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. 

Fun Friday- With Decubitus Ulcers on top

We try to make every Friday something that Tyler and Grayson can work toward. Usually it is a good activity like Bowling or swimming or some place or thing they have worked towards doing as a family. If he has days at school where he won't do anything or he yells ( turns out he yelled at his teacher and told her to shut up last week at school haha!) he doesn't get to do his fun Friday activity.

This last Friday we thought we would go swimming at a heated pool. He had to work for it. He almost lost it.... twice. And had I seen the paper that he yelled at his art teacher I would have said " Um no!!" but I didn't.

So after Shriner's Hospital we headed to the pool. We also picked the COLDEST day of the week to go but we had a good time. We took our neighbor friend, Sawyer. Grayson adores Sawyer and Tyler is a fish. He just goes and goes and does well in taking care of himself on the slides.

My sweet Grayson who just wanted to run and scream in his Paw Patrol Pants. 

Tyler and Sawyer. Ty was climbing back UP to the little slide.

Tyler soon decided that the regular slides were not enough for him so he asked to go down the big twisty slides. So him and his worker, Ciera, climbed up to the top 5 times and and he went down and LOVED it! The water was not overly warm but it was heated. But it was only 77 degrees outside. For us Arizona people, that is COLD!! We were super duper cold. Once Ty got cold his foot instantly turned in and he started walking on the top of it again. He was dragging it and just walking wrong. I carried him a bit, and Ciera carried him a bit. 

A side note about Ciera-


Ciara joined our little family over a year ago. We made a schedule with her that worked for all of us. And for some reason we have embraced having her here and we feed her for dinner and we do our night routine after we all have had dinner. So we sit as a family with her. She prayers with the boys, she eats the food. She helps with the boys and she is fabulous with Tyler. She climbed into the pool with him and cradled him around and just talked to him and did all that he wanted to do.

I feel truly overly blessed to have her working with our family. In fact, we have always been blessed. The last 2, Kelsey and Brynne we have LOVED them as well. Kelsey was just in a place she needed no  extra stress or hours and Brynne needed better and different hours. But for Ciera we work for her. We have hired some help for Ciera this summer but no one can take care of Tyler like Ciera can .

After we got home from the pool. Ty said that his foot hurt, but we got dinner going and did our dinner thing and didn't think much of it

Mother's day weekend came and Dallas asked me if I had seen his foot. I said I had not. I didn't look at it till Sunday and I freaked OUT!! His entire foot is open and back up to worse than what it was 2  weeks ago.

So that brings us to the Pressure sore.

When Tyler's feet got cold, he started dragging his foot and he peeled off a good chunk of his foot. So back to the podiatrist we went. we was really worried about it. But we went in and they opted to fix it with a laser treatment 4 times in the next ten days to get it to close faster. We do Antibiotic ointment and some bandages, after school we leave it open air so that it can harden up. His poor feet are truly the only thing he complains about.

This is the new sore. The Dry patch and the "spot" was the big one from yesterday's post!

So, this week we are praying that the wound heals fast for Tyler's foot. That we can do our best to keep it small enough that our surgery won't be postponed. 

I think we will keep our Fun Friday to bowling!