GFM

Sunday, March 22, 2015

Shopping List for Denver

These are the items that I need to shop for and purchase before we fly out...some of the items are things we can BORROW and return when we get home.

2 Full Size Suitcases (borrow)
3 Carry On Size Suitcases (borrow)
3 Heavy Duty book bags (like Jansport--for carry on toys/food, etc.) (borrow)

TINY tube socks--like XXS for 3 year olds to play soccer x 12 pair (preferably in colors since they will show)
SMALL tube socks--approx size for a 4-5 year old to play t-ball x 8 pairs

Sheets-from Mom

CeraVe lotion x3

Vanicream lotion x3

Reclining Stroller (suitable for a 27 lb child to nap in) w/ cargo area -- From James & Missy


Tuesday, March 17, 2015

A "heart attack"

Amanda, my sister, treated Vinnie & I to dinner tonight at Outback Steakhouse. Unfortunately, before we'd even gotten food at our table, Vinnie found a tiny shred of cheese in the booth and picked it up. My sister grabbed it from him and I rushed him to the bathroom to wash his hands, but it appears the damage was done. By the time I got his hands washed (there was an issue there because they only had heavily scented soap in the ladies room), and back to the table his eyes were swelling, his face was hivey and itchy and he had hives on his stomach. I gave him a dose of benadryl and took him outside and he got some relief from the symptoms. I'll have to re-dose him with medicine at the four hour mark. I'll be watching for a more serious reaction as we near the two hour point (now). *THIS* is why National Jewish is important for Vinnie. His skin is so broken that even casual contact with his allergens can cause a serious (possibly life threatening) reaction.


This is his face almost 2 hours after it happened.  You can see his eyes are still swollen/puffy & the scratches on his forehead and the redness from the hives. (the scratches around his mouth are old)

He'll get 24 hours of benadryl following a reaction like this. 

Saturday, March 14, 2015

Wet Wrap Therapy

At National Jewish Health, the therapy program relies heavily on wet wrap therapy.

This involves a 20 minute "soak" in the bath tub followed by a "smear" of a thick layer of ointment/creme/medicines/steroids on the child's ENTIRE body, which is then covered with a layer of WET clothing, including tube socks over the hands & feet.  The final layer is warm pjs and dry socks on the hands/feet.

Vinnie wears exclusively 100% wool or wool/silk blends that have been lanolized for his normal clothing.  Anything else we have tried has irritated his skin.

The wet-wrap therapy is done with 100% COTTON clothing.

Obviously this poses a problem for us.  So, I went out & bought a set of cotton pjs and a fleece sleeper for Vinnie to do a trial run to see if maybe the "barrier layer" of cremes would be sufficient to protect his skin from irritation.

We did our first trial run this morning.  Vinnie did NOT like soaking in the tub.  He did NOT like getting the lotions smeared on him.  We did triamcinilone steroid creme on his eczema spots and CeraVe lotion on his clear skin.

When we finished dressing him, it only took a few minutes for Tim to calm him down and he was happy.  He was a little embarrassed about leaving the house all wrapped up but we made him comfortable & he was able to enjoy Chic Fil A for lunch while shopping at Target. (he had to eat with a fork, instead of his fingers)


He took a nap on the car ride home and it was right around time to take off the wrap (he wore it for 2 hours) when we got home.  His skin showed NO signs of irritation, which is wonderful.



We kept him dressed in long sleeves and socks/shoes all day, so he wouldn't be able to scratch & undo any healing that took place.  At dinner time his skin still felt moist/soft.


After dinner we did another soak/smear/wet wrap routine.  Vinnie did okay with the bath, he was pretty upset at first but eventually calmed down and didn't want to get out.  He cried pretty badly during the smearing and dressing in wet clothing though.  Tim was able to calm him down and get him to bed pretty quickly though, so we'll see how his skin is tomorrow.

UPDATE: 3/15/15 AM--Vinnie slept well during the night & woke up with no irritation.  The pjs that had been wet were mostly dry but cool.  We tried to leave them on him but he was quickly scratching under them, so we switched him back into his regular wool clothing.

Friday, March 13, 2015

Preparing for Denver- Part 3

 I apologize in advance that these early posts are so scatter-brained. There is just so much going through my head at one time that I need to keep it all in one place.

Yesterday and today I went shopping for the cotton & fleece jammies that NJH requires for their wet wrap techniques.  I found a few cute things on clearance (trying to buy warm winter pjs in March is not easy!)  and today I even got the boys matching Transformers pjs. I had to buy a size 4 for Vinnie, which means they will need taken in, but that's not big deal.

I've also put a call out to my friends to see if anybody has anything that will work for Vinnie.  We'll be trialing a wet-wrap tonight or tomorrow morning.

Keep up with the whole series of posts through these links!

Read my first post about Denver here! 
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do

Things to Ask the Coordinator or Doctor about Denver!


I need to ask about filaggrin mutations when we go, its possible that Vinnie has this & if he does it changes his treatment options.

Keep up with the whole series of posts through these links!

Food Challenges I'd like to do:

Corn
Soy
Crab
Maple
Molasses

Read my first post about Denver here! 
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do

Things to Do In Denver!

Things to Do In Denver:

Denver Zoo/Ronald McDonald House Pass--call & find out if this still exists. :)

Aquarium?

Heritage Amusement Park weekends only

Heritage Square Alpine Slide (opens while we are there!)

Red Rock/Garden of the Gods

Train Ride

Keep up with the whole series of posts through these links!

Read my first post about Denver here! 
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do



Wednesday, March 11, 2015

Planning For Denver (Part 2)

So, I'm working my way through reading other people's journeys.

Today we found out Vinnie has to be off of his Doxepin for 1 week prior to the program.  Which means he won't be on it for our flight or visiting family.  This gives me a lot of anxiety & I plan on talking to his doctor's tomorrow.

I'm also going to attempt to do a wet-wrap routine at home with Tim's help this weekend.  I want to try it with cotton clothing & see how his skin does.  He doesn't do well with cotton long term--but the wraps apparently only stay on for 2 hours at a time.  I want to see if he can tolerate the cotton clothes, because if he can, that changes how we pack/shop for the trip.

I got a lot of paperwork done today.  I also got a discount towards t-ball, so Lucas will still be able to play, even though he'll miss a whole month.

I need to make a bath toys bag.  Something we can carry back & forth to the hospital to keep all his toys in.

I also need to buy new jars of CeraVe and Vanicream.  And refill his Elidel.  And Triamcinilone.

I need to ask Sarah (our coordinator) about these "nasal rinses" that I am reading about on the blog.  I think its probably something similar to a neti-pot and if so that's scary. I have no idea how Vin will do with that.

Basically, learning more about the program is just SCARING the CRAP out of me. :(

While the parents are in classes/meetings/therapy where are the kids? Do they have a day-care type play room? I'll be alone with Vin at the hospital.

Do we get to use the same hospital room each day? Or do we have a different room? Do we have to carry everything back & forth?

Read my first post about Denver here! 
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do

Monday, March 9, 2015

We're Going to Denver! (Part 1)

In December of 2014, we went to Vinnie's allergist, desperate for help.  His skin was out of control. He appeared to have developed several new allergies through the Thanksgiving holidays.  He was getting sick constantly.  Unfortunately, his allergist, the Head of the Department of Allergy/Immunology at Children's Hospital of the King's Daughters, was just as baffled as we were.  She said at this point she isn't sure what else to do for Vinnie or how to help him, but she did have a little glimmer of hope.  She told me about a program in Denver, at National Jewish Health Center, where they treat kids with severe atopic dermatitis (the fancy name for eczema) and allergies.
That's where we began our journey to Denver.  It took the doctor about a month to get the referral in, due to holidays, weather, and other set-backs.  But, after she did, the process moved pretty quickly.
Within 2 weeks we got the call going over the details and doing the initial "intake" over the phone.
While Vinnie was in the hospital for a stomach virus, at Valentine's we did the processing paperwork and officially decided to go to Denver.
A few days later we got the call to finalize the financial aspects of the trip.  We had to assure them that we understood the costs associated with their program.  We will max out Vinnie's deductibles on this trip and come close to meeting our family deductibles as well.  We will be responsible for paying all of that, via a payment plan over an 18 month period when we get home.
A couple days later we got the "scheduling call".  We took a couple days to go over things and choose the best time for us to go and then called our coordinator up to make things official.  I booked our flights while I was on the phone with her.
Now I have lots of paperwork to take care of, I've been making lists of questions and goals, and rallying support.
Today I got links to blogs/facebook pages of other families who have been to the program.

April 2012: http://www.realfoodallergyfree.com/overcoming-eczema/

May 2012: http://livinginanallergicworld.blogspot.com/search?updated-max=2012-05-08T23:37:00-06:00&max-results=7&reverse-paginate=true

August 2013: https://zoeynjh.wordpress.com/2013/08/08/day-one-njh/

September 2013: https://www.facebook.com/groups/672685026094819/

October 2013: http://jonahlowry.com/

February 2014: https://www.facebook.com/pages/Caleb-Goes-to-Denver/1431419120425855
(This child's AD was labeled as "moderate/severe" and he got to go home a day early!)

February 2014: https://answersforava.wordpress.com/
(This child's skin responded well to the therapy but she was only able to do ONE food challenge in all 10 days.  The doctor's did offer to keep her longer.)

I'll be reading their stories and adding to my list of questions/goals/concerns. Vinnie starts the program on April 13, and hopefully I'll be diligent in blogging our way through it.

Goals:

1. Get his skin healed.
2. Confirm/deny his allergens and plan a good diet
3. Answers about his immunology & why he's always sick
4. Answers about his size/slow growth


Questions:

1. What should we bring?
2. Are there meds/lotions we can buy before we go?
3. Bathing distractions?
4. Medicines to take/not take?


This is the original post in this series.
Post 2--thoughts & questions is here. 
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do

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