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Thursday, July 11, 2013

Why I can't be lazy

Brendan is content to sit in his wheelchair all day long. It is a fight when I even take him out for some floor play. He loves his chair and how can you blame him?! It is his independence. He can wheel around the entire first floor and do whatever he wants to do. The past two days I got a big reality check.

It all started because I decided to take him for a walk every day. Meaning get his lazy butt into his walker and walk down the street and back. It sounds simple but it is a LOT of work for this kid. He needs to build some muscles and I have been too lazy with him allowing him not to walk. It has been hard caring for a newborn but Drew is almost a year (ALREADY!)and it is time I learn how to do it all with all 4 kids. His PASS worker just had a baby so she is out for the summer. I am on my own with 4 kids and I have to be productive or we will all be sitting in the house all day. It won't be easy with a baby and a disabled child but I am determined to have a great summer.

My husband joined me on these walks and decided Brendan should transfer into his wheelchair from his walker all on his own and you know what? He did it! It took him a while. I actually had tears in my eyes watching him. This is huge. Self transfer is HUGE! Tonight we had him transfer into his walker from his chair and he did it and pretty damn quickly for his first time. Transferring and walking took over 30 minutes and then he was still able to get into his wheelchair on his own and in less than 2 minutes!

So I realized quickly that if I am not lazy who knows how far this child can go! He can do it. He is getting older and he is gaining muscle mass in those arms. He tells us when he is scared and we talk him through it. I am beyond proud and kicking myself in the a** a little for not pushing him more over the last year. Being pregnant didn't help since I was pretty useless but I am back to myself and ready to get this kid motivated!

Monday, April 29, 2013

Brendan continues to ride...tandem style!

Brendan LOVES riding his bike. He has outgrown it (he has had it since he was 3!) but they aren't exactly cheap so we keep using it. He has been able to pedal on his own since the PERCS surgery. I have been searching on line for a used one....craigslist, equipment exchange sites, etc. They are not easy to find especially the exact style we need. We need to be able to push, steer and brake for him when needed. I was not having any luck. They were either already sold or didn't have the parent handle. I was feeling discouraged and trying to figure out a way to make his current bike last longer.

On one random Saturday my husband stopped in a local bike shop (not your typical bike shop....a man and his brother have a hobby and work out of their mother's garage fixing and selling bikes)to ask a question about a bike he is trying to build. While talking to the gentleman my husband notices a tandem handicap accessible bike and why did he happen to notice this among a ton of bikes jammed into a garage? Because I JUST showed him one online whiling looking on the Freedom Concepts website. I was like OMG look at this bike. It is awesome. What are the chances?! Right in our own town there is a tandem bike perfect for our son...making family bike rides possible yet again. We couldn't believe it. So fast forward a few weeks and the bike is tuned up, rust is painted, handle bars re foamed and we own a GINORMOUS tandem style bike for $400! These bikes go for over $6800! My awesome husband rigged the pedals so he could reach them and off they went.

I didn't think Brendan would love the bike as much as he does. He kept saying he wanted to ride by himself but that child could not have a bigger smile on his face when he rides. My husband thinks he likes going fast! The thing is huge but really neat. I think it was meant to be and now this huge piece of machinery can ride on!
Do you think he likes it?

If you think your child could benefit from a bike check out is amazing how many you actually find on there. Try searching handicap accessible bike or trike, freedom concepts.... Also there is a great equipment exchange site (which is great for all kinds of equipment for our special needs kiddos), great place to buy or sell your equipment. You can also hold a fundraiser or contact your local Shriners who donate bikes. I highly recommend getting a bike. Brendan built calf muscle last summer, something I have never seen on him before and it gives him independence which he LOVES. It also allows them to be a kid which they need more than anything!

Friday, April 26, 2013

2 Years Surgery Free....we did it! Cardiologist created some relief

Two years ago in April I set a goal. I wanted to make it two full years with ZERO surgeries. This was after Brendan had 3 surgeries in a row which was hard on everyone. PERCS was his last surgery and I am still thankful we did this for him. He is still benefiting from it. I can't even believe it has been two years already. That time flew by. Brendan and I discussed this today after I realized we made it the full two years and we both agreed we should try for one more surgery free year.

We had his cardiologist appointment today. I have been dreading this since I made the appointment but it went slightly better than I had imagined. I couldn't sleep last night thinking about everything Brendan has been through and what more he will have to endure in the future. Two years ago he had his Atrial Septal Defect closed and for some miracle the umbrella device worked and he DID NOT need open heart surgery. I was shocked because we went in not knowing if it would work and he needed the largest device they make. Today he had his 9th echo and his heart is functioning great. Unfortunately there is a small leak around his device. Basically the device closes a hole he had (his valve was too short and did not open and close properly) and his tissue grows around it and seals it off. For some reason he has a leak BUT since his heart is functioning great and his right side is no longer enlarged we do not need to worry or restrict him in any way. The Doctor told Brendan there is no EXCUSE to be LAZY haha! No onto the bad news....the news that has set heavily in my own heart since last year. His Aorta is enlarged. Now this can be very bad and require open heart surgery and cause a lot of issues as he gets older. The Doctor said he is not overly concerned at this time and it may not get any larger but it is something we have to watch yearly. So the one Dr. I thought we would only see every 3 years continues to be a yearly visit and something that causes a rise in my blood pressure every time it arrives.

I must say Brendan was an absolute trooper today and is seriously a pro a these appointments. He dealt with the echo very well which can be uncomfortable and part of it actually hurts because they have to press on his chest pretty hard. He hates the EKG due to the stickers they have to put on his skin but we made I deal that I would take them off and he did awesome! He used to be that screaming baby through the entire hour long appointment and today he was this amazing 10 year old who amazed the Doctor because he remembered he wore a mask due to having a cold last time he saw him. Yup that is my kid!

So as I have been saying life gets easier but once in a while you still get punched in the gut. I still remember first finding out about his 'hole' in his heart and it was devestating after finding out he had brain damage and cerebral palsy. It was just another thing we had to deal with and I hate that he has to go through so much in life. He has endured more pain than I ever have. I am so proud of the child he is becoming and how much he can handle. He comes out of everything with the best attitude and never asks why he has to go through all of this or why his siblings never do. He just goes with it and also takes it day by day.

Thursday, April 25, 2013

Best Step Daddy award goes to.....

Seriously he is amazing. He throws Brendan into the air on a trampoline nearly giving himself a heart attack, he has carrie him up 4 flights of stairs so he could ride down water slides, he does his best to help include Brendan with everything we do even if it is difficult and exhausting. Now they are bonding with 'garage' time. He lets him help build a trailer and his gas bike. Brendan absolutely loves it. He doesn't really do much but he feels very special going out there with him. It is great guy time. He can't wait to go out with him and for those of you who really know Brendan he is a MAMA's BOY! He doesn't really like not being around me and he has been willingly ditching me for 'D' (he calls him D for short because he couldn't always say Derek due to his speech delay). I love seeing and listening to them together. Brendan is always progressing and I can't believe how mature he is getting. He is a young boy who loves cars, trucks, engines and I absolutely LOVE that he can have this passion.

He has always been there for me emotionally and stepped into that father figure with Brendan immediately. He never saw him as disabled just as a little kid who quickly became a part of his life. He has been there 100% for me and all my emotions over the past 7 years and I will admit that has NOT been easy. He has been there for all of his major surgeries which may have been harder on my mental state than on Brendan himself. I haven't acknowledged him in my blog and I feel I should because he is an amazing father and the best step father I could ever ask for to help raise my disabled son. Not everyone could handle it or would want to. It isn't easy. It never will be and he is okay with that.

Saturday, April 6, 2013

Happy Easter

We finally got a family picture. It wasn't easy with 6 people but I think it came it pretty good considering. The kids all still believe in the Easter Bunny. I am not sure how we got so lucky seeing Brendan is already 10 but they still have the spirit. I love that they still believe in everything because I found out very young. I just feel bad for Drew being so much younger. I feel that having so many older siblings it will be ruined for him at a young age. I just hope they all help play along as he grows older.

Life has been busy as usual. I finally filed my taxes today and we are hardly getting anything back which is a bummer since we are so poor right now. I was hoping for a nice refund to help pay off our older van. We hardly make anything since we opened our business but it as our little adventure and I really enjoy it. I can handle being poor for now since it means we get to be together as a family so much more than before. I get to take my baby to work everyday and watch him develop all the time. It is really awesome well except on the days he is cranky and just wants to be held and I can't get any work done!!! He is usually a great baby though and I really enjoy having him with him every single day.

I just ordered some more therapy equipment for Brendan's therapy room. I don't think I will be able to fit much more in there. He doesn't always want to cooperate but he does get a lot of use out of his room. He walks on his treadmill and can use his large foam mat again. The weather is starting to warm up and he went on a bike ride the other day and did amazing! He was pedaling so well. I am looking for a new bike for him. I don't really want to buy a new one and spend $4000+ so I have been searching around for a used one. He needs one that fits a 7-12 year old. His is just too small for him...we have had it since he was 3! They seem to sell fast.

We all know Brendan is obsessed with vehicles! Well we are looking into buying him a go kart. I am trying to find one that only goes up to about 12/15 mph. It is amazing what actually exists out there when you start searching. He is outgrowing his 24 volt power wheel polaris car (which gave him hours upon hours of fun) and I am in desperate need of something to entertain him all summer. I will never make it all summer with 4 kids if he doesn't have something to keep him entertained outside. It will be difficult to take them all on a bike ride or walk but I need to figure something out or I will go insane.

Time to go do some more research and make one little boy super happy :)

Wednesday, March 27, 2013

Let's talk IPad!

Okay who has them and who uses them for educational purposes for their disabled child? I am looking into getting Brendan one to use in school. Technology really motivates him and we need something to help him learn. He is way behind. He is slowly getting there and I know he is smarter than he appears on paper but I am hoping an IPad with all of their amazing apps can help him progress.

If you have one is the IPad 2 good enough? Should I just buy a refurbished IPad 2 and save a few hundred dollars?

HELP! :)

Saturday, March 9, 2013

My lack of blogging, Botox, & baby Drew

Wow life is busy. I have not had any time to blog and so many people have been emailing me telling me they love my blog. I was all of you one day. Just starting out on this crazy life adventure finding out my innocent baby has cerebral palsy. Let me tell you all again IT GETS EASIER! At least I think so. Maybe it is due to full acceptance of this life you did not expect. Maybe it is all those tiny milestones they reach that makes your heart gush with love. Maybe it is the fact they amaze you all the time with what they can accomplish and learn. I am not sure what it is because obviously the physical part becomes more difficult. Brendan's head is up by my chin already. He is getting so big! I can not even lift him without some sort of grunting noise which he now makes himself as I am about to lift him up. Making fun of me...most likely.

Brendan had Botox injections once again last month. He seemed very loose at first but he is already tight again. I am not sure Botox is working as well as it once did. I knew this could happen. He has had the injections since he was just two years old. I am not ready for the baclofen pump. It seems to risky to me. I have been reading about a little boy who had a tree limb hit him in the head and he has spent 4 months in the hospital. He had the baclofen pump installed and he came down with bacterial of my worst fears regarding the pump. Sometimes I feel like I read things for a reason and that very sentence confirmed that he shouldn't get the pump. I want to add that I feel very fortunate that my son was born this way and a tragedy did not cause his brain damage because I can't imagine losing the child you know and having to learn how to care for them in a new way. It must be heart wrenching. On a positive note Brendan did not regress in his bed wetting after Botox. He has been doing awesome!

My little Drew is already 7 months old. He is so much fun. He is such a happy baby and is always developing right on track. He is by the book type of baby. I really enjoy watching him grow. I know he is the last so I am enjoying it all. His siblings love him to pieces and are all so helpful. Even Brendan requests to feed him his baby food and change his diapers. He is such a ham and absolutely adorable.

Oh I almost forgot, Brendan needs glasses! He had his routine eye appointment last Monday and they finally prescribed him glasses. I am not surprised since his father and I are blind as can be. He is very excited and chose blue frames. I will post a picture when they come in. The eye doctor mentioned he has minor damage to his optic nerve called atrophy which I read can be due to his CVI since they don't use that part of the eye as much it can basically shut down. Not something I want to hear or think about but such is life. I said it gets easier but I still feel like I get punched in the gut every time I hear something is wrong with him. He has endured so much and to think something is wrong with his eyes that can not be fixed, something is wrong with his heart even after a surgery, and that his lift hip isn't looking so hot is a lot to have on the back of my mind. Maybe it gets easier because we just learn to push certain things back until we HAVE to deal with them or maybe we get used to hearing horrible things about our children. I am just very fortunate that all my other children are healthy because I don't know how much my heart could handle. I still to take things day by day to keep myself sane!

Sunday, January 20, 2013

Breakthrough!!! I am so ecstatic!

I was in Drew's room for a while and couldn't hear the monitor so I didn't know if Brendan called me or not. It was 8:30 am and I figured he needed to go to the bathroom so I hurried up with Drew and went downstairs. Immediately Brendan called me whining: "Mom I had an accident". Immediately I became aggravated because I just dealt with a nasty accident the previous morning. I was all huffy ripping off his blankets, telling him he needs to call before the accident...blah blah blah. I roll him over and nothing is wet. I notice a tiny little spot on the sheet and immediately my attitude does a 180! Brendan, I say, did you stop it? He said YES! For the first time he stopped himself from having a full on accident, drenching himself, his sheets, his mattress protectors. I was beaming. He was still upset by this small amount and gave me excuses like "I drank a lot last night". I told him how awesome this was and what a big deal this is. This is a huge breakthrough and I couldn't be happier. He smiled realizing he was not in trouble and did a good thing. That worst part...he has Botox injections on Tuesday and this ALWAYS regresses him. Blogging is difficult lately. I have ZERO time for myself. I am beyond busy with these four kids, running a new business, and having a tired husband who has 3 paper routes in the middle of the night. I enjoy it. I think I thrive on a hectic life. Four is definitely enough children for us but it is definitely an enjoyable life watching them grow and mature.

Tuesday, January 1, 2013

Happy New Year

Wow 2013! Where has the time gone? I have no idea what this year will bring. I am trying to make it to two years surgery free....we are almost there! Botox had to be rescheduled because Brendan got very sick for two weeks. The WHOLE house EXCEPT me (for once) came down with it. Fever with a cold. Brendan and Makayla had it the worst. Fevers for five days and Makayla ended up in the ER with croup. Andrew faired well and only had a fever for 2 days as well as Chloe. I have no idea how I escaped it because I took care of everyone while they were sick and Brendan coughed, sneezed, and you name it right in my face multiple times. Botox is scheduled for January 15th and then I really need to make the dreaded ortho appointment to check on that left hip. I am not sure what I will do if the Dr. says he needs surgery. I honestly think I may lose it at, least for a few moments, and then somehow I will get through it. Actually I most likely will get a second opinion and put it off for a while. This kid really does not need to go through this right now. His old Dr. put off the right hip surgery for years until it caused him pain and was completely out of socket. I don't see the rush. I sometimes fear surgeons just like to perform surgery even when it isn't totally necessary. Just another decision I don't want to make. I don't want to put him through that god awful surgery. I don't want him in pain or to be so drugged for 5 days I lose the Brendan I know. I don't want him in a spica cast for 6 weeks and for him to lose so much weight because he can't really fit food in his belly with that cast. I don't want to think that I won't even be able to lift him with it on because he is no longer 5 years old or 27 lbs. So another year with more decisions and more surgeries to think about. That is life with a child with cerebral palsy. The worry never stops. The hardest decisions seem to always be near. At least I had 2012 free of surgeries and the thought of them. Back to reality for 2013, a year I am not really fond of as it is. I can be superstitious and honesty 2013 is freaking me out. Well HAPPY NEW YEAR. At least for now he is happy and enjoying life. He got a cell phone for his birthday and is the happiest boy ever. Goodbye 2012! You will be missed.