Planning the Road Trip

Plans are slowly forming and the phone calls are picking up speed. Caleigh's consults in Pittsburgh and Boston are now scheduled. We have insurance approval at PITT and Boston is slowly following suit. Luckily Eric has the days scheduled off of work and I can work from anywhere so we are set to travel. 

Pittsburgh and Boston both have their intestinal care clinics on Thursday afternoons. Since we can't be in two places at once we are spacing them one after the other. This leaves us about a week for some play in between. 

Baring anything unforeseen, we are planning to take Caleigh to Niagara Falls, New York City and maybe Washington DC during our wait and drive home. 

Of course we will have to hit up the American Girl Store in NYC. I 'may' have even made an afternoon tea time reservation in their cafe. This part will be a fun surprise for Caleigh.

Why not make this a little vacation for her? I ordered a US road atlas the other day. When it came in we sat down on the couch with C and started to talk about our trip to come. Caleigh immediately started crying and using her iPad, told me she was scared. We've had a good run these past few weeks with her feeling relatively well. It puts all of the emotions ahead of us and out of sight. We explained that this was just a visit that will be surrounded by fun sightseeing and a lot of driving. By the time we were done talking about the possibilities she was in and I was a little worse for the wear. I just hate this feeling. 

We went in to do blood work last week. They took 8 vials of blood checking her vitamins and minerals. Previous blood work suggested that she didn't have ANY essential vitamins and minerals. This blood work was to check for specifics and to help formulate a plan. We should find out the results sometime this week.

I'm open to all fun and accessible travel suggestions for our journey! Shoot away! What exciting adventures would you share with Caleigh? Add your ideas in the comments below.

North Texas Snow Day

Today handed us some seriously wild and crazy North Texas weather.

No worries though...Spring is just around the corner. Like this coming Tuesday. 

We turned around on our way to OT early this morning because it had started snowing and mostly because people can't drive. I'm glad we did because the roads and traffic just continued to get worse all morning. 

It snowed all day which is crazy in itself. This is Texas people!

All in all we got about 2-3 inches at our house. 

Late in the afternoon we bundled up and headed out to create the one and only snowman of the season. Renn even got in on the fun and ate about a ton of snow doing so. 

This time Caleigh looked like the kid in A Christmas Story. You know the "I can't put my arms down" kid. Three shirts, three pants, three socks, hoodie, hat, coat, mittens, boots. She sat up in her power chair better than anything I've ever seen. There was a lot of trunk support happening!  

We stayed outside for way more than an hour. Caleigh cruised around, Eric and I built the snowman, we dressed the guy and then headed inside right before we lost all feeling in our hands and it got dark. 

Our toes and hands were frozen, but we had a lot of fun. In all my life I don't remember building such a large snowman. It should be fun to see how he melts over the next week. 

So many were stuck out on the highway for hours on end just trying to get home. I'm extremely thankful that our little family was safe at home and all together to enjoy the snowy white day. 

North Texas Sleet Day

What do you do when North Texas is shut down on account of some sleet? 

You bundle up, and crunch ice in your power chair like a princess. 

Caleigh has been doing really well driving her chair with the joystick. Today was a great day to enjoy it too! We added new stickers and cleaned it up before we headed out in the cold. 

She lasted about 30 minutes before she was ready to come inside. 

Today taught me that we aren't even prepared for the cold of Pittsburgh and Boston. -9 and below isn't even on our radar. Today it was 27 degrees and we were chilly. Our Texas attire just doesn't seem to be enough. Depending on our trip timing we will need to stock up on warmer clothes for sure. 

We haven't had anything that really resembles winter so far this year so we were about due. Hoping you are warm and snuggly this evening and enjoying time with your family. 

Tooth Fairy, Waiting and New Shoes

Yesterday Caleigh lost her 4th tooth. Years of grinding her teeth made it tiny, but the root proved to be large. She excitedly woke up this morning four quarters richer. 

The 5th, extremely loose tooth will be following very soon. 

Children's Hospital Pittsburgh has all of Caleigh's files that they need. They are submitting everything to insurance for prior approval and then we will be good to go. The ICARE team meets in the clinic on Thursday afternoons. This will be totally outpatient, so we at least know what day of the week we will be there for consult. 

Boston Children's Hospital hasn't returned my phones calls, but they are currently enduring a record breaking frozen wonderland at the moment. I'm not sure when we will hear from them or if we will be able to get all of Caleigh records and insurance approval completed in enough time to visit them at the same time as Pitt. 

Eric and I really wanted to visit both hospitals to be able to make the best decision, but we also don't want to wait too long. We would rather be proactive about Caleigh's situation instead of reactive. The longer we wait the more narrow that window could potentially get. 

Caleigh's Botox injections last month changed up her leg tone enough to need an adjustment on her AFOs. The adjustments made her braces wider and taller. All of her shoes are too small to wear now. So yesterday we went shoe shopping, again, and finally found some Adidas shoes that work. They are a classic style that seem wider although they aren't considered wide. Right now her AFO shoes are 6 sizes larger than her regular shoe size. It's crazy, but they don't look terribly out of proportion to her body. She is so close to needing new AFOs that we went ahead and got the next size up anticipating a larger AFO in the next few months. 

Caleigh has been feeling much better since we have stopped all the testing of the past month. Her gut has finally calmed down and she seems more comfortable. She has been sleeping through the night which we are completely thankful for. 

The past few days have been pleasant and sunny. We've been enjoying as much sunshine as we can soak in knowing that we will be joining our freezing neighbors up north very soon!