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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 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!