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!