Thursday, May 3, 2012

Sorry been MIA. Left Hip Subluxation & Everything in between...

Sorry I have been MIA. Life has been very hectic being pregnant, just being a mom, and starting up this business. Some days I wear myself out. Some days I feel great and can be very productive and other days I don't feel well due to just being pregnant and can't get as much as I want done. I get frustrated when I can't physically do everything I want to do but I know I need to keep this baby safe so I try and rest. I can do some things from my bed which is nice but then I feel guilty as a mom that my 4 year old watches t.v. and colors while I work on the business. It is fun getting it up and ready but there are days when I am stressed. I am starting to get nervous about actually opening. We have never done this before. This is a totally new experience. My husband is quitting his job and we are going all out to do this and do it right. It is defintely a work in progress but check out Tivertontots.com. I have also started a facebook page, just type in Tivertontots in the search bar. Like my page to spread the word, in this small world you never know who could live just around the corner from our store. Okay on to the serious stuff that I don't feel like talking about. I had one worry free year for my son. After PERCS I could focus on how much he has improved and how beneficial that one surgery was. I was on cloud 9 for once with my son. It wasn't an easy year by far suffering multiple miscarriages and watching my father die from cancer. It was actually a pretty horrible year but at least on top of it all my son was doing okay. This year is a whole knew story. I am brought back to when he was 2 years old and all I received was devestating news from every Dr. he saw. Yesterday we saw a new orthopedic. I can't take Boston trips anymore and I had lost some trust in his Dr. which is never good. The Dr. was great. He was very personable and he drew out Brendan's amazing personality. They were both punks and it was pretty amusing to watch. The Dr. left saying Brendan had one of the best personalities he has ever seen. This made me proud. I want my son to have an amazing personality because that is what will get him somewhere in this world. Anyway, x-rays were of course the major point of this appointment. His hip and spine were taken and I have been dreading seeing the images for days. On a great note his spine showed ZERO signs of scoliosis. I was very relieved to here this because at a previous scan I was told he had a slight curve. Instantly images of a steel rod being surgically placed down his spine filled my worrisome brain. I get to put those images out of my mind for now. Prior to the good news I was shown his hips. His right hip looks amazing. After right hip osteotomy it should but since his hardware was removed I of course worried it could slip out of place with his tone. It didn't, it looked all perfect sitting in his hip socket. His left hip looked a little out of wack but at first he said it looked alright but then he did some measurements on the screen. I have no idea what he was doing but in the end he said it is subluxing and he mentioned the most dreaded word regarding Brendan's hip......SURGERY! I am not exactly sure I am strong enough to go through another hip osteotomy. It was the worst surgery we have been through. It took around 10 hours, he had to have a blood transfusion, I was wake for over 24 hours because he couldn't sleep and kept talking to me the entire night. He was in the hospital for 5 nights, he was in a lot of pain for the first week and kept waking up at night screaming in pain. He was casted from his mid belly to his toes for 6 long weeks. He only weighed 27 lbs then and he now weighs 50. I don't even want to think about this surgery. The months of stress beforehand. The sleepless night before the surgery because I knew he could potentially die during it. The months of recovery. The pain he endured healing. The 2nd surgery to remove hardware that could cause major infection. The tape accidentally left on his leg that ripped his skin dry when they removed the cast. All of these memories creep their way back into my brain and I want to say NO, I don't want him to go through this again. But the other part of me knows I have to do it if they say he needs it. I cry as I think about it, I cry as I type all of this because days like these are why it is so difficult having a disabled child. It can be heartbreaking watching them endure all of these surgeries. I cried if front of 5 people yesterday when he just mentioned we had to watch his hip. I can blame being pregnant but I am almost 100% positive I would have cried even if I wasn't. I have cried many times before hearing news I knew was coming but did not want to hear in his lifetime. So basically we are 'watching' his hip. He will have a repeat x-ray in 6 months of his hips. He has Botox on May 22nd and the Dr. said that may relax it enough that we just 'watch' it for another 6 months. It is a waiting game, one that I want no part in. I think one other thing that has been on my mind the past few days is the loss of a local man who had CP. He was 40 and has run, well by running I mean pushing himself in this wheelchair/bike backwards with his big toe, 52 marathons. He was such an inspiration and I never had the privilege to know about him until he recently passed. He died after choking. He was without oxygen for too long and suffered brain damage. They had to take him off life support and he passed away. This hit home hard for me. You don't want to think our child's life expectancy is effected but this can happen and it does. Brendan chokes all the time but he somehow has this inhumane reflex and gets the food back up and out. I have raced to him before at the dinner table but never have had to give him the heimlich. What if one day he is living on his own and I am not there to help him when he needs it??? I know that is in the distant future but stories like the loss of this amazing person effect me more than I even know. RIP Jason Pisano. I wonder why I have so many grey hairs at 32 years old. I wonder why I can stay thin and eat whatever I want. It is called stress. Oh the loving word. It is just part of having a child with Cerebral Palsy or with any other disability. It just comes with the territory. Thank goodness for his amazing personality and being a punk with the Dr. and making me laugh. Laughter is a stress reliever. I love you buddy but I wish life was easier for the both of us. Sorry for the length I have a lot on my mind. It is a rainy day and I am emotional. Life as a mom to a child with CP in full effect.

6 comments:

ellen :) said...

Praying for Brendan and you guys too! I totally get how sucky it is to imagine the worst for your child. We have been told so many times we will have to "watch" this or that...the waiting and worrying is the worst! Keep on taking care of yourself..that is the ultimate in importance! Hugs!

jenny said...

brendan is in my prayers i will be having my second major surgery because of cp in a couple weeks I know two sounds minor compared to brendan but I can say it is scary it is stressful and that he is a strong lil man and will be just fine throughout hugs to both of you and I pray the botox works for him so that he does not need a second hip surgery right off congrats on the new baby boy

We take it day by day said...

Thanks ladies. I also hate the waiting game because it is always in the back of your mind and creates this stress that you don't even realize at times. His heart surgery weighed heavy in my head for 6 years and it just seems the feeling never ends. There is always something to worry about. It can be so draining and at times unfair. :(

Oh and sorry for no paragraph breaks...it have them in my post but they won't show up that way.

Sheila said...

Wow, you sure have alot on your plate right now. Try not to worry too much about things just yet. Just focus on that sweet baby boy growing inside of you.

Life as a Mom to a child with CP is never without it's worries! Hang in there!

Amy said...

Sorry I am so behind here. I know how you feel about all the worries, and I totally got what you were saying about having just one year that went well for Brendan. I have said that so many times. I will be praying for him. Hip surgery is the one that freaks me out the most for Emma. She has some hip subluxation too that we are watching. SO, I know how you feel. It is a rough rough surgery. I can only imagine.

Like Sheila, I want to tell you to just try to rest and focus on the joys of pregnancy for now. A sweet new boy is something exciting for sure. And your new business sounds amazing! Try to take care of you right now. No, the worries never end in the CP world.

We take it day by day said...

I know as a mother we all 'worry' but having a child with CP magnifies that so much. I honestly don't worry about the other two nearly as much as Brendan. I hate that gut feeling that sits around and never seems to go away. Maybe one day it will get easier.