happy love kids

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 ...

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 deci...

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 ...

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 stil...

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...

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...

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...