Wednesday, November 26, 2014

The One Year Anniversary

It's the one year "anniversary" of Audrey's hospitalization. I have a lot of conflicting emotions about this: I'm so happy and relieved at where she is now yet I still feel the sadness and trauma of what she went through. The other night in the car I turned to a radio station that's already playing Christmas music (which I love, by the way! I drive Ryan nuts by playing it the entire month of December every year) and I unexpectedly starting crying when I heard the prerecorded announcement "We wish you a very merry Christmas, from all of us at Kool 108."

In a lot of ways I think this will be a difficult Christmas simply because the memories of last year are everywhere. I suppose you can't go through an experience like that unscathed. But at least Audrey won't have bad memories or flashbacks like that as we really didn't do many holiday traditions or celebrating last year. (On Christmas Day last year both Audrey and Ryan got the awful stomach virus that was going around and she vomited so hard her feeding tube came out. So we spent part of Christmas in the emergency room getting it replaced while poor Ryan sat in the corner drinking small cans of Sprite and eating crackers. And then I got sick the next day.)

I wasn't the only one remembering last year during her birthday party though. I've started a tradition of making a slideshow of pictures of Audrey during the last year to play on her birthday, and also as a keepsake for her. So this year's slideshow started with pictures of her first birthday party and hospital stay. Part of the reason I included them is because it's really amazing to see her progress throughout the year. I also didn't want it to seem like I was hiding those pictures, as they are part of her history and I think it's important to acknowledge it, especially as she's older and watching it. We are all about transparency and honesty in this family!

She fell asleep on her Great Aunt during the slideshow

Besides the emotional aspects of the slideshow her party was so much fun! I'm sure it felt extra special to us, to see her enjoying it and running around excitedly, because during her first birthday party she was very clingy, lethargic, and hardly smiled. This time she ran around babbling excitedly to everyone, eagerly opened her presents, and ate almost a whole cupcake!



On Monday she had her 2 year check up, which I've been nervous about even though I can tell she's doing great and growing. Our doctor was taking longer than normal to come in the room as she usually is right on time, so that made me feel uneasy too. When she finally came in she asked a few weird questions like "Do you think she has another UTI?" and "How is her energy level and have you noticed dry skin lately?" Then she wanted us to double check her weight. It turns out the nurse had written it down wrong as 22 lbs! No wonder she was concerned! (Audrey weighed in at 23 lbs 8 oz a month ago at the urology appointment). This time her weight was 24 lbs 9 oz, but she was wearing clothes and holding a toy so it may actually be a little lower. The doctor had been making a plan for us before coming into the room as she thought Audrey was losing weight again!

Upon realizing her weight and height are great and right on track (33 inches in height, so about 25th percentile for both. Not even the bottom of the charts anymore!) we were able to talk about the regular things for her check up. She did write an official referral for speech therapy and said it was completely up to us since Audrey has made substantial progress since she last saw her. She is now "babbling" a lot, saying many different sounds, and occasionally real words and short sentences! One of the cutest things she's doing lately is "reading" a book to herself aloud. The doctor said that she should be fine either way but she may progress faster if we do therapy. I plan to schedule an evaluation with a therapist my friend recommended sometime in January and we'll go from there.

She also recommended looking into physical therapy or even gymnastics class, as Audrey is a little behind in some gross motor skills (she can but won't walk up and down stairs, she prefers to crawl, and she hasn't kicked a ball before). Funnily enough, my mom got Audrey a parent/child gymnastics class as her birthday present!

Audrey had a slightly elevated temperature, which we thought was due to her having a mild cold. I mentioned to the doctor that, as far as I know, Audrey has NEVER had a real fever, not even when she had that first UTI for who knows how long. I had mentioned this is several doctors in the past but they all disregarded it, even her pediatrician. Our current doctor, however, said that this was very odd and could indicate that she is possibly immune-compromised, so we may address this in the future with another specialist. I have to admit that I've never taken her temperature more than a few times, however, because I assume that if she has a true fever she would feel very hot to to touch, which she never has. She has felt warmer than usual at times, but never hot enough that I would think "fever." Part of the reason I've never bothered with taking her temperature is because I wouldn't be concerned about most fevers as I believe it can actually be harmful to try to reduce them. See here for more information on this philosophy.

Audrey will be going in for another check up in 6 months, just to make sure she's still doing well. And although this time may be difficult for us in some ways, overall we're looking forward to a very happy (and normal!) holiday season!

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