Thursday, May 17, 2012
Brendan has Botox injections in his legs and right arm on Tuesday. The sad part is it doesn't even phase me anymore. He has been through so much that Botox is nothing anymore. I will be worried that day since he does get put under and I know something can always go wrong but I don't stress for weeks beforehand anymore. I don't dwell on it. It is just something that has to be done and we will get through it. I know he will throw up afterwards and most likely in the van like every other time :). I will have a bucket ready and I know he will actually tell me he has to throw up now and there is an 80% chance he will get it in the bucket!! I am so thankful for the fact that Brendan hasn't had to have Botox since October 2010!!! Thanks to PERCS he has been doing great and hasn't needed it. He is getting a little tight and we are doing it basically for 'maintanence'. He is still doing great and walks flat footed with his left but has resumed some toeing with his right. I still believe PERCS was the most productive surgery he has ever had and has given him the best advantage to overcome his tone. He actually has leg muscles in BOTH calves. He is able to pedal his bike on his own for long distances and use his muscles more when he walks. I honestly NEVER thought I would see a calf muscle on this child and he has them! I will try and take a picture...they are so small but when I first noticed one on his left leg I actually thought something was wrong and he had a swollen leg. All the sudden I realized.... OMG THIS IS A MUSCLE!!! I couldn't believe it. He is turning 10 this year and I can't believe it. One on hand I think where has the past 10 years gone and on the other hand I think of how much we have been through together over the past 10 years and wonder how I have gotten through it all. He is doing so well and has come so far and I am so thankful. He is such an amazing little boy and I always say that but it is true. He doesn't care that he has a disability or that he has to use a wheelchair. He doesn't care that his sisters can get up and run around. He is okay with who he is and that makes life so much easier. He could barely speak at 5 years old and now he is talking with complete sentences and using more vocabulary every day. Bren had a vision anaylsis done at school again. As a reminder he has cortical visual impairment which basically means his brain damage causes his brain to not perceive images like it should. He was basically blind as an infant and on a scale of 1-10 for CVI he was at a 1. Today he is at a 9/10!!! Isn't that amazing?! This proves the brain is always repairing itself and he is STILL progressing. The specialist saw major improvements since she evaluated him 2 years ago. She seemed surprised he is functionally at such a high level. He still has some issues with his right peripheral vision so I need to find out what is causing that because she didn't seem to think it was CVI related. The worry never ends, the appointments never end, the therapies never stop, but over time the anxiety lessens, the saddness fades, and the acceptance of it all sets in. This is my life. I have a disabled child. I have a handicap accessible vehicle. I had to renovate my house for my child to be able to live independantly in and I have 100 more things to do than most parents but I can do it all and I do. I continue to live my life and fulfill my dreams and raise my children to the best that I can. I can look back and see how much we have all overcome and feel proud of everything we have gotten through together. There is still more to come and some of it I am not ready for but at least I know I will make it through this difficult journey in life and my son will be there right by my side with an amazing attitude about his life.
Tuesday, May 15, 2012
The store is offically ours! We started painting today. We are going to paint the wood floors....very old wood floors....and put carpet in half of the store. We are painting the ceiling and walls and then will hang the clothing rods. I can't wait to start setting up and see the huge transformation. The store was a WRECK before we rented it. Brendan has been asking to email ICarly for a few days now so I looked up an address for him tonight so he could email her. I hope he gets a response. He absolutely loves that show. He doesn't really watch much television, never has but will watch this show daily. He begs his sisters to constantly watch ICarly in the van. Thank you for the support on our crazy adventure. We hope to open as soon as possible....I get tired easily so my husband has a lot of work to do but I tried helping today as much as I could. I ran to the store for him a few times and brought him coffee :). I painted some trim but moving and bending with this ginormous belly is far from easy. Thank goodness I have an amazing husband who tells me to go home and rest.
Friday, May 11, 2012
Today I felt proud of myself. Proud that I am starting a business while 6 months pregnant. Proud that we are going through with a plan and a dream. I think it is on our blood. My husband's father owned his own business and they started it when his mom was pregnant with him. My father never like working for people and he owned his own business. I know our family thinks we are bit crazy but it is our life and the chance we are taking. I would rather more support but I am used to it. We will just have to show everyone we weren't crazy or stupid and make it work! It is stressful and exhausting but I have been working as much as I can while the kids are in school. My 4 year old has been great and lets me get a lot done. We have over 1000 items for our store already and we aren't even open yet. We just need the people to come and shop and buy all these things! I really hope it works out but if it does not I will persevere and try something else. It will certainly be interesting with a newborn and three other kids to care for but I think it is right for our family. We love being together and I don't think the kids will mind coming to the store. Maybe in a few years they will be helping us out! We hope this is our family business for years to come and we can expand and possibly have two stores. Go Big is what they say...right?! Well I am off to the Doctor for my #.....I lost count.....injection to keep this baby cooking for as long as possible. Soon enough we can guess an arrival date! I am hoping for July 28th. I know it is a bit early but both girls were born on the 20th and it would be really neat if both boys were born on the 28th! I guess I shouldn't hope to deliver 4 weeks early but I am already getting uncomfortable. I think he will be a big boy. He is crazy at night so I already know I won't be in bed before 11pm when he arrives. I can't wait to meet him, he is so special to me. He is the baby I never thought I would have. His pregnancy has been far from easy. I still get nauseous and I am already almost 25 weeks but that is what boys do to me. I don't react well to their hormones or something. It will all be worth it to hold him in my arms and to think how much he was wanted and how many years it took for him to bless us with his life. 4 kids....wow!!! That is a lot but I love my big family and I am so happy that Brendan has a bunch of siblings that love him for who he is. My stepdaughter said to him... "Brendan you aren't handicap you are handicapable!"....best quote ever.
Thursday, May 3, 2012
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.