Botox for Babies

Lily on her way to the hospital on Tuesday.

On Tuesday, I took Lily up to the new Primary Children's Hospital in Riverton to see her rehab doctor, Dr. G. Lily went there because it has superb parking (bonus!), and the service is fast for the type of procedure that she required.

Lily went in to get Botox injections. No, Lily doesn't have baby wrinkles, and no, I'm not some crazy Toddlers & Tiaras mom. There's nothing cosmetic about these injections. I have actually been pushing back on this procedure for the past year primarily because I didn't want to shoot Botox into my little 2-year-old for obvious reasons. This Botox procedure was aimed to aid Lily by reducing the spactisity in her inner thighs and hamstrings. We were hopeful that this would increase Lily's ability to sit up for longer periods of times and enable her to eventually bear weight on her legs.

However, what I was really dreading were the Botox injections that would be given in her salivary glands which would help reduce the amount of saliva that drains out of her mouth continually.  I have said it before, but this is the one thing that really bothers me about Lily's condition. She rarely goes a minute without drooling, causing us to have to race to get a bib on her (and cover up her adorable outfits) or find some sort of rag to clean her up constantly. Drool has become my nemesis in life.

I had waited on doing Botox on her for over a year in hopes that maturity would kick in and that her muscles would tighten up and proceed to get stronger on their own naturally. But after visiting with Dr. G last week, she said it was time to give it a try. So after discussing the pros and cons and saying a prayer with Martin, we decided to try it this one time. If it doesn't work, then we won't move forward with the series.

I think the fact that Lily had to be anesthetized is what scared me the most. No parent wants to make a decision that might potentially scare their child or worse--cause them further harm. But Lily has been anesthetized twice before and has sailed through the process. My stomach never seems to fail to drop to my knees when I see my baby's lifeless body flat out on the table. At that point, I usually have to leave the room because I start to panic AND the doctors don't want parents in there anyway in fear of  them doing just that, "Freaking out!," which is quite possible in my case.

The procedure took about two hours. I had tons of magazines, and of course, I had my iPhone, but both of them were put to the side as I paced the floor. Luckily, while I was in the waiting room, Lily's home therapist, Susan, happened to be there with another child and was able to take a few moments to sit with me and further explain the procedure. She reassured me, "They do this all the time. Lily will be okay." It was a SIMPLE procedure. But it was my little girl in there!

Finally, the nurse came out and took me back to the recovery room that also had about six other babies lying flat out "napping," but really they were trying to get them to each wake up from their particular dose of anesthesia. It was actually quite precious to see them all dreaming away.

See, Lily can't help but smile even when coming out of a deep sleep.
It's in her sweet nature.

By the time I got there, Lily was already flipped around and sitting straight up on her bed with assistance. The sweet thing about Lily is that even through her grogginess and fog, when she saw me walk in the room, she smiled her million dollar smile at me. The nurse said that when she woke up, she began scanning the room, looking for something. Looks like it was me, because she couldn't have been more overjoyed to see her momma.

Lily still trying to wake up.

Now it's been three days since this Botox procedure, and I'm still unsure if it was the right thing to do for her particular needs. She is still drooling, maybe even worse. I called the doctor yesterday, and she said it could take up to a week for it to really start working. We'll see. If it doesn't dry up her salivary glands, I'll be severely disappointed. Her legs seem "floppier" than before the Botox shots. Can you see how she is sitting in the photos? Normally, she sits with her legs much closer together. Now she sits like a little frog with her knees completely flat on the ground. Her therapist, Mike, said that is pretty normal for a few days, and then she'll learn to compensate by using her other muscles.

Truthfully, I'm not overly concerned. I just want to make sure that I remain Lily's advocate and really weigh out what works FOR Lily and not continually have them testing new procedures on her.

I'll keep you posted on her progress. I am glad to have my little drooly, floppy-legged dolly with me, and if it doesn't improve, then we just need to shift gears and figure out a new game plan. I mean, life is all about learning, taking new paths, and gaining knowledge in places one would never have imagined, right? With Lily, I get these opportunities every single day.