Saturday, January 20, 2018

New AFO's

We got to pick up his new AFO's. Of course his old shoes didn't fit so we immediately had to go shoe shopping as always. We go to Yorker shoes. They are great and always have shoes that fit over his braces. We love New Balance. They hold up really well and come in wide and extra wide. Since his foot is longer now we normally only need a wide. He needed a 6 1/2 to fit over his braces which I think is 1 1/2 sizes larger than his actual shoe size.


He asked for red and I was picturing this horrible bright red brace but shame on me for even doubting his orthotist to not come through with an awesome looking brace. I actually love them. He chose some very bright blue sneakers to fit over them. I was shocked he didn't want to go with the black pair but he said "nope, I don't want those". Maybe because his last pair were black. He likes to switch it up.


The worst part about new braces is adjusting. He tries them on and they get adjusted while we are there but we are never lucky enough to leave and have no issues. They are actually making huge marks on his ankles which is not normal for him. He can't even wear them until they get adjusted. I have never seen marks like these before. Normally he just gets some redness. Fortunately she will come out to his school so we shouldn't have to drive out to the city again. I just don't know how long it wil be until she can come out this way and he hasn't been able to wear his braces for a few months now.

I will get some better pictures next week and let you know if he is walking better with them. I am happy that he still walks with flat feet nearly 3 years after SDR. I do wish that his right foot wouldn't rotate outwards as much as it does. I feel like it is worse than it ever has been and I have no idea why. I have brought it up to multiple people including therapists and doctors and no one really knows why or has any advice to help it stop rotating. His body is a never ending battle, well his right side anyway. His left side looks pretty darn good. If his right side matched he would be doing very well right now but it doesn't. His right side has always been worse off and is not catching up even with SDR, SPML and a ton of strength training. Before we went into the shoe store he saw snow and asked to go step in it. This is not something he ever asks to do. I was happy he wanted to go be a boy for a moment.

So here is to another year of leg braces. They look huge. They used to be so little and cute back when he was 1 years old. This must be his 15th pair. I used to keep them all to see his growth but my husband got fed up with that idea when he found 6 pair in his closet one year.


Tuesday, January 16, 2018

It's that time again.....appointments

I am not sure why Winter is when most of his appointments have to occur but here we are yet again. We are picking up his new AFO's on Friday. February 2nd he has his yearly physical at the pediatrican and then February 26th he has the dreaded cardiology for his echocardigram. He also will need a dentist appointment soon and a wheelchair adjustment/parts order.

Brendan is becoming more decisive lately. I usually go over color options before we head into his casting appointment but for some reason I forgot. Katie, his orthotist, asked what color he wanted and he immediately exclaimed, red! I was impressed with his instant decision. Maybe he was already thinking about it before we arrived. I am slightly bummed we are back in AFO's after SDR but this type is necessary due to his crouched walking. We bought an ankle sport brace to use on his right leg while he works out. This allows him to gain muscle instead of the braces doing all of the work. I asked his orthotist if we could pay out of pocket for SMO's to use while working out and she suggested the sport brace instead. His left ankle is not as weak so he just wears it on one side.


I find the pediatrician appointment not very necessary although this time I may discuss a view things. I am thinking of having him try medical marijuana. I know this is a controversial topic but I have read many positive effects. Brendan isn't one to talk about or express pain. I think he has become accustomed to chronic pain. I don't want him to live a life in pain and cerebral palsy tends to cause more and more pain as they age. I have also read that it can help relax the body and help hips slide back into place. As you know Brendan's left hip is teetering on needing surgery. I have a lot more research to do but I want the script so I have the option once I am ready to make the decision. Feel free to leave comments on this subject!

It has already been 2 years since Brendan had his heart checked. At age 5 he had his Atrial Spetal Defect closed which has since (finally) healed nicely. However, we have also been watching his enlarged aorta. I was actually blindsided with this information a few years ago. We have only been to 1 heart appointment that I left happy and carefree. He has seen this doctor since he was 11 months old and apparently had always been watching his aorta but never told me. This may have been because I literally broke down hsyterically crying when I was told about his ASD. It was a very difficult time in my life and I had found out so many things were wrong with my baby. Something being wrong with his heart was the last straw. I apologized and was mortified but I could not control my emotions. Brendan is not one to receive good news regarding his body. Even after his ASD was surgerically repaired it had 'leaks' that we had to watch. 2 years ago was the first time in his life we were allowed to wait 2 years instead of 1 for an echocardigram. His leaks seemed to have disapeared and his aorta didn't seem to be a major conern.The doctor isn't sure if his aorta is actually enlarged or if it is a normal size for Brendan. I think since Brendan is so small for his age the charts may be off. He is 15 but far from the size of most 15 year olds. He is only 80lbs and only 4'10" so I often wonder if his heart doesn't match his body. I guess we will know more after this appointment since he has grown a lot in the last 2 years. I have put the fear out of my mind. I was told he would need open heart surgery to repair this or his life expectancy would be shortened to 35. I honestly can't fathom any of this and since the doctor didn't act like this was a definite diagnosis I decided to just give it time. The time has come.


This is our life. Sometimes I can't believe what we have been through when I write it all out. Being born at 33 weeks and losing oxygen has caused all of this. So many tears. So much stress. So many gray hairs!!!! But somehow we have made it 15 years. He is happy. I am still sane. I still can't think about the future becuase that seriously scares me to death so I continue to take this journey in life day by day.

Friday, January 12, 2018

Accessible Van Shopping

Brendan is growing and is OUTGROWING our side entry Toyota Sienna. I didn't even realize this was a possibility but apparently it has happened to other people as well. He got a larger wheelchair frame 2 years ago and we have been struggling to get him into the van since. It has really begun to bother me. I can hardly reach around his chair to get the tie downs around his chair. It is also very difficult to wheel him in and turn him into position. His tip wheels get stuck on the tie down system and then his feet get stuck on the seat in front of him. We have had this van for nearly 7 years and I was hoping to keep it for at least 10 but we will sell it and put the money towards the new vehicle.

There are so many options. Since we have a large family we can only go with the mini van or full size van. I decided against the full size even though we probably should have that size to fit our family comfortably. I didn't want to drive that huge van around everywhere and worry about roof clearance or parking garages. I hope I don't regret it.

Options:


Side Entry Rear Entry (short cut) Rear Entry (long cut) Manual Ramp Electric Ramp

We need the long cut also due to our family size. I am going with the manual ramp this time because it will be quicker to open and we will have less maintance down the road. However I have never had any major issues with our electric ramp. In the cold it can take a few tries to open. I think this is pretty common.

I have learned a lot researching. Right now the leftover 2017 Toyota Sienna's are selling at amazing prices. Search on line and always ask for the e price. It is worth the phone calls and emails. They seriously give you an amazing price. Also get an eprice from all dealerships in your area to help you get the lowest price at the dealership you want. I found purchasing your own vehicle (as long as you get a good deal) and install a rear entry conversion is the most cost effective way to go. Purchasing an already converted vehicle is much less time consuming but it also seems to be the most expensive option. We did the that the first time around when I had no clue about accessible vehicles. We just stopped in at a mobility place and bought one. I won't lie, it has been amazing over the last 6 1/2 years. It has definitely saved my back and neck from NOT lifting his equipment nor him in and out of vehicles. But he is now 15 and it is time to get a different style. One important note: If you purchase a van to convert do not get All Wheel Drive. You can not covert it so only buy Front Wheel Drive. I have also read that some conversions and even some van makes are not wide enough and some chairs don't fit in between the seats. We need this van to last through multiple chair growths. Research is a must! Ask all the questions to make sure you ge the right conversion for your family. Toyota is wider and longer than some vans which helps make the conversion work well for a large family.

Our Plan:

Buy a 2017 leftover Toyota Sienna XLE (they are also offering 0% financing right now) and then ship it off to convert it with a long cut manual rear entry. I am also going with the ez lock system so I just have ot wheel Brendan in and he locks in. No need for tie downs. No more bending over and strapping his chair in 4 locations. The EZ lock system is the most exciting part for me. Since we have a lot of kids we neeed to add a folding bench seat in the rear. We unfold it after we lock Brendan in. That will be the most annoying part but we are very limited on options. I have also read that some conversions are not wide enough and some chairs don't fit in between the seats. We need this van to last through multiple chair growths. Research is a must! Ask all the questions to make sure you ge the right conversion for your family.

Once we have our new van in our hands I will post about the process in detail and all of the companies I went through. I am still figuring out some last minute details.

We will be selling our van ourselves. We asked Toyota about trading it in and they couldn't even come up with a price to give us. We asked for a certain amount and they didn't think they could give us the amount we asked for so we passed. They actually never even offered us a dollar amount. I appreciated their honesty.

Rear entry are harder to find and after researching I found Side entry is more popular and take up over 70% of the market. I always thought rear entry were more popular. Maybe they were 6 years ago.

So hopefully in a month or so we will have our new van. I will take some video's of hooking him into both vans.

Saturday, January 6, 2018

Happy New Year! Welcome 2018

It is hard to belive it is already 2018! This year flew by. Our children had a wonderful Christmas. This year was a bit different because both my Mom and my In Laws went off for the Winter. My mom is in AZ and my inlaws are in FL. They chose a great year to escape New England as we are stuck in single digits a bit too much for my liking. Our youngest already turned 3 just a few days ago, Now that is it crazy.

It was a pretty easy year. Our business is going well and the kids are all healthy and happy. Actually the 3 year old is down and out with a fever right now. Hoping she feels good tomorrow, it will be day 3. Four kids are now in school which makes life a bit easier. Lily is getting older and easier to take care of especially while at work. I hope 2018 is just as good to us.

Brendan didn't need any surgeries and has had good behavior especially for being 15. We continue to work out multiple times every single week. This is very important after SDR. February marks 3 years since he had SDR (Selective Dorsal Rhizotomy) which also amazes me. Time sure flies by as you age. He has been growing constantly and it is causing a lot of issues with his body. We work hard to overcome the challenges but somehow CP always seems to win! We have been watching his hips often but his left hip is staying at around 40% out. I have 4 orthopedics who tell me we should perform surgery and one out of state ortho that says not to. I am extremely torn. It is one surgery I do not want to repeat. I have been told oposite opinions about how he will be after the surgery. One doctor told me he will never walk well again, not even how he is walking now. I have had another doctor tell me he will get back to where he is and hopefully surpass this level. Then I have the out of state doctor tell me what I want to hear and that is many people live with a hip that is 40% out just fine and never need surgery. I just read about an adult wishing she had the surgery when she was younger because her hip is causing pain and a poor gait. His hip never leaves my mind and I hope I am making the right decision but sometimes when I see him walk or stand I wonder if he should have the surgery. I wish I could forsee the future and then make the right decision. Wouldn't that be lovely?

Brendan is still improving on his speech. He keeps coming up with these sentances that make me laugh only because I don't expect to hear them out of his mouth. Sometimes his 10 year old sister and I repeat what he says at the same exact time. We both can't believe what he says which I find adorable. I love when she is shocked at what he says just as I am. I wish I could remember some phrases from the last week but my brain isn't working as well these days. I never ever expected him to speak as he does today and I am thrilled that the brain constantly heals and improves.

Brendan received a Keurig for his birthday and is obsessed with it. He has either coffee or hot chocolate every day. He can make it all on his own but I have to help him add ice, cream and sugar. How can I say no when he yells "I made it all on my own mom"?

He started to be able to stand up on his own lifting himself off of a kaye bench. We work on this nearly every single day. He has major balance issues. Honestly I am not sure if he has any balance at all. It is the one thing I wish would come to him but it just is not. We have been using estim on his quads because his brain wasn't activating that muscle at all and it is working! He is now activating them after a few months. His glutes don't activate either but somehow I think that may be mean to estim his glutes!!

We have a 3 week intensive therapy coming up. NAPA is opening up a location near us so we can commute every day. I figured it was worth a shot and I don't need to disrupt this family too much since we can commute every day. I am worried about his crouching and feel he needs SPML yet again. I really hope it doesn't effect his efforts or progression during the NAPA intensive. I will be diligent with stretching and working out for the next few months. He will attend at the end of June a few weeks after they open their new location. SO EXCITING!

Another exciting month will be April. My in law are bringing everyone down along with my sister in law, her boyfriend and their daughter during the whole week of April vacation. We have never done anything on a school vacation so it is a little exciting. Some of the kids have never flown so they are nervous for their first flight. The girls are getting older and can potentially fly down on their own in the future during school vacations so I am glad we get to all go together for their first flight. Brendan and I can certainly show them the ropes!

I still have my 'I hate CP days' lately but I continue to just take it day by day. I get too stressed out if I live life any other way. We will continue to work hard and appreciate any progression that Brendan has and just enjoy our lives.

Here's to 2018!!!

Brendan is really growing up on me!




Thursday, November 16, 2017

Today I hate CP!

I don't always hate CP. I have come to terms with it. I have learned to accept it. I have learned to live with it. Nearly 15 years has passed since CP became part of my life. But today, today I hate CP!

I hate that CP destroys the body. I hate that CP causes so many tears. I hate that CP will make me worry until I die. I hate the decisions that CP causes me to make. I hate that CP creates a difficult life for my son.

Brendan has been through 11 surgeries in his (almost) 15 years of life. #12 seems to be on the horizon. Brendan had a right hip osteotomy at age 5. To this date it was the most difficult surgery. It was worse than SDR. The surgery itself and recovery was brutal. He has never walked the same. He was running the halls at age 5 prior to getting checked in for surgery that day and did not act like his hip was 100% out of place. His left hip has been taunting us since he was 8. It was taking a beating according to Dr. Nuzzo. I found out that it was 40% out of place during his SDR evaluation at age 11. I had been avoiding the orthopedics for a few years so I had no idea. I lived in bliss for a few years! After SDR it was only out 25% and I was ecstatic but that didn't last long. Last year it was back to 40%. He had x rays today but I wasn't told the percentage. I am waiting on Dr. Yngve's opinion which is the only thing keeping me sane right now but definitely not preventing the tears and impending depression.

The magic number is 50%. Why is this number so important? #1 Dr. Park told me if his hip goes out to 50% he needs surgery asap. #2 If we decide to travel for yet another surgery there is a possibility that he can have a less invasive hip surgery called SLOB. They basically build a shelf above the hip bone to prevent it from sliding out further. The femur is NOT cut and repositioned. This can not be done if the hips goes over 50%. I am not exactly sure why that is.

I have spoken to 4 doctors now about his hip. 3 out of the 4 want to perform surgery either now or in the very near future. A few were a little too surgery happy for my liking. I have also been told he will never get back to where he is today so all this work, all of these surgeries were for nothing?! I immediately contacted Dr. Yngve after crying all the way home. I have also been told that he will have a major set back but he will get back to where he is today if not better. I do not know who to believe. Do they even know what they are talking about? Do they even know the answer themselves? Do they estimate based on all the previous children with CP that they have performed hip surgery on? I don't know. Why is there no other option except for surgery?

I tried to ask to the tough questions today and I went in open minded. It was the first time I didn't fall apart talking to his doctor about his hip. As soon as a doctor mentions his surgery I lose it, I ugly cry. I get angry and just want to leave. Somehow today I stayed strong. I didn't even come close to shedding a tear. Maybe it was the doctor. Maybe sometimes I am stronger than I even know. Today I asked if there was any way to avoid cutting the femur. The doctor did not give me a direct no. He actually is setting Brendan up with a CT scan so we check out all of the anatomy and see if it is possible. I was fond of that answer. I 100% do not want to cut his femur. This is his good side. His good leg. I do not want to destroy it.

Unfortunately there is no cut and dry answer here. I have multiple opinions and ultimately it is my decision. A decision I do not want to be responsible for. I talked in depth with his doctor today. Apparently if you do not fall apart you can actually discuss a lot of things regarding said surgery! Who knew?! I was told that we could wait because he does not complain of any pain, but if we do wait we will deal with adult cartilage and adult bone which will be a much more invasive surgery and be more difficult. However, what if we wait and it never moves out further than the 40%? What if he never actually needs surgery?

Maybe most of you are thinking just do it now. Get it over with and never worry about it again. His right hip looks amazing even after 10 years. I am fairly certain everyone that has been through this surgery or watched their child go through this surgery will not say that. Remember he has had 11 surgeries and hip surgery was the absolute WORST.

So today I get to cry. I am allowed to be angry and I get to hate CP. Tomorrow I will carry on as I have been doing for almost 15 years.


Sunday, August 27, 2017

Time flies when you're having fun!


It has been one crazy busy Summer. We have had so much fun with the kids and have had lots of adventures. I am so glad we bought the RV a few years back. We have definitely gotten use out of it this year. We would not have been able to do half the things we do due to the cost. It allows us to avoid eating out with 7 people, paying for 2 hotel rooms and we don't have to fly. 7 plane tickets for 7 people = unaffordable.

We had a checklist of things to do this Summer and I think we completed it just in time for School to start up again on Thursday.
My husband created this list:

Fun stuff for our Life:


Camping at the Beach
Weekend in Vermont or Maine (we did BOTH! and we actually spent an entire week in Vermont and saw the Canadian Border)
Kite Festival
PawSox Game
CoCo Key Water Park
Beach
Drew's Birthday Camping (Tent camping weekend with Dad)
Westport River Boat Ride
Martha's Vineyard (We didn't make it here BUT we took a 4 hour round trip boat tour to an Island in Maine so it counts!)

We actually went on a few more trips in the RV and were able to park overnight legally for free and had a blast.

We have owned our business now for 5 years and this was the first Summer we had our employee work every other Saturday for us. She always works on Sunday's so this gave us an entire weekend off all Summer long. It was by far the best Summer we have had. The kids were so well behaved and made everything very enjoyable.

Life isn't always easy with a fiesty 2 year old and a 14 year old with Cerebral Palsy but we make the most of it. We just carry on with our lives even if it takes a lot of work. The older girls are able to help out with the younger kids and we all pitch in to have a great time.

We have a lot of changes going on in this house. Brendan starts High School this year, yup the 9th grade! Makayla heads off to Middle School and Drew starts Kindergarten. I have been spending the last few weeks shopping for all of their supplies and clothe and we are just about all set. Everyone is always growing so everyone needed new clothes and shoes. Luckily we still try and shop at consignment stores, Savers and I am always watching for good sales to combine with coupons. We did stop at a shoe store to get everyone new sneakers and it cost $270! You can not start the school year without a pair of brand new sneakers but I am not sure I got the best deals. A bit pricey for my liking.

We realized how much money the RV saves in food while in Maine for the weekend. Since we can pack all the drinks, snacks, coffee and meals we need we save a ton! We decided to take the kids out to dinner since we NEVER go out and it cost over $100 and we just went to a little diner! 7 people just makes eating out completely unaffordable. Lesson Learned!

This Summer we have been able to park for free at Park in Rides, $5 a night in Maine and we found a great luxery campground in Vermont with 2 pools for half the amount we normally spend on our weekly Summer camping trip. We find adventures a long the way visiting our country side which cost nothing and makes amazing memories.

One day we will travel cross country to CA but we need a good 2 weeks off from work so we will probably have to wait a few years. It will also be better when Lily is a bit older. She wants out of her car seat about 4 hours into a trip. For now we will continue to enjoy our experiences and plan on heading South over the next year.


We just had a few weeks of down time and now 3 sports start up again. We have Cheer, Soccer and Softball which will take up our weekends again for many months. We are enjoying watching our children grow and learn and partake in things. It keeps us always running around but they are only kids once!

Check out our other pictures I posted!


Saturday, April 15, 2017

14 years

I have been a mom for 14 years, in fact it has been 14 years 4 months and 18 days. Some days I can't believe it has been that long and other days I feel like I have been a mom forever. My youngest just turned 2 years old 3 months ago. Since Brendan is disabled and requires a ton of assistance I have never had a break from dressing/bathing/toileting etc. I have been changing diapers/wiping butts for 14 years! I have been trick or treating, finding Easter attire, baking cookies for Santa and watching my children eat a mere few bites of their Thanksgiving meal for 14 years. I have been holding hands, carrying children on my hip along with a purse and diaper bag, pushing strollers and acting silly just for smiles and laughter for 14 years. I have had kids at the same school for 7 years and the rest of them will attend the same school for another 8 years. That is 15 years of going to parent teacher conferences at the very same school. This often astounds us. I have been taking little kids on walks in a wagon for 14 years. I have been sitting on the floor getting little kids dressed, tying shoes over and over again, holding a child in the pool and calling my mom with questions because she is a nurse for 14 years. I have heard the word 'mom' and answered more questions that I could possibly imagine over the last 14 years, actually a bit less since Brendan couldn't speak for the first few years. I have held a crying child, given kisses and found ice packs, checked temperatures, driven hours upon hours to doctor appointments and have worried endlessly for 14 years. I have helped hide teeth under pillows, held their hands or more like entire bodies for immunizations and watched nervously as my children learn to cross the street by themselves.

Sometimes it feels like an eternity especially when I realize we still have another 16 years of raising our children. In 16 years they will all have reached adult hood. Funny thing is that we will most likely have grandchildren by then as the older two will be 28 and 30 years old. Some days it feels like it will never end. I want to be done with changing diapers and not have to navigate through gates on the stairs while lugging down 4 baskets of laundry. I want to move on from this stage which is full of sippy cups, cutting grapes and freaking out while they run around a playground. On the weekends I want to watch the news instead of the same toddler television shows and to listen to the stereo while driving instead of hearing the same movie over and over. Some days I don't want to be exhausted after an extremely busy day and yet still have to bring two children upstairs, change them into pj's, brush their teeth, tuck them into bed and then run up and down the stairs another 3 times before they are finally asleep. It is 8:18 pm right now and I have already been up twice. But most of the days I don't want them to grow up at all. Most days the future scares me to death. Most days I rather them stay little then be learning how to drive or to leave an empty room behind to attend collge. Most days I want to stay right where we are and take care of them forever. Most days but certaintly not every day!

I love watching my kids grow. I love watching them learn new skills. I love hearing their adorable laughs. I love when they run up to give me a big hug and kiss even if they catch me off guard and knock me over while picking something up off the ground. I love seeing their infectious smiles over something so trivial. I love hearing "I love you mommy, your the best mommy in the whole world". I love going on walks with all 5 with some on a tricycle, others on skates and one still in a wagon happy as can be. I love hearing them learn to count for the first time, repeat funny phrases or sing along to popular songs. I love watching the older siblings play with the younger siblings or take on a parental role without me even asking. I love it all, every single phase, and I know one day I will miss all of this. One day they will be all grown up. One day they won't need me to kiss them better. One day they won't need me to make them a birthday cake. One day this house will be quiet, too quiet. One day life will be completely different than what I have grown accustomed to over the last 14 years.

I don't always like seeing my son grow up before my eyes. I don't like that my oldest is turning 15 this year, how can that even be happening? I don't like watching my 12 year old step daughter transform into a woman. I don't like having discussions about alcohol and drinking and driving. I don't want to lay in bed wondering when they will be home. I don't even know how I will survive their teenager years and they are already upon us. Maybe I will just keep enjoying these innocent days because before I know it I will have (hopefully) survived 16 years of raising teenagers!

I do look forward to being able to think for a full 5 minutes without being interupted. I look forward to not procrastinating at making a phone call because I never have a moment to myself. I look forward to not always being exhausted. I do look forward to being able drive in the car without Nemo playing on my stereo for the 100th time. I look forward to not wanting everything to be just right but often failing at making it so. I look forward to sleeping all night long and even past 7 am once in a while. I look forward to being done with changing diapers and adding to the landfill. I look forward to wanting to go somewhere and just grabbing my keys and head out the door. I look forward to many things but I will never wish my children's live's away because these moments are precious and I will enjoy my 30 years of it! I may be exhausted, I may get tired of the same monotonous daily tasks, I may dislike the 7 weekly loads of laundry but I love my family. They make me smile and laugh and they are the ones that make this life all worth it!

14 years down and 16 more to go! I got this!