I can understand

Brendan was sent this hand autographed little book about being a sibling to a brother with CP. It is simply written wtih adorable illustrations. It is a great book to introduce to a sibling or even a classroom gaining a new special friend. You can find it on Amazon!

https://www.amazon.com/Understand-childrens-about-special-needs/dp/0692542396/ref=sr_1_1?ie=UTF8&qid=1470877872&sr=8-1&keywords=i+can+understand

Brendan's work out room!

We have accumulated lots of equipment over the years. Brendan and his step dad recently built the wooden ladder wall to replicate the one at therapy in Texas. We use this room many times every single week.

MAX Mobility - SmartDrive MX1+ Overview

Time is flying by! So much to Say!

Wow Texas was over a month ago! Where does the time go?! We have been having a great summer. We have been very busy and just having fun with the kids. We have gone camping, spent a lot of time outside walking, swimming and on our bikes, and we are off to Story Land this weekend. Oddly this Summer Brendan has gone in an ocean, lake and pond. He usually hates swimming in them but has been open to it this year and has had a great time. He usually sits in the shade on the beach so it was so great to have him join us. He was smiling the whole time. Maybe having more control of his body makes him feel safer in the water. We have another surgery upon us and he will be back to Texas for more therapy in December ( I think).

Texas went okay I guess. Lily was a great traveler and perfect when I really needed her to be but other than that she was a bit of a nightmare. She made it very difficult and mentally exhausted me. Brendan was awesome the entire time and had a great time with his new friend Jack, whom was also there for therapy. Two weeks was a bit long for me to be away from my family and I cried a few times. Brendan got a random fever in the middle of the night before we were flying home and I lost it because I thought we weren't able to go home but we made it!! I have no idea what the fever was all about but both of us were up at 3am and so ready to go home! He ended up throwing up on the plane but pretty sure he just saw Lily's banana (he can have a strange stomach) and fortunately we someohow mananged to get almost all of it into the lovely plane puke bag even with Lily on my lap. Serious props to us hahaha. I think we totally grossed out the family next to us and they wouldn't even talk to Brendan the whole flight. At least we had the best neighbor in our row and she actually praised me on how well my children behaved throughout the flight. Therapy was okay. I wasn't allowed to attend the 2nd week because the trainer thought Lily was causing Brendan to act up and not try as hard. I guess he improved without me there but I hated not seeing the sessions. I went home blind. Two amazing moms that I have grown to know helped watch Lily in the hotel room so I could attend the last day to record the new routine.

Unfortunately Brendan is very tight. I don't think it is spasticity because I can straighten his leg still and he still feels floppy vs spastic. He has grown 3" recently and is not stopping so I am almost positive he needs SPML which is totally normal after SDR. I am actually bringing to Dr. Yngve in Texas (yup another trip to schedule) beacuse he, like Dr. Nuzzo, performs it less invasively. I am also going to see if they can do anything to help his right arm because it is hindering his walker especially in cruches. I am super excited about SMPL because he had great results years ago before SDR and I have seen so many children excel afterwards. Mike Poole (trainer) also believes he will have much more stanima afterwards which is what I really want!

Sorry I am being totally boring in this blog. Let me try and turn it around. Brendan is still impressing me. He is riding his accessible bike with ZeRO assistance. He can stop and start on a hill, it is honestly amazing! He loves riding his bike and last night I rode my bike with him. While he is slow (I can't blame him because his bike doesn't have any gears and it doesn't coast even going down a hill so he has to pedal the entire time) it was so cool riding along with him. He can steer, move aside for cars and go up and down hills all on his own.
He has been so happy lately. He is so comfortable and he really loves working out. He may fight you at first but then he really gets into it. He gets bored on break day so we usually still walk or go for a bike ride or something. He used to want to do NOTHING on break day. He is getting much stronger overall. His upper body is kind of buff!

I am still so boring today. Sorry! Life has been so busy from the moment we wake up to the moment we go to bed that this is literally the first time I have sat on the couch and relax at 8pm. I really need a break!

What is Next:

We are ordering a Max Mobility for Brendan's manual chair. I am trying to get insurance to cover it and will let you all know if that works out. It costs about $6,000 but it is really cool and less expensive than a power chair.



He will have new SMO's made.

He will head to Texas and most likely have SPML and possibly a right arm release.

He will have two more weeks of therapy in Texas.

He will begin 8th grade!

Off to Texas!

We are leaving for Texas for two weeks of intense therapy this Sunday. I am nervous and excited all at the same time. I am flying on my own with Brendan and Lily. My mom came with us last time and helped but this time I am on my own! Brendan is a great traveler and he will be fine but Lily is just 1 1/2 years old and I have no idea how she will handle a 4 hour plane ride. Not to mention I will have a wheelchair and stroller to get through the airport with. I shipped out his luggage so I wouldn't have to worry about that!

It will be one long day but worth it! I am so excited to see what he will gain after two weeks of this therapy. Mike Poole is amazing and gets results that no one else can. He has a unique gift that allows him to work with any personality and get them to work through their fears and achieve success. He breaks down their insecurities and once they realize they can do the task they gain confidence and self pride. It is amazing. You leave being able to work with your child at home better than ever before. Brendan actually enjoys working out with me. I have seen his legs grow muscle mass in the last 6 months more than in his entire life. He can walk on the treadmill on his own. He can pedal his accessible bike for almost 1 mile completely on his own. He can pedal up hills. He can get in and out of the driveway on his own. He can walk 500 feet in his walker without stopping. He has gained so much in the last 6 months. It is unbelieveable.

Life hasn't slowed down in the least bit! Having 5 kids in this day and age is not easy. I am non stop all day long. I hardly have a moment to myself. I hardly have a minute of silence unless I am sleeping. I often feel guilty not working with him more but I can only do so much. It helps that he is progressing and gaining strength. We have to do what fits into our lives and be at peace with that. Maybe it was selfish having so many children but I see how amazing our family bond is and how his siblings have shaped him into the person he is.

I will try and update in Texas but you can check his facebook page which is much easier to update daily. www.facebook.com/brendansSDRjourney2015

I can't even focus writing at this moment because Brendan hasn't stopped talking to me!

One Year SDR Anniversary!

Wow! I seriously can not believe it has been one full year since we took the plunge and went ahead with SDR. One of the hardest decisions of my life. Regrets? None! Hard work? More than you could ever imagine.

We have given it our all. I am actually proud of this entire family. We have all made sacrifices over the last year in order for Brendan to achieve all that he has. Three of the kids have lost their mom and baby sister for 4 weeks over the last year, went on a road trip to St. Louis for their summer vacation for Brendan's post op appointment, and have helped entertain the younger ones while we have worked countless hours stretching, strength training and assisting Brendan.

Brendan has come a long way and continues to work hard. He actually surprised me with his attitude and willingness to stick with the program. It hasn't been easy, there has been tears, yelling, attitude but also laughter, pride and progression. He is 13 and doesn't always want to get off his computer to work out but he does almost every single day. He loves his break days but secretly also loves working out, gaining strength and trusting his body to do more things.

I am looking forward to the next year. He has a strong foundation and core strength and an amazing home work out plan. I can't wait to see what two weeks in Texas working with Mike Poole will do for him. It should propel him into the next phase of his progression. He will achieve more confidence which does wonders for him.

I am beyond proud of this child and love seeing what he is capable of. We will continue to work hard and to sacrifice so that he can achieve the utmost possible before he enters adult hood. Hard to believe in less than 10 years he will probably be on his own. Well.....in my mind he lives a few houses down in a group home that we organize and help run. Only time will tell but I can't image the worry I will have once he leaves the nest. 

*****Look how far he has come since age 2: fisted hands and curled toes. Lots of therapy, procedures, surgeries and determination have paid off. You may not always realize how much everything really does for your child. If we did nothing I don't know what he would look like today. I presume his body would look entirely different*****

Fundraising

Okay I need some ideas! I am taking Brendan to Texas for two weeks for more intensive therapy. I am taking along my 18 month old since I think she is too young to stay behind for that long. Brendan does have money set aside but it won't cover everything. It will get expensive just feeding us for two weeks. Fortunately, I found a nice hotel with a great medical rate which offers free breakfast and even some free dinners! That will save a ton. The hotel also has a kitchen and there is a Walmart near by which will also make a huge difference.

I am looking for some ideas to raise some money. I didn't want to ask again under his go fund me since I asked for his surgery last year. I was beyond amazed at the generous amount given to us.

I am so excited for this trip. He gained so much from just one week in November. He has gained so much strength over the last three months with his new work out plan. I know 4 other families going at the same time which is so cool!

I still can't believe it has almost been one year since his surgery. Today, last year, his school had a going away party wishing him luck. That was one quick year even though it has been extremely busy,  well maybe that is why it was so fast !