Thursday, March 23, 2017

Here is how to use the smart drive by Max Mobility

The good, the bad and the ugly!

This week has had its ups and downs that is for sure! We saw Brendan's orthopedic and received some devestating news. Then his max mobility arrived which means insurance covered it. We are off to Texas in just 3 days and I am not ready in the least bit. My brain can't take much more. I am emotionally drained.

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

T Minus 7 Days

We leave for Texas in just one week. Let's lay on the mommy guilt! I feel so bad for leaving the family. My husband has to be a single dad for 4 kids and run our business all on his own. I am not sure I could even handle all of that! I am off without the baby this time so it will be pretty easy for me.
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

Friday, March 17, 2017

I am exhausted. Crazy busy days lately

Life is becoming so hectic. The kids are involved in activites and we are constantly running around. Yesterday was our Wedding Anniversary but we didn't even get to celebrate. I am pretty sure one day we will be bored out of our minds!

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.