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Friday, December 12, 2014

School Dance, Amazing People and SDR Surgery Update

Well Brendan had a blast at the school dance. He walked in his walker for the entire night and told his aide whom took him not to stay too close. Typical preteen. His aide took pictures all night which was awesome because I could spy on him. Girls were dancing with him and at one point a large group of kids surrounded him dancing and singing to "Call me maybe". She got a video of that one and it melted my heart. My husband is always afraid that it will change as these kids grow up and mature but so far it isn't changing. His teacher still sends me pictures of kids surrounding him and helping him and helping him. I am very thankful we get to grow up in this day in age where disabled children are accepted.

There are some AMAZING people in this world. We have been fundraising to help us offset the costs of Brendan's SDR surgery and have set up a go fund me account and have sold hundreds of candy bars. Word spreads and somehow this amazing group of women decided to have a yard sale and donate all funds to Brendan. We were blown away. One woman had just lost her husband and he loved to go to yard sales and they decided to honor him and raise money for people in need and they chose Brendan for the first donation. How amazing is that? To top it off they just had a 2nd yard sale that we had no clue about and raised another substantial amount of money. We also just heard they are having a party and all funds raised from drinks are being donated to Brendan. We are not the type of people who ever ask for help. I have honestly never asked my parents for financial assistance and have been living on my own since I was 17. We have a very hard time accepting help offered even just helping out with our 4 kids. We have been offered free help at our consignment shop that we own by people who have become our friends and we have the hardest time saying yes. So having people do this for us is beyond overwhelming. I feel as though we don't deserve it but you know what? Brendan does! He deserves this surgery and he deserves for us to be less stressed out and for his mom and nana to stay with him for 3 weeks and start out on the best path possible.

His school has also been amazing and is selling candy bars for us. They also raffled off a Christmas Tree which one of his teachers made and donated the money raised. They are also having a hat day where kids get to wear a hat all day if they donate $1. This whole community is amazing and I am so happy we decided to raise our children here. I knew I loved this town.

Well I have finally booked all airplane flights and hotels for Brendan's surgery. Brendan and I will be in St. Louis for 22 days. His father will be there for 8 nights and my mom is joining me the day after he leaves to help out with the baby. Brendan will have therapy once a day for two weeks after surgery and then we come home! I can't believe how fast it is approaching. I am still a little excited but the nerves will probably kick in soon!

If you want to donate this is his site:

Tuesday, November 18, 2014

Surgery has been Scheduled! Candy Bars have arrived! 1st School Dance!

A few years ago I vowed for Brendan to go 2 years surgery free. Well I surpassed that goal and we have almost gone 4 years SURGERY FREE! Never in my mind did I think SDR would be the next surgery. I was content with not going this route. However, after PERCS (his last surgery) that all changed. I saw a different child. I saw a child that could do things he never could before. I then began to second guess all those opinions about what he would be like after SDR. After watching so many success stories who all had the same debbie downers telling them their child would never do all the things they are doing I changed my mind. AND we got the phone call today. SDR surgery has been scheduled for Brendan on February 20th! That is only 93 days away. I wanted the 13th so one week would be during his school vacation but they never called and already don't have availability. UHHHHHH! Oh well, I feel better about Friday the 20th over the 13th anyway. I guess we will still use some of vacation for travel time anyway so in the end it doesn't really matter.

The candy bars arrived!! We have decided to try and sell 624 candy bars to raise more money for his surgery expenses. Wish us LUCK! Brendan's school is helping to sell a bunch so that made it seem more worth it. I had no idea how I would sell over 500 candy bars. UPS only delivered 2 of 3 boxes though even when tracking said they delivered 3 so I am really annoyed and hoping they just forgot it on the truck or something. I can't lose 208 candy bars. I wouldn't make a dime!

Brendan and his sister both attend 5th grade and they have their first school dance this Friday. Pictures will definitely be shared. How cute is this? Brendan can't attend on his own unfortunately so his aide is going with him. I figured he may rather want her to tag along than his parents. I hope he has a good time. It seems like he has plenty of friends. I am a little nervous.

Saturday, November 15, 2014

Brendan's battle with the bathroom! & The Bright Side!

As Brendan is getting older he is having some more issues with using the Bathroom. He simply does not want to poop. He refuses, he holds it, he has accidents. It is beyond frustrating because he is almost 12 and has been toilet trained since age 4. This has been going on since last January and we are at our wits end. We have tried everything under the sun to get passed this ordeal. We have punished, we have ignored, we have rewarded. We have tried natural laxatives. I have questioned puberty causing it and come up with every excuse in the book. Nothing has worked. Nothing makes sense.

However, we finally realized it is more of a control issue. I have taken him to a GI Dr. and a nutritionist trying to figure some things out but in the end we realize he wants to have control over something. Kind of like people with eating disorders. It isn't about the food, it is about control. Brendan needs assistance with everything and he can't do what he wants all the time because of all the assistance he requires. He also can't see his father as much this year due to starting middle school. He starts school an hour earlier which makes commuting to pick him up and bring him to school extremely early in the morning out of the question. His PASS worker of the past few years also stopped working with him due to furthering her career. He also had to attend a different summer school due to his age and found out he wouldn't see his father as much once he started middle school. I think there was just too much out of his control and he couldn't handle it. He has a hard time expressing his feelings which we are working on and this is what he chose to rebel against. Odd? Yes it is but we are trying our best to deal with the situation.
Recently we have made a breakthrough but it isn't over yet. He is beginning to use the bathroom and is having less accidents. He does get punished if he has an accident such as losing all electronics and he isn't allowed to go out and about with his new PASS worker. As soon as he chooses to use the bathroom he gets everything back and he is one happy boy. Slowly but surely we will overcome this bump in the road.

Even with all of this going on Brendan is STILL progressing. He still amazes me all the time. I still can't believe how proud I can feel of this child. The tiniest milestones are still appreciated beyond belief. His vocabulary is constantly improving. On a daily basis I can't believe what comes out of his mouth. He cracks me up. While his mobility is getting more difficult for him due to growth spurts and left hip issues (that is another whole blog entry) he is still impressing us. Last month we decided to see if he could get into his wheelchair on his own....from the couch! He crawled off the couch and across the room (army style) and climbed into his wheelchair completely on his own. We only gave him verbal cues. Who even knew he could do this? He loves our excitement and I am pretty sure he impresses himself. He loves knowing he can do things all on his own.

Yesterday was another WOW moment. I was changing his little brothers diaper and Brendan called me to use the bathroom (two WOW's in one!) and I could tell he really had to go so I told him to wheel into his bathroom and unbuckle and I would be there as soon as I changed Drew's diaper. Well after a quick change I ran to his bathroom and found him STANDING at his toilet holding onto his handicap bars!!!! He decided to get out of his wheelchair and just stand up and wait for me. He has never done this before and he had a huge smile on his face. AMAZING!!!! Now being 8 months pregnant this is totally awesome for me. No lifting required. Little achievements like this bring tears to my eyes.

So he can now self transfer into and out of his walker, get into his wheelchair on his own from the floor with verbal cues, and stand up at his toilet with zero help. He can also get into his wheelchair from a standing position with very little help. Now Dr. Park says he won't be able to walk on his own even after SDR but I seriously question that. He can't possibly know what my son is capable of doing from a 30 minute evaluation. If Brendan puts his mind to it he can do anything!

Sunday, November 9, 2014

Equipment Equipment Equipment

I am fully stocking his home therapy room. I have ordered a weight bench, air walker, a rower, trampoline and 3 different sized exercise balls. He already has a treadmill, stander, parallel bars, therapy bench and some balance balls. Once we get it all set up I would like to video before and after SDR to see how different he becomes. Since it will be the middle of winter here he needs everything possible at our house so he can work out no matter the weather. I am looking to hire a personal trainer for him 5 days a week for 6 months. Lets hope I find someone!

Brendan has been doing great with his new PASS worker. He has been walking a ton and is still able to bike ride on warm days. I am looking to get him a new accessible bike for Christmas. He has had the same bike since he was 3 years old and it has seen better days. He has definitely outgrown it as well. He loves to bike ride so I know he will get lots of use out of it over the next 6 years. He is still able to pedal himself since he had the PERCS procedure done years ago. It will be interesting to see how he does after SDR. I am looking at Freedom Concepts for his bike, they make amazing tricycles and they obviously last for years!

60 days left or less for my pregnancy. I am still able to lift Brendan this time when I have to which is awesome. I am getting very tired lately but overall it has been a fairly easy pregnancy. Girls are sooo much easier on my body than those boys! I have no idea why but after two boys and two girls I will say having girls is much more pleasant. We got to see our little Lily on 3D ultrasound last week. She looks just like her siblings already. I am definitely ready for this pregnancy to be over with but at the same time it is bittersweet because that means that Brendan will be having major surgery in 5 short weeks. I am not stressed at all YET but I am thinking I will be very nervous the entire month prior. I will just focus on all the success stories and why we are doing better his life! To make him more comfortable and to give him the chance to do more than he would ever be able to with all this spasticity!
Lily at 30 weeks gestation. Weighs 3lbs 13oz.

Monday, November 3, 2014


We have set up a fundraiser to help with Brendan's SDR surgery. I am planning on staying in St. Louis with him for 3 weeks with my newborn baby. This way he can receive amazing therapy and kick us off to a great start! I have ordered a ton of therapy/gym equipment for our house and am looking for a personal trainer for him. We received some terrible news at his SDR evaluation. His left hip is now out of place and it looks like he will need a left hip osteotomy. I am beyond upset about this and can only hope that SDR will help reduce the spasticity that is causing his left hip to pull out of the socket. I think I fear the hip surgery more than the SDR surgery.

Brendan has a new PASS worker. His prior one ended up working full time in her career and had a baby girl so she could no longer work with Brendan. He has adjusted very nicely and quickly especially after not having anyone for a few months. I am so grateful I found someone since being pregnant really hinders what I can do with him. He has gone on many bike rides and walks which is great for him. He has been putting away his own laundry and doing a few more chores. He requires so much assistance and I think every disabled child deserves their own personal PASS worker.

I am trying to come up with more fund raising ideas so if anyone has a good one please let me know. I am looking into candy bars or lollipops and possibly a father daughter dance.

Wednesday, October 22, 2014

Wow it has been a while!

I have not had the time to blog! We are expecting another little girl this January. She was an unexpected surprise. Life is always busy with 4 kids so I can not really imagine having 5 but we will make it work.

BIG NEWS: Brendan is having SDR, selective dorsal rhizotomy, this February. We decided to bite the bullet. Dr. TS Park in St. Louis Missouri is our surgeon. We flew out this month for his evaluation and to make sure he is still a candidate which he is. I am oddly excited. I am in the middle of buying everything he needs for the intense therapy he needs afterwards. I am thinking of hiring him a personal trainer, someone who can kick his butt into gear!! Poor kid :). His left hip now looks awful on the x rays and is 50% out of socket. This is horrible news. I absolutely hated the hip osteotomy surgery and now he needs it again. He will need hip surgery 6 months after SDR if his hip gets worse and if not we will wait at least one year. We need him to gain all the muscle mass he can so he won't regress too much after the hip surgery.

I have set up a go fund me account to help us get to and from St. Louis. It will be very expensive because I want to stay out there for 2 additional weeks for intense therapy. I want to start out on the right foot and get him motivated! I will be staying there for a total of 3 weeks with my newborn baby. I would like mother to join me and help out a little so I don't have to always drag the baby out in the dead of winter. I will post my link so you can read the full story.

Brendan has started Middle School this year and is doing well. Three schools were combined so he is meeting a lot of new people. They have 2 dances this year so my boy is growing up on us!! He now attends school with his step sister which is awesome. They went to different elementary's due to his disability.

The kids are all growing up so fast. My little guy is already 2 years old! This pregnancy is flying by as well but so far I am handling it pretty well and can still lift Brendan when I need to.

I will try and post more often especially documenting everything regarding his SDR surgery!

Here is his go fund me link which explains our visit in more detail and how we finally made the decision:

More about SDR: