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Saturday, October 8, 2011

"It was just frozen pee from a jet-airplane!"

Can anybody name that movie? :) It's one of our favorites but nobody else seems to appreciate it. :)
So yeah, collecting urine from a 22 month old who isn't potty trained is a bit of a challenge. I ended up standing Raya in the bathtub and letting the water run until she gave me what the lab needed. Then we froze it since they need it frozen upon collection. Fun.

Friday was a heck of a day. We dropped Kaida off at a friend's house so she didn't have to be there for the blood draws. Next time I want to go to a friend's house too so I don't have to be there for it. :) We went to OT and Raya got to play with Jello. That was a new one for her. She's never had Jello before. She wasn't much interested in tasting it. Her OT gave her a little baggie of Froot Loops and they squished the cereal into the Jello. Raya made all kinds of amusing faces ranging from shocked to amused to thoroughly disgusted. The disgusted face came mostly when a Jello-coated Froot Loop was placed in her mouth. I can't say that I blamed her though, that sounds pretty gross to me too. :)
When OT was over, we drove through the pharmacy to pick up Raya's new increased dosage of Prilosec. I'm pretty sure that the next time she gets the dose increased, they'll just give it to us in a gallon jug. :) Next we hopped on over to the clinic to turn in the frozen pee and get blood drawn. Ironically, we had to wait longer just for blood draws than we've EVER had to wait for an actual doctor's appointment there. Luckily, Raya thinks she owns the place and is quite comfortable & content to just roam around the waiting room chatting it up with random strangers and all of the ladies that work there when they come out to call patients back. Her flirtation of choice yesterday was a sweet boy that showed her pictures of his dogs on his cell phone:

When it was finally our turn, Raya was ready for a nap. She's no dummy either. As soon as she walked into the drawing station, she knew what we were there for. The only thing missing was our awesome lab tech who is one of 2 people to ever get blood out of Raya on the first stick. She apparently no longer works there. Bummer! Then I asked if the allergist's office had sent over the orders that I asked them to fax over and they hadn't, so we had to wait a few minutes for that to come in.
By the time we actually sat down to draw Raya's blood, she was DONE. She had enough and wanted out of there. The lab tech went to see if she could find someone to help hold Raya still but everybody was busy so it was just the two of us. I did the best I could but dang if that girl isn't the strongest little 22 month old I've ever tried to hold down for bloodwork! She has very uncooperative veins too. The lady stuck her left arm, dug around with the needle for a minute, and decided she'd better get the charge nurse to come help. Raya sat on the floor and threw a fit while she was gone. She wasn't a fan of the co-band on her arm.
The charge nurse came in and while I was holding a screaming Raya still, the nurse said something like, "Aww, Mommy, you're supposed to protect me, not let them hurt me!" I kind of wanted to kick her. My baby doesn't trust me because I've tortured her repeatedly and held her down for other people to torture her repeatedly for the past 20 months. Please rub salt in the wound.
Anyway, after a little digging in her right arm, she finally got the 10ml of blood that she needed and we were done. Here's a list of the labs the neurologist & allergist ordered:
  • Urine Organic Acid (indicates whether the body's cellular activity is functioning normally or not) 
  • Pyruvate (checks level of the enzyme Pyruvate Kinase, which helps metabolize glucose in the blood)
  • Lactic Acid (high levels of lactic acid in the blood indicate that body tissues are not getting enough oxygen)
  • Plasma Amino Acid (shows levels of amino acids available to perform their proper functions within the body)
  • Chromosomal Microarray (detects subtle chromosomal abnormalities)
  • Allergy panel- Milk
  • Allergy panel- Rice

Honestly, I will be completely surprised if any of it comes back abnormal. Cynical of me, I know, but I've just come to terms with the idea that we may never get an abnormal test result that gives us any kind of useful information. At this point, the only ones I'm even interested in are the allergy panels. Even if they come back negative, it still doesn't change the fact that she's shown sensitivity to both dairy and rice.
The rest of Raya's afternoon & evening were pretty uneventful. We rushed home from her appointment so I could do a newborn photo session for a friend and since she had fallen asleep in the car on the way home, she skipped her nap for the day. We are FINALLY enjoying some gorgeous fall-like weather (meaning the temperature has dropped below 90) so she has LOVED being able to play outside while we wait for the big kids to get off the school bus. I talked to the new GI nurse on the phone for a couple minutes. She called to see how Raya was doing & if we needed to move her appointment to a closer date. I told her that Raya had been having a great week & that the appointment in 3 weeks should be fine. (famous last words. Remember this for later.) We had a lovely evening with friends and then came home and put the kids to bed.

As I was crawling into bed at 10:15, of COURSE Raya started crying and woke up. It wasn't anything unusual, she usually does wake up crying around that time of night. The unusual part was that we couldn't get her to stop. She kept crying and nothing made her happy. I gave her the night doses of her meds and Donny took her for a drive and got her to go to sleep while I got her night feed set up. The second he laid her in her crib, she woke up and started crying again. For about 15 minutes, she sat on my lap on the bed squirming, crying, and trying to get comfortable but couldn't. I finally gave her Maalox and took her out onto the couch. I tried to lay down propped up on pillows against the arm of the couch but she wouldn't have it. She would get comfortable and then I'd accidentally touch something she didn't want me to touch (hand, foot, leg, head, etc.) and she's throw a fit and start crying again.
By this time it was about 11:45 and I found myself sitting up straight on the couch trying to hold completely still so I didn't make her mad and have to start the whole settling in process over again. She had a fit once and I got her to stop by playing Angry Birds on my phone. Then I tried to watch Deadliest Catch on Netflix but my phone was running too slow so it wasn't working.
Eventually we settled in for the night & went to sleep. It was frequently interrupted by her squirming & crying, but it was sleep. Then the pump went off at 2:15 so I turned it off and unhooked her. Since she was out cold to the point of being floppy, I thought it was safe to put her back in bed. WRONG-O. The instant I laid her down, she freaked out and started crying and screaming all over again. We ended up back on the couch where I got small snatches of sleep for the rest of the night until the other kids came down for breakfast. She's been really moody all morning too. I checked her teeth to see if there's anything new happening in there but it's just the same old molars peeking through that she's had for a month or two now so they shouldn't be bothering her. I don't know what's wrong with her but I'm pretty sure I can't take another night like last night!

PS The movie reference from the title of the post was Chicken Little. :)

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