P.S.

I forgot to tell all of you that I couldn't find Myles the other night. We all started panicking and running all over the place looking for him. Here is where he was, under my bed and sound asleep.

Wonderful News!

I don't know if you are all aware that buggies hit his million dollar cap very quick in ICU. I was looking at owing in excess of $270,000 to the University of Utah. I just found out that Myles was qualified for the Katie Beckett Medicaid AND THEY BACK DATED TO JAN 07!!!!!! This means that the state will pick up all of the medical expenses that were going to be owed by me. What a tremendous weight that has been lifted off my shoulders and removed from always being in the back of my mind. I am still crying as I write this. I won't "loose the farm" after all. Katie Beckett is for children who have a catastrophic medical need and boy does buggies qualify. His hemophilia factor alone right now is averaging around 8,000 dollars a week. I AM SO HAPPY ABOUT THIS and wanted to share it with everyone, one less thing to be dealing with.
Love to all,
Sherry

Normalcy

Yesterday was an unbelivable day.... Myles playing with his friend..........Aaron and Tuyet on a raft enjoying the beauty of the lake that we live on and me in the kitchen, enjoying what I do, cooking. We propped up the trailer in our yard and played pictionary last night, Myles and Aaron are totally unbeatable. They seem to have this Volcan mind meld or something. Myles draws a line, and Aaron guesses the empire state building, and it's right, whatever..................I think they cheat!!! Sometimes it's hard to have a good day. It makes the reality of this seem non existent or gone. But it is not gone, just for moments, which we cherish. Wound care this morning was exceptionally hard with having such a good day yesterday. He has a few painful hemotoma's under his pressure gear. Aaron seems to be very solemn today. It's amazing how things can change in one day. We are blessed...........I used to say how amazing that things can change in ten minutes not days. We are doing better. I am scared for some crazy reason when things are good as it seems to make the rough times harder. But there is another day.

GREAT DAY AT SCHOOL

Hey All,
Myles had a great day at school yesterday. A lot of the kids were waiting for him in anticipation. I think that he is a little overwhelmed with the attention but handled it very "cool". I gave him pain meds in the morning (just in case) and it seemed to work well. He was actually sad when I picked him up at noon as he wanted to stay for the rest of the day. I think that he enjoyed his friends and was AWAY FROM MOM for a while. Speaking of mom, I was a mess, total separation anxiety as I have not been away from my son at all since the accident. We were talking to the counselor about what to watch out for and I heard the bell ring, when I turned around to tell buggies to have a great time, he was gone, I panicked. I recruited two of his best friends to be his body guards in my absence at school and boy did they fit the bill. You would of thought that Myles was the president or something and they were secret service. What made it so cute was that neither one of them is much bigger than bugs. I contemplated just sitting in my car in the parking lot for three hours just in case, but realized that I was being a little over protective. So I went to Home Depot down the street from the school and walked every aisle and spent quite a lot of time in the nursery. The phone rang while I was there and I saw that it was the school!!!! Panick doesn't explain............It was the nurse who just wanted to ask me a few questions, what a gal. I went back to the school and sat in the parking lot after that. Separation anxiety, you think??? Buggies actually took the bus today and I seem much better today than yesterday. I don't even think that I was that bad for the first time when I dropped them off at kindergarten. Well, I need to go pick him up and go to physical therapy. Maybe, and I stress maybe, I will let him go back to school full time next week if this week goes well. We will just need to get everything done that is necessary daily done after school without it being midnight.
Love to you all,
THE OVER PROTECTIVE MOM

I'm Sorry

I am sorry for my last postings. This blog site is about buggies recovery and will remain as such.
Myles received his new pressure garments today. They are red and black and he is very excited because he thinks they are cool (and they fit better than his first set). He is wearing the vest and gloves but can not wear his new arm sleeves until the issue with the blood thinner has been healed. I just talked to the school and I am going to send him back to there on Monday for 3 periods. We will see how it goes and if all is well eventually he will return to full days, if not, we will wait a little longer. He needs to get back into seeing his friends and enjoying life. Will keep you all posted on how he does.
With love,
Sherry

The Perception of Time

It has been two months ago today that buggies got burnt. I don't know about everyone else, but it sure seems like two years ago to me!

Myles is breaking medical ground

Hey everyone,
Sorry to say but we had another really hard day yesterday. Everyday seems to be so different. When one thing slows down or goes away...another seems to come up. The donor site itching seemed to be slowing way down and the blistering was just here and there. Over the weekend I started to notice that Myles' left arm was turning very blotchy red. Well by yesterday morning when we removed his bandages he had deep burgundy spider veins all over his arm and was in tremendous pain. I called the Burn Unit to see if this was a "normal" part of healing (as was the blisters and the itching) and they said no. When the pain kept intensifying I took him to the Hemophilia Center with him screaming in pain the whole way there. As you have seen in past posts, we had taken him off of the Lovenox shots and put him on oral Warafin to thin his blood. We have been taking blood tests every few days to get his Warafin to a level of 2.0 - 2.5 (INR) which is needed for a normal person with DVT. We started at two mg/day and by last Friday had increased him to 4.5 mg/day. At the center, they checked his level and it was at 2.0 mg, right where it should be and with him getting Factor IX everyday we had finally reached our goal to maintain his blood clots. Wrong!! At 2.0, the Warafin was overriding his factor and his blood vessels were breaking in his arm from the necessary pressure garment. Ten hours later, lots and lots of morphine, a CT scan, and more morphine, the decision was made to take buggies off of the blood thinner completely as his grafting and donor site healing is the most important issue right now. We can only hope and pray that the blood clots like where they are and not migrate. He will be on oral morphine for a few days to help with the extreme pain he is in from his arm. The morphine does make him itch terribly but I think that he can tolerate the itching more than the pain. It was very hard for me to see him in so much pain yesterday as I thought that maybe those "extremely painful days" were over.

I know this is a lot of info, but Myles is breaking into new territory for doctors, around the nation, regarding burns, hemophilia, blood clots, thinners, and treatment of the above. There are doctors here in Boise, Salt Lake City, Denver, Orange County, and the Shriners that are all following his progress to better aid in the care of any future person with hemophilia that has been burned to this extreme. Myles and I are grateful for this, but I am sad that my son is the guinee pig, God's Will will prevail.
Sherry

An Essay by Myles

I was going through some of my paperwork and came across this essay that Myles wrote about three months ago. I thought that I would share it with you.
"My heart is the object I am chosing for a bunch of different reasons. Not only does my heart let me live, it guides me and shows me a true way through life. Hearts can love, show compassion, and can be your friend by getting yourself a friend.
One may have as many friends as there are trees but that doesn't mean that they are true friends. Listening to and speaking from your heart will get you your best and most reliable friends. Don't lie or try to be someone you are not but just try to be someone your heart wants you to be.
If your getting into trouble or not doing what you need to be doing at school or at home, just turn and listen to what your heart has to say to you. Minds are deceiving and not always terrible but mischevious. And will sometimes try to bring you down. I think if more people listened to their hearts rather than their minds there will be a lot less trouble and pain.
People say this a lot and sometimes without meaning "Listen to your heart" but what they are really saying is listen to someone elses heart and do the right thing for them. So listen to you heart and do what think is right. Just remember your mind speaks loudly BUT YOUR HEART SPEAKS WISELY."
Myles Ganley

A Thorough Update

Good Morning All,
Thursday morning and Myles and I don't have anywhere to go today!!!! The week has been so hectic with appointments that I am actually very happy to not have any today. Maybe I can start my vegetable garden or fertilize my fields (wow, I didn't think that I would be doing that this year). I wanted to give everyone an update on buggies status. We had an ultrasound done last week to check on his blood clots in his legs. The clots are still there but they said that they looked "old" (just like me!). I assume that they meant that they are stabilizing and being incorporated into his body. We have taken him off the dreaded Lovenox shots that we were giving him every morning and night and have put him on oral meds for the blood thinner (Warafin). That's the reason that we have been having to go for so many blood draws as it is hard to get the dosing right. Myles, Aaron, and I have NOOOOOOOO PROBLEM with the blood draws as he still has a pic line in but those shots were painful for everybody, Myles getting them and Aaron and I for giving them to him (Thank you Dr. Johnston). He is still receiving factor every day to combat the blood thinners, can you believe it. His grafts are healing with no open wounds (and starting to scar) on his stomach and back except for the grafts on his right arm. He still has open wounds and has yet to be able to wear any pressure garments on that arm. They checked his range of motion at the physical therapist and he has really good range on his right arm and fairly good range on the left. His hands are looking great (Dr. Cochran, you did a fabulous job) except the little finger on his left hand has gone into contracture (bent and can't straighten). We are going to really work on this finger during rehab to see if there is a way to straighten it without surgery. When the therapist asked Myles what the most important thing that he wants to do again, he said "GOLF". Aaron and him tried swinging a club last weekend and Myles got really sad that he "lost his groove". I try and use this to force him to work hard during therapy by telling him that he will get it back or even better than before (mom tricks). Aaron, Tuyet (our little angel) and I all work together to get through his bandage changes (I think that they should make that a bad word or something) as his skin is still so sensitve to cold, heat, water, etc. As far as his donor sites.........the blistering has slowed down but the itching has NOT.......
Well I guess that this is enough FYI for one posting. I again can not find the words to thank everyone for their love and prayers through all this, just know until I figure out a way to express it. Love to you all. Sherry

The Healing is Slow

Happy late Easter to all,

I had to take a break from the postings for a while, it was making me sad to not have any good news. The funeral really got to us on an emotional level. We all have been so tied up in the physical aspect of this that our emotional well being had to take to the side. As Myles slowly heals physically we are starting to deal with all of this in very small steps. We had a very nice Easter day at our friends house. The nights are still tough but they ARE getting better. This is another busy week for us, Monday was blood work, today is formal physical therapy, Wed. is fitting for his pressure garments and more blood work. The majority of our days are pretty good until the itching starts. Hopefully that will subside soon as it is very hard to control and practically anything can trigger it, emotions, heat, certain clothes, physical excertion. Myles doesn't like the formal wound care or physical therapy so we usually go get some lunch afterwards.

The Doubt

We attended the funeral today of an innocent young child who was trying to save his brother. The six year old brother got up and said "My brother is my heroe". Very hard one to handle.
On the news after the funeral, a boy at Vallivue High School (the local school of buggies) reported that a kid accidently spilled gas on himself during shop class. Another student knowing that he had gas spilled on him, threw a mathch on him and lit him on fire. This kid was flown to Salt Lake City today to relive our past. The shock, the pain, the surgeries, the fear, more pain................... I'm really not sure of the lesson we are to be learning. I'm really not sure of the compassion of God. We all agreed (Aaron, Tuyet, Myles, and I) that we are going to try and be patient of his message but it is very trying. Myles is going to call the ICU burn unit to tell them that they need to give the loving care to this boy that they gave to him. Lindsey, Ashlee, STEVE, Sean, John, and MARTINI, take the loving care that you gave Myles and give it to this boy. Our cat just had five babies, that's what we named them.......... Lindsey, Ashlee, steve, Sean, and martini. We love you guys so much. Please, please, please, take care of this boy as you did buggies, with your loving care.
Is this all ever going to stop? We are almost done..........
Sherry

A Very Sad Day

Hey everybody,
No recent posts as this week has been very hectic. Everyday Myles has had to get something done, fitted for his pressure garments, ultrasounds on his leg for the blood clots, blood work up on his hemophilia, wound care, physical therapy.......
Today is a very sad day as we are going to attend the funeral for one of Myles' best friends, Eric. Eric passed away about a week ago when he jumped into a lake to save his 6 year old younger brother who had accidently fell into the water. He was unable to get to his brother and an Uncle jumped in to save the 6 year old but was unable to save Eric. Myles learned of his friends death when I took him to his school on Tuesday so he could see some friends. It was very sad that Myles had to learn of the news in front of all of his peers. I had read about the story but was unaware that he went to school with buggies, or that he was one of his best friends. I pray for their family and ask you to do the same. I also pray for the strength of the kids attending the funeral as Vallivue Middle School seems to have had too many tragedies in such a short time. May peace be with us all.
Sherry

Myles' Interview Channel 6

I wanted to let everyone know that Myles' interview will be at 10:00 pm tonight (Part 1) and 10:00 pm Monday (Part 2). They are also going to air a very short version tonight at 5:30. This is on Channel 6 ABC Idaho. You can see the interview at www.todays6.com, just type in Myles Ganley in the search column on the top right corner of the page.
Lots of love,
Sherry