happy love kids

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 compute...

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 b...

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 ...

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 hap...

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 tr...

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 hones...

Holy moly where has time gone?! Oh I know, stretching, exercising, walking, last minute trip to Texas for intense therapy oh and raising 4 other kids! I miss my blog and hate that I don't have time to write. My youngest just turned ONE! I am still not even sure how that happened. My beautiful baby girl is already one and I have a 13 year old! Sheer craziness in this house. Anyway as I said we are 10 months post SDR. Brendan is older so his progression is slow and he needs a hamstring release soon but he is working hard and learning what he is capable of. Over the last 8 months we have still been working very hard. He went to Texas in the beginning of November to work with the infamous Mike Poole at Walk this Way USA. We really needed this. We all needed a reboot and to change it up. Brendan was starting to walk horribly and was losing motivation. Mike Poole gave him confidence, a new work out plan and was able to show Brendan and I just what he was capable of. It was a great week! ...