One Day at a Time: June 2012

The kids decided on doing recycled crayons today....we were supposed to have therapy this morning but Dylan was sick during the night so I wanted something calm for them to do that would take awhile. :-) I was impressed with how long they sat at the table taking the paper off crayons and breaking them.

Fortunately when we were done, it was time for lunch which made the cooling time not as hard for them. We ended up with a lot of green crayons and purple/pink crayons.....no surprise there. Dylan really enjoyed coloring with them and spent about 20 minutes coloring and for him, that's a REALLY long time!!!

All the crayons...........

Some people color with crayons....some people stack them, line time up, talk to them, etc! :-)
Hey! She was busy for over an hour at the table so whatever! :-)

This was our summer to head back to Mayo Clinic with Kira. I wasn't looking forward to it for many reasons....I hated leaving Dylan and Eva. And I hated the thought of Kira having a lumbar puncture and skin/muscle biopsy done. I tried to focus on how nice it would be to have some one on one time with Kira though. I knew that she would LOVE having Jason and myself all to herself for a few days.

We got to Rochester and Kira picked Applebee's for lunch....big shocker there! :-)

Snuggles with Daddy on Father's Day.......

We've stayed at the same hotel all 3 times we have gone and Kira could not wait to hit the hot tub and swimming pool. She was asking before we were done with lunch if she could swim "as soon as we got there!"

Jason's college roommate and his family were coming through Rochester so we got to see them. They have 3 kids and Kira had a blast with them. She was in the pool for THREE HOURS that day. She was exhausted but loved every minute!!

Couldn't wait to hit the pool when we got back from dinner too. We only had about an hour but she was ready to go again! She was really excited about finally being ready to put her face and eventually whole head under water! She's come a long way from being the kid who could leave a swimming lesson with her hair dry! :-)

Monday she didn't have any appointments until 2:45 PM so after we went swimming in the morning we headed downtown. She was THRILLED when she got to have pancakes and ice-cream for lunch!! We had a good time wandering around until it was time for her appointments.

After her appointments...yep, back to the pool! :-)

Unfortunately, all the fun came to a pretty quick end when we had to break the news to her that she had to have some tests down. It broke my heart to tell her. We waited until the morning of because otherwise, all the fun we had the 2 days before wouldn't have happened....her anxiety would have taken over. She wasn't happy and floated between crying and trying to process what was going to happen. She had pulled herself together while we were waiting but as soon as they called her name to go back, all bets were off and she was a mess. She was so upset that even the pre-med that usually works had very little impact. It's so hard to know that she's going to be upset and in pain but know that we need to do these tests to try and get answers for her health concerns. I went back with her when they were ready in the OR and let me say, I will never, ever try to carry her back again. I don't know what I was thinking. I should have used her wheelchair but I carried her. Not easy and problem not smart. She relaxed fairly quickly. I've lost track of how many times I have walked back to an OR or procedure room with her but it NEVER gets easier. I fight tears every time and I would guess that will always be that way.

Her procedures took about 1 1/2 hours but the staff at Mayo does a great job of keeping parents up to date on what's going on and having people come talk to you. We were concerned about how she would wake up because in the past, she's been one to wake up fast and be madder than mad. The staff really listened to our concerns and Kira had an great wake up. She literally woke up, looked at us and asked if she was done. She said she didn't remember anything and asked for DQ! That's my girl. Once she was awake and had some water, we were on our way back to the hotel.

Unfortunately, I managed to scare the crap out of her later that night. I had gotten a piece of steak stuck in my throat the night before but had ignored it with everything going on. Well, I felt terrible all day and that night things got worse. Jason ended up calling 911 and I ended up in the ER. I was fully expecting to have to have a scope done to take care of things and was in tears from the pain, feeling crummy and being worried about having to stay in the hospital. I needed to be with Kira and be at her early appointment the next day. Well, a few sips of COKE and the steak was out. I'll spare the details but will just say, if you ever have food stuck......get a regular coke and take a few sips. It works! That particular Coke will be the most expensive one I've ever had and I didn't even drink 1/4 of it!

Our final morning at Mayo heading to see Dr Renaud one more time. It was a quick appointment. The few test results they had back were from the lumbar puncture and they were normal. We will have to wait 2-3 weeks to get the rest of them back. Depending on if they find any answers, we may have to make anther trip to Mayo this summer to meet with the doctor doing the rest of the tests.

It's been 7 days since Kira's muscle biopsy and she is doing pretty good. She still complains at night about her leg hurting but she's becoming more active every day. So proud of this girl!