Flu Mist

If you choose to get the flu mist this season do not expect to visit Haven for at least 7 days after receiving. This is the live virus and could put her in the hospital.

Haven's school administers the flu mist 2 times a year and Haven had to be taken out of school October 8th until October 15th. She was able to get the flu shot this year.

Ready for Halloween

We are ready for Halloween!!!

Deez got a cute t-shirt today. It's perfect because the ghost on her back glows in the dark...so now we'll be able to see her when the lights are out. She also got a beautiful pair of PJs so when those go one we'll have to share her picture.

Tomorrow we are going to see our first farm in MD. After being here for 3 years and living in hospitals we realized we'd never been to a farm to get our pumpkin. We always buy them at Walmart. How fun is that?????? So this year miss Haven will go to her first farm and take a hayride out to the pumpkins.

It's finally Fall now...although the temp tomorrow and Monday will mimic Summer...it is mostly in the 60's now. But even though it's in the 60's I'm enjoying the AC in the house....after no AC all summer and 110 degree weather I'm keeping it on until I'm frozen!

We'll share some pumpkin photos tomorrow!!!

Locking up the doors and hiding!!!

That is the plan for this weekend!!! Oh and I'm going to play Xbox like crazy!

After our insanely crazy week last week we have decided this weekend would be better if we just locked ourselves away and emerge refreshed on Monday!

We had grandparents out for the week and it was perfect timing! We were busy doing something out of the ordinary with some fabulous people and grandma/grandpa were taking care of Haven, dinners, house, and Deezy.

THANK YOU GRANDMA SING FOR WASHING ALL OF THE LAUNDRY!!!! AMAZING!

Yes this is a very important thank you - I believe she did 22 loads of laundry while here. I never thought the mountains of laundry would get done. Then I found clothes that I've never seen before! Even wearing a shirt today that I never knew I had! A few pieces in the laundry still had tags on them. If you don't think I had 22 loads of laundry you should've seen it! This is my punishment for working for apparel companies for a million years!

But not only did she do laundry --- she cleaned the house top to bottom which was a huge help considering I think we were only home one day while they were here! Luckily they got to spend a lot of time with Haven. They were able to take her to school and pick her up - she loved it. I think she made grandpa read for 3 hours a night not including the crafts and workbooks. He didn't know he was going to be going to school again when he saw her!

Then with our extra stuff we had to do the Element decided it wanted to see what a deer looks like up close. :) Everyone in the car was fine...a little sore and mentally wrecked but the car is now living in a shop waiting for an estimate of damage. I have watched carefully for deer on the 40 since....but have not seen anything.

This weekend I have a few projects to finish up ---- one of them being an update on all our ROHHAD children from around the world. Stay tuned.....there are new kids for you to read and learn about!

Love to all

6 Week Oncology Visit

Miss Haven had her 6 week visit to Oncology today. She did as awesome as she always has.

So far Miss Haven is holding steady. It's been 15 months since our last huge chemo treatment and 11 months since we were in isolation and my baby girl is doing AMAZING! Everything that reversed after the chemo is still holding steady....we've seen nothing revert back. She isn't even wandering the house in her sleep anymore...she still screams and yells but hasn't walked the house in 4 months.

She also didn't need her IVIG boost today --- so they will recheck her on November 13th!

Next up Endocrine appointment!

Matt's Helpers Foundation

A huge thank you again to Matt's Helpers Foundation ---- they always seem to know when we need it most!

Fun Week with Grandpa and Grandma

Grandma and Grandpa came out to visit for the week from Utah. Haven had a blast visiting with them especially doing her crafts and hours and hours of reading. Each day I think they read at least 1 - 2 hours.

Haven with Grandma and Grandpa

Reading with Grandma....one of Haven's favorites. They did hours and hours......

One of the best games Grandma and Grandpa could've brought to visit. Hangman - Haven contoled the game and made the rules.

Matt's Helpers Foundation sent a huge box of crafts - which gave them even more to do!

This is the witch Grandpa and Haven sewed together for their Halloween crafts.

Haven's googly eyes --- THANK YOU TO MATT'S HELPERS FOUNDATION!


My beautiful angel baby...so innocent

Haven with Grandpa and Grandma with a gift from her new friend Katie. Her little baby green pumpkin is named Princess Randall.



And of course, baby Deezy makes her photo shoot with a little air. She does a super spin when you pull out the measuring tape! Why? We don't know but she loves it!

We had an awesome week that went very fast! Can't wait til they visit again!!! Love you guys!