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)