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!

Update and Pictures!

I went to Austin this past weekend for a wedding (John and Tasha) and had a great time (sans kiddos and husband)!  I love seeing special friends get married!  I also had the opportunity to hang out with Katie and Peter, Megan and Bill, and Michelle.  We had a lot of fun strolling down memory lane!

Here are some pictures of the festivities:

Michelle and Jeanine:

Katie and Peter:

 Megan and Jeanine:

  

Stephen survived in my absence, but thank goodness Mimi and Papa where there to help him.  They are quite a handful these days, especially when sick.  Annie has a yucky cold and is getting several teeth, so needless to say she does not feel well (who can blame her??).  She is also at that stage of being disagreeable when her plans do not align with ours (i.e. getting her diaper changed).  It’s great to see her becoming so independent and opinionated, but man it makes the simplest things twice as hard as they need to be.  It’s kind of funny to watch Alexander try to get on her case when she is not cooperating.  She runs off laughing  (after stealing a toy from him) and he chases behind her saying, “That’s not funny Annie”.  I thought the older sibling was supposed to torment the younger sibling?  In due time I suppose!

Annie’s left thumb is still doing great and she continues to use it as if it is her natural thumb.  Her right thumb; however, is not doing as well.  We are hopeful that with continued therapy she will get there with it.  Having the radial club hand does not help function, that’s for sure.  She also has a pretty significant contracture in her now index finger (which was originally her second finger) so it is just easier for her to grasp between the second and third fingers. 

It’s hard to believe that my baby boy turned three yesterday!  Where does the time go?  We had a family party for him a Chuck E Cheese last night and he had a blast playing with his cousin Jackson, Aunt Jen, Uncle Jedi, and Mimi and Papa.  Annie also had fun running around the joint spreading her germs.  Let’s face it, those places are germ factories anyway!  The kids slept great last night.

I started back to work full time last week.  I am not happy about it.  I’ll just leave it at that J

The birthday boy playing air hockey:

Poor thing got bit by an ant last weekend and his eye was swollen beyond belief:

Check out Annie's awesome looking hand:

 Such a great pincher grasp:

Hi there:

Great at holding bigger objects too:

Chillaxing at the mall play area:

Future Hitchhiker….

All is well in the land of the new thumbs!  The nasty scab finally fell off, and what is hiding underneath looks great!  At this point I do not think she is having any pain associated with it, so I am very relieved about that.  She is not moving it yet but I know that will come in time.  She brings her other fingers to it and uses it as leverage, so that alone is a huge improvement from where she was before the surgery.  I am so excited about the progress that she has made and feel such a sense of relief.

 

Annie is back to being her happy, spunky little self.  When she feels bad she is a bear, but when she feels good, she is the happiest little person around!  She has become quite the chatterbox lately and will repeat most anything you ask her to say.  Her favorite new game is to swipe whatever Alexander is playing with and run away with it laughing.  She is a quick little stinker!  As you can imagine Alex is none too pleased with her antics.  Luckily Alex protests by screaming that Annie has stolen something from him instead of snatching back whatever she has taken from him.  I know it sounds odd to encourage that, but the alternative might result in injury to her new thumbs or her arms.  So we are happy to encourage him to “use his words” instead.  He’s such a good sport!

 

We are all excited to welcome my niece and nephew (Emily and Ryan) to Nashville this weekend.  They will be staying with us for the week.  I am so touched that at their age, 11 and 13, they would want to give up a week of their summer to come play with us.  It is so sweet how much Ry and Em love their cousins, even though they are so much younger.  We are so blessed!

Look how great her hands look:

Going on a serious picnic:

Brotherly love (Alex helping Annie into the sandbox):

5 for 10!

5 for 10....what am I referring to?  5 days until vacation?  No, we don't go on vacations around here these days.  5 beers for 10 dollars?  No, but that would be an awesome deal!  I am actually talking about having to wait 5 very long hours for our 10 minute visit with the surgeon Monday (yes, the one in West Palm Beach, FL).  Granted, we didn't really need any more than 10 mins of his time, but wow, it was a really long time to wait with a tired 16 months old that does not feel well.  I should have counted the number of other patients (mainly kids) that were waiting to see him that day.  At a minimum there were 30.  Annie was by far the youngest, but she was also by far what is considered the "least involved" (thanks Missy for helping me out with a much nicer term than deformed).  We met some really great kids and parents during our wait, which is always so helpful
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The good news is that Annie is such a trooper and is doing well.  We don't have to go back until she is 2, at which time she will have surgery again to start the radius lengthening process (which I actually refuse to even think about at the moment as I want to relish in the fact that just maybe Annie can stay out of the OR for 8 months..knock on wood of course).

Her new thumb is very swollen and angry looking.  Not angry as-in infected, just angry as-in painful and with significant scabbing.  Totally to be expected, but I guess I just forgot what it looks like when it first comes out of the bandage.  It kind of broke my heart seeing what looks to be no doubt extremely painful.  The outer layer of the dressing (coban...that sticky, stretchy stuff they usually put around your arm after they draw blood) was too tight and caused the outer layer of skin on her upper arm to come off too. 
Poor Annie sure did shed a lot of tears, as did I (Gee too).  I just keep reminding myself that it is temporary and she will not remember any of it.  She is a tough little girl, so I know she will prevail, I just kind of wish we didn't have to watch her go through all of this in the meantime.  She is doing absolutely awesome with the thumb on her left hand (the one done in January) so I know with several months of therapy, which kind of equates to her as play time (thanks to our wonderful OT Missy) she will get there with this thumb too.  Time heals all wounds, right?  Of course, I have also heard that saying as time wounds all heals, but we will just forget about it like that :-)

We all look forward to Annie getting past this and back to her very happy self.  She is extremely cranky these days, but it is no wonder!  She is also working on another ear infection, so that just adds insult to injury.  Hopefully the antibiotics will kick in soon and she will kick the infection to the curb!  Buh-bye infection!

Gee leaves tomorrow.  Alexander was very sad when I told him she was going back to Dallas tomorrow.  He stuck his bottom lip out like he was going to cry.  He loves him some Gee.....as do we all.  I am not sure who will miss her the most.  I really don't know what we would have done without her through all of this.  It's amazing that she just dropped her whole life to come and live with us and help us all through the last 16 months.  She has made a tremendous sacrifice for us that I can't even begin to thank her for.  I know this day is what we have been waiting for....not for Gee to leave but for Annie to be well enough for her to leave.  I will miss her dearly.....it is a bittersweet farewell.