Is it Over Yet?

We made it to FL unscathed, albeit exhausted.  We spent many an hour at the hospital and clinic today going through the pre-op ritual, which always entails a lot of waiting, a lot of questions, and a lot of crying (mostly from Annie, but um, pass the tissues).

She was actually a champ for the better part of the day, charming passer-byers with her smile and zest for life.  It was only after they started digging around in her vein (seriously) trying to get blood.  The nurse tried to tell me that she was crying because she was being restrained, not because it was hurting.  Are you kidding me?  Anyway, she finally passed out on me from sheer exhaustion and took a power nap which got her through the rest of the long day in a really good mood.

We are staying at a house that is similar to the Ronald McDonald House,  so we are surrounded by fellow patients of Dr. Paley's, which is wonderful.  I am amazed at what some of these kids have gone through, yet seem so full of life and resilience.  All of the other kids here (there are 9 other families) have lower extremity issues, most of which are profound.  You would not believe how these kids can still run around like everything is fine.  They have been to hell and back with surgery after surgery and endless hours of daily, painful therapy.  It's very humbling.  Truly it is.   And amazing.  These are some of the most beautiful children I have ever met.

We didn't realize that Annie would also be having a muscle transfer done on each thumb to finish out the pollicization process.  We knew she *might* have to have that done, but I suppose we just kind of forgot about it since her thumb use is so awesome.  Anyway, Dr. Paley explained how much additional function it should add, so it makes sense to have it done while he is already in there.  She will be under for about 4 very long hours tomorrow.  Glad she is up first!

Thanks for the continued prayers and well wishes....they really mean a lot and keep me going!

XOXO,
J

Ready, set, go!!!

We have been blessed with yet another miracle!  Our insurance has been reinstated (LONG story not worth telling) and Anastasia’s surgery has been approved!  Now all we have to do is go on quarantine to keep her well the next 9 days (well, actually the next couple of months would be nice, but I suppose I should not be too greedy!).    

Alexander is super jealous that Annie gets to stay home from school and has decided that pooping in his pants is a really good idea and a way to show us!  I understand that it is probably the only thing he feels he has control over, but I am so over poop!  I never knew I would get to a point where talking about poop is as common place as talking about the weather or what’s for dinner.  We had a conference with his teachers the other day and they told us one day he ran out of the bathroom and declared, “I pooped in the potty.  It was brown and green and REALLY big”.  Yep, that’s my kid!  We are trying to praise him a lot when he chooses to go in the potty (because it is definitely a choice for him!) so we called Aunt Katie last night from the car to tell her about his great pooping day.  I say, “Alexander, tell Aunt Katie where you pooped today”, and he said in a really excited voice, “I pooped in the potty”.  Aunt Katie promptly threw him a virtual parade for his accomplishment, at which point Annie spoke up and said in an excited voice, “I poop in my pants”.  How do you not just laugh!

At least poop stories (not the cleaning up part) make me laugh.  I am trying really hard not to think a lot about it, but when I do I get really nervous about next week.  I know in the long run it will be well worth it for her, but the whole process just sucks for her.  She cried non-stop for about 12 hours straight after her last surgery because she was in so much pain and so unhappy.  Valium and pain meds didn't work at all for her.  She was so miserable.  Granted, that was a much more complex and lengthy procedure, but it’s hard not to think about her pitiful little face that said please do something to help me. 

The good news is that she is a trooper and nothing keeps her down for long, so I know she will prevail!  Just wish she didn't always have to be tested though! 

Surgery Scheduled!

The May house is gearing up for another big surgery for Annie (hopefully) on Feb 21^st in FL.  Two big this have to happen first.  One, we have to keep her well, and two, the insurance needs to be convinced that the surgery is medically necessary (they are not convinced yet).  We have pulled her out of school and have her home with a nanny, so hopefully that will help in the health arena.  As for the insurance, well, not much I can do.  Hopefully the Dr’s office can work their magic and give them what they need.  I work for a new company (we were sold), so we have new insurance; therefore they do not have her full history yet.  I have to say that our last insurance was AWESOME and never questioned anything.  Being in this situation really frustrates the hell out of me!    

The surgery she is scheduled for is to lengthen the radius on both arms, which should significantly improve her function.  If you want to read about the lengthening process, feel free to visit Dr Paley’s website http://paleyinstitute.org/?q=intro-to-limb-lengthening.  While I dread it for her (and all of us for that matter) we are hopeful that this will be it for surgeries for many years to come!

Annie and I leave for FL on the 19^th, my mom will meet us there on the 19^th, and then Stephen will come the 20-23.  Alex will be staying home this time, which will be really hard on me to be away from him, but will be much better for him.  She has to stay in FL for a week, and then we will go to Dallas for a few days (I have a work meeting that I cannot miss) and then we will finally get to return to Nashville on March 7^th.

Start the prayers now!! J

We had a really pretty snow on Saturday morning and the kids had a blast playing in it!

Life is busy as usual!  Kids are both doing well and are growing like weeds!  More later…but here are some pictures…..

Alex at his Thanksgiving feast

Annie loves suckers but hates the camera!

Happy boy on hayless hay ride

Aunt Katie and Annie on a hay ride (sans hay)

My favorite little monster!

Couldn't get a good picture of her in her costume, but she looked cute in her Halloween Hello Kitty shirt from Aunt Katie

I'll show you mine if you show me yours....check out that pacemaker!

Cardiology Update

Anastasia is doing fantastic in almost every way!  In particular, her heart has completely healed.  What better news could we ask for?  She has a residual “patch leak” from the VSD repair and a slight valve leak, but the cardiologist said other than that (oh, and the ginormous pacemaker) her heart looks completely normal.

 

I have been waiting for those words for a very long time now and feel such a sense of relief to know that her precious little heart has finally recovered.  While I am not overly comfortable with the blasé mention of the valve leak (I have been to this movie before…they don’t always let on about the significance of what they see on the echo) I just have to trust that she is not in harm’s way and we do not need to worry about her heart.  

Okay, that’s a bunch of crap, but sounds good, doesn’t it?!?!  I will be calling for the written echo report so I can see the details in writing so I can research until my heart is content.  I really do; however, feel that she is okay and the leak is not of significance.  She was taken off of Lasix (diuretic) and was cleared for annual visits.  She is using her pacemaker 6.7%, which is more than ever before, but still hardly at all in the grand scheme of things.  They adjusted her settings again to see if perhaps she just has a lower resting heart rate.  We will do a phone check in 3 months to see.

Alexander and Anastasia both started at their new school this week (Montessori Academy).  Annie has adjusted well, but Alex is having a bit of a hard time, which is totally expected for a 3 year old.  It stresses me out and makes me worry beyond belief, but I am trying to stay positive and remember that change is hard but eases in time.   It is a fantastic environment for both kiddos so hopefully he will settle in soon.  I imagine it is confusing and difficult to be in a room full of complete strangers and new set of expectations.  Luckily, Annie is in a room with a friend from her other daycare, so at least she has one familiar face!

I am having to do some travel for work, so life is even more hectic than normal.  It’s great to have new clients and opportunities, but also very stressful.  One of my new clients is in Irvine, CA, so maybe I will get to go to Disneyland on one of my trips.  Nothing like seeing the Mouse to make you smile!  

Just a couple of pictures

Cool dude wearing my sunglasses (which I got as a treasure for pooping in the potty):

Can you tell I am up to no good?

All is well with the clan.....promise to update soon.....in the meantime, just thought I would share how big they have gotten!