night to remember and one we will never forget.

Pediatric CT scans lead to higher chance of future cancers

On Tuesday, NBC Nightly News had a story on Pediatric CT Scans. Researchers estimate that out of four millions scans performed each year, more than 4,800 children could develop future cancers as a direct result of this radiation exposure.

Here is the link to the video if you are interested:
http://www.nbcnews.com/video/nightly-news/52162172/#52162172

Bryce has two shunts that could malfunction at any given time. In fact, in his first 6 months of life he had 11 surgeries related to shunt(s) malfunction. One way to see if a shunt malfunction is happening is by seeing what the symptoms are in your child. Sadly though - some of the symptoms he could show could also be signs of many other things: cold, virus, seizure, etc. The symptoms include: irritability, vomiting, sleepiness, headaches, personality changes. The other way (the fastest and most reliable way) is by doing a CT Scan of his brain to see if pressure is building, if his ventricles are enlarged or no longer stable. Many doctors go to a CT scan because in minutes you have that information. The other option would be an MRI, however for a four year old to lay still long enough for an MRI would be nearly impossible. So most times Bryce has to be put under local anesthesia in order to complete an MRI. The MRI also takes much longer to complete than the CT scan.

Bryce has literally had hundreds of CT scans in his four years of life. I would probably be shocked by the actual number of scans that he has been through. Of course we have always known or been cautioned by exposure to radiation but when we have been in an emergency situation - I am the first to ask when he will have his CT scan done.

Hopefully in the future there will be another way of getting the information you need, the pictures of the brain in another way. Sometimes though, when you are in that moment, a CT scan is the only option you have. We have been there numerous times and I am sure will be there many times more. The results of the study are very concerning but sometimes there just isn't a choice.

Four Weeks Away and Sleep Study Results

In four short weeks Bryce will be having SDR. I can't believe how quickly time has been passing. We have been busy making memories and enjoying the little bit of summer that we can enjoy before his operation. We plan on doing as much as we can before we start the trip to St. Louis and back home again.

Bryce has been on the medication Baclofen since he was a baby. Baclofen is an oral medication - muscle relaxer - that helps with his extreme high tone (spasticity). I have never believed that this medication has done much in the way of helping with his tone but then again I had never seen him off of it either.

So starting the first week of June we eliminated one dose of the three times a day medication. This week we eliminated the second dose and by next week he should be completely weaned off the medication. The reasoning behind the wean is that stopping it abruptly would be a shock to his central nervous system. During this process Bryce has really tapered off in his eating which is kind of a big deal since he doesn't have a lot of spare weight. In the past when he stopped eating full meals it has usually been a result of constipation or sickness coming on. Another kind of strange thing that has been going on is that Bryce will have moments of crying (tears and all) and then goes into a hysterical laugh. It is kind of a funny sight but very odd. He hasn't just done this one or twice but he has been doing this off and on. So I do have a call in to the CP Doc to see if this should be considered "normal" with weaning this medication.

Bryce must be 3 weeks Baclofen free before surgery. I am hoping this is one med that we never have to start back on. He would be on 3 medications a day instead of 4 - which would be GREAT!

UPDATE on #2 Sleep Study Results:
It was found during Bryce's second sleep study that he will need 1/8th liter of oxygen while sleeping. The medical supply company brought out our supplies and trained us on how to use the oxygen, the refill tank and the travel tanks. It really has been going better than I expected.... well except for the times that he continuously pulls it out of his nose and gets completely tangled in all the tubing. Many many times we go in and Bryce has the tubing in his hands, off his face and looks so proud. It is kind of hard to get after him (until we have been in there for the 7+ time.

Cohen - The Protector - is also getting up numerous times and checks on Bryce. He takes his little flashlight up to Bryce's face and checks to make sure he has his tubing in. If not he proudly comes out to announce that Bryce has taken off his oxygen. Such the Helper he is - he really has been making us proud. Except for the times when Bryce really hasn't taken off the oxygen and he just wants to get out of bed, come get us and have us go back to his bedroom. Last night he pulled this trick and we went back, Bryce was fine and he told Matt "Wow Dad - I know what happened, Bryce took his oxygen off and put it back in". I was cracking up listening from the video monitor in the other room.

We have scheduled Sleep Study #3 for September. I HATE sleep studies, but everyone is hoping that his SDR operation will improve his breathing. So we will go through it again if that means we can maybe, just maybe get rid of the oxygen.

I Will Never Be A Van Mom

I have no intention of offending anyone with this post.
Simply stated I just have never liked vans - I always said that I would never be that Mom that drives a van. Funny how things that I have said always come full circle.

So it has been very apparent that our family needs a larger vehicle with more space. By the time you stick two boys in two car seats, wheelchair in the back, special tomato chair (that we use for eating so that Bryce can sit at the same table as the rest of us) and of course our backpack.... There isn't much room left over. We could NEVER take Bryce's wheelchair and his walker in the same vehicle. Going to visit our parents was equivalent to packing for a weekend trip and trying to jam everything into once space. The wheelchair alone is very heavy and trying to fit it in the back of the Escape is like fitting a puzzle piece into a puzzle. It had to be put in exactly right in order to fit.

Here enters the van search.
Did I mention that I don't like vans?

So we had looked at various models online and I decided that (out of all of them) I could maybe like the Toyota Sienna. I had read they would be easy to adapt so that if we need a ramp down the road, we could easily add one.

We went to Dry Ridge Toyota to look around and see what they had. It was very obvious (with Bryce in his wheelchair) that we were looking at the vans and would be interested in the handicap accessibility of them. The man helping us led us inside to the showroom and showed us a van they had on demo. We had no idea but just this year Toyota came out with a Sienna with a "Auto Access Seat." See the link below for a video.

http://www.autoevolution.com/toyota-blog/2013-toyota-sienna-gains-auto-access-seat-video-59580.html


I honestly can't believe that this is the first time something like this has been created for a vehicle. I know a lot of people that could benefit from such a feature so I wanted to share with you. We will pick up our van this weekend.

Even though it was pretty upsetting walking onto the new car lot and over to the van section - I am actually excited about this! This van had all but our name engraved on the side of it. I have a few more days of living on the edge before I become an official member of the Van Mom Club.

On Being Non-Verbal

Many times I have been asked by medical professionals, therapists, school staff and just people in general - Is Bryce non-verbal? How do you communicate with him?
Right now Bryce is non-verbal according to the "text-book" definition.

He does vocalize A LOT! He does shake his head yes and no. We can tell when he is thirsty, hungry and sleepy. We know when he doesn't want to do something or if it was Cohen's turn to pick a show on TV. Bryce let's us know what he wants/needs and of course this took time on our part to learn his queue's. Now that he is getting older, going to school and therapy without us - I do worry that someone else might not pick up on his signs. Even though - he does let you know if you aren't "getting it".

Over the years we have had multiple meetings in our home with various people discussing Bryce and his therapy or school plans. One particular meeting he started to get agitated, I looked down, he was making his "thirsty face" and I had Matt bring me his drink. He drank a ton and then was right back to being happy. The "person" meeting with me asked "Now how did you know he needed a drink." I thought in my mind - I am his Mommy - If I don't know by now how to read my son - then we really would have a problem.

The amazing thing about Bryce -even though non-verbal - he has a way of communicating that is so much more powerful than speaking. His eye contact and facial queue's tell you everything. Anyone that knows Bryce knows that he makes what he is feeling very obvious. Just about 99.8% of the time he has a full on smile. I swear that his face has to hurt by the end of the day. His smile is amazing.

At 3 days old they had called us down to the NICU at 3AM and told us that we were losing Bryce. The doctor had told us "there is nothing else we can do - we are just repeating things that have already failed." We were so devastated, but he did pull through that night. We were given the choice that very next day to stop treating him because he would have no quality of life. Matt and I refused to believe that - we (of course) decided that we would not stop his treatment because our little boy was choosing to fight. We both did pray - Please God just let him be happy. God answered that prayer. There is absolutely no doubt that Bryce is happy.

In the early days I did focus on wishing he could walk one day.... Funny how, as the boys have gotten older, that wish has turned more to - I wish he could talk to me. I wish I could hear his voice. Bryce tries so hard to talk and mimics your mouth movements as best he can. He is trying and that is all I could ever ask for.