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.