Thursday, November 4, 2010

botax round #??

Today Hannah had her 3rd round of botax under sedation and I'm not sure how many botax rounds total she's had, maybe 6 or 7.  The first time we went to the Comfort Zone, she did fine.  The second time she was a lot more anxious about the IV insertion even though she had Emla cream to numb the area.  Today any time the nurse tried to get near her arms, she cried so they recommended giving her some oral Versed (Valium) first to take the edge off her anxiety and give her a little amnesia about the whole event.  That sounded good to me so I agreed and within 10 minutes Hannah was in outer space.  The only downside was the post-Versed hangover: Hannah was cranky and whiny the rest of the day. But I think it was worth it and plan to have them give it to her right away next time.  It's just not worth it to put her through all of that every 3 months.

This round, Dr. B did 18 injections total, 9 in each leg. I never processed the fact that when kids are under sedation docs tend to do more injections. When she was awake, Hannah only got 6-8.  But it makes sense; same amount of botax but spread over a larger area.  And I can see the increased benefits.  She does not scissor as much (turn her legs in and sometimes cross them) and is overall more flexible.

Anyway, I didn't have much chance to talk to Dr. B today about our recent SDR consult at Children's Hospital of NY so when we see him for our 6 week follow up in Dec., we'll hopefully get to do that. Honestly, up to this point he has not been that helpful to us in our research and exploration of options.  My biggest lingering concerns are whether Hannah is strong enough and secondly, where to do the procedure and post-surgery rehab.   It would be great if we could get his perspective on this to help us make a decision.

It's unfortunate that Dr. B is not a better resource for us, considering that he is the one most familiar with Hannah's physiology.  My feelings about him continue to be ambivalent.  I find him to be arrogant, and cavalier.  When we showed up today, he looked at Hannah's file and said, "Wow, we haven't seen her since June.  So what are we doing today?!" To his credit, I think he is a really smart guy and is probably more on his game than he lets on, but this is my kid here and I'm not usually in the mood for flippancy where major decisions about her health are concerned.  He does not inspire confidence.

At the Comfort Zone today, I realized that all of the other patients I saw there were also getting botax treatments.  I  watched as one mom and dad came out of the procedure room after her daughter had been put to sleep, and they were wiping the tears off their face.  I smiled at them, remembering how I felt the first time I saw them put Hannah under.  This time it was much easier.  It's the new normal.  My whole perspective on what's normal has shifted and changed so much since Hannah and Isabelle were born.  Each time we have a new experience, it's rattling and intense and then I slowly adjust and recalibrate and move on.  I wonder how it will be when she has her first surgery.

I would like to connect at some point with the other parents who bring their kids to the Comfort Zone for botax. Everyone mostly keeps to themselves, respecting one another's privacy, but I think next time I'm going to try to find an opportunity to introduce myself to some of them.  I bet we would have a lot to talk about. 


Amy said...


I'm E's mom. If you're looking for some information on SDR, or surgeries in general, I'd be happy to share information. Elena will have her 5th surgery later this month. I swear, my anxiety about this one (tendon lengthening) is nothing compared to SDR. That being said, I'm sooooo happy we did it. It was a great decision for us.
re: other parents in the pre-post op rooms: Totally wish I could approach them, hug them, talk to them. If I could help someone's worry/anxiety/fear lessen regarding their child/child's procedure, I WOULD. As if we don't have enough already on our minds!!

Anonymous said...

Thanks for the kind, kind words left on my blog. I don't know anyone at all who has a child with PVL and it feels awfully isolating. I'm so glad to have found people online who have been or are going through it now. You're right, I wish all the time to be able to fast forward to the future to see what is going to happen. I am, unfortunately, a worst-case-scenario kind of thinker. But I need to get beyond that and really try to enjoy my baby now. I think what your daughter has achieved so far is AMAZING. I think I would be thrilled if my Andrew grew up to be in a place where your daughter is now as a five-year-old. I'll just have to wait and see. Ahhh... the waiting game!!

Also, I know what you mean about connecting with people in the waiting room. Andrew had his first neurologist appointment a few weeks ago and most of the children in the waiting room had clear neurological issues. I could tell that the parents all understood each other... and there was so much friendly talk going on. And then when we came out, there was a whole new set of parents and children in the waiting room... and they were all chatting with each other, too!