Quiche

    So, thanks to Xolair injections over the last 2 and a half years, Vinnie's allergies are becoming *WAY* more manageable.  One major change is that he is no longer reactive to shared fries or ovens!  

In August, he passed the BAKED EGG food challenge at National Jewish Health in Denver.  We were so excited to add a food into his diet!  

Being allergic to raw egg but safe to baked egg is very tricky.  When eggs are baked--to a certain protocol-- the proteins change and become something that you can tolerate.  For Vinnie, it is a VERY sensitive measure.  We experimented with some store bought products and unfortunately had an ANA episode.  

The "baked egg" rules, that we follow are:

1. One egg per cup of regular flour, it cannot be gluten free

2. The dish must be baked at 350 degrees for a minimum of 30 minutes.

3. Store bought products, should follow both of the first rules *AND* have egg not appear in the top 3 ingredients.  Since most foods don't include their recipe or bake times/temps, we have to make reasonable guesses about the preparation.  

So far, we've found ONE safe food that he can eat as much as he wants, that we can buy, and its pecan swirls, by TastyKake.  

So, all of that said, to explain that we can now cook RAW EGG in the oven and Vinnie doesn't have anaphylaxis!  The last time I tried to make a quiche, we lived in Virginia and moving wasn't even on our radar!  

So, I used this recipe, from The Gingered Whisk, to make homemade mini-quiches for dinner!  I made Vinnie's up first. I used Jus-Roll prepackaged puff pastry, Just Egg egg substitute, Ripple milk substitute and Daiya cheese substitute.  I added bacon into his, but no spinach, and he LOVED THEM! He ate 3 of them, so it was a real like too!  He ate, while the allergic real egg ones for the rest of the family, were cooking and he did not have any reactions! Isn't that amazing?!  We are so excited. 

 I didn't risk cooking his while ours were in the oven, because it was super snowy out and I didn't want to risk having to leave the house.  We have cooked allergic and safe pizzas in the oven at the same time with no anaphylaxis!  Xolair has been so good for him!

Vinnie safe mini-quiche above and my quiche, steak, and sausage below. 

 

New Computer: New Posts!

Tim got me a fancy new computer!!  Technically, we have to share it for the time being, until he decides what he wants in a computer for himself, but still.  I can get it on it while he's working, which is HUGE! 

About 2 weeks ago, we started Lucas on Acellus Power Homeschool.  So far, we like the stability it is giving us & him.  I started him out with the Kindergarten lessons and he is testing his way through them to make sure we don't have any gaps in his knowledge. As soon as Tim sets the old computer up for the kids to use downstairs, Vinnie will start on it as well.  

We also started the kids in karate at a local dojo.  These are pictures I took of Lucas & Vinnie before they left this morning.  It was their first time wearing the gi to class.  Vinnie's fit straight out of the package, but I imagine Sulley will inherit it soon.  Lucas needed an adult size 4, so I had to hem the legs and arms to fit him appropriately.  They are both quite thrilled with their new hobby.  We are excited about the discipline and self-respect aspects of the class.  Sulley is participating as well, but he can't go right now because we are shielding before we fly back to Virginia later this month. The dojo we joined is a family focused center, run by a husband and wife sensei team.  They allow parents to participate with kids in the classes, as part of the kids' tuition!  Tim and I are planning to join as well.  I am sure I will take forever to earn a belt because I certainly cannot do a full push-up right now, but I think the exercise and the kids' seeing us do something will be a big benefit.  

In other news, I bleached my hair  & Tim pierced my ears!  That was an experience.  

Welcome to Colorado Goetsch Family!!

 So, we have officially been in Colorado for 3 weeks now!  

Today the kids and I learned all about the shape of the state of CO, the border cities, and some key vocabulary.  There's so much neat stuff here to learn and since it is all new to me too, we are learning it together! 

Earlier this week we got to go to a Gameschooling Club run by another homeschool family & the boys made a friend!  

Tim's new job hasn't started yet & probably won't until well into the New Year.  He's still working remotely at his old position though. 

The boys all got new bedroom furniture & bed linens and such.  They are so thrilled.  The little boys have a Hot Wheels themed room upstairs, Vinnie went with a "Percy Jackson" theme, and Lucas went "big kid" and just asked for black linens and some anime posters!  He wanted a poster of Billie Eilish, but I just wasn't ready for my 11 year old to have a girl poster on his walls!  Tim and I got new dressers along with all the new beds everybody got.  

Within the first week we were here I managed to get Vinnie and Percy seen at National Jewish & both big kids had their eye exams.  I'm so thankful we are here and able to go to NJH for Vinnie.  

We have managed to get out and do some touristy stuff so that's fun.  

Trying to Resurrect the Blog

So, I clearly lost my blogging mojo a while back and kind of just let the blog drift into oblivion.  I don't even know if anybody still stumbles across it.  But, I did always enjoy using it as a journaling space and somewhere to keep a record of the fun stuff the kids and I did.  So, now that we are getting the house in order and I have a space where I can sit and type again, I figured I'd give a go at bringing it back to life!   

There's no way to quickly recap the last couple years, so I'll just have to let that be.  Obviously our family has expanded since the last time I posted.  Sulley is the sweetest baby & such a blessing.  I can't imagine our lives without him.  He's our fun and sensitive little red head, so easy going and gentle.  His big brothers adore him. 

Tim is still working as a computer geek and supporting my desire to stay home and homeschool the kids.  I wouldn't change it for the world.  We may not have the biggest house, newest car, or fanciest gadgets but we've got each other and the freedom to enjoy ourselves. 

Lucas is technically in 2nd grade according to the state, but we haven't done any formal "curriculum" with him beyond the "Teach Your Child to Read in 100 Easy Lessons" book, which we didn't even finish.  We got through about 70 lessons.  He is amazing at scripture memorization and is finishing up his third year of Awana Sparks.  He will have earned all 3 years worth of books & the full review for the first year book.  We couldn't be more proud of him!  He is reading a little and LOVES math. 

Vinnie is officially a first grader this year, but we technically "held him back" by opting out of kindergarten and starting him in Awanas late.  He is not yet reading.  He recognizes most letters and can count almost to 20.  He's not interested in "school" work yet and we are trying to give him space and not push him.  He's funny & entertaining.  He recently dyed his hair turquoise!  He kept his long locks until Nov. 2016 when I finally relented and let him chop them off.  He's finishing up the first year of Awana Sparks. 

His health is AMAZING.  We've got his allergies mostly under control.  Seasonal stuff is still giving us a fit but he is down to being anaphylactic to ONLY: milk, eggs, peanuts, and bananas!  He has outgrown SO MANY of his allergens.  We took a 2nd trip to National Jewish Health in February of this year.  They were amazing, just like last time!  When I have more time I'll try to write up the details of those trips!

Its been 2 years and 7 months since Dad passed.  Its definitely easier now.  We miss him.  I have a good cry every now and then.  Lucas is in counselling and we will probably put him in a group grief therapy soon.  He and Dad were close and he has some unresolved issues with the end of Dad's life.  No thanks to Vibra, who denied the kids a chance to say goodbye.  It makes me sad when I think that Sulley will never know his Pap. 

That's all I have time for now. Hopefully, I'll be back soon! I've missed my dear old blog!

What a Doozy

Wow! I could never have anticipated how long and tiring our trip to Colorado would be!  I did take detailed notes almost every day so I have every intention of getting our story up here on the blog.  Unfortunately, Vinnie is *VERY* sick right now.  He's running high fevers, coughing and struggling to maintain an O2 reading over 93%.  I am still recovering from our 24 hour long day of travel home & no full-nights of sleep following.

Please continue to pray for us & look forward to hearing about our amazing journey to National Jewish Health!

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

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. 

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

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

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