Sorry I have been MIA!

It's been a busy couple of weeks and I have come here many times to post an update and then had something happen and not get to it.

David had his stitches taken out last Thursday. Dave took the day off from work and took him to Boston. I spent the day watching our friends Adam and Sarah's daughter... I am loving having a sweet baby to dote on all day a few days a week... part of the reason I have not been around!!
Anyway, while in Boston Dave called me to let me know that they thought that David either had a small seizure or almost passed out while they were taking the stitches out... after some initial panic and some observation they decided that it was not a seizure and that he must have just gotten light headed and was maybe starting to pass out. He was fine a few minutes later after having a sip of ginger ale and a cold cloth on his face.

The same day they were in Boston, Ben had his allergy testing. So I packed up the baby.. ok.. I will admit here... I am sooo out of practice at planning an outing with a 3 month old!!! But we headed to the allergists office and after all was said and done, it has been determined that Ben has a severe latex allergy.... not fish as originally thought. We are thinking now that the food may have been handled with latex gloves. They tested him for every kind of sea food known to man and nothing showed up... but the latex reaction was severe. We will have to be very careful with him and carry an epi pen at all times because you can never tell where latex will be. For instance, he has been getting hives every time he plays x-box with his brothers... at first I thought it was just because he gets worked up playing, but after looking at the controllers, the buttons are made out of rubber. So no x-box right now... I am on the hunt for controllers that don't have rubber buttons. Poor kid...

Lets see... what else around here?? David had pneumonia 2 weeks to the day after is surgery. I should have known from past experience that every single time this kid has ever been intubated, he gets pneumonia exactly 2 weeks later... you could set the clock by it. But it's been 4 years since his last surgery and I completely forgot about it until he walked in the door after school and I could hear him wheezing from the doorway before I could even see him!! I put him right on the nebulizer and called the Doctor. Luckily we caught it early so the antibiotics and steroids did their job quickly.

Easter Sunday David came inside from being out in the yard... (remember he had just had his stitches out 3 days before) He shows up with a big spot of blood on his leg so I, being the calm mom that I am, freak out and after looking at his leg realize rather quickly that he has opened up the suture lines on the lowest z-plasty! The lines are gaping open and it is looking like it need to be stitched up. I call Shriners who as always were wonderful... the Dr. recommended that we try to get him to our on call pediatrician to have them look at it hoping to save us a trip to Boston on Easter Sunday. I won't go into a "on-call" pediatrician rant right now... but the guy was basically an idiot who told me that it wasn't an emergency, asked me why I was bothering him, and told me to put a band aid on it and see his regular Doctor on Monday. The things I said to him were not pretty and I will spare you all the gory details... but lets just say I think he undertands now that I mean business!!
I ended up taking him to the local ER and the Doctors there were great... they called Boston and consulted with the Shriners docs. and together they came up with a plan that everyone was happy with. The Local Docs. were not comfortable doing anything more than steri-stripping the wound closed and bandaging it. The Shriners Docs. were ok with this and I was to bring him to Boston on Monday for them to decide what to do. Everyone was happy and we got to go home and have a yummy Easter Dinner instead of driving to Boston.
Monday morning Ben had his follow-up at the allergist to go over an emergency plan for him at 9am, so we went to that and then I drove home, picked up Jake, David, and Caroline who had no school for a professional development day and headed to Boston. 8 hours later we were back home, with the incision examined, glued, taped, and bandaged.
A funny story about the day before I sign off for today.... while we were in the exam room and they were trying to decide how to handle David's leg, Caroline was asking questions about what they were going to do, the nurse looked at her and said " Don't worry, we will get your brothers leg all fixed up" She looked back at her and said " Yeah, he was a bad boy because he was jumping on the trampoline and thats why his leg was bleeding!" WHAT??!?! This was news to me!! Nobody bothered to share that little tidbit with me before we headed to Boston.... So, Thanks Caroline for making me look CLUELESS!!! sigh....

In between all of that medical stuff... Aric pulled a muscle in his stomach weight lifting and we thought he had a hernia, and now I have poison ivy all over my ankles from doing yard work in clogs with no socks.
So that' life around here in a nutshell... or maybe its not nutshell... maybe its a dump truck...
Thanks for reading....
~Vicki

Sunday Photo Day....

Here are some photo's I have been promising... enjoy....

David's leg before his scar revision surgery

His leg the day the bandages came off...

Caroline helping to feed baby Olivia our friends Adam and Sarah's new baby.

My adorable other half..... isn't he cute?????
Ryan has always been a baby guy.... ever since he was a little kid he has loved holding babies...
The guys hangin out in the family room playing X-Box Last night.

Above are the beautiful tulips that my friend Claudia brought me last night... there is a story to these tulips... See... last year for Easter Claudia and her Husband Tom were out running errands and they stopped at one of those road side stands that sells Easter Flowers and she decided to pick out some tulips for me for Easter. She picked out some beautiful orange tulips that had yellow on the inside.

They got home with the flowers and she put them on her table until our get together the next day... she kept admiring the tulips and decided that she loved them so much that she was going to keep them for herself and get me something else. So she picked out a different Tulip for me and kept the beautiful orange and yellow ones for herself... Tom told her she was terrible for not giving me the flowers she had originally picked out for me. She decided to put them outside so that she could plant them and forgot about them over night.

The next morning Tom went out to get the paper and he comes back in the house laughing his head off carrying the pot with the tulips in it... the deer had paid a visit over ngiht and ate all the beautiful orange and yellow flowers off the tops of the plant leaving only the greens and the pot. He told her is was "Bad Charma" for not giving them to me in the first place. So lastnight when they came over, she brought me these beautiful orange tulips... this year she didn't even buy herself any! Thanks Claudia for the flowers... I smile every time I look at them!!

Chasing Dragons with Plastic Swords...

There is a line in an old Cheryl Crow song " Chasing Dragons With Plastic Swords"... that would about explain how I spent my afternoon.. Let me re-phrase it with one word...



Are you ready????





Are You Sure????




Ok.... Here goes.....







HEALTH INSURANCE. need I say more?? Ok I will....



Hows this??







Yep.. that about sums it up.

A few weeks ago I got a letter in the mail stating that Ben's secondary insurance through the State of CT is changing and we will need to pick a new plan.. sounds easy enough, right?
This insurance is part of his adoption decree.. the good Ol' State of CT is supposed to pick up his deductibles and co-pays until his 21st birthday. It usually works pretty well... we have the same insurance for Caroline but I never got a notification for her.
So... I call the 800# on the letter on Monday morning to inquire... I am promptly told that Ben' s information is messed up and they will have someone call me within 24 hours to get it fixed, I then inquired as to why I haven't heard about Caroline's policy and after a quick search I am told that she doesn't exist in their system.... Hmm... odd, I have been receiving services for her for the last 6+ years... whatever.. the rep on the other end of the phone explains again that I will receive a phone call from another dept. within 24 hours and they will get it squared away.....
that was MONDAY... Today is FRIDAY last I checked and you guessed it....

No Phone Call.

So I gather my paperwork and give them a call this afternoon.. only to be informed that Ben is listed as "Head of Household" on the policy and I will have to wait for a phone call from the "other Dept." to call me and in her exact words " I know this is frustrating, but you don't realize how frustrating it is for us, we have some 5000 calls to return!" OK.... first off NOT MY PROBLEM.... this is your J-O-B... do it already... and second of all.... Don't tell me 24 hours and 4 DAYS later complain to me about how many phone calls you have to make! So now she says in a really exasperated tone... "I will transfer you to another dept who can handle your complaint" ummm... I don't have any complaints... I just want to switch my kids policies as I am being instructed to do in the letter I am holding. So I am transferred... click... click.... followed by staticy elevator music... then click... click... and a DIAL TONE!!! Now I am beyond mad.....

So I get out the blue pages of the phone book and make a phone call to the State Insurance Advocate Dept. and explain the whole story to some poor woman named Jessica... Let me jut say right now.... Jessica is my HERO.... she took the information and told me she would look into it and get back to me and that if I haven't heard from her by Monday to call her back. Ok.. Monday.. I can wait that long... anyway, about 15 minutes later I get a call back from Jessica who says " I have a representative on the phone who can help us, I am going to patch you through and I will stay on the line to make sure you get what you need... 5 minutes later both kids are signed up for the new insurance plan with no issues at all... Amazing!!

Ok.. that's my vent for the day... I'm going to put my sword back in the toy box.

Stay tuned for weekend St Patty's Day Fun... We are having our annual St. Pattys Day
PAR-TAY tomorrow night!!!

~Vicki

Killing The Blues...

This is my New Favorite song... completely perfect for my week.... I LOVE, LOVE,LOVE IT!!!
Enjoy...






"Killing The Blues"

Leaves were falling, just like embers,
In colors red and gold, they set us on fire
Burning just like moonbeams in our eyes.

[Chorus:]
Somebody said they saw me, swinging the world by the tail
Bouncing over a white cloud, killing the blues.

Now I'm guilty of something...
I hope you never do
Because there is nothing
Any sadder than losing yourself in love.

[Chorus]

And then you've ask me... just to leave you
To set out on my own
And get what I needed.
You want me to find what I've already had.

New Week...

Things are looking much better so far this week. It's tough getting over the "hospital hump" so to speak... those of you who have been there know what I mean...
The lack of sleep
The worry
Not eating right
Not getting a shower
The Boredom
Loosing track of the date and or time
Looking forward to whatever is next on Nickelodeon!
Coming home and feeling out of place in your own house
Coming home and being thrown right back into life like you were never gone.
Needing a few days to decompress and feel normal again!

This weekend I got to sleep in, unpack, and get back in the swing of tings around here. On Sunday Special Olympics started which was a lot of fun..David and Ben play soccer and Jake plays on the team as a Unified player. Aric is volunteering with Track and Field. David was ok with not practicing and instead helped his coach.

David went back to school yesterday.. he was thrilled to be back to see all his friends and his teachers. His leg looks good, the bandages can come off today and he goes back to Boston next week to have the sutures removed. He is walking a little stiff legged, but is getting around just fine.

Thanks for checking in... I will post some pictures of Special Olympics and some of his leg later on today.

~Vicki

Readjusting...

The last few days have been tough here. I feel like we have been thrown back 4 years to Davids initial injury and that has been harder on me than I anticipated.

Spending 3 days on the acute floor of the burn unit brought up a lot of memories and a lot of guilt that I thought I had dealt with. The sounds, the smells, the surroundings... all of it hit me like a wall when we got home. The mommy guilt has hit head on again... maybe I should have been watching him closer, what made me think I could let the boys have a fire when Dave wasn't home?, what could I have done differently that might have prevented this in thew first place? Every time I look at his scarring it is a reminder that I could have done things differently. He already has such a cross to bear having PWS... to have to deal with this too just seems so incredibly unfair. If I could take this from him, I would in a heartbeat but I can't, so I am left with the guilt that pulls at my heart when I let the memories of those months sneak up on me.

All I can do now is make it the best I can for David. right now that involves keeping him comfortable which involves keeping him entertained, washing his hair in the sink and sponge washing his body... not an easy thing for a 13 year old, keeping him entertained and comfortable, changing the bandages and re-wrapping the ace bandages several times a day. It is good to be able to help him, to be able to make him comfortable. I think that was one of the hardest parts of his injury is knowing that I couldn't fix things... I am the mom... I am supposed to be able to make things better... I couldn't fix this... I had to sit by and watch during painful bandage changes, surgeries, IV placements that seemed to need to be done all the time because his PWS veins couldn't hold an IV for more than a few days... even the central line he had placed had problems. Its all a very helpless feeling to not be able to fix things.

When David was in for one of his many surgeries and I was waiting in the surgical waiting room for word of how he was doing.. all by myself because Dave was home with the other kids... I picked up a magazine that was laying on one of the tables and started to mindlessly thumb through it to pass the time.. on one of the first pages I glanced at there was a small prayer at the bottom of the page that jumped out at me. I read it and the tears just rolled down my face.. I tore it out of the magazine and for the last 4 years I have kept it in the little window in my wallet that is supposed to hold my drivers license... it reads...

Dear Lord,
I need your peace today.
I have crooked places that need to be made straight and rough places that need to be smoothed.
I am facing mountains I can't climb and valleys I can't cross.
I need help.
I release into your hands all the worries and anxieties and struggles of my life.

The jagged little piece of paper is worn now from all the times I have taken it out to read it. I don't know who wrote it, but it was in the right place at the right time for me and has given me much comfort over the struggles of the last 4 years. It had been awhile since I had taken it out to read it, but while David was in surgery earlier this week I remembered it and took it out one more time.
I thought I did pretty good when he went into the OR this time.. I gowned up and went in with him and stayed until he was asleep. After I left, I felt ok and decided I would use the 2 hours he was going to be in surgery to go take a shower and have something to eat. Whenever David is scheduled for surgery and can't have breakfast because of it, I don't eat either... I always wait with him... I just don't think its fair for me to eat when he can't... I also think it makes his wait a little easier to know that I am hungry too!
Anyway... I went back to the room and gathered my bag of shampoo and soap, clean clothes and my towel and headed down to the 3rd floor to the locker room to take a shower. I figured once I was showered the cafeteria would be open for lunch and I would go grab a bite to eat. I opened the door to the locker room and there was the cleaning lady with her cart.. she looked up and pointed her finger at me and in with a heavy accent said "Locker Room is closed!" So I told her I just needed to take a shower and she shouted back at me " No, Locker Room is CLOSED!" Come back in One Hour!!" That is all it took... I turned around to leave and the tears were running down my face and I couldn't stop. all I wanted was a hot shower... didn't this woman know that I hadn't had one in 2 days and that my son was in surgery? I went into the bathroom and had a good cry then headed up to the 9th floor for some lunch. Then I went back to the locker room and took my shower.. By the time I got back on the unit, I on;y had to wait for a few minutes before they came to get me to take me to the PACU.
In those few minutes before I went to the PACU, I remembered that little piece of paper in my wallet and took it out to read it again.... I gathered my self together and put a smile on my face for my son... my hero... the kid who has been through so much and keeps bouncing back with a smile every time... His PACU nurse greeted me with a story of how he woke up smiling... I wouldn't expect anything different.

If you have gotten this far, thanks for reading today...
~Vicki

We're home...

We got home yesterday afternoon. David is doing well, he is sore and grumpy, but that is to be expected. I am tired and grumpy but happy to be home! It felt so good to sleep in my own bed last night!

Here's a couple of pictures from the last few days. I've got a few really cool stories to share, but right now I want to gather my thoughts before I post them.

Thank you for all the thoughts and prayers the last few days...

~Vicki
David before the surgery

Just back from the PACU.. still a little loopy!

In the play room playing video games

Quick update...

Hi Everyone!

Thanks for all the e-mails and well wishes for David. He is doing well, the surgery was yesterday.. we are writing from the playroom at Shriners right now... David is playing on one computer and I am updating on the other.

they did 4 z-plasty's.. I haven't seen it yet as his leg is wrapped up for the next week while it heals, but things look good. We may possibly be leaving this afternoon after his last round of IV antibiotics. He looks great and is not in much pain.

I will post again when we get home and also upload some pictures...

Thanks again for all your prayers... I am reading about all this GH Bill stuff on my e-mail WOW guys.... Great work in protecting our kids right to GH!!!!

Love to all of you!!

~Vicki & David :-)

We leave for Boston in the morning..

David and I leave tomorrow morning for Shriners Hospital in Boston where he will have surgery on Tuesday morning to re work an area of scarring on his leg that was badly burned 4 years ago.

The surgery itself is relatively minor compared to all he has endured the last 4 years with the injury. I however, am dreading it. Maybe not so much that it is yet another surgery, another hospital stay but because of all the memories of the days surrounding his burn injury and the helplessness and guilt I still feel over it all.

For those of you who weren't around 4 years ago when this happened, it was 2 days after Christmas and it was a beautiful warm day which is very uncommon for December in CT. We had close to 55 degrees and warm sunshine. We were working in the yard, just doing some yard work that we had not gotten around to in the fall. The boys had a campfire going which is something we would do from time to time... we had been feeding the fire with small branches we were cleaning out of the yard. David had gone into the barn and was sitting on the ATV which, unknown to us, had a gas leak. What we think happened, is that he had gas on his shoes and maybe even his pant leg from sitting on the ATV. He got close to the fire and the gas ignited. I was working about 30 feet away when it happened and Jake let out a yell that still rings through my ears today... he yelled " Mom, David is on fire!!"" It makes my stomach sick to think of it and I can still hear those words clear as can be. I turned around trying to wrap my brain around the words that I had just heard to see David just standing there in flames. I ran to him and pushed him to the ground and started trying to beat the fire with my hands.. I quickly realized that it wasn't going to work and that I was burning my hands trying so I took my sweater off and managed to smother the flames with the sweater. by the time the flames were out, David was in shock and his pant leg was gone up to his knee on his left leg revealing how bad the burn was. By now Ryan had called 911 and emergency services were showing up in our yard. David and I were Air lifted to the Burn unit that became our home for the next 6+ weeks. David had many surgeries and in March we transferred his care to Shriners Pediatric Burn Hospital in Boston where they finished up some of the very stubborn areas that we were having a hard time getting to heal. David had 3rd and 4th degree burns to about 30% of his body... For those who don't understand the degree system when it comes to burns.. 3rd degree is through all 7 layers of skin and almost always requires grafting to repair, 4th degree is through the skin layers, through the fat layer to muscle, and there is a 5th degree which is to bone.

Today, David is pretty much scarred from the waist down. His left leg where the burn injury was is scarred and the back of his knee and around his ankles where the scarring meets healthy skin it gets very thick and ropey... burn scars don't grow at the same rate as healthy skin, so he is literally outgrowing his skin right now leaving the bending areas around the knee and around the ankle very tight and he is loosing the ability to straighten his leg out because of this. What they are going to do is a series of scar revisions called z-plasty to give him more growing room.
We are hopeful that this will be minor surgery and he will be back up and running in a week or so.
I am going to have Dave try to update the page this week while we are gone... and as soon as I have access to a computer again I will let you all know how it went.

After David's accident, I put an online photo album together of his injury and recovery.. mostly to send to the Dr.s in Boston, but also to help other burn survivors. I have always had the photo album password protected because some of the photo's are pretty gruesome and show the injury before successful repairs could be made. However, after 4 years I think I feel comfortable sharing the photo's with anyone who might be interested in seeing them... I warn you though.. they are not for the faint of heart... it has been a long road to get him to where he is...
If you want to see them click on the photo album link on the bottom of the page where the portrait of the kids is... once at my photo site, look for the Album that says Private at the bottom.. you will get a prompt for a password... the password is davidk
You will see the progression of the injury from the very beginning to where he is completely healed.

I will update again when we get back.

Until then.....

Vicki