A Doozy of a Parenting Day

I'm so glad I got caught up on the blog yesterday.  That means I can blog about my doozy of a day the actual day it happens.

I woke up about 7:30 this morning (yes, we are on a bad summer schedule) and I'm glad that I started in a good place.  With nothing on the calendar for the day I decided we needed to get some things done and so we started getting ready.  When I took Finn down to start treatments he surprised me by saying out of nowhere, "I'm sad I have CF."  It was a moment that I knew was super important and here it was while he was sitting on the couch, the TV was on, and Bree was anxiously awaiting a "show".  I asked him what made him sad.  He said "CF".  So I asked him what part of CF.  He talked about how CF made his body feel sick at times.  And he also talked about being different and I told him everyone is different.  That's called being unique.  I told him that CF made him special.  But I also told him that it is hard to be different and I understand it is hard to have CF.  I thanked him for telling me that he was sad about it and told him that he could always tell me how he felt about CF.  And then he asked me not to tell anyone because it was just between me and him that he was sad about CF.  And just as it had started, our conversation was over and he was back to watching shows for treatment.

After morning treatments, we loaded up into the car to go get our back-to-school haircuts.  From there we headed to Skate City to try our hand at roller skating.  I had bought summer passes at the end of the year from school that was a fundraiser and gave us a good discount for the session and skate rental prices.  We had never been before but I thought it couldn't be harder than ice skating.  I was WRONG!  Poor Finn was so excited until the skates were actually on his feet and he realized it was harder than he thought.  And then of course, there were "trainers" that some kids had and the boys wanted some.  It took a while for another mom to finally tell me that you had to pay to rent them.  Ummm....what??  I didn't want to take off my skates to head back to rent them.  So, I told the boys to suck it up and Finn decided he would go out while holding my hand.  The problem is I am not a good skater and here I was trying to hold up Finn and Bree.  It was a complete disaster and one of the most stressful and worst situations I have ever encountered taking my kids out.  I was ready to throw in the towel and go home.  Kai on the other hand was taking his time and skating around on the carpet areas and getting more confident. We thankfully got back to where Kai was and Finn took off his skates and threw himself on the ground.  I gave Kai a little more time and then decided I would look into one of the "trainers".  It was more expensive to rent a "trainer" than it cost to get in and rent skates.  It was ridiculous but I rented one and figured anything I could do at this point to salvage the activity needed to be tried.  Kai took the trainer and then felt good enough to get out on the skate floor.  I went out with him (with Bree trailing behind) and got him going and once he stopped to listen to me he finally started going.  Bree really liked the idea of skating but would get nervous every once in a while.  I think the dark and the loud music didn't help at times, but overall I was proud of her and Kai.  Finn on the other hand did not do well, and I will admit that after my morning success with him, this was a complete mommy-fail!  After an hour and fifteen minutes I headed to the snack stand to get everyone some drinks and lunch.  Bree was happy to see food as was Kai.  And after we ate everything I treated the kids to cotton candy.  They have never had it before and I wanted to do something to make the day somewhat decent and I thought that would help.  Kai was excited but Bree and Finn were skeptical.  The two youngest both put a piece in their mouths and then just spit them out.  So Kai dug in!  On the way home Finn finally gave it a try and realized it was good.  But I still ended up with some to eat myself after we were home.

This was before the complete melt down

Honestly, he looked a lot more pathetic before I got out my camera

Yay for cotton candy!

You'd almost think she liked it!

And then later in the afternoon I was outside getting something ready for someone who was coming over to pick it up when the phone started ringing.  Kai came out to let me know but I still ended up missing it by a second.  I realized it was the endocrinology office and hoped they would leave a message.  After the item had been picked up I was able to go into the house and listen to the message.  It was the endocrinologist calling to let me know that Kai's test results were in.  His cortisol test was normal but his growth hormone test showed that he did have a growth hormone deficiency.  Normal levels are above a 10 and the highest he ever scored during the 4 hour test was 3.3.  The doctor told me to call him on Wednesday (he is in the remote office here in the Springs tomorrow) to talk to him but in the meantime he was starting the insurance paperwork to get Kai going on growth hormone injections.  Unfortunately, Kai was hiding behind a wall and overheard the message.  He came out crying and ran off to his room.  After a quick call to his dad, I went in to talk to him.  He was hiding under the covers and crying and refusing to talk to me or come out.  So, I tried asking him what specifically upset him but after not getting a response I told him that I would tell him what the doctor said.  So, I explained to him that his body does not make enough of the chemical he needs to grow big.  I told him that he had a friend in the ward who also takes growth hormone and he said the shots aren't bad at all.  I also told him that I was happy we know what his body needs to grow and that we can get that for him.  And then I told him it was ok to be sad and that I was going to leave him alone and he could come out when he was ready.  He eventually came out after 15 minutes and seemed to do much better as he ran off to play with Finn.  We haven't talked about it since and I figure we have another week or two before we have to again, but wow--what a day!

I'm glad I was caught up so that I could update the blog with today's events.  And I'll do my best to stay updated as we go back into the school year and start this journey of growth hormone with Kai.