Thursday May 21st- Second opinion Ortho Consult ( Ok turn out to be 5th)

On May 8th we went to Shriner's hospital in down town Phoenix Outreach. We  saw a Doctor that went over the results of our gait lab with our regular doctor in Utah and our physiatrist in Utah to provide another opinion and recommendations to our newest Orthopedic doctor here at Phoenix Children's.

Shriner's is an amazing place and we always have such a good time going there. We are able to met up with a few of our past friends we haven't seen in a while. And of course the Shriner's are always trying hard to make sure your appointments is fun and happy.

We got the information and the doctor was heading to converse with Dr. Shrader ( the leaving Ortho surgeon and Dr. Andresevic, our current orthopedic doc) over the next week.

I got an email from Dr. Shrader letting us know that they ( Dr. A and himself) that they would like to take Tyler ( His file, not the kid! )  to a conference and use his gait labs and x-rays and movement and all that jazz, as a case study for even more input.

We were gearing up for our 21st appointment with no full information on what in the world we were doing to our child.

When we got to PCH we went in and got into Dr. Emily's office and went in to See her. She said that she was excited to have this case. That she has never coordinated with this may doctors to take care of one little  boy. She also said that Shriner's doctors are VERY protective and that our Physiatrists are VERY protective and want to make sure that everything is written down and we fully understand.

This was the list we were handed of what everyone had agreed was the best possible outcome . The last one was just a possibility. They would make it solidified once he was under anesthesia as far as what lengthening we would need to do or not do. Under anesthesia Tyler doesn't fight his tone. So because of this they can tell you what really needs to be lengthened. 

The definitions are as followed for the list above: ( this is a pretty simply definition)

1)Bilateral abductors releases- abductors are the muscles that make his legs open in his groin area. ( this was NOT done!!!! He had great tone and wasn't fighting and his range of motion was amazing!)

2) Bilateral hamstrings- Lengthening the hamstrings on both legs is basically cutting the fascia or thin lining and basically cutting them in half so that they can be lengthened then grow back together. 

3)Gastro lengthening- Lengthening his calf muscles in the same fashion they do the hamstrings. Done on both legs 

4) Right foot column lengthening- His feet are deformed a lot and of the work done was to correct how his feet are and how to make them not have contractures. 

5) Left foot Lengthening: same as above. 

6)Right femur rotation- Break his leg and turn it correctly

7) Right Tibia rotated- same as above and rotated his tibia. 

8) Right rectus femurs recession is the muscle on the outside. Basically the thigh. However, this ended up not having to b done. 

We then headed down to the clinic to for pre op stuff. His nurse there was so so terrible. I wish we could keep the nice nurse that was still learning her job. She was fabulous!!

This was a very long and a very information filled appointment. It was exhausting and the start to  very long week. 

It will be better when....

When Ty was diagnosed with his bleeds we knew we were in for a long haul. In the back of my head I always thought he would be "fine" and he would be one of the lucky kids who had no effect from the bleeds. His was SEVERE and I really thought he would be "FINE."

The media is full of stories of the babies being born early and being perfectly healthy, nothing wrong and 100 percent perfect. The media seems to forget to report the ones that don't turn out so fabulous. ( Remember the McCaughey sextuplets. Most don't because Jon and Kate took over! Some even speculate that it is because 2 of the babies have Cerebral Palsy.)

Cerebral palsy effects everyone differently. No two kids are exactly alike. What works for one won't work for another. A preemie who is 28 weeks, could be in a wheelchair while Ty who is 25 weeks is not. A 24 weeker who has some delays but no diagnosis for CP and is now older while another 24 week twins with only one surviving and has cerebral palsy but isn't in a wheelchair but is still struggling to walk.

Full term babies can be struck with Cerebral Palsy. Babies have strokes in the womb and are affected by Cerebral palsy. Some can't eat on their own, while others can. Others are fine but can't run and jump.

One phrase heard often is " It will get better when... ( insert whatever you wish would get better)" But what I didn't' understand is that the chances of "Whatever" working just like I thought was seen through my own wishes.

Tyler walks.

When he was learning to walk and going through therapy we had a therapist who said he would never walk independent of a walker. She also said that we should hold him back from walking till his gait was "normal." We soon left that therapist and he soon walked on his own. His gait is not normal but I thought all my problems would be solved when he could walk on his own.

Again, not the case. His stamina is not "normal" and therefore distances are really hard for him. He can't be expected to keep up with a normal 5 year old because ( as much as we try) he just can't go that far for that long.

I thought, if only he could talk then it will be all better. While the talking makes parenting SOOOO much easier, it didn't solve all the problems. It gets easier, better and the works but nothing fixes what we thought was "normal."

What did get better, was my ability to cope. My ability to be handle when it didn't get "better" like I thought. We still rejoice in his abilities, we celebrate the milestones and in the end we remember where we came from.

The week.

Yes there were frequent updates and that is good. Why is that good? I hate that all you people who I read don't update but once a week. So start typing so I can stalk and read you.


My most interesting stuff happened at the end of the week. However, I LOVE getting packages ( Hint to anyone who wants to send me stuff!!) and have now become a frequent stop by all of the mail carriers in the area. I have received packages this week from EBay, Overstock, some random electronic place ( yeah not mine) and another from amazon. So yep we are friends with them all. To bad they doorbell ditch!!

So what did I get? Amazon I ordered a few new books. I have enjoyed a series from a lady named Beverly Lewis. She writes about an Amish community and I am on the last of a 3 part series. I really like them

Got one from Jodi Picoult and can't wait ti try it. And of course a Baby Einstein. It is a puzzle shape book. And I have currently found the triangle and square in the kitchen. Not where it is suppose to be.

EBAY!! I love that thing. Now, you can't laugh at my purchase. ( Well you can but be nice) I won a auction for the re-release of .......... Richard Simmons "Sweating to the Oldies." 20 year anniversary on DVD. Why you ask... I needed a workout video that I can do with Ty. I need to start moving so I can have a lower risk of early delivery ( when I decide to have a baby.. I mean WE decide to have a baby) Man it brings back memories... Miss Barnes !!!!!

Overstock brought me my bed set. Love it. Better than I thought it would be. The bed skirt was a queen and not a king so they are sending me a new one. But everything else is great and I love it.

The rest of the stuff was Dallas' and I am sure he enjoyed every bit of it.

The rest of week was kinda blah till Friday. Friday was SOOOO funny.

Dallas has a issue with is neck. A bulging disc or something like that. You can read about it on his blog and what they do for it. Anyway he had another procedure done to help it feel better. He has done this before and this time was a little different. It early early. (For those that don't know us or him we do NOT do early early. ) He was way more out of it. They came to get me to try and get him to wake up. The started asking him questions. Random ones and he would try to answer and then fall asleep. It was so funny to watch.

As they sat there they asked me to help him get dressed. He had on a hospital gown and I went to untie it in the back. Got it off and started to help him take it off. He grabbed my arm and said "ok baby, now it is your turn to take something off!" I snickered and you could hear giggles from behind the sound proof curtain. He then put his hand on my cheek and said "I love you baby" he was so "not" Dallas. It was SOOOOO funny .

As they started asking him questions again they asked him how big his baby was. He said 1.5 oz. I corrected him and he looked at me kinda sternly and said " I guess it depends on who you ask"

He was so funny. He told me he wanted toast for breakfast but couldn't stay awake long enough. He finally got enough sleep to function and was back to Dallas. He was so funny.


I also was able to clean the kitchen from top to bottom, the front room from ceiling to floor and part of the outside with Dallas. Ty spent the day in and out and LOVED it. We had to take a shopping trip to walmart where I was able to get Ty's glasses fixed and get new pillows for the bed and off course groceries. Ty loves the store. Every cashier comes out to see him and the bakery and deli people always gives him cookies.He wore his glasses so he was nice and perky and looking all over.

Today I worked and Dallas was so kind to let me sleep in. It was so nice of him. Ty decided to be super clumsy and fell a lot today and got owies ( or BOO BOO's) but took them in stride. Dallas and Ty surprised me at work and Ty wanted to get down. I set him down by a register and he WALKED over to the soda case and opened it. I was so excited to see him walk that he got a soda!!

Anyway.. that is the story of us this week. If you made it to the end I hope you laughed like we did. Good night and hope you all have a wonderful week!!

I'll walk!

First some random updates. I can't find the cord so I can download the pictures but I am telling you... they are cute!!

It has rained for 2 days and raining here means MUCH cooler temps. We hit 108 the first of the week and ended with the 50's. Jackets anyone? But despite the bad weather Ty still wanted to spend his days outside. I love that kid.

Anyway, I was driving home this evening and heard a country sing on the radio and started to cry. I am NOT kidding. I thought I was turning into my mom!! ( just kidding ( kinda) Mom!! ) Its by a artist named Bucky Covington. Its called "I'll walk."
The chorus is what really got me. Obviously Ty is not a girl and is not hit on prom night but the idea is the same. ( the video is HORRIBLE and I will look for a better one.. or maybe I will make one!!)



We were 18, it was prom night
We had our first big fight
She said "pull this car over"
I did and then I told her
"I don't know what you are crying for"
I grabbed her hand and she reached for the door
She said. . ."I'll walk
Let go of my hand
Right now I'm hurt
And you don't understand
So just be quiet
And later we will talk
Just leave, don't worry
I'll walk"

It was a dark night, a black dress
Driver never saw her around the bend
I never will forget the call
Or driving to the hospital
Where they told me her legs still wouldn't move
I cried when I walked into her room
She said. . .

"I'll walk
Please come and hold my hand
Right now I hurt
And I don't understand
Let's just be quiet
And later we can talk
Please stay, don't worry
I'll walk"

I held her hand through everything
The weeks and months of therapy
And I held her hand and asked her to be my bride
She's dreamed from a little girl
To have her daddy bring her down the aisle
So from her wheelchair she looks up at him and smiles
and says. . .

"I'll walk
Please hold my hand
I know that this will hurt
I know you understand
Please, Daddy don't cry
This is already hard
Let's go, don't worry
I'll walk"

One thing I have found for certain with Tyler is that he will walk. His determination to do it is there. Yes it is hard for him and that as a parent to watch sometimes BREAKS my heart. But at the same time, he is who is he.

I love that little guy so much. And some day he will walk, Till then I will hold his hand. I watch as it hurts and sometimes I cry but all in all..

He will walk!

Heart Broken

I am just sick tonight. Not physically sick but heart sick. As you all know we started water therapy and have been attending 3 days a week. When we first got the approval it was for 60 visits. We got there today and our insurance has decided that having a diagnosis for CP makes it so Tyler has a chronic condition that can't be "fixed" so they will no longer pay for therapy. He gets 2 more visits and then we have none.

They (insurance) have denied Tyler AFO's for his feet saying they were cosmetic. They are not needed. I found a way to get them. I found a way.....

When we ordered a walker I thought for sure they would cover it. After all they will buy a wheelchair. But nope. Not covered. Why? It is considered a "gait trainer" meaning it is to help him learn to walk. And yep, our insurance denied it. Saying they don't pay for things like that but we can have a wheelchair it is covered. So, I found a way.

Now comes this. The therapy is working. He has done some major changing on how is feet are positioning. He is more stable. He takes more steps. And now they are telling me that because of a ugly ugly word he has no chance. He is a Little boy. Why deny him the world.

So I guess I do what I have done all along. Find a way. Work more hours, spend less money, something to pay for hope. I found hope in this new therapy. Not frustration but a glimpse of what he can do. I saw progress that we hadn't seen in a year.


But ... they will buy him a wheelchair!


Can't a mom dream... I just want my son to walk!

The most amazing Wordless Wednesday EVER