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
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!

Friday, April 7, 2017

What a week! Vasectomy, Softball and nonstop as always

5 kids is enough for us! We are done. We love our children but we can not handle 6. We have been talking about a Vasectomy for years now. Lily was actually a surprise. We were done at 4. She definitely fits right into our crazy family and I can't imagine life without her but 5 kids is way more exhausting than 4. We were supposed to get this done while I was pregnant with Lily, never happened. She is 2 years and 3 months old and we finally got it done. He is definitely going back for a recheck because I have read many stories about post vasectomy babies being born. I do not need another surprise, one was enough for us!

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

A Whirlwind of a trip but we are home!

Now that was one exhausting week. Not only for me but for my husband as well. I think we both know that he had it harder than I, not to mention this is the 2nd time the 2 year old got sick while I was gone. Not that my life was easy this week mostly because my back pain is letting me know that Brendan isn't a little kid anymore. I actually think lifting his equipment into and out of the suv trunk was more difficult than lifting him all week long. I missed my accessible van every time we went out and we were out and about a lot! Everyone was extremely nice to Brendan and all of his 1000 questions. Every person made an effort to listen to what he was saying as he still isn't always the easiest to understand and they were all so patient with him. He always makes friends with the pilots and flight attendants and recieved many free drinks and snacks throughout our trip. He still talks to EVERYONE which can be embaressing for me as I tend to by shy. I will talk to anyone that talks to me but I am not the type to strike up a conversation and he certaintly is that person. I have no idea where he gets it from. We tried to have some fun while out in Texas. He loves to go out to eat. We went to the Waterway, to the mall and enjoyed Galveston.

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!

Goodbye Texas

Monday, March 27, 2017

We made it!

We finally made it to our room around 7:30 pm. It was a long day of traveling. We left the house at 8:45 am so we were exhausted by the time we got settled. We had a connecting flight but all went well. Brendan is an awesome traveler but he was really hyper all day long. He talks to everyone and he has zero social filter so he yells across rooms saying hello and asking questions. Honestly it can be embarrassing and he refuses to listen to me when I ask him to stop talking to everyone under the sun. Everyone was beyond nice though. They moved our seats on the first fight to the row right behind first class which has lots of leg room and our seat neighbor was amazing! He was so patient and kind and answered all of Brendan's questions. Brendan actually had great questions. He has improved in his conversations and asked questions based on the gentleman's last answer. I was really proud of him. He never even asked the same questions twice! One thing that I noticed is now that he is older everyone listens to him and NOT to me. He kept requesting to sit in the very back of the plane on the 2nd leg and they actually listened to him and switched our seats. This was after I said were fine being in row 18. Normally they move us up to the front of the plane but let me tell you NC listens to Brendan. Besides walking him down the entire plane it was actually fabulous being in the last row and having no one sit with us. He made me sit on the aisle so he could 'sit by himself'. He wouldn't stop talking to the flight attendants but they were all super sweet and kept giving him free snacks and drinks. I also got a free adult drink which was awesome. I needed one on this leg of the trip!

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.