Bring On 2014!

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

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

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

Post Op in St. Louis

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


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

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

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

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

"Judgement Not Allowed"

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

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

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

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

Relying on technology for communication

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

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

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

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

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

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

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

Blessing in disguise

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


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

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

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



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

2nd Annual World CP Day!

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

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

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

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

3rd Annual CP Inspires Expo

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

6 weeks post op

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

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

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

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

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

A Must See This Summer

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

http://youtu.be/-jjXBJc1o9I

I just knew...

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

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

It is time...

I have always been one to worry. Before the boys became part of our lives I worried about school, work, money... From the time that I was 12 weeks pregnant I worried, with good reason of course. I spent 54 days in the hospital trying to "stay" pregnant and every single day I worried. Then the boys came.... and the worrying continued. Would they make it? How many more surgeries will Bryce need? Will Cohen ever stop being my breath-holder (he always turned himself blue and bought more weeks in the hospital)? Would Bryce ever come home? Would Bryce ever stay home?

Once we got home and started adjusting to life outside of the hospital the worry shifted again...
Will we ever get Bryce to eat? Will he ever walk? Talk? Will he be bullied in school? Will we be able to show Cohen enough love and attention so that he doesn't feel neglected?

This continued -- the worry never went away and about the time you would end a worry over one thing you were shifting it on to the next. This has been my life. I have been totally focused on the "what ifs" and questioning the future that I have not been able to enjoy life. Sure we enjoyed moments and made memories but most of my time has been spent worrying. As a parent - making endless appointments, researching alternative therapies, supplements, being your child's advocate takes up lots of time (especially when you are trying to work 40 hours a week).

Since Bryce has had SDR (and of course the fact that he is doing AWESOME) has helped me to sit back and really take a look at how far we have come. I used to spend my time so focused on what might happen or what the future holds that I wasn't enjoying the NOW. Funny that it has taken me 4 years to change my thinking. Right now is what counts! I honestly am so happy with seeing Bryce feel comfortable that if we gain nothing more from this surgery I would consider it a success. If he would walk, crawl or sit up on his own - that will be a dream come true... but it has been GREAT to see him just sit comfortably in a chair. Simple things really are the big things. I am ready to not focus on what might or might not happen - because I have honestly missed out on a lot of good things happening right now. It was hard getting myself to this point and I am sure there will be times that worry will take over again but for now.... that worry will no longer take control. It is time to sit back - relax and just make great memories.

Every kid deserves a bike

Last November we were celebrating my brother-in-law's 30th birthday. While we were there I talked about wanting to get Bryce a bike. We knew that there would be no way of getting it for Christmas - you see a special needs bike costs just under $5k. I had hoped that we could save enough money and get it for his birthday. 

My sister-in-law's father overheard and decided he wanted to help us. What he ended up doing was much more than just help. He took it upon himself to fundraise absolutely every dollar towards the bike. Not only did he contribute his own money but he was able to get donations from others to help. This was something that would have taken us months to save for. The start of this conversation was November and by February we had it ordered. Not only did this man want Bryce to have a bike but he wanted to get Cohen's too. I chuckled when he told me- I told him we were just going to Wal-Mart to get his. He didn't care- he wanted to do for both boys and he did!

Bryce's spasticity was so bad that (even though his feet were strapped in the pedals) they kept coming out and making it impossible to be in the bike. Now that the surgery is over he can ride and enjoy himself. Best of all it is great therapy and he doesn't even realize it!

CAN'T THANK YOU ENOUGH KEN RANKLE!

Home Sweet Home

After a very long 8 hour trip, we are finally home and I have my family under one roof again. The boys did excellent with the drive and we were all so very happy to be back where we all belong. 

Looking back over the past week I cannot believe that everything went as well as it did. The first few days were very tough but beyond that it went better than I could have imagined. It is going to be a tough road but we are all ready. We are so excited to see what lies ahead for Bryce. We won't be able to measure the true success of surgery for at least 6 months. We will pray everyday that his spasticity will not return. Our next trip to St. Louis will be in November and we have lots of work to do before then.

Little Man is in quite a bit of pain today. I am sure the long ride home didn't help. Tomorrow we start therapy full swing with 5 days a week outside of home and one day at home. Good thing Bryce is very motivated with play- especially with his Daddy. For the next 6 weeks we have to be very careful in the way we lift, hold, pick him up and change his diaper. A couple weeks he can start bathing and swimming again. We all could use a little pool time. 

We are ready to move forward and see what lies ahead. Can't say it enough but thank you for all the love, prayers and support during this time. It has meant so much to all of us. 

Post Op Day 4

Bryce had a really rough night last night with muscle spasms but that hasn't impacted his day. His PT sessions went great except that he seems to be in a lot of pain when getting into sitting position. Once in position he seems to get comfortable pretty quick but seeing him in any pain is very hard.

Quick glimpse of incision:

 I can't tell you how impressed I have been with him. The PT sessions have went better than I could have ever dreamed. With the exception of the first couple days he has seemed to be in very little pain overall. 

Bryce has been eating like a champ but not drinking at all. This was a concern for going home but he has started drinking tonight and ate loads of ice cream ( which counts for fluid). 

We have had the chance to meet a lot of wonderful people here. Some of whom we hope to stay in touch with. We are so ready to be home though and have all four of us under the same roof again. We start full charge with therapy next week and that will be the routine for months to come. 

The love and support we have been shown over the past few weeks has been so amazing. We thank all of you for building us up this past week. We are ready to start the next chapter. 

Post Op Day 3

Bryce did amazing today. His epidural was turned off early this AM. I had feared that pain would really kick in but he did amazingly well. The first PT session was a little rough but again not as bad as I thought it would be. The second PT session was awesome- he was such a trooper the entire time. He has done better than I could have imagined.

Tomorrow he will have another two PT sessions and can go out and about at much as he an tolerate in hospital grounds of course. They have a beautiful rooftop garden that is so nice and peaceful so I would say we will be spending more time there tomorrow.

Daddy is taking over tonight so I can have some much needed time with Cohen. He has been having a lots of fun with his Mamaws but missing us too. We will all be ready to come home Sunday. Bryce's roommate and his family are from England. I have had a chance to catch up with his Mum and hearing her talk is like hearing myself. Funny how coming from different places we are walking very similar paths. 

The love and support that so many people have shown has given us the strength we needed to get through this week. It is going to be a tough road but we cannot wait to see what future we have before us. I am convinced it will be nothing short of amazing! Sending love from St. Louis!

Post Op Day 2

Bryce has had a great day. He is a totally different kid compared to yesterday. He had his arm resting above his head today ( something he couldn't do before SDR). Bryce also wiggled his toes when asked to do so. It was amazing to see! He ate like a champ as well. Overall a pretty great day.

Tomorrow is the day that the catheter and epidural will be removed and he will have to get up and moving. He will have two PT sessions. One at 8:30am at the bedside. They will show us how to handle Bryce - how to pick him up and change positions. The second PT session will be at 1pm on another floor. We are both exited and very nervous but ready for this next step. 

Please keep Bryce in your thoughts and prayers. I am sure tomorrow will be very tough on him. Thanks again for all the support you have shown!

Post Surgery Day 1

Bryce has had a difficult time with pain management. I stayed with him last night and I know neither of us slept for an hour. Every 30 minutes he was receiving  a bolus of pain meds. This would work for a few minutes but his muscle spasms kept him uncomfortable most of the time. He was in the PICU until late today and then moved to the regular floor. Tonight he is doing much better. It seems as if they have this cocktail of narcotics just right/ finally!

Bryce is sharing a room with another kiddo that had SDR the same day as Bryce. Fortunately for all of us the room is huge and much more calming. Bryce is doing great with having to lay flat and did eat for us - even though it was very little.

Hoping tomorrow is even better- we all need rest. Daddy is staying tonight so I am getting some time with Cohen. His MawMaws have been doing an excellent job of entertaining him. 

Friday will be a big day for Bryce. His catheters will be removed and he will have to get out of bed and start moving around. He will have two PT sessions- one in the morning and one in the afternoon. They will also train Matt and I on how to handle Bryce meaning positioning him and picking him up. 

Long road awaits all of us but each day he progresses in recovery. Hoping though these days start moving a bit faster. Thanks to everyone for the continued prayers and support. Many have asked for Bryce's room info. His room is in the 12th floor and room number is 10A. Off to try and get some rest.

You Raise Me Up

Surgery Day:

Today was emotional to say the least. Yesterday we met with Dr. Park and he explained that there was a possibility that Bryce's spasticity would return. This happens in some kids that are "more involved" like Bryce. It was upsetting and kind of came as a shock even though we have heard of this possibility. It was deflating. 

The morning came fast and suddenly calls, texts, FB posts and pictures came flooding in. With each message we were gaining back confidence- you were raising us up! I can't begin to thank you ALL for your love and support. I hope you know what power you sent us today.

The surgery did go great and I can see considerable changes in Bryce's feet already. He even wiggled his toes slightly- that is something he could never do before. Right now Bryce is in a lot if pain.. Experiencing muscle spasms already... The pain team has made changes in his med-cocktail and he has been smiling more already.

I can only believe that this surgery will be a success. We won't know for sure for six months to a year if his spasticity will return. One thing I will always take comfort in is that we have given him this opportunity.. Bryce's future is not yet written. We aren't willing to set back and not give him the chance based on theories or worst case scenarios. 

You touched our hearts today! Please know that even though I couldn't individually respond to everyone- I read each message and saw each picture. You are amazing and you helped this little family of 4 make it through this day and many days to come! We love all of you!

It is all becoming so real....

It is hard to believe that we are days away from Bryce's SDR. After a year of research and consideration, consulting with Dr. Park on whether Bryce was a candidate or not and then battling insurance.... we have made it. Of course, right now we are filled with so many different emotions... We are happy, excited, scared and nervous. We know that this is not going to be easy but we also know that it will be worth it. This is just the beginning of Bryce's new future!

We will hit the road Sunday morning bound for St. Louis. Monday we will meet with Dr. Park and his team. It really seems so surreal. I received the phone call today from St. Louis...

Bryce's surgery time will be 11AM on Tuesday, July 9th.

Please please, whether you pray, cross fingers or just send positive energy - whatever it is you do... Can you do it for Bryce next week?

For two days after the surgery Bryce will need to lay flat on his back. I am sure this isn't going to be a very fun time for him and very hard on us. He likes to be cuddled and held when he is in pain or overwhelmed. On day 3 the team will get Bryce up to start PT... many have said this is the worse day. I am going to do my best at keeping everyone updated while we are away. Please keep him in your thoughts and prayers over the next few weeks.

You might keep brother in those prayers as well. The boys have never done very good without one another. Cohen gets very concerned for Bryce and doesn't like when they aren't together. These 5 days apart might be a little hard on both of them. Cohen will be able to visit some but I am sure it will be scary for him too.

Thank You Simply Isn't Enough

On Sunday our families had a Celebration for Bryce and a HUGE Celebration it was. I could not get over the amount of people that came. There were grills going, popcorn popping, children playing and some live music. It was the perfect celebration. Everyone had "Believe" t-shirts on in support of Bryce. I previously said in a FB post that I always knew Bryce had an army of people supporting him. Yesterday they all SHOWED up. We closed the party with a prayer for Bryce and a balloon release. It really was a magical moment - Bryce of course was the first to let his balloon go - then the sky filled with these green balloons. Absolutely beautiful! I did try and make an attempt at saying Thank you to everyone - I was able to choke a few words out at least.

 
We are so thankful for all the love and support that we have been shown through the years. Every step of the way these people have supported all of us. There was a dear friend of mine that flew in from Boston so that she could surprise me. She truly did succeed, I honesty could not believe my eyes when I saw her walking toward me. She has been so good to me over the years becoming one of my very best friends. We worked together but hadn't seen each other - seeing her right there was so amazing.

 

It amazes me how many lives our Little Man has touched in his 4 years. He is a true inspiration to not only our family but so many other people. I hope he knows as he gets older that he does have an army behind him. We will have some hard times coming up but I KNOW that in the end this will all be worth it. Someone had given Bryce a shirt that said Super Hero In Training... He is a Super Hero already just training a little harder. This surgery will give Bryce a new future and I know for certain that it will be a better one.

Thank you again for showing your love and support. It builds us up in ways you cannot imagine. Knowing we have so many people rooting for us --- FOR BRYCE -- means the world to us. A special thanks to my Mom and Mother-In-Law for the hard work they put in to planning this event. They truly are the best MawMaw's to the boys- we wouldn't have made it this far without both of them. Also big thanks to everyone that helped out. I know I probably don't know what all everyone put into throwing this amazing party. Please know that it was very much appreciated. We will NEVER forget it!

WE BELIEVE IN YOU BRYCE!

We ALL Believe in you!

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.