Saturday, April 4, 2015

SDR Success! BUSY BUSY BUSY

Wow life is INSANE right now. Brendan is already 6 weeks post SDR and Baby Lily is 3 months old!!!!

So Selective Dorsal Rhizotomy was a cake walk compared to hip osteotomy. Maybe because he was older and we have already been through so much, I am not sure but he was a trooper! He did have some reactions to the medications such as extreme itching. He also vomited a lot but that is typical for him. He stayed 5 nights in the hospital and then I stayed at a hotel with him for 2 additional weeks so he could receive intense physical therapy. My mom came to stay with us since I had the baby with me. It all went very smoothly and I am so proud of him these last 6 weeks.

We have settled into a routine at home but we don't stop! We have a huge booklet of stretches to do twice daily. We focus on getting them done once because between school and 4 other kids there is seriously no time to do them all twice! But, he does receive PT in school 3x a week and I have hired a personal trainer to come to the house 3x a week so he is working out plenty! I do 30 minutes of stretches before school and then another 30 or so minutes after school. He has an aide that comes to the house Mon-Thur at 4pm so he usually goes for a bike ride or walk and then I finish whatever needs to be done in the evening. All this hard work is paying off and he is progressing. He is getting stronger every day and is walking so much better. He was running today in his walker! I haven't seen that in years.

Dr. Park predicted that he would only ever walk in his walker even after SDR but just 8 days after surgery he commented on a video of him walking and changed his prediction that he may be able to walk using quad canes. Only with some serious hard work and determination I imagine but this kid is killing it! He has hardly given any attitude working out and completely all his stretches. This comes from a child who is obsessed with watching youtube videos. He lets me shut his computer and stretch him out! I am so impressed and this was my biggest fear. I did not think he would work this hard afterwards.

So our lives don't stop. I am always exhausted but in the end I wouldn't change any of it. I thrive on chaos and my children keep me young. Some days my body doesn't feel as young as I wish and my wrists are not fairing well with all the stretching but I will do anything for this child. I really hope one day this all pays off and he can become more independent.

POST SDR
Brendan has ZERO spasticity!
NO longer takes baclofen
No longer needs Botox
Can side sit
Can comfortably position himself on all fours and balance on 3 limbs with assistance
Can move around on the floor much quicker and smoother
Can be put into half kneel
Stretching him is actually loosening his tight muscles
No toe walking
Can bend knees while walking

His body is so different. All the doctors and therapists I asked were against SDR. They told me without tone he wouldn't be able to do anything. Well 5 days after SDR he was walking in his walker again and now 6 weeks later he is running. I don't think he needed that tone after all! I wish more doctors would get on board with this surgery and not scare us away from going ahead with it. I should have done this when he was 3 but listened to everyone else and decided not to.

Check out his daily process here:





Monday, February 9, 2015

Just 11 days left until SDR!

I seriously can't believe how fast time is flying. He is having selective dorsal rhizotomy in just 12 days. I never thought I would be ready for this surgery and here it is less than 2 weeks away. I got emotional for the first time over the weekend. Surgeries will never be easy no matter his age, no matter how many we have been through and no matter what the outcome is supposed to be. I think I am much stronger than I was 11 years ago when he had his first surgery. My friends used to always tell me how strong I was. I never saw it, I never understood what the meant. I didn't feel strong. I felt like I was falling apart and learning to live this new life with a disabled child. As I look back and see how far we have all come and how much we have all been through I realize I was strong, strong enough at least to keep it together and to make all those difficult decisions I had to make. I have always done everything I could for Brendan. I have been the one to make all the major decisions and researched different procedures and surgeries countless times and got us to where we are today. I have taken him to NJ for PERCS because I felt he was the best Dr. for that surgery. Now we are off to St. Louis because we all know Dr. Park is the best Dr. for this surgery. I will never stop trying to do what is best for him even if the decision is so difficult for me.

This surgery could be life changing and as a family we are in it together. This surgery is causing major upheaval in our family. We have 5 kids so that alone makes everything more difficult. We own our own business so again it is difficult to just close down and stop our lives but we agree it could be worth it. Brendan's father, Derek and I will all be there for his surgery. Derek has to leave the day after surgery to take care of the other kids who will be watched by my mom and my mother in law over the 5 days. His father is headed home the day after he gets discharged and I am staying for an additional two weeks with our recent addition, Lily, so Brendan can receive intense physical therapy. My mom is flying out to help out with the baby and we are all flying home on the dreaded Friday the 13th! I am not overly superstitious, obviously since I still booked the flight, but it doesn't sit all that well with me. I am definitely not thrilled with the idea but hey we gotta get home after a long 22 days.

Afterwards he needs therapy for 4-5 times per week for at least 6 months! Yup try fitting that into our schedule! We will figure it out and we all have to work together.

I am having a bit of mommy guilt leaving my other kids for 3 weeks. My toddler with with me 24/7. He comes to work with us every day so I am really sad about leaving him. He is such a character too. He always keeps us smiling and laughing. I will miss him so much. We will all be texting, video chatting and calling each other so somehow we will all get through it. In the long scheme of things it is only 3 weeks out of our lives. We can all get through it and I know that we will. After this surgery I know we will have done everything we could for Brendan to live his life to the fullest. This surgery could just make him more comfortable or become a miracle. We will find out over the next few years. Wish us luck!

I created a facebook page for Brendan that will be updated daily during our St. Louis trip.

www.facebook.com/BrendansSDRJourney2015


Saturday, January 31, 2015

Power Wheelchair.....19 DAYS.......

Well we bit the bullet and ordered Brendan a power wheelchair. Years ago I never thought he would even be in a wheelchair. When he was 3 years old he received his first chair. I hated it. I vowed to never order another one again. Well that didn't happen. We hardly used the chair at 3 and often just used his convaid stroller. It was much easier to transport and I was not ready to have my child in a wheelchair. It felt very different out in public to have a wheelchair vs a stroller. People looked at us differently, kids stared, adults did double takes....it was hard. It became necessary to order a new wheelchair when he was 7 years old. It brought on a whole new independence for him. He loved and still loves his chair. I no longer hated the wheelchair. He has already had this chair for almost 5 years! It is falling apart and he has outgrown it a few times. I can not wait to order a new one! Which we will BUT we decided to get a power chair as well. Having 5 children it is not always easy to be out and about and always having to push Brendan around. He doesn't always have the stamina or attention span to keep up. It will be pretty awesome for him to be riding along side of us instead of always lagging behind or asking his sisters to help push him. He has wanted one for years and I never wanted to get him one because I didn't want him to be lazy. I was recently told having a manual chair isn't for exercise and it will cause him issues as he grows from wheeling around so much. He should be able to keep up with his peers and not always be fatigued from it. I looked at it with a different prospective and ordered it for him. Never did I think we would be here....3 wheelchairs in by age 12 but we are and it is okay.


Maybe we won't even need this power chair. His surgery is coming up very fast! We are leaving in 19 days. How did that happen? How is his baby sister already 4 weeks old?! Time is flying by. I am as ready as I will ever be for it. I have no idea what life will be like but we are ready to begin this new journey. I just can't believe in 3 weeks he will be recovering from Selective Dorsal Rhizotomy. I never thought I would be ready for this surgery but here we are just weeks away. He is almost weaned off his baclofen. He will not be taking a muscle relaxant for the first time in 11 years! We were able to cancel his botox injections and hopefully never have them again for the first time in 10 years. He had his first personal trainer session last week to start strength training. Life is changing and I hope we are all seriously ready for the ride!

Sunday, January 11, 2015

Baby Lily has arrived!! T minus 29 days til SDR

Our beautiful baby girl was born on January 2nd. She is an amazing baby and has fit right into our crazy family. Brendan hasn't wanted to hold her yet but hopefully this week because I love catching his huge smile when holding his new sibling. Drew has been very gentle which is shocking because he is ALL toddler boy. He rubs her head and gives her gentle kisses. The girls love her to pieces. 5 kids sound crazy but so far we have settled right into a routine. Labor was super fast and I didn't have time for an epidural so au natural it was! My first (Brendan) and last born were both natural which was an empowering experience. She was born one hour after my water was broken which is how we started our induction so that was an insanely quick labor! Hard to believe I had to be induced this time when I had to fight to keep my babies in. I owe it all to progesterone injections which prevent preterm labor. I took them for over 20 weeks with Drew and Lily and they worked wonders. I still had contractions constantly but i did not go into full blown labor.


SDR surgery is really creeping up on us. I am starting to get nervous but am reminding myself that it won't be like his hip osteotomy surgery. He won't be casted from his belly to his toes and he won't be in excruciating pain for weeks. He will be out of bed in 3 days and for the first time in his life not feel spastiicity. The future is supposed to be brighter and not filled with pain. He will no longer need to take baclofen twice a day or need Botox injections 1-2x per year. Life will become easier just with a lot more gym time. He doesn't have a clue what is going to happen but he seems excited and ready. I won't explain until right before surgery so he won't have anxiety about it. He knows if he works hard he may be able to walk one day, although he still wants a power wheelchair ;). Since discussing this surgery with him he has been trying harder to do things on his own. All the sudden he is maturing and becoming more independent which gives me a lot of hope for the future. I think he is going to try hard and surprise us all with how far he progresses. At least I hope so!


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: http://www.gofundme.com/BrendansSDRsurgery

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!