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Tuesday, October 12, 2010

St Jude Day 1

We arrived at a fairly decent hour last night around 11:30pm to find that once again we'd been cast to overflow lodging over at Target House II. Not a surprise as it appears the only time we actually get to stay at the Grizzly House is when she is in isolation. Not asking for that -- so we are good! Avery was awake almost the entire ride -- slept for 30 mins at one point, but at 11:30pm she was wide awake and ticked at still being in the car. Needless to say, going to bed was a struggle after that

Today was a busy day as we had to be at labs at 7:30 am. We met with the nutritionist, who gave us a calorie builder called Dualcal to add to all the things she eats. She weighed in at a whopping 9.5 Kilos which is about 20.9 lbs. She also measured in at 32 inches tall, which means she is still growing a bit! Our goal is to get her closer to 24 lbs so we'll see what we can do. Next month makes eating difficult so we need to fatten her up in the next week and a half before we start the next round.

Next we met with the Dentist who suspects we may have an issue with our enamel on our teeth - so we will be paying extra attention to that. PT went well and Miss Lauren showed us some new exercises on the big ball that help us focus on core muscles. We don't have one -- so for those of you out there that bought an exercise ball with the best of intentions....and no longer have those intentions -- we need one. Miss Lauren was very impressed with her progress and attributes some of her struggles to lack of weight/muscle gain. We'll be working hard on both these next few months.

After PT we met with NeuroOncology - Dr Armstrong and Lindsay. They did an exam and were very pleased with her growth over the last 3 months as well. They gave us great news and said they don't anticipate us needing to keep her Hickman catheter (BOOB TUBE) in her chest past her next appointment in mid January. The only reason for us to keep it is if she has complications or her counts are not stable and warrant rechecking weekly for a period of time. That being said -- she will finish her chemo on January 14th 2011 - and her 2nd birthday is a week later.

We also met with the Audiology department and they have indicated a transmitter/receiver option is something we need to start thinking about. For those of you who have no clue what I am talking about (as I didn't) this is a device that will be worn by whoever is in charge in a group setting. For instance the teacher, the story tell, the coach, the mommy -- whatever person it is crucial she hears in an environment where background noise can interfere with her ability to hear what is important. Yes someday, she will be carrying this with her and handing it to each teacher at the beginning of class.

Overall, I pleasant but long day. We met up with some of our friends including Belle, Megan, and Collin. It was great to see them all -- a little reminder of the amazing journey that we are all still a part of. Tonight we plan to have dinner with Megan and Brandi at the Target House. Megan had a rough day - as did Brandi. They are concerned she may be having seizures and did an EEG to check brain waves. Needless to say -- that freaks us all out. Tomorrow we meet with OT, Speech, Optomology and she has her MRI/Lumbar Puncture in the afternoon. Results won't be given until Thursday.

Keep the prayers coming....

Jenn, Jeremy & Avery


  1. Megan and I were so happy to see yall today!!What a great txt with a pic of Avery here playing in clinic waiting area!!

  2. Avery you sound like a strong little girl. My prayers are with you!