This girl of mine is pretty laid back and easy going, as long as you don’t mess with her food or her sleep.
This morning, they messed with both.
This is what her morning was supposed to look like:
5:00 am-Urine Sample
6:00 am-Blood work7:00 am- Urine sample
8:00 am- Blood Work9:00 am- Breakfast
5:00 am- Failed attempt at urine sample and a meltdown because she felt like she did something wrong
5:05 am- (after the nurse left the room)- My angry 6 year-old with her thumb in her mouth said to me, “Mom, I thought they were going to wake me up in the morning!” (They really should install artificial sunshine on the outside of the windows with a switch the nurses can flip before they wake up the kids.)
5:15 am- another failed attempt at a urine sample, Clara is given a cup of water to drink (at 0-dark-thirty….YUCK!)
5:40 am- One more failed attempt
6:00 am- 2nd nurse comes in; Clara succeeds!..But nurse forgets to put the hat in the toilet that was supposed to catch urine. Ooops!
6:02 am- Clara is now wide awake, dancing around the room, and ready to play board games. I am ready to fall back into a coma.
7:00 am- Blood work
8:00 am- Another successful attempt at a urine collection, and Clara is about to STARVE TO DEATH...at least she thought so. "Mom, normally I get to eat as soon as I wake up." It's a gift my children have always possessed....being able to eat the second their feet hit the floor, unlike their mother who needs at least three hours and a cup of coffee to wake up before eating.
In light of the before-mentioned state of her stomach, the second blood draw was canceled, as it had to be done before eating, and she couldn't eat for an hour afterwards...after one more urine sample...which would have put her breakfast at 10:00 am. I was a little bummed, because I really wanted them to be able to have as much information as possible, but at the same time, I was thankful for their sensitivity to her situation. She is at the borderline age for needing that second sample, so this year, she gets away with it. :-)
Once Clara had eaten breakfast and the RT room was open, Clara was chomping-at-the-bit to go and play. That was my opportunity for a shower....a much needed shower. I left her in the RT room and an hour later, I was a new woman. However, I was not able to bask in the bliss for long. I took Clara back to her room, and in a round-about way, found out that Clara had been to the potty while in the RT room.
The urine saga continues...
They are collecting her urine every single time she potties this week, 24 hours a day. (Once she goes, we hang the hat up on a rack in the bathroom. Who knew there were racks for that?) It seems that the volunteer in the RT room took her back to her room to potty and handed her over to a nurse...a different nurse than the original one who lost her urine....and that nurse took Clara into her potty andforgot.
Because I am Southern Baptist, and somewhere deep in my bloodline there is a gene that makes me convinced that everything is my fault, my stomach was in knots. Hopefully their research on her is not totally blown...but either way, what was I supposed to do? I was in the shower!
I have been reminded many times today that as a Christ-follower, I am never released from the Great Commission...the whole world is my mission field. I don't get to take a break just because I don't feel like it. There were a few times today I wanted to lose my cool, to be a real jerk. Thankfully, by the power of Christ in me (because there is not enough power in me to keep me from blowing my top a few times today), I was able to bite my tongue, smile, and be loving to those around me. As a result, I was given the neatest opportunity today to get to know another precious mother here at the hospital. The burden she bears with her daughter seems almost unbearable....proof that God gives grace when grace is needed. She is a believer and is not wavering in her faith, but life is just hard for her right now. I talked to her for a long time in the RT room, and it so happened that we ate lunch in the cafeteria together. I think she really needed to talk.....and I really needed to listen. When lunch was over, we went to the parent lounge and prayed together. It was such a sweet time....a gift from the Lord..that I know I would have missed out on had a been a jerk to the person I wanted to be a jerk to just a few minutes earlier....and I have a new friend, to boot!
Clara also had PT today, which was unexpected, but fun! The therapist here gave me some great ideas for exercises to strengthen some of her weakest muscles, and ways to make it fun. I am always amazed at the creativity of Physical Therapists. I am also amazed at their hearts. I haven't met one yet who doesn't love the children she works with.
Clara and Ms. Donna, the physical therapist.
After lunch today, we took our trip to the St. Louis Children's Hospital. That place is fantastic! It is ranked #5 in the nation, and after just a few minutes there, I knew why. Clara made instant friends with Ms. Gloria, who checked us in, and gained a few more goodies for her loot. I really think I should have brought an extra suitcase for all of the gifts she's been given this week. She went to the hospital with her backpack containing a teddy bear and her toy laptop. She left that hospital with two new stuffed animals, a new pair of gloves, and six new princess stickers. Spoiled. Rotten. The ultrasound went great..took less than ten minutes. We won't know the results until tomorrow.
Leaving for St. Louis Children's
Clara with Ms. Gloria, our new friend at St. Louis Children's.
Tomorrow is a really big day. At some point right after lunch, every single person that has taken part in Clara's team (geneticist, nurses, lab techs, radiologist, physical therapists, etc.) will be meeting together to discuss Clara's case. We were told that they would talk for an hour or an hour-and-a-half and then call us in to ask us both questions. Please pray that my mind will be clear....clearer than it was the other day when I bumbled like an idiot to the geneticist, and that Clara will not be nervous, but will speak up when spoken to. After tomorrow, we might have some more answers, but most of our answers will likely come on Friday before we leave.
I do know a few things for right now.
1) They feel nearly 100% sure she can avoid the surgery on her legs...at least until she is a teenager. Her geneticist thinks her legs will straighten right up and she will never need the surgery. Praise the Lord!!
2)According to her x-rays, she definitely still has hypophosphatemic rickets.
As for the rest, I will post as I know for sure.
Overall, this is still a really productive trip. I am so thankful to be here! I must say, though, that getting a little taste of the outside world to go to the other hospital today made me dread coming back to our little room. Clara couldn't wait to get back, though....she is happy. Therefore, I will find my contentment. :-) For this week, it seems that "Home is where we hang our hat". :-) (You get bonus points if you get that one.)
Thank you again for your love and prayers. Your messages have been so encouraging!