Brown and Pink Polka Dots : checking off the boxes for our trip

Ever have those times where you have been waiting for something for a long time and the closer you get to it the more real it feels but also the more overwhelming it feels...

Thats how I am tonight.

I'm curled up in front of the fire place at rmh after a busy week of appointments... I think we have everything checked off of our list for heading to nih.

This week we got the medical clearance for traveling. We got Jilli's ear tubes checked out before the plane trip. Both girls got their feeding tubes changed.

Jilli is still dealing with the aftermath of the virus she had several weeks ago causing lower GI issues... we have her close to maxed out on laxatives and it is only slightly helping :( That has caused stomach pain all week and caused her to leave art early one night

I also had a phone meeting with NIH about as additional study they have asked us to participate in and also did the first on line portion of the study.

I emailed the travel office for NIH as we do not know any of our travel info yet. They thought they had talked to us already but they had confused us with another family. I am REALLY REALLY REALLY hoping they send us flight info on Monday... I am trying hard to not be stressed about this however it hit me today how soon this is and how little we know. My anxiety is starting to rise.

We have also dealt with more of a mess with trying to use the waver money... its not the waver's fault... the company we were trying to work with has given everyone a run around! Its been a mess and tons of emails and phone calls this week.

Tonight I am tired... tube changes went well from a medical aspect today but it was the hardest it has been from an emotional aspect on the kids in a long time. They both cried and fought it. It was hard emotionally for everyone. I honestly am exhausted after... its a weird kind of exhaustion that comes from medical stuff... its different... its hard to explain...

But something else I am is grateful...

I am in a place full of so much love!

And have been able to spend time with great people this week...

We started our time here by delivering 50 baby dolls! Plus a few friends gave us more once we were here!

A friend also left us the passys that Jilli uses that Walmart is clearancing out.

The girls were able to participate in art therapy multiple nights... and dance therapy too!

We got a lot of snow here earlier in the week. The girls lungs really struggle in cold weather but we were able to bundle them up good and let them go outside and play in the snow for a few minutes.

The girls also got to do gardening... Do you have a Mr Rogers in your life... not the TV show (Jilli watches that every night before bed)... but a real life person... Ann the gardener at rmh is the closest to Mr Rogers I have ever met. She is a sweet soul. They were supposed to be out of town for gardening on Thursday but once they found out Jilli was going to be at rmh this week they stayed and did gardening. Gardening was amazing! Jilli even read to Ann... Jilli's goal is to read all of the level B books we own this month... she is close to finishing her goal and she celebrated by reading to Ann.

Then last night we celebrated Christmas with the Smith family... we only have been trying for over a month but we all ended up with sicknesses... but last night we were finally all well enough to hang out. We had a great relaxing night. Kirk bought the girls pink unicorns that they can ride on!

Our PT looked ahead at the weather for next week and noticed how cold it is supposed to be and contacted me preemptively to check with me about moving our PT time since she knows cold like that is too dangerous for the girl's lungs to be outside in (just the walk between the hospital and rmh today was hard on them and we had them so buddled Jilli was convinced we over dressed her!). I love how much our team loves our girls. Our Special needs team also met with me today to personally deliver to me the travel documents we need for heading to nih... we met over coffee at the hospital... I was thankful that they took care of getting that all done after our appointment this week (the doctor had to meet with us first a write a letter off of that) and made sure I got it today so I don't have to worry about that.

Our friend Annette has been taking care of our mail all week... the plow hit our mailbox again... we have to fix that when we get home tomorrow because we no longer have a front part of out mailbox (and no door to keep the mail in the mailbox... I'm pretty sure the flag is gone too)... Brent also went home and snow blowed the other night and got a few things we needed from the house that nih needed that we didn't know they needed (info off paperwork).

The thing that this week reminded me of is how amazing it is to see other people love and invest in my kids. Its amazing to watch people genuinely love my girls for them. I get a little misty eyed thinking about it. I am so thankful for the people who invest in my kids! I had several amazing people invest in me growing up, and I am so grateful for the people who invest in my kiddos.

So I am going to watch this fire a little more, just typing has helped release some of the stress I could feel I was carrying in my chest, which I'm thankful for. Plus its a Friday night here which means there isn't a dinner group so we need to find food... hopefully Brent and the girls had a good time doing a puzzle and coloring in the art room while I typed.

Here is what 45 baby dolls look like!

Jilli showing Laura her Disney photo book

doing the wishing well to go to the magic room

Jilli's toy from the magic room. She already had the mini American girl doll but they don't really make stuff for the mini dolls. Jilli picked this toy out of the magic room figuring one of her toys would work with it... to figure out that the mini American gril dolls fit perfectly! She LOVES this Mi World toy... Jilli has always been our kid who is great at loving toys that they no longer make (like her love of Bear in the Big Blue House)