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. 

Lets talk about Pressure sores

I am a SENIOR at ASU here in Tempe. I am online so I am able to do most of my homework at night. I haven't done so bad considering all the stuff that goes on in our world. Just therapy alone takes up 3 days and appointments take up a few other days and a 3 year old takes up a lot more!

But my nights are filled with homework and reading and writing and rewriting.

After finals though, I can blog. Which I LOVE!


So tonight we are going to talk about Pressure sores. That is right decubitus ulcers.

The last few months ( OK maybe year)  we have been dealing with one on our foot. It stinks!

The curve of his cute deformed feet are actually a bony contracture and it causes pressure. The more we wait on his surgery the more contractors he will develop. But we have gone in to have this pressure sore looked at a few times and have been able to stay in office with our pediatrician. With surgery coming up, Dr. Emily ( the Ortho) needed clearance from our Pediatrician, neurologist and neurosurgery. We got 2 of the 3 super easy but needed a full check up with the pediatrician.

Dr. Carrol didn't love the look of our current pressure sore so he sent us to a local Podiatrist to have it taken care of. He said it would heal faster and that he might be able to get us a hard boot for Tyler to use so he wasn't walking on his foot. We didn't need the boot because we got our brace ordered from Bret ( the next post!!) and so we really just needed his sore taken care of.

In order to have surgery no open wounds can be on his body. So this was a big deal.

This is what his sore looked like the second day and before we saw the podiatrist:

This is what our pediatrician saw and this is what I saw and this is what makes me have anxiety. this is not OK.  Pressure sores can be so so bad. 

The podiatrist took a scalpel and literally shaved off the dead skin layer by layer until he got down to fresh skin. He showed me how to clean the edges every night, how to file it down and how to fix it so that we have little to no rubbing on a regular basis so that he can still wear a shoe and brace. Until we get his feet fixed I have a feeling ( even after) that this will be an on going issue.

At night we get out our "boo boo kit" and work really hard to do our best so that Tyler doesn't cry over his foot hurting. Ironically this is about the ONLY thing that he has continually talked about as hurting. It is really sad.

Me and Dr. Grayson gear up to take care of these feet.

And I get my gear on to not infect the wound- 

The pads are to keep pressure off, the band aid is so that Tyler will stop crying. I then make a magic spell up and put on magic socks to keep Tyler from pulling this stuff off. It rarely works but it is a start. 

Last week we got Tyler's foot clear! We were down to a PIN HOLE and we were down to using an emery board on his feet only. No edges were needing to be cut. Thursday we were discharged and we were to call if anything came up or we needed a shave in order to look even better.

Today.......... WE HAD TO CALL!!!!

To be continued.......................

Orthopedics- CHECK

Ty has this thing where we make a list, we talk about the list and he “checks” it off.  It is kinda funny to hear him say it, and he even does it when he is all by himself.

Example : “ Mom what are we doing today?”
        Me: “ School, doctors and then home.”
        Ty : “ School- Check, doctors- Check and home- check”

The lists and checking could go on for hours. He loves to do it at the end of the day, when we have a HUGE list to check off.

After our trip to Utah and I was horrified as to how loose his legs were and our appointment with the new physiatrist, I got some opinions of other moms of CP kiddos and decided that we really needed to see a orthopedic doc to make sure we weren’t hurting anything in the long run. And that the end result was what we were looking for.

We made an appointment for the new CP clinic that Dr. S is putting on at PCH. But, what we didn’t know, was that you had to be a established patient. So we got put in the day before the clinic. I was a little disappointed but found that this was the FIRST one!

Dr. S was AMAZING! What makes him so much cooler, is that he has 2 kids with CP. They just turned 16. He has sat in our seat before and he was so easy to ask questions too.

He was concerned about our course of action with persistent phenol. He doesn’t love it. We have found that most don’t and we are kind of on our own. We can’t find a doctor down here that does it and so we do have to go to Utah for it. So we are looking at some other options.

He was concerned that we were not seriously looking at any types of surgeries to help loosen his muscles. But the biggest concern is his ankles. His toes will always be the way they are and they will always be a little deformed but overall he really needs stuff done with his ankles to improve the quality of life and walking.

Another big concern is that we have not ever had xrays of his hips. We did ONCE when he was a baby at Shriner’s but no one has ever mentioned it before. This kind of freaked me out. My friends kiddo had surgery and it did not look pleasant so I was not looking forward to the idea that we overlooked something that is kinda big.  The other big concern was that I was not expecting xrays so I didn’t bring another person to hang out with Grayson. Since they wouldn’t let G stay in there I had to leave Ty alone.

We went to the xray room and Ty climbed right up and talked to the lady and was so so so good. I was a little worried about leaving and stood outside the door waiting for a cry or a scream or something and it never happened. When they came out the door, Ty said mom, that was awesome and I can spell xray. He handed over his sticker and we were done.

His hips are OK. Not perfect, but OK. They don’t think that we will be needing surgery on them any time soon and we are OK. So really the only thing they want me to think about is the Heel surgery. We all have such a different idea of what to do. Every single doctor we have seen in the last 2 months has a different opinion.

We left the appointment feeling pretty empowered. We headed towards Tempe where our dad works so that Ty could go to the beach. We used our stinky diaper plastic bags to gather up a rocks and we had our left over lunch to feed to the birds.

We had a great time. Ty and Grayson chased birds for a while. Dallas was happy to see us. I was able to go to a Relief society activity that was very awesome. So it was a good day.




Good information, good day, great kids.


Very Thankful.