Avery's Worst Day

Well I think we have officially named today Avery's worst day ever. Who would of thought that pulling teeth was worse than brain surgery, radiation or chemotherapy? She has been in pain a majority of the day and we've done our best to try to distract her, but to no avail. It didn't help when the eye dr dilated her eyes and that we had back to back to back appointments. Finally Jeremy called it quits and took her back to Grizzly house for a much needed nap. I attended her last 2 appointments alone pushing an empty red race car and hauling all her supplies around with me. This of course is the day that there are tons of tours going on in the hospital and I got a lot of strange looks as tour groups opened doors and moved over for me and the empty red race car!

Avery's right eye has gotten a tiny bit worse so we are going to go pick out a new pair of glasses....hard to say what color we might go with this time! We also are getting new leg braces for her that will come up a tiny bit higher to help with her knee hyper extension. And lastly, we'll be starting to use an FM transmitter with her hearing aides so that she can focus solely on a specific voice regardless of her surroundings. This will require the person with her to wear a small device around their neck. We are hoping this will help her focus on the right things, especially when in a group setting.

We are excited that we were able to see our friend Belle and her mom and Aunt Jen this week. Luckily they are only here until tomorrow, so their check up was short and sweet. Belle is doing really well and growing like a weed. For those of you that like the Chili's Restaurant chain - check out the kids menu sometime - Belle is on the menu for St Jude! We are also hoping to see Rachel and Rachelle this week when they get here. Rachel is 4 and has Medulloblastoma like Avery. It has been so great to see all of the Dr's, Nurses, and Therapists here at St Jude. It feels like home being here with them and Jeremy and I seem to be so much more relaxed surrounded by the amazingness that is this place. Tomorrow we have big plans to have her Hickman catheter removed and replace it with a Port. A Port will be placed under the skin on her chest and will require a needle poke to be accessed, but will allow Avery to do some of the things she hasn't done in the last year...go swimming and take a bath. We are very excited about this and can't wait to let her splash all she wants in the tub and take swimming lessons! This is a minor outpatient surgery and has a small recovery time. Friday will be our MRI and Lumbar Puncture, but not till noon so we won't have results until late that afternoon, if at all that day.

Hoping that Cy and Jersey Anne are behaving themselves this week - thanks to Dan & Harper for taking care of them for us!

Jenn & Jeremy

Day 1 - St Jude

Well Day One wasn't as easy as we had thought it would be. Avery went in at 7:30 this am for Dental Surgery to get her front teeth fixed (cavities). Instead, the dental surgeon called us after getting in there and told us he was going to have to pull at least 4 of the teeth - 2 top and 2 bottom as her jaw was not sitting right due to the way the teeth had grown in. This was concerning and could lead to huge issues with her jaw down the road. Since the teeth were decayed anyway, he decided taking them was the best course of action for the future. After taking the 4, the jaw still wasn't resting correctly so he had to take 2 more on the bottom. All in all she had 6 teeth removed and 4 crowns put on the back molars.

How in the world did it get so bad? That is what we keep asking ourselves. I know she eats a lot of sweets but we brush her teeth at least twice a day. I can't imagine any of you others are doing any different...if even that. The old people milk she drinks doesn't help, but that is how we keep weight on her so she can fight this monster. It's a lose lose situation for us and one we really can't do much about. But needless to say - we feel like we have failed her. In the long run, this will help her jaw and bite and when she hits 5 she will start to regrow her adult teeth so this isn't permanent. Still, it's one more thing to add to her long list of "this sucks".

Our drive to Memphis was uneventful. We arrived about 7:15pm last night and went right to the hospital for labs. It felt great to walk in to smiles and "how are you guys?!" coming from the nurses and staff that we hadn't seen since October. Just one more reassurance that we are in the right place to make our baby better. The highlight of the drive was a chip in my brand new windshield (literally we replaced this last Monday) and a stop in Po Dunk AR for McDonalds... Tomorrow we have a long day of rehab check ups, labs, an eye appt and meeting with our NeuroOncology team. We are hoping she will be feeling just a little bit better by then so she can WOW her therapists with her talking, strength and all around amazingness. Right now she has crashed for the afternoon - gotta love those pain meds.

Jenn

Avery's Big Bash!

Avery's 2nd Birthday Party was a huge success! Thank you to everyone for making her day so special! She had all her friends there to play with her and there was lots of fun to be had! We couldn't have pictured a more perfect day for her. Thank you everyone for coming out and to those that drove from IA and MN to be with her! We sure hope all the kids had just as much fun as she did!

The Christiansen's