Thursday, November 16, 2017
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
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)
CoCo Key Water Park
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
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!
Friday, April 7, 2017
Why did we wait so long? #1 Reason is that Derek is deathly afraid of needles. He doesn't go to the doctors. He doesn't go to the dentist. I got him to go to each once in the last 10 years. #2 We totally procrastinate when it comes to anything to do with ourselves. #3 Neither of us like to make phone calls. We really hate making phone calls, we fight over who has to call in the pizza order. We love on line ordering! Pretty bad, huh?
I had to make the phone call to set up the apppointment or he would have never gotten it done. He was very nervous. I thought it was very painful but later he told me that he was just freaking out about the needle. He even had to put ice packs on his head. He brought up Brendan and we both wondered how in the world he has gone through everything he has gone through and still isn't nervous going into surgery. He made it through the surgery and then was a total champ. He got to chill for two days but having 5 kids and owning our own business it was back to the grind. I won't allow him to lift Brendan. We switched our morning routines and got him dressed and ready every morning and have done everything that needs to be done throughout the day. I even had to complete his work outs on my own which totally killed my back for two days. We just do what we need to do in this house. 3 days later and he seems to be doing awesome. He said it wasn't bad at all and hardly painful. Just sore at times but he is sore from lifting Brendan constantly and it doesn't feel much different. We are so glad we have finally gotten this checked off our list.
Makayla signed up for softball again and Drew is starting Tball. Brendan is in Unified basketball and Chloe has winter cheer so we are busy! Softball practice started this past Monday, we found out Sunday night. It was pretty cold but since we couldn't fit in Brendan's work out we brought his accessible bike and he rode around the track and then I took him grocery shopping and he walked the entire time. It was the fastest he has every walked. He has a seat on his walker so he could take breaks but he kept up with me and surprised me at his pace. In the past it has been total torture taking him to the grocery store. I would have to stand and wait for him in each aisle. This day he would catch up to me every single time. I would shop and know he would be right behind me. I couldn't believe it. After over an hour of shopping he chose to walk from the check out counter all the way to the car without stopping.
Life has been a whirlwind this week yet again. We made it to Friday. The worst part is we have to work all weekend because our employee can't work Sunday.
Let's just hope for some warmer weather. We need to get Brendan outside to learn how to use his smart drive. We need to practice some softball. We need to have some fun with these kids. I have the urge to go Spring shopping too. At least I get to buy items for the little kids all the time from our own store. I am pretty sure they already have a summer wardrobe.
Even with everything going on I had him sit in his knee immobilizers for over an hour tonight and stretched his quads
Sunday, April 2, 2017
My husband and I have been burning out recently. We have been working with him constantly since he had SDR over 2 years ago. It is exhausting. It takes time away from the rest of the family and it gets monotonous. Maybe we all need a week off here and there but then I feel beyond guilty. I never feel like we do enough. Going to Texas gives us that reboot. We get a new work out and get excited once again. Recently Derek and I have been worried that Brendan can't progress due to his weakness, hip subluxation and lack of determination. SPML and a tendon transfer at age 14 was harder than I expected. He took a long time to recover and is just now bouncing back and starting to progress. Mike Poole predicts that he will walk in canes but it will be a long term plan and it all depends on his determination. He is lazy, we all know it, 5 months later. He lacks determinatoin and we need to figure out how to help him gain motivation. He is used to everyone doing everything for him and generally lacks any sort of drive.
Brendan's week of therapy was mainly about getting him to stand correctly. We stretched him out big time and then got him to feel what it was like to stand straight and tall. Something he never enjoys or does on his own. I get him to stand tall in his stander and that is about it. He constantly crouches in his walker and this has caused his quads to become tight. His hamstrings are looking good since SPML so we need to focus on stretching him out, standing tall and moving more reciprocally.
The kids were all great for their dad. They missed me but did awesome! The 2 year old even got sick and while she was mad at me for not being here and kicked the phone away and wouldn't video chat with me she let her daddy take care of her. She was very clingy with me upon my return and wouldn't let her 4 year old brother near me but she is still under the weather so that could be why.
We all survived another week and we won't be going back to Texas for another year unless he needs hip surgery. We decided this family needs a break. I have been gone for 7 weeks in the last 25 months and our family isn't used to anyone leaving for a day nevermind a week or more at a time. We received horrible news right before we left for Texas that his left hips is 50% uncovered. The docotors here want to perform a very invasive hip surgery which I am completely against and don't feel it is the best choice for his hip condition. Dr. Yngve and Dr. Nuzzo perform a different kind of procedure that would be easier on all of us.
Unforuntately this mama totally messed up and missed his appointment with Dr. Yngve while out in Texas. I wrote down that it was on Wednesday and even had his therapy scheduled in the morning that day so we could drive 1.5 hours to attend. When we arrived I noticed there wasn't any other disabled children in the waiting room and had that sinking feeling. I was a day late. He also started vacation the following day so I was out of luck. He wasn't in the office that day and there was no way I was going to see him. I was crushed. I really wanted to talk to him about his hip and to hear how he felt his right arm was doing after the tendon bicep transfer. I am still kicking my self for that one!
So we are home and trying to rest up. I got the worst sleep all week long and am happy to be home. The kids were actually sleeping in today but the dog woke me up at 7 am to go outside which then woke 2 young children up for the day. The story of our lives!
Standing So Tall!
Monday, March 27, 2017
Everyone was very helpful again. American Airlines was great and is right up there with Delta! United is still a no go for me. I had many people offer to me help which I almost always refused. The airlines actually send someone to assist you off the plane which can be very helpful. It is hard to push him in his chair along with his walker up the ramp to the airport so I love when someone helps us do that. NC was a little too helpful and someone came with us everywhere even after I said we were all set. She came to the bathroom, to get some food and all the way to the next gate. I guess it was helpful but I always feel so awkward. I am used to doing it all myself.
We went with Dollar rental this time and Brendan got to pick his vehicle. He loves this part and he had 5 different choices. He picked a KIA (I think because someone he watches on youtube has one) and it is pretty nice. It fits everything with the back seats down.
We have been hanging out today waiting for therapy. We chose this hotel because there was an awesome employee here the last time we came but he no longer works here, unfortunately. He was awesome with Brendan. So far everyone has been nice and all make an effort to listen and talk to him.
Wish us luck with therapy! I am so nervous this time. He is still weak from SPML. His right arm has healed and he doesn't seem to favor it any longer which is great. I am glad we waited to come here because it definitely took a good 5 months before his arm healed. We actually see the doctor on Wednesday that performed the surgery so we will see what he has to say.
The family hates when we leave as do I. The girls made us a nice picture, wrote a note and left a video for us since they figured they would sleep in. I love my family.
Thursday, March 23, 2017
So we went to check on his knee before we head off to Texas and all looks okay. His knee isn't doing great because of his poor walking pattern basically his entire life. His knee cap is higher than it should be and a tendon is over stretched which is partially why he can't stand up straight. His tendonitis is doing okay but his knee gets very hot to the touch when he is working out. If we ice it afterwards he seems to be okay. We haven't had him walk 30 minutes straight since the pain began so we aren't sure how well he is really doing. We also checked on his hips and of course the dreaded words were used. SURGERY. Brendan's left hip is 50% uncovered. It is basically sliding out of place. I am extremely upset about this because I have done everything I could think of to help this hip stay in place. It has been migrating since he was about 8 years old. Now it could stay at the 50% or it could get worse. We just don't know. We can not predict what will happen. Of course the ortho surgeon wants to cut him open, hack through his femur and bolt it back into place. Definitely NOT how he explained it but most definitely what happens and absoluletly NOT what I want to do. Thankfully for facebook groups I have found over the years I have found less invasive procedures out there. I kept them in the back of my head because maybe I just knew this day would come.
Dr. Yngve and Dr. Nuzzo perform a different style of hip surgery for our kids called SLOB and Cafe door. Of course these are the doctors that also perform less invasive SPML. The ONLY two doctors that I have found to actually help our children while making it less painful and have less recovery time. I give them a lot of respect because everyone else honestly doesn't seem to care what is best for our children. They see $$$ signs when it comes to these operations. I wasn't given any advice on how to keep his hip in place. I wasn't given any other options. It was well he needs surgery and I would do this in a few months. Oh and he also told me Brendan is struggling to walk now and will never even get back to the point he is at after this surgery. So of course I cried right in front of the doctor and who knows how many other people working around me. I didn't care. I only cared that I do NOT want my son to go into surgery for the 11th time. I do not want his hip cut and bolted back together. I had a mini melt down. I cried for most of the night. I had a pity party and that is okay because sometimes we are allowed. This life isn't fair. This life can really really suck at times for the lack of a better word. This CP is destroying my son's body and has given me a head full of grey hair and it can take a hike!
I am so done. So sick of always getting bad news. So sick of him having to live this life of pain and appointments and surgeries. BUT I can't be like this for long. I have to get over it. I have to move on. I have to smile again and pretend this life is just fine. We are going to be okay. I know that we will all get through it if it comes to that even if I don't want to. I do know that this doctor will not operate on my son. I do know that I am holding off because no one in this house needs a surgery right now. I do know that it does not seem to cause him pain so I am not going to do this to him right now. I do know Dr. Park told me if his hip had gotten worse (over 50%) after SDR he would need hip surgery but it hasn't gotten worse. It just got back to pre SDR subluxation. I do know god for bid if he does need surgery I will make sure Dr. Yngve or Dr. Nuzzo operates on my kid to save us all some pain and misery.
So CP has sucked the life out of me yet again and boy do I hate when it does that. Sometimes life isn't fair. I know some people have it way worse than us. I know that this news is by far less devestating than if the cancer word was brought up. I know all of this but my heart and my brain don't care. They just want to cry and scream and be mad for a while. I tell myself and my husband that I am allowed. I have been living this life for over 14 years and I am tired. I am burnt out. I just want a break.
Breaks don't happen around here. Today I got a call at 7:30 am that his smart drive by max mobility arrived and his PT's boss basically text the mobiity company to say that she wouldn't be there. I was NEVER even informed his device was ordered or being delivered today but thankfully due to owning our own business I was able to go to a 10:30 am meeting so that he could get his power assist device. Now this is super exciting. It basically gives his manual wheelchair power assist. It will save his shoulders and arms from getting a beating wheeling himself around his whole life. I have never wanted a power wheelchair. I know he will have one some day but not yet. He is awesome with his manual chair and it has been great therapy for him. This item allows us to keep his small chair yet give him some relief. He needs to learn how to use it but I know he will. I took some videos of him learning today. We just need the weather to warm up so we can go outside and practice. It is really neat. He got the newest version and insurance paid for it. So today was a bit of a happy day even though those lurking feelings inside of me keep wanting to creep out. I am not allowing them but I am pretty grumpy today.
Sunday, March 19, 2017
I really hope that this therapy session will be beneficial. I hope he can work even with his knee bothering him. I hope that we makes some progress. I know he is so weak from surgery and the alcohol blocks and that scares me. I don't want this to be for nothing. Part of me wonders if he will continue to improve or if he will stay the same and then I see facebook posts about children walking in their canes 5 years post SDR. Then I remind myself to never give up, never think he will stay where he is at. It is difficult becuase he is growing like a weed right now which definitely inhibits his progress.
Brendan got his x rays done yesterday and we see his orthopedic on Wednesday. We will hopefully see that his knee is doing better. Fingers crossed.
So here we go for another adventure. Brendan can't wait to video everything. We are possibly getting him his go pro he has been asking for. He loves making youtube videos and it is great recording the kids and our adventures. One day they will be all grown up on us. It is going by fast and I still can't believe he is already 14 years old.
If you or your child is pre or post SDR this trainer is one the best. He really has a gift and can bring out that confidence in your child. He can ge them to do things in just a few days that you have been working for years on. Check out Walk This Way USA
Saturday, March 18, 2017
Friday, March 17, 2017
Here is a look into one of our extremely busy days with our 5 kid life:
Alarms start going off at 6AM
Brendan sets his own alarm with Alexa and we hear him yelling at Alexa to SHUT OFF ALARM!
We finally crawl out of bed at 6:30 AM
12 year old gets herself up and ready all on her own, thank goodness.
Husband gets Brendan dressed while I brew coffee (very important), prepare school snacks, make lunches for 3 of us and get breakfast ready
I prepped dinner before even sipping on my coffee (Corned Beef for St. Patrick's Day for the very 1st time)
One of us wakes up 9 year old at 7am
Put Bren on bus at 7:12am because it is still so cold out! When it warms up we just send him down the ramp and he waits on his own.
Get little kids up, dressed and fed
We get ourselves ready for the day. Finally. We shower opposite days so one of us can do whatever else needs to be done.
Drop off 9 year old at school (usually my husband because I am never ready!)
I dropped off 4 year old at preschool and my husband took the 2 year old to work (we alternate drop off)
I then went to store to grab 2 year old Almond milk then to the Post Office and then to work
I worked until 12:45 and grabbed 4 year old from preschool (with 2 year old)
I stopped and bought expensive coffee because I knew I needed it today and didn't want to wait until 5:15 for mine! little kids benefited and got kiddie coolatas so they were happy! POINTS FOR MOM
I went home to finish dinner prep and make angel food cake for our Anniversary
I cleaned up house, unloaded and reloaded dishwasher and who knows what else (I have zero memory these days)
Got Brendan off the bus at 2:15pm
Got him settled with snack and took him to the bathroom
2:45pm 12 year old gets home but she can take care of herself
I get Brendan and myself ready for therapy
Therapy ran late and we got out at 4:45pm
We fly home to get dinner on the table
husband arrives home at 5:15pm
Eat fast and finish jello dessert the kids made for St. Patrick's Day
Everyone runs off to get ready for cheer/concert
Husband drops 12 year old off at a school for cheer practice
Husband drops 9 year old off at a different school to practice for strings concert
husband comes home and picks the rest of us up to go watch violin concert
I Stay until 8:30 watching concert (husand had to leave at 8:10 to pick up 12 year old from Cheer)
Go home and get two little kids to bed
Get Bren showered and ready for bed
Finally sit down at nearly 9pm (pretty sure we had to pick up some toys first and make a Captain and Coke!)
Definitely felt the exhaustion from that day the moment I sat down but my husband reminded me we did it all without a hitch. We are an awesome team.
Tuesday, March 14, 2017
Brendan is all into YouTube lately and wants to make a new video later today so stay tuned. (See previous post)
Life is never NOT busy. I have to bring Brendan for x rays, again! I always bring him for x rays right before his ortho appointment and never have a problem. Well everything didn't go our way that day last month. I made an afternoon appointment so he wouldn't miss school and it took forever to get the little kids dropped off at our work and to drive to the city. It literally took 30 minutes to find a parking spot in the most annoying parking garage and we only took his walker so that took another 15 minutes to get inside. The place was packed with people. I have never waited so long to just check in. His appointment time was approaching and I had a feeling we were the last appointment of the day so I called to let them know we were running late. Well they told us to skip x rays and come to the appointment. I was a little aggrevated because I only made the appointment to check on his hips and ask about his knee. I asked how long the wait would be to get his x rays done and they said 45 minutes. I explained the issue but they didn't bump us up. We waited another 15 minutes just in case but had to leave because I really wanted to ask about his knee pain. It was such a process and ended up being pointless. I was beyond annoyed. The doctor's office moved over a year ago so now we have to walk back to the car and drive 6 whole minutes away to another office. By this point his knee was killing him and of course he walked horribly for the othro. Always awesome. His doctor now wants x rays of his knee as well so instead of just waiting another few months to check on his hips we have to go back next week. I am going to try and get the x rays done this Friday and his appointment is next wednesday, just a few days before we leave for Texas.
I am hoping it is only tendonitis and he will be okay to have intese therapy for a week. I will be sad if the doctor says we shouldn't go. We have been taking it easy on him so it can heal. I read that if you don't take care of it the pain can last a very long time.
Life is never dull around here. If all goes well we fly out the following Sunday and leave my husband home with 4 kids. It should be done snowing by then! At least it will be warm in Texas.
Sunday, March 12, 2017
Friday, March 10, 2017
Brendan has matured over the last few years. Snow days usually put him over the edge. Now he was a bit off on Thursday and wild for therapy. He wasn't the most cooperative and was a little crazy but any disruption to routine can cause any sort of behavior change. He used to get very upset and angry. He handles it much better this year. I had to call him from my bed at 5:30am to let him know school cancelled. He was already awake talking to his Alexa waiting for me to tell him. He told me he couldn't go back to sleep and listened to music. We were able to sleep until 8:15 am..... amazing!!! The little kids slept in. They never actually sleep in when we can. They were tricked because it was supposed to be a school day hahah!! It was great.
I should make a few phone calls today. I need to call axiobionics and Restorative Therapies. https://www.facebook.com/Restorative-Therapies-173178386057226/
There is a bike connected with estim that I think would really benefit Brendan. I was talking to his PT on Thursday about how he can not stand straight with his right leg anymore. His knee will not straighten. Now I was concerned because he had SPML a few months ago and I just couldn't understand why he can not stand tall. The PT told me since we can straighten his legs while sitting (which is actually harder to do and should cause him more pain which it doesn't) this means that it is all due to muscle weakness. He is actually having a hard time getting his right quad to activate causing weakness that we can't really improve. So he suggested Estim. Finally someoneon the same page as me. I have always wanted to try estim with Brendan and have always gotten the runaround. I am thrilled. The bike will be a process to get and Derek isn't thrilled with adding something this size into the house BUT this would be great for him to use all Winter long. I will share a video too.
Axiobionics makes a different style of braces. Not the typical AFO style. Brendan's entire right side is worse off and it really hinders him. It is frustrating because he seems so strong but once you hold back on the left side he can't do much. It is that weak! I feel he needs more assistance on that side to help him achieve higher goals. I have been procrastinating big time calling these companies so today is the day!
Thursday, March 9, 2017
Tuesday, March 7, 2017
12 years ago Brendan had zero muscle mass in his legs. He serioulsy had chicken legs. His thighs were the almost the same size as his calves. His calf was the same size of his ankle. His knee caps looked huge compared to his legs. I wish I had known. I wish I knew to have him walk without braces.
Thankfully I stayed in St. Louis after SDR for a few extra weeks so he could have additional therapy. Dr. Park had SMO's made for him. I LOVE SMO's. They gave him some ankle support but allowed him to gain the muscle he needed. He walked great in them. I still 2nd guessed myself from time to time becuase you always think as a parent you don't know as much as the professionals. However, I recently read something a mother wrote about her child being forced back into AFO's after SDR. At first her child wore the SMO's but a year or so later she was told that her child needed to wear AFO's again. Well the mother first hand witnesed her child lose all the muscle mass they worked so hard to build. We have worked 2 years and there is no way I want his muscle mass to decrease. I would cry. At that moment I knew I needed to trust my gut. I knew I was making the right decisions. However the story doesn't end there....
Over the Summer Brendan had a major growth spurt. This caused his hamstrings to tighten. As children with CP grow their tendons become shortened due to the spasticity pulling on them their entire lives. Since Brendan had SDR at a late age he needed SPML to help lengthen his tight tendons. He was walking horribly, with a crouched gain and had foot drop. Brendan needed his yearly x rays of his hips and spine and had an appointmetn with his orthopedic. After literally watching Brendan walk 10 steps he immediately said he should go back into AFO's. I said "no way. I do not want him in AFO's. He has finally been able to gain muscle and he can not walk well at all in them. I want to keep him in SMO's'. He reluctantly agreed. However, when I arrived at his orthotic appointment to have him casted for new SMO's we were again was told he needed different braces. This person was amazing and personable and took the time to really watch Brendan walk and asked us a lot of questions. She highly recommneded more than an SMO. So I 2nd guessed myself again and I listened to what she had to say. I told her there is no way I want him in AFO's. He can't build muscle wearing them. So she recommended the DAFO. (although his braces do not like like DAFO's at all) She explained them and unfortunately I pictured them a bit differently than what they actually are. They are in between an AFO and the SMO but still very restricting. I agreed because I knew we still had his SMO's (unfortunately he has now completely outgrown them) and I asked her to heat them up and help him fit into them longer. She did this for me and he was able to wear them for many more months. I asked his teachers to report how his walking is with the DAFO's on and they feel he walks better with them on. I send him to school with them and that is it. I work him out, have him ride his bike and have him walk without them on. At least I know he is in fact still gaining muscle because he recently needed the tops of his DAFO's blown out (right below the knee) because they were too tight!
I asked Brendan today if he rather walk with or without braces and he said without. I asked if he likes to work out with or without braces and he said without. We just stopped using his smo's last month because he told me they were causing him pain and it felt better to not wear anything at all so I listened to him and threw them in his closet.
I really have no idea what the best option is. I don't know who to ask. I asked Dr. Yngve his thoughts when we were there for SPML and also recommended staying in the brace he has but to have the foot constantly adjusted as he gains strength. (I don't even know what that means and will have to ask his opinion again when we see him in a few weeks) I am not done researching and I won't stop finding what is best. I am looking into axiobionics. I want him to have what he needs but also allow him to use his own muscles. I want his body to learn how to walk with a normal gait without having a brace hold his leg and foot in a fixed position. I have heard of a doctor in NY (Dr. Jordan) whom is amazing at creating braces that are best for your child. However NY is 5 hours away and we would need to travel back and forth 3x just to get these braces which is a little difficult when you have 5 kids! I have heard such good things about him so it is always in the back of my mind. Not to mention NO ONE around here agrees with SDR let alone knows post op care. I feel alone in that aspect.
Here are some photos. The AFO's (blue) were made only a few months before SDR. Notice how they are the same size top to bottom. You can see how much he has grown because both of the tall braces end at the top of the calf. I also see major ankle pronation going on in the right AFO. His DAFO (black) looks pretty normal on the right which is awesome. SMO's will always be our favorite and I will ask to see if a new pair can be made because he can't work out in the DAFO's even if I wanted him to. I don't think insurance will pay for another pair just yet. Maybe someone can work their magic and help us out.
I wish his right side was as strong as his left. His left side amazes me. He would be very well off right now if it wasn't for his entire right side dragging him down.
Derek and I work him out 3 x a week and tonight was one of those nights. I had him basically leg press me. I weigh 114lbs and was pushing back and he would push me right off. I would try with all my might to push back towards him and a few times I could not! I was impressed. We will have to get a video. We usually have him use the total gym but we switched it up. I am pretty sure the total gym has really helped him gain strength.
We had him walk for 5 minutes to see how his knee reacted. He said it only hurt a little and only while he walked. He didn't want ice or advil.
Lately he has been going on the floor in his knee immobilizers without any fight. Maybe because we have been doing it multiple times a week and it has become routine and I never take no for an answer. I am not sure but I love that he just wheels over and completely cooperates. I set his laptop up for him and he handles it for an hour.
We are trying to find something fun for him to drive this Spring and Summer but he has outgrown most things. He has been begging me for this certain jeep. I haven't been able to say yes yet due to a few reasons.
We have nowhere to store it.
It is huge and pretty sure it will destroy the yard.
We aren't good with engines and have zero mechanical abilities.
It is so hard to say no. He has the biggest smile whenever he talks about it. He has always been obsessed with driving and like I said he has outgrown everything.
We tried the power wheels go cart recently and he is huge. Way too big. :(
This is the Jeep ATV he wants so badly!
Sunday, March 5, 2017
He had a regimen of advil and icing his knee and he said it only hurts a little bit but we haven't been working him out as hard. We haven't had him walk on the treadmill at all but kept him walking at school and to therapy. We had a few amazing days of warm weather and he rode his bike for two days and loved every single second of it. I worked on some leg exercises and basically let him heal. I have to bring him in for x rays and back to the orthopedic in a few weeks.
Then we will be Texas bound AGAIN! We will head to Walk this Way USA for one week of therapy with Mike Poole. I have no idea what to expect this time. I am concerned that his knee will act up. I am worried because he is still crouching and I don't know how to fix it. I have done my research and asked a few people and we all believe it is due to weak quads and gluteal muscles. It has been such a long process and progression is so slow but I still feel SDR surgery was the best decision we could have made. He is a spastic quad so he will most likely never walk on his own and I am okay with that. I am happy where he is and the fact his body won't deteriorate as fast or as badly as it would have without SDR.
We are also visiting Dr. Yngve since we will be in Texas for his SPML post op appointment. We will drive 1 1/2 to Galveston after therapy one day and then we are planning on staying for the evening. We are going to check out a candy shop that Brendan wasn't up for due to surgery last time and go out to eat.
Our family has decided to Vlog. Why? We thought it would be a really fun hobby for our family. We are horrible at recording the kids and this will 'make' us. It will be awesome for them to look back at all the memories created. It will help us bond as a family since 4 of the kids already love YouTube and making their own videos. We are just going to show our real life. Life with 5 kids. Life raising a disabled teenage boy. We just posted our first video and plan on posting weekly. Brendan loves it and is probably the child most into it so far. The girls both act like teenagers already and think their parents are annoying so we will see how it goes. It is called 5 kid Life. Subscribe to our channel to see more.
I will leave this blog with Brendan loving a roller coaster ride in Disney. Did I even write about Disney? I may have to create a new post. Brendan absolutely loves going on rides. It is difficult especially when I have to get him into a tight space all on my own but I will never not take him on because just look at that face: (Rock 'N' Roller Coaster at Hollywood Studios)
Monday, February 20, 2017
Part of me can not believe it has been 2 years already since he had Selective Dorsal Rhizotomy. The other part realizes we have all put in so much time, effort, tears and sweat over the last two years that there is no way I wouldn't know how long it has actually been.
Honestly it has NOT been easy. It has been hard. We have all shed some tears. We have all lived life a little differently since that day we handed him over to one of the best surgeons in the United States, Dr. TS. Park. We were watching videos today and were reminded of how bad cerebral palsy was deteriorating his body at just 12 years old. He could hardly walk. He was so stiff and didn't bend his knees. He basically shuffled around using mostly is arms propped up in his walker. He was on his toes and I knew he wouldn't be walking for much longer. He was headed into full time wheelchair usage at just 12 years old. I am so happy I finally decided to go ahead with the surgery. It took me 9 years, yes 9 years to say "Let's do this". I will say it takes people months to decide now thanks to facebook groups. 9 years ago I felt alone. I lived a life with my disabled son and lived it alone. I had babycenter and that was it. One group that I joined months after he was born searching for answers and advice. So much has changed on the internet in the last 9 years. Parents are very lucky to have the support of all those groups and parents. I am always chatting with people and encouraging them and sharing our story.
The last year was not an easy one. Someone decided to grow over 3" which caused him to walk crouched which caused pain and made walking very difficult. It came out of nowwhere. Over the summer it was very apparent he needed SPML. Of course me being the mom that I am decided to throw in a right bicep tendon transfer making recovery BRUTAL!!! It was so worth it but it has been almost 4 months and he is just beginning to progress again. SPML was the best surgery he could have had after SDR and he is blowing away his prior progress.
Brendan can now:
Pedal his accessible bike for 1 full mile without assistance (I can not wait for Spring to see if he can progress even more)
Walk for 30 minutes straight on the treadmill with out any breaks (this actually caused tendonitis in his right knee which is a total bummer)
Walking is much better but he still needs some major strengthenng in his quads and glutes
He is walking faster in his walker and still has zero supports
Besides his knee hurting recently he was enjoying walking a lot more
Watching previous videos made us realize his speech has improved. Partly due to his brain having less to fight and partly his muscles. He speaks more clearly with better sentence structure and more lengthy conversations. He is always improving in speech but hearing the difference was awesome.
He is continuing to gain muscle mass. Those legs are difficult but they are bigger and he had new leg braces made after his last surgery and we already had to have them blown out because his calves got too large! Can we say EXCITING?!
His right arm was casted for one month and he wore a splint for another 2 months and yet his bicep is popping! Not sure where that muscle came from but it is there
He can pump out leg presses on the total gym one leg at a time and kills it
He can hold a bridge for 2 full minutes
He has gained over 15 pounds and looks healthy
He has finally left size 8 in clothing and we have been buying size 12 recently
He is happy and healthy and we will continue to see what his body can do. Progress is slow, beyond slow. It is hard at times sad when I see 3 and 5 year olds blow past him but I have to realize he is a spastic quad whom was almost wheelchair bound. I was very down for a month after the last surgery. I expected a much quicker recovery. I had no idea his arm would set him back so much. His school therapists wouldn't help at all and still are not helping do anyting with his arm. We had to fight and had a meeting and yet still nothing is being done. I can't fight about it any longer. I stretch it and he attends therapy weekly. They didn't do anything differently after SDR yet for some reason after this surgery they won't touch him. Whatever! Moving on.
I am finally in a better place mentally because he is progressing. He needed time. His bicep transfer was difficult on him with a slow recovery. it hurt him a lot. He acted like he never had SPML but he is still favoring his arm. We will see Dr. Yngve while in Texas for therapy so I am looking forward to see what he has to say. I am hoping he took measurements because his therapist said he gained over 20 degrees in range since the cast came off.
I have to remind myself to still take it day by day. Even 2 years after SDR.