Friday, June 24, 2016

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!


Saturday, February 20, 2016

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*****

Friday, February 12, 2016

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 !


Thursday, February 4, 2016

The Dream

I had 'the dream' again. A particular milestone has been creeping into my subconscious more and more since Brendan had SDR. I used to have the dream once in a blue moon, maybe a few times since he was born! But lately it has been much more constant. The dream is never the same like some nightmares can be. This dream pulls at my heart because I honestly don't think it will ever become a reality.

I dream that Brendan can walk. Completely unaided. No walker, no help from his mom and step dad holding him up. He just walks.

His walking doesn't exactly look 'normal' even in my dreams. I have no idea what he would even look like walking on his own. He really struggles with his right leg and I fear it will never be able to gain the strength it needs. Last night I vividly remember every second of the dream. He was sitting on the recliner in our living room and he just stood up and took these fast tiny steps, more of a shuffle, across the room. It was really fast like if he didn't move that fast he would fall down and he had this huge smile on his face. He walked, shuffled, right into my arms. I was kneeling on the floor across the room next to our couch and I started crying, sobbing uncontrollably. I was so proud of him and I just didn't expect it. I don't know if I will ever feel the emotions I felt in my dream but I can live with that.

This dream is bittersweet. I do not know if he will ever walk on his own even after every surgery, every therapy, every hour of effort he has put in over the last 13 years. While sitting here typing I don't know what to feel. I know he doesn't need to walk unaided. I don't live life wishing he would walk or hate that he is in a wheelchair or needs to use a walker. I have come to terms with his disability and am at complete acceptance. I am at peace with it all. I have come to realize I am a bit of a perfectionist. I tend to be an over achiever which isn't always a bad thing. Not to mention I am his mother so I can't just sit back and not help him achieve the highest level of mobility that he can. I feel as his mother it is my job to do everything in my power to make his life easier while I can. I know when he is an adult he won't have to work out and can sit in a wheelchair all day and there is nothing I can do. BUT if I motivate him enough and get him to 'want' it (to walk) then maybe just maybe it will happen and he will have a much easier life. I think since he has hit his teens I am starting to fear adulthood. It pains me to think about him living without me. Someone else taking care of him or someone not being there when he needs something. This fear has been with me for sometime but is definitely intensifying the older he becomes.

Life raising a disabled child is NEVER easy and a part of my heart will always be effected until the day I die. I love him with all my heart and I am so proud of how far he has come and apparently I secretly hope that one day I can share a video of independent steps for everyone to see and not just for my eyes in my dreams.

Saturday, January 23, 2016

Looking sharp!

Brendan had his school dance this weekend. He picked out his outfit. He loves button up shirts. We found these at old navy and they come with a tie.

Sometimes pictures say 1000 words. Brendan has been working on standing and balancing for 2 months now. Last night I remembered a picture of him taken a few years ago after PERCS helped him progress. We could hold him up just using one hand. He was all stiff and concentrating so much that he couldn't even smile. Derek had is foot in front of his to stabilize him for a quick picture. His right hand is in a fist and very stiff. 



Now look at him 11 months post SDR! standing all on his own. yes he is leaning on the wall but we aren't even next to him. Derek was right in front of him because he was very excited and could lose balance at any second but still!!
Just look at that smile! Look at his right hand, look at his legs! They are still crunched but together. His right leg is trying to work as hard as his left. He is so extremely happy to be able to do this. I could look at this picture 100 times. While he is still far from perfect his stance speaks volumes of how SDR can truly help kids battling Cerebral Palsy.

Tuesday, January 12, 2016

Standing

Brendan spent a week in Texas in the beginning of November. He met Mike Poole at walk this way USA and it was amazing. This man has a gift. He can somehow work with each child and get in tune with them like no other. He instantly knew Brendan and how his brain worked. He knew exactly what he needed and how to get him to work. Going to Texas for therapy is expensive and takes a toll on our whole family and our biggest fear was that Brendan wouldn't put in the work. He often shuts down or doesn't try but Mike got him to do everything he asked of him. It was actually an amazing site. I feel so lucky to have met this man and spend a week with him. In just 5 session he gave Brendan a new found confidence. He was able to show him what his body could actually do. It wasn't easy. There was lots of yelling, threatening and tears but this kid can't wait to go back!

Brendan has never been able to stand for even a millisecond. Mike got at least one second out of him on the first try. I realize how this sounds. One second wow. But seriously when you have never seen your child stand it takes your breath away. We continue his program at home and he stood for 3 seconds last night. He is figuring out his balance and working hard to gain the strength to stand on his own two feet. He looks different lately and I can only hope that these seconds can turn into minutes. To be able to stand with out assistance even for short periods of time is life changing. So we will keep working him and we head back to Texas in June for 2 weeks! I can't even wait!!

Wednesday, January 6, 2016

He continues to amaze me! SDR Changes Lives

I keep saying progress is slow and it is but that is okay. He isn't 3 years old and full of enthusiasm. He is 13 and has gotten used to be disabled and sitting in a wheelchair and having people do everything for him. Progress is slow because of his age but I see a ton of potential in him. I have seen 3 year old children walking independently by now and we are only getting him to stand on his own for a whopping 2 seconds. I went into this entire process being okay with this. Slow and steady wins the race and I am in this for the long haul! Sometimes I have to remind myself that he has had 13 years to develop bad habits, develop fears, learn to NOT trust his body.


I still get super excited with every tiny milestone. He loves making me happy and I can tell that he is so proud of himself. He actually loves to be pushed and see his own body transform. We constantly tell him how proud we are and keep him motivated. We try to reward him with mom time which really helps him focus. He honestly can do anything he puts his mind to and he always amazes me.


This morning he was doing his lego routine and he yelled across the house that he had finished. My husband said okay now go get into your chair. He has never gotten into his wheelchair from the floor without us right by his side. I couldn't even watch because it is so nerve wracking to watch. He does it well but once he stands up he has to turn his body in a fast motion and if he misses his chair he will fall and fall hard. He has only fallen once or twice over the last 10 months so he has a great track record. This was all about confidence, he needs this so badly! So he crawled off of his peanut ball and across the room to his wheelchair, climbed in, buckled himself and wheeled himself into the dining room where we were having coffee. I am not sure I can explain what we felt inside. This may have been my proudest moment! For the first time ever we did not go and help our child. He went from the FLOOR in one room and met us in his wheelchair.

So even though progress is slow he never stops progressing. I often look back at videos to see how far he has come and how well he looks. I forget that I just took his walker supports off 2 months ago and was afraid to let him walk without me by his side and then last week had him out in the grocery store with me walking around without me even close to him. It is so easy to forget how far they come and how strong they have gotten in just a few months. I have no idea what life will be like in 5 years but I know a few of his goals:


To walk onto the school bus (instead of in his wheelchair on the ramp)
To stay up later than us and put himself to bed
To drive

So lets see if we can reach any of those goals by the time he is 18.