January Surgery

January was not all fun and games. Along with a neurological change in Tyler, we chose to add insult to injury to the poor kid and do up his body for some major tune ups.

We generally do Phenol for his little legs but both our Utah doc and our Arizona doc wanted to make sure that we were all on the same page. We had to try some botox before they kept doing phenol. So we got our with our Neurosurgeon and got the ball rolling. We finally also got to a point where Tyler's retina's were stable so we needed to do some major muscle surgery to help his null zone. I was not ready for how bad the surgery on his eyes were and I broke down sobbing. His tears were bloody and he was so upset that he couldn't scratch his eyes and I cried because I am so sad that we have to keep doing this. But we sure were proud of how well he did.

He had to miss a week of school so we were at home doing lots of entertainment. He wanted to ride his bike a lot and go to the park, but with casts on his feet he was not loving that loss of independence. It made it a lot more work and him a lot more angry. We were already dealing with a lot of anger issues and it made for a long 2 weeks.

One of the days we were out of school and he was SOOO angry. He was so upset that he didn't want to do anything and he curled up on the floor right inside the door and he fell asleep. Grayson was so so hard with Tyler this week. He was mean and horrible and would hit him until someone ended up in tears.

The redness went on for a few weeks and is still read now but his eyes look so much better. The picture that I have below is from the back of my camera  and his eyes are straight. We are thrilled with the results of the surgery so far. Now we just need his glasses back.

One of the biggest bonuses that we had, we were home when Tyler's best friend came to town. We were able to go to the IDEA museum and see him and touch him. They were great to allow Tyler some one on one time to get up close and personal.

Tyler was casted for just over 2 weeks. It was a VERY long 2 weeks. Tyler was unable to do anything that he is able to do for himself. No showers, had to be carried, had to be in a stroller. It was hard. He is now in full legged braces. And seems to be doing well. We need to do botox again in April.

Jan. and Feb. were behaviorally very hard months. Tyler was sent home from school 2 days and he has just been very very hard. It looks like we are working on a few things to help him.

Ufo's...... Afo's... whatever

A few weeks ago Ty was casted for his next set of braces. We had our new evaluation for PT and had our appointment with the Spastic clinic. The PT thinks braces are a "wonderful" idea while the docs and 4 therapist say they won't work.

The docs and the therapists at PCMC don't think it will work because his ankles are what is tight. They think something helping the falling arch in his feet will work better. They also think that with a baclofen trial and more phenol and casting. The afo's will just hinder what he does have and we need more support to keep his feet from being deformed.

That said we were told that we are welcome to "try" the braces but chances of getting him to fit and to not get sores were pretty much slim to none. We expressed our concern to our braces dude and he agreed that it will probably be a hard fit and we will need a lot of adjustments. As we were fit for them the first part of the appointment we already had one problem. His ankle didn't bend to keep his feet all the way flat in the braces so he decided that we might be in bigger trouble and he would come upstairs to see us in our appointment.

Ty got Spider man braces and he was not thrilled to be put in the braces. He was crying so hard that I had to lie to him and tell him that his spider man shoes were super heroes and his shoes would make him jump higher. I HATE lying to him. ( His shoes will NOT make him jump faster or run faster. Neither will the braces. I feel telling him that will diminish his trust over time. I feel with his medical stuff that being honest if it will hurt, and what the procedure or equipment will do gives us as the parents TRUST for the future procedures.)

I had to give Mickey Mouse new shoes and that seemed to help. But overall I never know who is more traumatized.. me or him!

I knew we would have to wear them for at least 2 hours, which was fine because we went right up to therapy. We were a smidgen early so Ty went and made himself at home and had a small game of basketball. He was still wearing them and didn't complain.

Therapy is HARD with his therapist. Ty generally won't participate and he has an overall distaste it seems. I have a distaste. A big one. I do have to say that Tyler did have a pretty good day and he worked really hard but I always feel like I am always talked down to. ( don't you love his way of "keeping" Tyler safe. Yes .. use his shirt.. instead of proper positioning at the waist... but what do I know. I am JUST the mom)

After our Hour therapy we took off his braces and sure enough, just like I had said, there was a nice round red spot on his ankle bone that didn't go away in enough time to be deemed safe.

His therapist said I needed to get him "use" to them but after sending him to school in them we had many complaints from school and PT's and what not about how he ends up crawling all day and when they take off his braces he has a nice red spot on his ankle bone.

He wore the braces to school a few times. His ankle needed a rest so I am going to have to make a call to the braces guy and get some adjustments made. It is a frustrating start to all the fun stuff.

Bring on the casting, and phenol and if possible the baclofen so we can try and get him going on something new.

Reasons why I like Phenol

As most of you know Tyler gets Phenol injections to help his spastic or tight muscles. We saw a huge change from serial casting and injections to this point. We were " looking forward" to having them done again. Of course, as much as you can look forward to a "surgery" and 2 casts on a 4 year old... RIGHT~

We had made the decision to go ahead and do all of his stuff at once. Our Dr. Rehab decided she wasn't "prepared" ( don't EVEN get me started on "prepared" stuff.) So we didn't get casts. I was TICKED. But now that we are almost a week post op I am kind of glad we didn't.

Of course we MIGHT end up casting him but we MIGHT not and see how things go.

But I wanted to share some of the reasons we like the injections and what they change for Tyler

1. He can lay on his tummy. While this may seem such a small thing, he can't do it flat with out the injections. He doesn't have that ability. He takes advantage when he can and we find him slithering around all over the place.
2. He sleeps on his tummy. He is at such ease with his body that he sleeps on his tummy.
3. He is more steady on his feet. He doesn't fall as much and he has longer endurance.
4. He tries more things.
5. He can move more normally
6. I can carry him on my hips and have his legs separate
7. He lets me change his diaper because he isn't flexing his muscles constantly.
8. He seems in less pain over all

The last one is the best of all. We have tried to do all we can to have him be comfortable. He is spoiled rotten and pretty much gets what he wants. We know that. We want him to have and do all the things he can so we give him whatever he will and can do.

I am a HUGE fan of the phenol. I am sad when it wears off. Until we have to look at another option I think we will see phenol coming up again around Christmas.

He is my Brave Hero

I cannot tell you how amazingly brave and strong my sweet 4 year old is. I was listening to a song tonight that about sums up my feelings.

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son

The feelings I have had this week have been a HUGE roller coaster as they always are around the times we have any kind of procedure. I half laugh because jokingly said " it isn't brain surgery" and we have HAD brain surgery ( a lot) yet it still makes my insides and my anxiety kick into gear. The feelings of helplessness, defeat, and for me a lot of guilt get thrown in as I watch him go through ONE more thing and know that it isn't the end.

The morning went really smooth considering our early wake up. Ty was actually still asleep when we were ready to go. Which is GREAT and helped with the no eating issue.
The roads were pretty good as well until we got into downtown but we made it just in time to check in.

Ty was a pretty happy camper and we got him all set up to watch a movie and get ready for the paperwork to come. When we got there and they were ready to put a hospital bracelet on he FREAKED until we gave one to his Barney.
Shriner's has a bag of stuff ready for all the kids on their bed and the puppy was in it. He was in love. The kid currently has a zoo with all the stuff they have given him this last week. So he is all ready with Barney and his puppy watching a movie.


When we asked them to put a bracelet on Barney they even wrote his name. ( man I should be a child life specialist cause I had all the answers for my kid... OH WAIT... I am)
The vitals are pretty tough for Tyler as well. He cries when they do them. I have no idea why, but again I got the bright idea to have Barney's done and Ty complied when me and Ty did Tyler's where they needed the stethoscope. It was kinda nice to not have him cry. ( yet)
The docs were taking forever ( not uncommon in a specialist hospital or appointments) so me and Ty went on a wagon ride, all over the top floor of the fun hospital. Seriously. Shriner's is a pretty happy place.

As we headed back we started consents and talking to Dr. Gooch and the surgical team. And then came the waiting.

They gave Ty Versed. It has never worked before but man did it work this time. He was so freaking funny. I would sing him songs and he would laugh and laugh. He was "telling" his dad he was a penguin and patting his dad on the tummy. It was funny. This is the hardest part of the day knowing they are taking away my baby. It NEVER gets easier. But we laid him in the bed and off he went. NOT A PEEP.. and I didn't cry because I knew he was not missing me ( that I heard!)
We ran down and got some breakfast while Ty was gone and headed back to the room.
A tid bit about Shriner's. Most of it is run on donations and from the local Shrine. They don't take credit/debit cards there at the Cafeteria. ( I didn't know) and they handed me the receipt and said oh well. That is what we are for. Seriously. So when we went today I remember a check book and was able to "donate" back.

We got back to the room and Ty was on his way soon. It seemed everything went well. We didn't get to see Dr. Gooch but saw all the rest of the team and have all of our therapies lined up and appointments for the next 2 months to see how this goes.
Anesthesia is kind of a a beast for Tyler. For and hour and a half he screamed. And yes I look mean and fed up but we did that for an hour and a half. I was blocking it out... BLOCKING... and I have bruises.


When we finally got him settled we were able to take him home. But before we did I asked the Lady to please give Barney casts and so she did. Barney had casts and was ready to go with us. Tonight Tyler wouldn't play with Barney unless they were off but he was pretty content having the same things as Barney.
Tonight was sponge bath and meds time and he was pretty tired. The next few photos are not GREAT but shows what we are looking at for his feet.

So the verdict on the feet and why we are doing this.

1. The phenol shots that were put in his gastric and abductors are to help with the tight muscles cause by CP ( or brain damage) by taking away the tight muscles we are hoping to encourage the not strong muscles to take over and help make his muscles some what normal.
   
2. Casting, after the shots helps us stretch the muscles that have been tight for a long time in hopes that the shots will work and do their magic and a more "normal" gait will arise
3. Casting will hopefully help future orthopedic problems. Look at his toes in the last pictures. They do not sit straight. They curve. That is a GOOD curve to normally how they look and it is WAY WAY worse and isn't suppose to be there .
   

Tyler is current unable to walk, and crawling is hard. He basically can't get around. Mom is his way of transportation and dad is his way of getting loves. It would be so helpful if family and friends would come buy, knowing he might be mean and unfriendly but show the support. He will know you are there. And from the mom stand point it shows you care.
Because he is totally dependant on me at this point I know I could use a few adults to converse with so I don't lose my sanity. I normally wouldn't' ask but I am asking for the help from friends and family at this time. Please come and help us out. I promise the favor will be returned.

And the moral of my story:
I love Tyler. I feel I have given up every part of who I "was" and was "going to be" in order to be his mom. More so by going to the therapy, advocating really loudly sometimes and losing "friends" in the process. I needed my son to have the best possible outcome for his sake. I will continue to do that, even it it does step on toes.

I love him more than anything.
The words of my song as I beg my Father in Heaven
Can you hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

I will and would take his place in a heartbeat.

T you are MY bravest of Heroes