Tuesday, January 24, 2012

All Is Quiet...until midnight!

All is pretty quiet on the home front this week. There is really not much to report on. This is a strange change of events for us, especially after the few first rough weeks of January. Her cdiff has started clearing up, although she is still on the high dose of vancomycin. Her blisters on her mouth and hands from "Hand, Foot, and Mouth" have mostly healed. She is still waking up quite a bit at night. We are working on tweaking her medications again to try to find the right bedtime cocktail for her.
This week we are preparing for Kendall's second time in the air. The first vacation we took her on, we spent so much time preparing her suitcase of medical supplies. I made sure to call the airport to see how they would handle all of the medicines and heparin flushes that we would have. In order to pack for a week for her, it took an entire suitcase for her enteral feeding supplies, central line supplies, and medicines. It just so happened that Braden had a suitcase about the same size full of his favorite toys and blankets. Somehow we switched the suitcases at checkin and Kendall's ended up getting checked. Unfortunately, we didn't get that memo until we had already made a fuss at security about how we had a "special needs" passenger. I made sure to tell them that we were traveling with many medications. I thought it was pretty cool they let us through without even searching the bag. Once we got to our vacation house and I unpacked the car, I realized the mistake and had to laugh at how stupid we must have seemed! Hopefully this time I can keep the supplies with us at all times. I'm also hoping that TSA doesn't make us jump through hoops to get through security.

On another note...Kendall has resumed her in home therapy. I made the decision to continue with "1st steps" in our home instead of taking her to outpatient therapy. I think it is going to be better for her for now. Once she is 3, she will no longer qualify for the in home therapy and we will resume outpatient. Today her developmental therapist visited with us and she brought with her a chart that told her appropriate things for an 18 month old to be doing. I am incredibly PROUD to say that my child is either right on schedule or ahead of schedule! How amazing is that. She has spent much of her 1st year in the hospital and is unable to move around her environment and yet is as sharp as a tac! She continues to amaze me on a daily basis. I look forward to shocking her OT with how much Kendall has progressed since she last saw her in November. We have been working daily on climbing the stairs. I hold her bottom half so that her left leg doesn't have to touch the ground and she uses her arms (with a little support from me) to climb up the steps. When we are done she just beams from ear to ear and signs to me that she wants to do "more". I love that she is impressing herself as much as her family:)

Please say a quick prayer for us that we have a successful vacation. It is going to be a very busy weekend. I work Wednesday night and we leave the next day. Most of our weekend will consist of cheering on the #4 car! If you have time to catch the race, look for the Racing4Research car. I will make sure I post many pics and video of our weekend. Please also pray that Kendall will wear the headphones I bought for her. This is what happens when I put them on her.
Her new favorite thing to do while I run down the road to meet Braden at the bus stop is to watch Sesame Street while sitting in her favorite chair with her favorite blanket. Here she is all snuggled up in her cosy chair.

Have a great week everyone!! Thanks for all of the wonderful comments on caring bridge!


  1. Yay! A vacation!!! Well, sort of. BTW...I saw you on the cover of the NF pamplet I received in the mail the other day. It was from when you were at the NF conference last year! Yayyyy!

    And I am must head-over-heels for Kendall. To hear her progressing just makes me warm and fuzzy all over.

    btw...Dr. Goebel sends his best to you and Kendall!

    1. THanks Jenn! I got the same thing. I had to do a double take on it.

  2. Kendall, you look like such a little love bug all cozy with your blanket and some SS! What a cutie!! And I had no idea you were learning you climb the stairs!! Go Kendall!! That's amazing! I hope you have so much fun on your vacation and I hope that you are so distracted by all the action and all the fun that you don't even notice when mommy puts your headphones on :)

  3. THanks Kyle. She is getting stronger and stronger on the stairs. I can almost let her hold her own weight as long as I keep her legs up off the ground. I'm hoping that this will help her learn to crawl!!

  4. What a nice looking family you have. You all look just great