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.......................

Bumble Bee Ranch

We have been in a group called HOPE KIDS since Tyler was really little. They even have a Utah Chapter that our cousin Kayden, and Noah are a part of. In Arizona all of the activities are a lot further away than we are use to, but we try to make a few of them.

A few weeks ago we went to the large party at Bumble Bee Ranch.  Where we were welcomed with amazing volunteers and food and lots of fun things to do.

Bumble Bee Ranch is pretty far from our house and took about an hour and a half to get there. And trust me, my children do not travel well. The last ten minutes of the drive were on unpaved roads and that helped with the fun bumping of the ride. But we were happy to get there.

The morning of the event a huge crash shut down the freeway on both sides of the freeway so we even had to find the alternate route to get there. We were rebels!

We got the list of things to do for the day when we checked in and headed over to eat before we got going on events. Some of the things on the events had a long wait and the boys weren't interested so we got their list and decided on what we would do.

Ty wanted to ride the "Bucking Bronco" so we waited our turn on that first. He loved it. Dallas had gone to get sunscreen so that my vampire white children wouldn't get a burn, even with the overcast day! While he was gone we got on but didn't ride. But as he walked up we started riding our Bronco.

Tyler was so excited and loved it. LOVED it. He kept wanting to go higher but they were a bit worried   that he wouldn't be strong enough to hold on much higher. But we tried it a few times. He was so funny. He told them he was flying and he was higher than the birds. He loved it and the volunteers were so good to him.

 Dallas wasn't so sure that Tyler would like it but he did. He loves things like that. Which is a weird, far cry from what he use to be like a few years ago. He is such a brave kid. The most talked about thing that Tyler wanted to do was ride a horse. The first time Tyler rode a horse was with his Grandpa at Wheeler Farm. I always thought that all my kids would be riding their first horse with their Grandpa, but that wasn't in the cards for Grayson.
         
Far off in the field  was the biggest little boy in the world. My little baby was riding a horse. His dad was with him for the first of the ride and we swapped so I could get some pictures of Grayson.
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Grayson is a pretty solemn kid. He has a great personality but sometimes drawing him out of his shell takes a little bit of work. This horse had him smiling and he was so incredibly sweet with the horse. He kept petting her and saying that she was pretty! He was so, so happy!

He is so in love with doing something like this. He enjoys it so much and it helps me see into this little difficult child. We are definitely looking at ways to keep this kid drawn out like this.








Next up Tyler was determined to climb the rock climbing wall. He of course, knew that he was full capable of climbing clear to the top with no help so off he went. With some minor adaptations he was able to get up as high as I could keep his feet on the handles but he loved jumping down the wall.

I have always wanted him to try, even going into it we knew he would "fail" by most standards. But a little bit up the wall was enough of a win for him and for us.
(Some day I will be super skinny for all the lifting I do for both of my skinny toots. My arms should be like NOT flabby!)
 
Grayson again, loved this so much. He loved being up in the air and as high as he could be. He was not able to climb it all on his own but he also had a good time. This little boy could live outside in the dirt and the gunk and the fun things with horses all day!

Bumble Bee Ranch was a great successful trip. We probably couldn't go much further than that with the boys for a while. Grayson is the WORST rider. We will be looking at medical flights only for a while.

The past almost year, that I have been working with the Mesa United Way has been so good for me, but being with these little munchkins on the weekends has been far more rewarding or as rewarding as helping those in need. I feel like my need for these 2 has been growing with no way to satisfy it. This for sure helped that out.

We had plans the next weekend to do Sky kids, but I got the super flu that as been hanging around our area and hope to be back on their flight schedule in November.

Easter is coming up and as a social media outlet I wanted to just add a quick note of testimony at the bottom of my blog.  The #becauseofHim movement has me realizing just how important family is. Creating this little family of mine and embracing the joys and lows is part of the plan for us. Infertility was not what I had planned and it robbed me of what I thought my family would be. It has even torn apart my extended family. But this is my family and I want them to have the warm, loving and caring things that I can provide them with. Families, They are forever! 

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.