Karly. My Karly. She has always been tiny. We just always thought that my family genetics were coming through. I mean I am the tallest female in my family at about 5' 6'. Crazy to think that is tall but it is. I am taller than my dad's brothers and sisters and about all my cousins on that side. They are all my height or shorter. My brother is a biological wonder at a whopping 5' 11"! Luckily for our family, most of us have married into taller gene pools. But I was never really concerned about Karly's height. Sure, she is short but she is half Schwartz. All of my own sisters are shorter than me, ranging in heights from 5' to 5' 4". My oldest niece is 4' 10". The doctors have always looked at Mike and I and said that she should be taller. He is 6' 2". I was just doing my part to improve the height in the gene pool. :) I always just said they didn't see my side of the family. We are short but adorable. ;)
Last June, Mike took Karly for her yearly asmtha check and height/weight check in. Mike has always been more concerned with Karly's height than me. He wanted to talk to the doctor about it. When he came home with Karly, she had been diagnosed with short stature and had a referral to see a pediactric endocrinologist. Whoa! We had been talking about taking her ro see one for a while. But here it was. She needed to go. Quite frankly, I scared me. Nothing could be wrong with my child. They are perfect. I mean besides them being typical kids. But you know what I mean. I was scared about how far this would go and what it would mean.
I made the appointment at the endo office for the end of August. I thought it was crazy that we had to wait almost 3 months to see the doctor. But she was a specialist and that is pretty typical. Before we went our pediatrican ordered a few tests to be done so we would have fairly recent information on Karly for the endo doctor. She a full blood work up done. I was not there. I can not handle things like that but Mike was and he was the one that was needed. I took him and 2 lab techs to hold her down and draw the blood while she was screaming. The child may be short but she is strong and her lungs work just fine. She also had to have a bone age scan done. This really is just an xray to see how her bones are and her growth plates. The good news was that her plates were wide open still. So plenty of room to grow but her bone age was just about 8 years 10 months. She really was too small for her age. So armed with the bone age scan, the blood results (which came back as all levels in normal range), and her FULL medical history, we went and met with Dr. Raman.
Dr. Raman is very nice and very thorough. I like her. Karly keeps wanting to ask her if her first name is Top. I just tell her that she works with kids and has probably already been asked that. She found that Karly was well proportioned just small and healthy. But she wanted to run the blood work again and add a couple of new tests. She wanted her tested for Cealiac's and Turner Syndrome. She didn't think she had them but wanted to be sure. Luckily she didn't have to have the Cystic Fibrois or swallow study done. She already had those done as a toddler. We didn't get the test done by our next visit because the insurance company was being weird abotu the pre-approval for the Turner test because it is a chromasomal test. Which means very expensive. Plus I wasn't pushing too hard for more blood work. She hates needles and will fight having them come near her.
After the October visit, we had to get these tests done so we did and just hoped the insurance company would cover them. Mike of course took her to get that round done. She did better but kept calling out the techs for trying to distract her. Happily, the tests cam back negitive. No Cealiac's or Turners. At the February visit the next test was decided and it was not going to be fun. She needed the Hormone Stimulation Test for the middle of March. She would be admitted to the Rapid Treatment Unit at Primary Children's and be hooked up to an IV. Sounds like fun for her, right. While she was hooked up they would give her 2 types of synthetic hormones, one at a time, and then draw blood every half hour to see how her body reacts. So the IV was best because they wouldn't have to poke her for each new draw. The first try for the IV didn't work. Luckily, the second one did. It was weird seeing her look so little in the hospital bed. The first hormone had no real side effects so she talked and painted right through it. She second one made her drowsy and fall asleep. Once that part of the test was done she could eat (she had been fasting). She was discarged about 5 hours later once she didn't throw up, could go to the bathroom, and was feeling okay.
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| Karly all set up with the IV. |
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| Not for the faint at heart. Here is the IV in her arm. |
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| She is out cold but Daddy is cuddling with her. |
We got the test results back about a week later. Her pituitary gland was not producing enough growth hormone. She needed to be on Human Growth Hormones. I gotta tell you that this was my worst fear. I had so many questions. First of all, daily injections for the child who hated needles and shots. Right. This should be fun. Second, for how long would she be on these shots? Who was going to give them to her? Do I have to stand there every night with a syringe and vial measuring her dose and injecting her in the leg and bum? How much is this going to cost? How much would the insurance cover? Might as well knock her out every night because this is not going to go well. But first before we did all this she had to get a MRI done to make sure she had no obstructions in her brain stopping the gland from working. That didn't go to bad. She just felt dizzy after and got to watch a part of a Harry Potter movie during it. The test came back normal. Of course my brother had to ask if they found out if she had a brain. She hit him for that one and he just laughed.
So at the beginning of May she started on daily hormone injections. It was a little scary getting all the supplies for this in. We now have a box of alcohol prep pads, a box of needles, vials of her homones waitingto be mixed a 2 sharps containers for all of the used needles. Scary. We took all our suppies and were trained by Katie, a fabulous endo nurse, on how to mix the hormones and use the easypod machine to administer them. I don't have to use the syringe and vial! Yipee! This easypod machine is awesome. It fits in my hand and about 6 - 8 inches tall. We mix a vial of the hormones. There are usually about 8 days of injections in one vial. We put it in the machine and it automatically measures the doses. :) Every night we start it up and attach a needle. It is a very small needle and only goes 6 mm into her skin. It is all subcutaneous. We clean her skin with the alcohol prep pad and set the easypod on her skin. Once it has full contact the button on top turns green, we press it, and the injection starts. It only takes a few seconds. But with Karly it feels like forever she thows such a fit before. Once the injection is happening she calms down. Strange child. We take out the used needle and put it in a sharps container. Over until the next night. She mainly gets them in the thighs and upper arms. She doesn't have enough fat for the stomach and barely enough in the arms. She refuses to do her bum.
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| Her is her torture....I mean, injection device. Her easypod. |
