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So yesterday, (Thursday) we had a full day in NYC. 2 doctors appointments and a whole lotta traffic.

We went to see Dr. Levitin at Dr. Waner’s office yesterday. We discussed ME and what’s next. Basically they don’t plan on doing any surgery on her face quite yet. We’re gonna see how things go with Dr. Bernstein with the sclerotherapy (injections). But that’s considered a surgical procedure still. (I will know more about that when I visit with Dr. Bernstein on the 27th). They are however going to do laser and injections on the tongue/mouth area in between and continue with that (which surgical procedures as well). So the next one has already been scheduled due to the fact that we have an awesome surgical nurse who loves ME and we also get along with well…. (and she’s on top of everything!) The date for that is April 25th. I hope this one goes well. In all honesty, she only had trouble for 24 hrs with the last, and everytime before that it was no pain at all, so nonetheless it should go ok.

Speaking of the surgical nurse, we planned to hang out with her, her husband, and her son sometime in April. Her son is 4 days younger than ME. Should be fun! (See I told you we were pretty friendly).

So then we went to see her ENT, this ENT is supposedly excellent and she works along with Dr Waner sometimes. However she has a horrible bedside manner. This is the 2nd time I was at her office, and she really rubbed me the wrong way. We might be going back to her original ENT who we love. At this point the ENT plays less of a roll because Dr Waner is himself an ENT though he more specializes in her condition and things…. so anything major- he can handle. Anything small, any ENT can handle. So we really don’t feel like we should need to go to her if she doesn’t make us comfortable.

I think we’re changing ME’s trach size from a 3.5 neonatal trach to a 3.5 pediatric one. I guess she’s big enough now lol. It’s just a bit longer inside to accommodate a longer trach as she’s grown. You won’t notice the difference on the outside.

Speaking of growing, it was suggested by both the ENT and Dr. Levitin that we begin to go to a pediatric Endocrinologist soon. So we’ll be looking around for one of those. Yep another dr into the mix. (She already has 5- an ENT, a Gtube dr, her specialist, radiologist (Dr. B), and her regular pediatrician). The endocrinologist will just monitor her growth, as she is behind – most likely due to the steroids…. and it’s possible if she doesn’t catch up she’ll need some growth hormones or something. But I’m not going to assume anything yet, they know only a little about this which is why they want a Pediatric Endocrinologist’s opinion.

Anyway specific things that I can think of to pray for right now would be:
– Successful surgical procedures
– More flexibility in her tongue, less stiffness (to improve eating/speaking skills)
– Growing, Growing, Growing (she’s doing well with it lately, want to keep that up though)
– Finding a good gtube dr (we need a new one and that area needs some attention as it still is a bit red/sore and well just a mess)

Don’t forget now, this little girl is a true joy and happy- running around everywhere as I type this. If you haven’t seen her lately, it’s time to schedule in a visit with us! haha. I know that we aren’t in touch as much as we like to be, bug us anyway though… we’re oh-so busy lately as the family has lots of things going on- both sides…. babies being born, christenings and weddings happening, etc.

THANKS FOR READING 🙂