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!

Tales of the Woes... I mean Toes :(

For those reading you know that Ty is almost 2 and a half ( and we start transitioning to preschool in a week ) and still thinks that crawling is the way to go. We are working on using the walker but temper tantrums are frequent right now. Frankly, it is just getting so frustrating I am getting a little discouraged.

Ty is obsessed with going outside. Thank goodness I have my respite worker here during the day because he makes me exhausted. I digress, Ty has spent the last several days at the park. Then home for a nap then off to therapy for an hour in the pool. Well, during his park time the last couple of days he has gotten VERY frustrated. Not sure what he gets frustrated at but I have my "ideas". His body doesn't move the way he wants them to. I get tired lifting him onto the top of the slide... the list goes on. So instead of using words to vocalize his anger crawls over to the squishy black stuff and bangs his head on the ground. That leaves a nice little road rash scratch on his head. Its not a great picture of the road rash on his forehead but it is there. Poor Bubba!!

Every time we put him in his walker he gets upset and throws a tempter tantrums. Sometimes that makes it so he throws himself backwards and tips it over on himself. It makes him less likely to get in it the next time. It also makes him start to crawl on whatever cement or black top there is around trying to get away from the walker. Leaving a nice scrap on his knees OR a hole in his shorts. We have now gone through 3 pairs of shorts and it is only April. It is going to be a long summer!

Due to his obsession of going outside sometimes he crawls in and out of the back door. Due to this obsession he sometimes doesn't have shoes on. It has now left road rash on his poor feet. When we try to put socks on it bleeds and he cries because it burns. Not to mention the pain of putting on those afo's that are suppose to help him. He won't put on sandals either because they brush right on his owies. The road rash is the red part on his big and 2nd toe. The other "dirt" is a bandaid that didn't come off. Seriously this stuff bleeds. Any suggestions?

And last but not least... Because of his water obsession and the fact that he is the cleanest kid in America and takes a million showers AND his water therapy he is suffering from a horrible case of Eczema. It looks awful and the rough red patches are found all over is little body. He is covered in steroid cream. Poor kid. His leg has cream on it in the picture but he is as dry as a bone.


OK that the tales I have to tell. I feel so bad that my little guy can't walk. He is such a fighter. I just wish that there was something more I could do to help him. I wish I could make it easy for him

A new day!!

Yep the rant felt good. The sad thing, doesn't change a darn thing. So here I am sporting the herpes look, feeling tired and worn down and all for what...

I will tell you for what....

Today was the warmest day of 2008!! Yep, its getting warm for us here. I am SOOO glad. Yep, the summer is a freaking sauna but for only a few month. After that BLISSFULL YUMMY!!!

So today our respite worker took the Bubba out to do his favorite thing in the WHOLE world. He went to the park. He LOVES the park. His mom can't lift him up the slide right now but Franicisca ( his WONDERFUL) respite girl sure can.

They came home ( I was napping... see above.. I swear I just sat down) and he went to take a nap. After the nap ( Both of our naps) we tried to eat some lunch. In the below rant I forgot to mention our lack of eating going on. Todays lunch was chips.. We tried a sandwich, hotdogs and beans, pudding and all that would go down was Doritos. Ty and I stayed out and played with Francis. Ty blew bubbles and he is almost out at this point but LOVED it and would laugh and clap.

I decided that we needed to cool off and eat a yummy push up push pop sorbet. He LOVED it and was a mess.

He oh so totally picked that up and ate it... Yummy!!



A bath was needed as he had sand from the park and his sandbox. He loved it and laid in the water for a few minutes. We got dressed again and put on his braces and headed outside for round 2. We are missing a car ( again part of the "rant") and so the garage was empty and we set Ty out on his way with his push toy.

After screaming because he had to wear his braces we got him out of them and he was off for another hour throwing rocks and just being Ty. He had so much fun. He came in and we cooked dinner which he didn't like and again ate pudding and doritios and carnation. Poor kid. But he had a blast and probably won't starve... Probably!!!

Hopefully the weather stays perfect for awhile. We are hoping to get Ty into swimming lessons this year and we are hoping to spend long enough that both of us get nice tans..

Very unsettled

A few posts ago I posted about being settled. While I am settled with Tyler I am not settled emotionally any more. I am not sure how long I have been unsettled. I am not sure if it s a new thing or if it comes and goes but one thing for sure is that I needed help and I got it and I am excited to keep it going.

After discovering some mean horrible things I decided ( after much crying and though) that I needed me time. That meeaning no more enmeshed family. No more over involved family member, grandparents and sisters. No more phone calls, emails or responses to anything.

I am still on the depo lupron and am on my last month and have been way more emotional than I have ever had to deal with. I started some new medication and hopefully that will help me out a little more.

I started back seeing a therapist. She specializes in PTSD and I really like her. She has helped alot even after one visit.

I started weight watchers and lost 3 pound this week. And while out for the meeting made an impulse move and got a pedicure. I am looking forward to a little me time on friday and plan to go tanning.

I have used my respite worker a lot and will use her every day this week. I am getting ready for visitors next week and she is going to entertain Tyler while I scrub, dejunk and make my house more stress free.

I am looking forward to fixing me. To making me more settled and to do what I need to do. I am not that person that my family has made me out to be. Those who have claimed to be friends with me and have hurt me don't be surprised if I don't let you in. Don't be surprised if you find yourself talking to a different person.

I have been a little to hurt this time. ...


As far as Ty is concerned we have been super busy and it won't let up.

Monday we went to foundation, Tuesday I had my meetings and toe painting, Today was PT and we cleaned the bathroom and walk in closet. They are dejunked and beutiful. Oh and we had an eye appointment for Ty. Thursday is OT, and eye therapy. He is going to be working on feeding himself and scooping his food. He can get it in but not scoop it up. Resptie will be here and I am hoping to be done with my room and most of Ty's . I hope that D will be able to do the office this weekend. Friday we drive into Pheonix and work on his braces again.

Don't worry.. I still have to work at night and I am dealing with the mean and horrible people there. Things are getting better though.

I will be ok!! I will be ok!!