Friday we went to the Children’s Hospital in Oakland to see an endocrinologist (hormone doctor). We had to skip school to make the appointment, but I feel it was worth it, because we need to make sure everything is going right inside that cute tiny body. People with ONH usually have hormone problems along with vision impairment. Most often it’s growth, cortisol, and thyroid. Yay….
Before we even see the doctor they take her blood pressure. Apparently having her appendages squeezed is one of the worst experiences known to man. They’ve tried to take it the last two times she’s been to the doctor. This time, same as last time, she screamed like they were pulling off her fingernails until they stopped, with no reading of course. Completely wasted effort that has just managed to put her on edge. So when they tried to take her height, she decided she didn’t want to lay down. *rolls eyes* What am I supposed to do? We proceeded to pin her down to the table and stretch her out to her full height.
The doctor told me that since she’s still growing in height, albeit slowly, and just barely growing in weight, it is more likely that she just isn’t getting enough calories. With our picky little eater, this is hardly a surprise. We’re being referred to a Nutritionist, who is going to tell me to make her eat more food. DUH! I know that already. I’m just hoping they can help me find ways to do that. Maggie eats what she wants, when she wants.
Exhibit A: She likes apples. Some days she’ll eat two whole apples. Most days she just screeches, “NIIII!!” (For unknown reasons, no has become ni lately, which I don’t get because the kid speaks in full sentences. My guess is because it causes that much more pain to my ears when its high pitched and right in my ear.) Then she proceeds to eat chips. or crackers, or dry cereal or whatever other small similar snack food we can sneak past her lips.
Introducing a new food is next to impossible, unless it’s a new type of cracker. She eats nothing but apple sauce off a spoon, so nothing gooey, sticky, wet, or gross in any way. She drinks milk. All the time. She’s still on whole milk and we add Nesquik to get her as many calories as we can. She does like smoothies, so she’s getting some spinach and carrots and lots of fruits. She’ll eat fruits on their own though. Oh, and bacon. So she does get some protein. Other than that, I’m out of ideas. Anyone? Please?
Back to the Hospital experience…Turns out cortisol comes and goes in waves over the course of the day. So testing it at a random time during the day, we’re not going to know if it’s because it’s at a low point in its cycle, or if she’s got low levels. We came back the next morning as soon as she woke up, when cortisol is supposed to be high, which turned out to be 6:30am. Yay!! (Feel the sarcasm radiating off that little word?)
They gave me a funky bag your supposed to put in their diaper to collect urine, she hated it, so we sat her on the potty for a bit. A friend said kids usually go pee within the first 20 minutes of waking, so I figured this was the best chance to get some. 5 minutes of sitting on the floor next to her, singing some potty songs we’ve made up, SHE PEED!! That’s right! We got some pee in the cute little potty, which also meant she didn’t have to have a plastic bag in her diaper. Lots of happy people in our house.
Didn’t bother to change her out of jammies since we wanted her as comfortable as possible when they started stealing her blood. It was Saturday morning, so Brandon was able to come with us for some moral support. Turns out though only one parent can be in the room with the kid. Brandon handed her right over and left with a, “Good luck.” Sigh. It’s sweet though, that he can’t handle her hurting.
The phlebotomist showed me how to hold her down so she would be unable to wiggle out. Now, I’m a medical assistant. I’ve done shots and IVs and taken blood from my fellow classmates, then from patients when I worked doing my internship. I’ve even given Maggie some of her vaccine shots. It’s sad when she cries, but she stops quickly, and just complains about the bandaids until I let her peel them off. I thought I would be fine, no problem. I was so wrong.
She got out a butterfly needle, and I thought, “Oh that’s a good idea since they’re smaller, it’ll fit into her little veins.” When Maggie wears long sleeves, she does not like the sleeves to be pulled up at all, but of course we had to pull them up to get to her vein. So before we even get the tourniquet on she’s whining and pulling on her sleeve. Tourniquet on, and she says, “All done with the sticker.” More whining and pulling on the sleeve. I guess the rubbery band reminded her of a sticker. Then I have her in full body lock and she gets poked. Screaming like she’d just been stabbed with a needle. Oh, wait. They took NINE vials of blood!!! I didn’t think she had any left after that! It took 2 or 3 minutes to fill all the tubes. She just cried and cried and she can talk now, and was asking me to make it stop, but I couldn’t. AHH! Gut wrenching sadness! I wanted to make her happy, make her stop crying, but I just had to hold her tight to me, sing to her, talk to her, try and soothe her anyway I could. She liked the singing, but then I would be distracted by another tube being filled and pause in my singing, so she would start screaming and struggling again.
Oh! It was so sad! I almost cried with her. Vials filled, its time for cotton and tape to stop the bleeding. My girl does not like bandaids. I pulled her sleeve down over the tape and tried to distract her. Strawberry milk did the trick for a while, and definitely helped calm her down. Then we got out to Daddy and she was much better. She convinced us to take the bandage off within 5 minutes though, with her whining and pulling on her sleeve. Her dad is such a sucker. He’ll do anything for her. It’s adorable.
Breakfast at Jack in the Box; she got a bottle of chocolate milk, so she was a happy girl. Even ate some granola bar. I was still really shaken up.
I love Maggie. I hope that in two months when we finally get to hear back what the results from these test are she’ll be ok. I know we can handle whatever comes our way. The Lord does not give us anything we can’t handle. I know we can do it. We’re a strong, happy family. Lots of love, and we want for nothing. We are so blessed.
I don’t want to be the one holding her down next time. She’s precious.