Alex and Maddy

Alex and Maddy

Saturday, July 8, 2017

A Much Needed "Normal" Week

After the craziness of the past few months, it felt good to have a week that was pretty standard. It was also a week with lots of friend time which was really nice!

Over the past few years we have been so blessed to be an ambassador for Cook Children's Hospital. Because of our work with Cook's, we have met some incredible people. Alex's favorite event was Extra Life ( a 24 hr gaming fundraiser for Children's Miracle Network). We have stayed in touch with two of the men who were active fundraisers. David had another gaming marathon last weekend and Alex was so excited to be invited.
Alex and David after a long day of gaming



Monday was Maddy's first day back to therapy and that was a hard wake up call for Ms. Thing! She would definitely prefer if no one ever made her do anything she doesn't want to! We are so lucky to have therapists that love my girl even when she is less then lovable!
Therapy is so exhausting!
Tuesday was a nice quiet Fourth where we just enjoyed time as a family. 

Wednesday was back to therapy for a much more cooperative day! 

Thursday was CRAZY! We had 4 appointments. We started the morning with a dentist appointment for Alex. He did a good job. The dentist has always been really hard for him and he really worked hard to keep his anxiety under control. Then we had a follow-up with his nephrologist to check on his blood pressures. The medications we are using are keeping his blood pressures in the normal range, so that is great! We finished off the day with a dentist appointment for me and therapy for Maddy. The highlight of Thursday was celebrating Erin's "Nurseversary". We had one nurse from the time Alex was 3 until he was 11. After many years it was just time to make a change. Since that time we have had 5 nurses, 4 needed to leave for various reasons after between 2 and 8 months. Alex has been dying for someone to make it to a year to celebrate a nurseversary. Erin started for us the week of June 20, 2016. She has been such a joy and we all love her. We just needed things to slow down a bit so we could let her know how loved and appreciated she is! 

This girl jumped right back into the routine of appointments.
Alex and Erin at VBS
Friday was a day with no appointments so Maddy and I got to spend some time with our good friends Katie and Wyatt (and Townes). We always love time with them and Wyatt and Maddy have been best friends since they were a few months old. 




Today we were lucky to meet up with some friends from our Kidd's Kids Trip at an event. The trip was so fun, but the friendships we formed mean so much more. The friendship, the understanding, the camaraderie is priceless. It brings me so much joy to see the smile plastered on Alex's face when he is surrounded by these precious friends.

Sometimes you have to wear a tutu to play!



We came home full of fun ideas for future get togethers. 

Maddy wanted some time playing with her sand and water table and I had to giggle at the many faces of my sassy girl!







She is such a light in our house...most days!

Unfortunately, a week that has been so full with fun and friends ended on a hard note as we have a recurrence of a leak in our kitchen that we spent quite a bit of money to fix over the past year. Hoping it can be repaired correctly this time and for a reasonable amount!

We have a week with some important doctor's appointments coming up. please pray for us as we have some decisions to make in care.

Ali

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