Elena

Elena

Wednesday, August 17, 2011

MRI and Endocrinologist

Wow it's been awhile since I last posted. Sorry about that. Guess I should update ya'll on what's going on with Elena. First, the doctors. In the past month or so Elena has been to her pediatric Endocrinologist and has gotten her 3rd MRI. (She's had a MRI every year around her birthday.)

Endocrin:
Not a whole lot happened at this appointment. She was supposed to get some blood work done but since they saw she was going to get an MRI gone a couple weeks after her Endocrin appointment they decided to wait and get the blood when they poke her for the MRI. Although I was kind of annoyed that I drove an hour to the appointment and they didn't even take any blood, I was glad Elena would only have to go through getting poked once.

They measured her height and weight, which I didn't catch cause they did it really quick. Then the doc talked to me for a little while about Elena's size. Her height to weight ratio is good but she is still very small for her age. Her appointment was in late July so that's about a month before her birthday and the doc said she is as tall as a 21 month old. The doctor did not say this next part but I think she weighs as much as a one year old. I say this because they say kids have to be at least 20 lbs before being able to sit in a forward facing car seat and that's usually around one. The doctor said that she could be a late bloomer or she could be small because of not producing enough growth hormone because her pituitary gland has been affected by her eye condition. (We are leaning toward the 2nd reason.) Last year they checked her growth hormones and they were low but normal. I'm just waiting now to hear back about he latest test.

The doctor said she doesn't want to give Elena growth hormones unless we have to but if she doesn't start growing we may have to. Luckily, it will be at least a year before we consider giving her anything. It will be a year because we have to wait until she is 4. The doctor wants to do an x-ray of Elena's bones. This will help tell her is Elena is small because she is a late bloomer or because of hormones. The problem is, until age 4, bones don't show up on an x-rays. All you'll see is the outline of the skin and empty space. Crazy huh?! This is because the bones haven't mineralized or something like that. So after Elena turns 4 she will get an x-ray and we will decide whether or not she needs growth hormones. I really hope she doesn't.

They are also monitoring her thyroid and other hormones. I'm hoping all is well cause I don't want to give her hormone shots. She'd get poked with a needle everyday and who knows what the side affects are. It's scary to think about. At least it will be a few years before I have to worry about that stuff.





MRI:
Her MRI was on the 12th at Primary Children's Hospital in Salt Lake City. This place is great. Everyone seems to really know what they are doing and they are all really nice. Her appointment was scheduled for 9:30am but she didn't get put to sleep until 11:30am. I wasn't surprised. We'd done 2 of these already so I know how they work. Also, I requested the IV Team this time so we had to wait for them. The IV Team is a small group of about 2 or 3 people who only do IVs on little kids. That's it. That's all they do all day every day so they are really good at it. People always have a really hard time with Elena's veins and last time she went home with about 6 band-aids cause they tried so many times. I wasn't going to let that happen this time. The IV team did it in one shot, although the almost had to do it again.

Usually we need 4 people just to hold her down so they can put in the needle. She is surprisingly strong, yet no one believes me. They'd get one person to hold her, besides me, and then be surprised that Elena was getting away. She is very strong and if you don't watch out she'll kick you in the face, as one of the nurses found out last time. lol I was pleasntly surprised that the nurse this time believed me and even more pleasantly surprised at how non-resistant Elena was. Usually, she's kicking, screaming, waving her arms, arching her back, anything she can do to get away. This time she just laid there and cried. She even tapped her hand (the one that wasn't getting poked) to the rhythm of the songs I was singing to her.

It was sad and sweet at the same time. Before they came in to put in the needle I was telling Elena she was awesome because of how well behaved she was and by letting them do all their tests. Then when they put the needle in she cried then through the tears said "I'm awesome!" It was so sweet, yet sad. All the nurses went "Aaaaawwwww." It was really sad when she kept saying "All done please. All done please. Take it off please." She was so good. I was so proud of her.



Afterward, we sat in a rocking chair while we waited for them to get the meds and she held her arm and felt the bandage and kept saying "Take it off please". I told her she had a big band-aid on her arm and we couldn't take it off . Then she kept saying "You have a big band-aid on your arm. It's kind of rough". She said it was rough because I was trying to distract her by having her feel the texture. She was so cute. We rocked and sang songs until they came to put her to sleep. I sang the "Monkey's jumping the the bed" song so many times I never want to hear that song again!

About the time they started putting her to sleep, her dad called. She was already kind of out of it so she didn't say anything but I like to think she liked hearing her dad's voice before she drifted off. She "fell" asleep in my arms and I carried her to the MRI room. The nurse took her from me and put her in the MRI. I got to watch while they hooked her up to all the monitors.

When they were done, they brought her to the recovery room where I was waiting and laid her on a bed. They let her sleep for about 20-30 minutes before they had me start trying to wake her up. That is very hard to do when they are all drugged up and she was not happy. She'd wake up long enough to scream angrily at me and then fall back asleep. At one point I was holding her and she peed through her diaper. I had brought a change of clothes for her but now I needed new clothes! The nurses make sure she ate and/or drank something before leaving. She slept the whole hour ride back and after having some time to really wake up was a happy girl. In fact, she was happier than usual. Guess there's nothing like a drug induced nap to make you feel well-rested. lol

We meet with her Neurologist in November to discuss the MRI results. I'm on a cancellation list for earlier though. I hope we can get an earlier appointment cause November is really far away.