Tuesday, June 26, 2012


Last week I got a very unexpected call from a growth hormone company, saying they were sending me free drugs before we’re even approved by insurance, so we can start now and don’t have to wait. But see, they’re confused. I want to wait. I do not want to poke my daughter with a needle every day. Still she proceeds to give me all the information I’ll need to know about the packages coming to our house, and the nurse that will be calling to come teach my husband and I how to properly stab our sweet daughter. Sigh. I’m not ready for this. Which no one takes into account, and these beauties show up at my door.  poke1A literal backpack full of torture supplies. I went to my cousin’s wedding in Utah this weekend, and figured I’d be nice and not leave Brandon to do this all by himself the first couple of times it has to be done.  The nurse came yesterday after he got off work.  We got to practice how to swab everything with alcohol, attach the needle, and on a cute blue little pillow…. STAB.  She screamed and wiggled as soon as she smelled the alcohol, then I wiped her leg…not good. Brandon had to hold her down. It was done and over with quick enough, but really? Every day? The nurse said some people give it to their kids after they go to sleep. We’re going to try it tonight, see if she stays asleep.

So yesterday was…awful. It ended with the stabbing in the leg, but began with the dreaded taking of the blood pressure and temperature. She may scream louder at having her arm or leg “hugged” by the BP cuff than she does being poked by needles. We went up to Oakland Children’s Hospital to get a ACTH Stem test. Something with Cortisol levels. I don’t even know anymore what they are doing to her.  Luckily this test only lasted an hour.  The one we were scheduled for, though we talked the doctor out of it, was a 4 hour growth hormone stimulation test. No, thank you!

We went into the day hospital.  I see all these tiny kids hooked up to all sorts of machines with lots of tubes and IVs running everywhere. That scared me more than anything. But no one was screaming. They were calmly eating the lunches provided, or watching their own little TV, or playing the Playstations hooked up to their little TVs (crazy right?) So I felt a little better.

I don’t remember any other kid crying the whole time we were there. Maggie however, screamed about the BP, screamed about the thermometer, and when they put the name tag bracelet on her ankle, went off the edge. She eventually calmed down, but kept telling me, “I’m all done with the bracelet. Share it with Mommy! Please Wendy(the nurse) can I have the bracelet off?” Oh, it was so sad! Luckily I had Regina Spektor and a slinky.  Then they come strap her arm to a board so she cant move her wrist once the needle is in.  They took her blood, then gave her some medication, then we had to wait an hour and they took more blood.  Fingers crossed we don’t have to do that anytime soon. Oh, wait. She has to get blood drawn every 3-6 months while on growth hormone to make sure it’s working. Sigh. Hopefully she’ll get used to this soon, and it won’t be so traumatic every time.

We have a before, trying to pull off the bracelet, then trying to get the board off with her knee because we’d already discussed that peeling off the tape is a bad choice and would make it break. She calmed down quickly, but kept exploring the tape and tubes board and gauze with her left hand.  Last is the end, we had to keep it one long enough that she was for sure not bleeding anymore. I’m glad that’s over.
poke2How am I going to do this every day?? Luckily we have a slinky right?DSC_0648-2

We ended our trip to the hospital with a stop by to see the Westovers! Wonderful friends from our church, who's twins were born on Friday, at 28 weeks! Glad they are doing well. Check out their story: http://www.kellywestover.com/

Tuesday, June 5, 2012

Growth Hormones and Preschool

I’m going to pre-apologize for the inevitable scatterbrained-ness this post will be. I’m confused and a little frustrated and the thoughts in my head refuse to sort themselves out into a solution. Rude.

Let’s just start with a cute picture. She insists there be a braid in her hair at all times. She likes to feel it.


So a few weeks ago, we went in to get the results of Maggie’s blood tests from the endocrinologist.  She’s a very nice doctor, told me that most everything was normal, except of course those things that were not. Sigh. So we have low levels of one type of growth hormone, which is apparently the one related to nutrition. So, great. Maggie’s picky eating is definitely exacerbating her general smallness.  And low Cortisol. We’re told that stress testing is the next step. Yay! Because the first time you stole my child’s blood wasn’t fun enough, let’s draw it out for 3 hours.

A few days later the doctor called back, and says that instead of putting Maggie through the 3 hour test (this still leaves the one hour cortisol stress test) we should just start her on growth hormone therapy. Really?? Instead of doing more testing to see if this is really what we should be doing, we’ll just do it? I told her I’d call her back. Talked to Brandon, he’s not a huge fan of it. Of course I’m not relishing the idea of stabbing Maggie with a needle every day ‘til she’s a teenager, but if she’s not growing…. So I talked to my dad (Internal Medicine doctor) and he recommends at least another MRI if not the test. Then we can compare it to the first MRI, see if there’s been any change in the pituitary. Sounds good to me! Though putting her under anesthesia was one of the hardest things ever! So I will be calling the doc tomorrow and setting that up.

We went to school on Friday. Maggie loves school. Or at least loves to talk about it.

me -“What do we do on Friday?”

Maggie-“We go to school! And cuddle Laura! And hear the ABC song! And walk in gravel!”

Once we get there….eh. It’s apparently not as thrilling as she makes it out to be when she talks about it. She’s really stubborn. She will only do the things she wants to do. She’ll try something new for about two seconds, usually screaming the whole time. And unless she immediately likes it, she screams until I stop making her try it. Laura brought out a bunch of magnets. COOL! I am just mesmerized by magnets. Maggie thought the “U” shaped one was neat for about 15 seconds. Longer than if she totally hated it, so that’s good. But then came the screaming because she wanted to listen to more music.

Meanwhile Ella (the other girl in her class-who is about a month younger) was just fascinated by the magnets. Sigh. Why can’t my child have that look of wonder and awe on her face? Why won’t she try new things? How is one teacher going to handle Maggie and a bunch of other kids? How is Maggie every going to be happy in school? And…..I started crying.

I’m such a baby.  Luckily Laura is tactful, understanding, and very helpful.  She’s going to set up a meeting with Maureen, Maggie’s possible preschool teacher for next year.  I know that talking with her will really help.  I’ll either begin to have faith in her, or not, and which ever way, at least I’ll better understand the situation I’ll be putting Maggie into come September.

Talking to a few other people since my break down in front of people (seriously, how embarrassing!?) I’ve realized that I’m putting Maggie in the “special” category, when she doesn't need to be.  Nope, she doesn’t want to share. Yes, she throws tantrums. Yes, she’s a picky eater (Come to find out all these 2 year olds I know that eat more than I do are not the regular. Sigh of relief). She the same as most other 2 year olds. She doesn’t want to do what Mom says. Neither does any other kid….ever.

I know she’ll be fine, We’ll just have to get used to the changes coming our way, and that the other kids are probably going to touch her.

I hope they’re nice.