It's not easy being green....

Ty's feet had a rough go for a few weeks. Something about his feet were making a HUGE stink. We could smell him clear across the room. They were so gross. We tried everything we could. We even put him in his cast galoshes and put him in the tub and SCRUBBED... But we might have made the problem worse.

A few days after the big scrub down the smell got even worse. With a phone call to a friend in Washington DC a little bird put a thought of infection into my head and I called the doctors office. The doctors office blew me off three times.  Finally the last time they decided that we could come in and they would take a peek and see if maybe his casts had gotten wet or there was infection. I told them the stinky foot was the one where we had done the most work on his feet and his tibia, but that didn't sway them to take me any more serious.

After a convincing 48 hours of waiting ( meaning I called and left a message and it took 2 days to get back to me) I was able to get them to agree to see us right after lunch. The cast dude came in and got us and got us started in taking off the stinky foot to see what was going on.

Dr. Emily was summoned and I joke with her that we smelled funky but come on in... and then the big reveal happened. Tyler's foot had gotten so wet that his foot had some how grown mold all over his foot. Not just mold but black and green mold. It was HORRIBLE.

This foot has the most work done and the most plates and stitches that are under the casts and I was horrified when I saw what was under the casts. So was the Doctor.  She admitted him to get antibiotics for the afternoon while we got his feet dried and scrapped. He was one mad dude. 

The white stuff is the wet feet stuff. The black stuff is mold and dried blood and the green stuff is mold. We cleaned around his incisions. We re taped his incisions and she inspected his foot. She rubbed antiseptic stuff on it stuff on it, waited for it to dry and the other foot was taken off. A small amount of mold was on the other foot and we started the process again. Grayson was there and I didn't get a picture of the other foot but did get a picture of them working on him. 

After about 6 hours we were able to leave and go home. Tyler was put back in casts for the remaining 2 weeks. He opted for Green this time. He said it was for Oscar the Grouch. Not sure that he was really aware that green was GROWING on his feet.  In 2 days we get his casts off and as soon as we get  them off we run down to our favorite orthotic people and recast ourselves for a few minutes while we get our new braces done. Tyler has to stay off his feet until we get our braces off, but we are hoping we are able to at least start moving a little.

At least now we can "legally" have a bath and enjoy a bit of bubble baths while we get ourselves ready for school in 2 weeks!!!

Day 4- Monday- Memorial Day May 26

Monday was the big day. My dad came up as usual but I was not going to be going home until we got everything we needed done. I needed to talk to the Doctor to get all the information I was going to need to get us home and what was going to happen at home. We needed to get him up and going and I wanted to see him off his electronics. The iPad was a great gift that made it so he survived his surgery.

Grandpa and I convinced a crabby pants Tyler to put his iPad down long enough to go find something to do at the kids zone. I had heard it was a pretty cool place and I was hoping that he would at least be willing to play a bit.

When you get into the play room they have to verify with your nurse you are allowed to play. We had no problem and only one restriction..Stay in your chair. We headed back to the video game section and we tried to play Mario Cart in which we lost terribly. It was awful.

We were very excited to see the air hockey table be open. Air hockey is one of his favorite things to do. So we played with it for a while. Pretty sure that Tyler kicked Grandpa's trash!

We moved on to play a game of pool. But his poor coordination allows us to make up games called Pool Bowling. He loved it. He did a few rounds and then was ready to go. He was getting tired by now so we went on home to our floor on the 8th floor.

I was left to call the home health company to be a mean mom and get our chair there. It was the ONLY thing that was keeping us from going home. FINALLY we were ready to go!!!!

Dallas stayed home with Grayson because we were suppose to be home MUCH earlier than we were. But we were up waiting for the LAST thing so I told him not to come up. It took us forever but we got us home.

We were SO SO glad to be home!!!

Surgery Day- May 22

Tyler was one of the first cases that day. We checked in bright and early at 7 am at Phoenix Children's Hospital. Grayson stayed home with my dad, who came to help. The surgery was slated to take up to  8 hours. The list of stuff was long and the doctor was doing it solo. We knew all of those thing. So we prepared our self for a long day.

When surgery started, Tyler was wheeled back happy as could be and he didn't cry. I didn't cry. This was the first time in 9 years that I didn't cry when they took him away from me. They took my cell phone number and Dallas and I went off to find a place that was not a closed in, stink room of grossness. I had remembered from our previous stays that each floor had their own family rooms so we went off in there. I slept a bit but we had numerous texts from our  friends and family. ( Thank you to all who sent them and all the love and support we felt while there) They were very much appreciated. As we got settled in, we were called to run to the 4th floor, Surgery floor, and resign papers. There was a change in plans and the entire surgery is changing. ( Anxiety and our hearts were beating pretty dang fast!!)

We took off and met our surgeon and resigned papers. We agreed that what she was saying was OK. And that no matter what the outside stuff showed, under anesthesia he was a totally different kid and she knew exactly what she needed to do.

We signed.
She left.

The plan was to call me every few hours with an update so that we knew what was going on and what was happening according to plan and where we were by means of extra blood etc. An Arterial line was placed to keep his blood in check so we wouldn't have to transfuse. The nurses were right on in calling and we were kept very up to date.

At 7.5 hours we got the call to head up to the fourth floor and we could met with the surgeon. Dr. Emily came out and went over all that we did and all that we didn't do. A nurse from recover came to get us before Dr. Emily was done talking to us. She was a bit surprised and I am not sure she finished. I felt like I flew out the door to see my kiddo.

Dr. Emily was a bit surprised that he was awake so fast so she went with us to take a peek. Not only was Tyler awake, he was NOT crying and was asking for his mom ( and dad but mom is a sucker!!) because he " Wanted to go play basketball and a Dr. Pepper."

Did I mention he didn't cry!!? I cried!!! He looked so, so good!!

We were only in recovery for about 45 minutes. We called Grandpa and let him know the plan. We had Grandpa and Grayson come up for a little bit to see Tyler. Grayson was a bit concerned that Ty was in the hospital but Grayson did GREAT! Dallas left with my dad that night and I stayed up with Tyler.  Tyler had a pretty restless night.

The nurses and doctors had a issue getting the medicine that he is normally prescribed sent up to him to sleep. So he was up all night. They kept getting his Valium flagged and they were upset over the dosage of his seizure meds and he had no baclofen. There was no muscle relaxers!! The night was so insane. INSANE!!

 I was thankful for day one to be over!!!

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. 

Orthotic Specialist- Bret

During the mess with Tyler's feet we went to get a temporary brace on Tyler's feet. We have the BEST place to go. We were first introduced to Bret and Barb when Ty was just a baby. Shriner's used them when we first started using outreach. They did our very first pair of Orthotics.

I called Bret and asked for ANTHING that would keep his foot from turning and making the foot worse and make him walk on the top. Bret quickly worked us in and we had a great experience yet again. We love them .






The brace was temporary but we hope seeing these people last forever11

Orthopedic Surgery- Again

After our initial visit with Dr. Emily, I became the best researcher in the entire world. I can almost guarantee you that any mother with a child that just got a surgery name, a lab test, a diagnosis etc, does better research than the FBI! You can't underestimate what things we WILL find. And sometimes it takes us to another planet to do it, but we want all the information we can.

So I started with Tendon and Cord Releases. Tyler is MUCH older than 2. But he also is a lot more mobile than most kids with CP. Next, I went to therapists that we had. Tyler's PT, Sam, also had a patient that was looking at needing some orthopedics surgeries done as well.  So we exchanged information.

A surgery that is not new but is new in the CP circle is a surgery know as SPML or Selective Percutaneous Myofascial Lengthening. The surgery seemed like it could just be an answer to a prayer.  However, only 2 doctors in the entire United States do it. One doctor founded the surgery, the other was trained by the founder. I read all I could. And made a list of questions to ask Dr. Emily when we went back to see her when she got our Gait lab studies back.  I joined a group of people who had the surgery done and needed to see what the responses were.

I researched PERCS or tendon lengthening procedures and SDR , or Selective Dorsal Rhizotomy. Both of these are still surgeries in which he may have to have in the future but it will all depend on how well he does and how well his body responds.

The final option that I researched was called a Single Event Multi-level Surgery- or SEMLS. This one is a little more invasive and I really liked what the SPML offered by way of cuts and quickness in getting the kids back on their feet. I also talked to another mother about the surgery who had done it on their daughter. It was only one leg and she gave me so many things to be hopeful about. My issue of the full care and no mobility was really bothering me. She helped eased my concerns until we found out he would NOT be able to move like she had. IT was VERY hard, but she was so kind in answering so many questions. But, we couldn't know anything about our options until our update and report for the gait lab.

The report came in and our appointment was made. Tyler was quickly going down hill as far as his foot was concerned. He had to have his muscle relaxers upped and he was falling asleep in school for several hours. He was crabby at home. It was just bad. And to top it off, we were still without even a temporary brace.  And we were without a plan!

Dallas took the time off work to go to the appointment because he had a lot of questions as well. This surgery is literally HUGE! No matter what, we have to do something, but it isn't going to be the easiest thing. It also takes away so much for Tyler and adds on an extra load for me as the mom and as a family as well. Every single person in the family will be impacted by doing a surgery on Tyler.

At the Hospital we were checked in, weighed and I was nervous. So nervous that I was so glad Dallas was there because I was not able to be where I needed to be. This is also where we learned that Tyler has FINALLY gained 1.5 pounds. That is the first legit weight GAIN in 3 years. We were loaded into our room and then we were taken for X-rays. Grayson and I sat in thew waiting room looking at X-rays on google images ( we were selective but dang.... those are funny!) Tyler had a TON of X-rays and Big Bird did and Tyler got Grayson a sticker or 2.

The appointment went well. I ended up in tears multiple times. His study was done and his lab was looked at. His hips are fine ( THANK GOODNESS), he doesn't have Scoliosis ( thank goodness), and he is still small and has not hit puberty yet (Hooray!). The bad news: when combined with his gait results and his X-rays the option for surgery was pretty much taken off the table. Before it felt as though there was an option of yes or no. Now there was a much heavier air of " We need surgery and NOW. Now to figure out the best one.

I asked about the SPML and we weren't even able to qualify for it, and I kind of felt laughed at for asking.  The best bet for Tyler would be the SEPML or the Multi level surgery. With the gait lab and X-rays and how his legs work and how things look when that body fires, it fires in all the wrong place  and at the wrong time and it just makes for a terrible looking walk in all the wrong places. It also makes it look really VERY painful.

At the time of the appointment Tyler and his feet were so bad that he was literally walking on the top part of his foot. it was REALLY bad. He also NEVER complains of pain, and he complained everyday. I thought for sure that we would still be sent for braces but we weren't.

We got all the questions answered we could think of. The ins and outs of the surgery are this: Tyler will have whatever tendons and cords released that they think he needs when they get into his legs. His femur will be rotated on his right leg. They will put a plate in it. His feet with have some reconstruction done on it, but to what extent we just don't know until they get in there.

Recovery time: 6-8 weeks non weight bearing. Casts. Wheelchair. He cannot, CANNOT put any weight on his legs. So we will be adding a few new workers to our house. ( If you live in Arizona and need a job!!!! Holler) Tyler will be in the hospital for 3-5 days. After the 6-8 weeks, he will have therapy 3 times a week for the next several months after that.

Summer time this year is only 6 weeks. Tyler's surgery is going to be on his last day of 3rd grade. Hoping to get this all done for the summer makes it so that we will have a loner surgery time. Total Surgery time will be 6-9 hours. It will be over a holiday weekend.

That was a lot of information!!! And dang... Surgery stinks!!!

Orthopedics and Oncology- All in one pretty package!

Mid February I called to get into one of our many specialist to get a script for AFO's or SMO's or something to get Ty braced. I was hoping to get it done before anything drastic happened. We visited with our Neurosurgery first in hopes that we could easily get the script and head off to Brett's and be done. But Dr. Shafron had other ideas.

D. Shafron felt that it was time to talk baclofen. And not just baclofen pills but baclofen pumps. He didn't feel that he could write the script for the orthotics but really wanted us to do the baclofen trial. He checked our weight and was excited to see that Ty qualified for the pump by about 4 pounds... YES 4 pounds. This thing looks like a hockey puck in their bellies. I have not wanted to even do the trial. We were even offered the trial in Utah and I just couldn't do it.

See- This is NOT going to fit in my kids belly. He is so, so little.  The other problem is adding another foreign body in his tummy makes me want to throw up a little. Adding his shunt into the mix is something I do not want to do. Adding a shunt and the pump, puts his shunt at a 90% failure rate. That is not something that I can do to him. I just can't do it. 

I tried to politely decline and he said I could call Marie, his nurse and set it up any time I wanted. Then I of course, did a shameless plug for the Hydrocephalus Association and our WALK and he said he he would get his office staff involved and he sent us on our way.

Since he wouldn't give us the braces I needed to get in with our Ortho doc. Low and behold we found out that our beloved Ortho was leaving. I was devastated. I might have cried just a little. 

Dr. Shrader has been the BEST orthopedic doctor ever. He is kind and patient and sometimes he just sits there after he talks to us and lets us cry and offers us a side hug. And he says "I understand" and he doesn't just say it he means it. You see. He has triplets. 2 of them have cerebral palsy. They have gone through summers of the same surgeries that he asking us to go through. He will walk you through everything that you ask of him.  But you see, these triplets, they grew up and are going to college. And he has done such a great job of raising them that they are moving back to Mississippi. And they are going to continue to grow and strive and him and his wife are going with them.

So we saw who he recommended. Dr. Emily. Dr. Emily is a very nice doctor. First time we met her, she was running late and we were tightly scheduled with oncology downstairs with a transfusion for Grayson. It was our last one and we just kinda wanted to get done. So she came in, and she said he needs surgery. Bracing won't work. Bracing would be stupid. I am not writing a script. I was SO mad and got SO defensive. She didn't want to tell me exactly what she wanted to do right then because she didn't have the results of his gait lab. So she scheduled another appointment and sent us downstairs to oncology.

Oncology just SUCKS. Grayson was there for his final FINAL appointment and we did do blood and a small infusion just to finally get him up to where he was finally on the scale. But we were there in he time of needing to wear masks and it was just a MESS.

Trying to keep masks on a kid with sensory processing disorder and a 3 year old is nuts. But they did a great job. We left after the infusion. Stuffed our faces with muffins and left. I always feel DEPLETED after a trip to the hospital.

We made another appointment for Orthopedics while we were there and we were allowed to pick up our BIG HUGE TOY and Grayson batted his eyes and got Tyler a BIG HUGE TOY too. ( Let me tell you, 4th floor gets NO toys. We don't even get freaking stickers up on the 4th floor, but the oncology floor, you get SETS of toys!!......) Grayson was released to go and get his blood tested monthly with his pediatrician and he was so relieved.

I do have to say, having this experience with Grayson has cause some major damage to his little brain. He is HORRIFIED of hospitals. He is OK going with us for Tyler. He is fine with watching things happen to Tyler but to take Grayson in for an appointment for himself is literally the most devastating thing that I have seen in a child. Tyler has had 100's of procedures done on his body but he doesn't have the same anxiety that Grayson does. When I was asking for advice from some moms in a sports group, I was flat out told that Grayson wasn't old enough to remember that I would be gone or that we would be at the hospital with his brother. That is by far one of the most false statements about Grayson.

Grayson has anxiety and starts to cry when he sees show about hospitals on TV. When Tyler was hospitalized back in November, Grayson came with me to check him in and the nurses were upset because Grayson was not old enough to be on the immune- compromised floor.  But he wouldn't leave my arms. His dad was on his way, but he was so anxious.

Novembers Overdose and hospitalization- 

 His dad said he didn't leave his side as they were leaving. When they got home he wouldn't even let his dad leave the room. This lasted for 2 days while we were in the hospital. While it might not damage some children, Grayson is VERY tenderhearted.  So for Grayson and this release from the oncology ward was HUGE. For Grayson for this upcoming surgery is DEVASTATING.

*For those that TRULY think that having a special needs child and having them have physical disabilities with major surgeries often ( and I don't even think we have had it OFTEN) It truly does impact the entire family, but it impacts the siblings of our special needs children. We often refer to our Special needs children as super heroes, but the overlooked heroes, are those who stand by as the sibling watching and being pushed aside.*  ( Sorry a HUGE, TALL, Soapbox!!*

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.