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.

Home 5/22/12

Our trip back to Nashvegas was uneventful and Annie did great. She is so happy to be back home amongst her toys and familiar environment (wait, is that me or Annie I am talking about?) :-) Alexander was also quite excited to have us home. He really loves his sister, and the feeling is mutual. They give each other a hug every morning, which is so cute! He still has his very jealous moments, and he does naughty things, like he tries to sit on her, but generally speaking they get along quite well (knock on wood).

Annie has been very up and down the last several days, where she is delightfully happy one minute, but unhappy and crying the next. It is a guessing game as to what is bothering her. She is cutting molars, so it could definitely be that, she has been tugging on her ear (which is somewhat of a habit for her) so she could have an ear infection (she has already had 4 this year), or her hand could be hurting her (I hope she is not getting a wound infection under her bandage). She has been a little clammy lately too, but any of the above mentioned could be causing that. So hard to figure it out! She was up last night from 3-5 and was very agitated again (I rocked her from 3-4 and Gee rocked her from 4-5). We have not been giving her medicine (Tylenol) but maybe once every 24 hours or so, so I don’t think the medicine is negatively affecting her. Maybe we will go back to giving her Tylenol on a regularly scheduled basis to see if that helps sooth her. Guess we might be visiting the pediatrician before the week is over. It has been about 3 weeks since we have seen him after all, which is a record for her these days, lol.

I am currently on my way to CA to meet with a perspective client. It is an exciting thing from a business perspective, but it sure was tough leaving the kiddos! I will only be gone for about 24 hours, but still, that can seem like an eternity, especially when you are worried about your babies. I have to admit; however, traveling sans kids is MUCH easier! Security was a breeze, as I could go through the scanner like normal (we usually have to be pat down because of Annie’s pacemaker).

Thanks for the continued love and support. And thanks for the prayers for my nephew Ryan. They have determined that the culprit of his woes is Mono. He does not have an active case, but he is still battling the lingering effects of extreme fatigue and migraines. The poor kid has not been able to do much of anything the past several weeks, including go to school. Praying for some relief for him soon (and my sister too).

Doing Great 5/15/12

Annie continues to make daily progress, and in fact has not needed anything for pain in almost 24 hours.  Pretty amazing considering where she was just a few days ago.  She is such a resilient little girl with such a sweet spirit and zest for life.  Nothing is going to keep her down for long. 


Michelle went back to Houston on Saturday night and Stephen and Alexander went back to Nashville on Sunday, so it is just me, Gee, and Annie hanging out in West Palm Beach.  It is kind of lonely and I miss my boys like CRAZY, but this way Stephen can go to work, Alexander can be in his environment (where like any toddler does much better) and Gee and I can tend to Annie’s every want and need.  Her nighttime sleep pattern is all screwed up right now.  She will go to sleep for about 3-4 hours then wake up and want to be up for about 3-4 hours.  At first she tries to get down to play, but once she realizes that isn’t happening, she is content to just lay in our arms and sleep.  Great for her, not so much for us!  


Oh well, my mom and I trade off every other night tending to the princess, so that helps.  Hopefully she will get back to sleeping better when we get home, which can’t come soon enough!  Including tonight, just two more nights.….yippee!!  


Michelle and Annie:

We got to take Alexander to the beach for a couple of hours and he had a blast!

Amazing Progress 5/11/12

Wow, what a difference a day makes! After 12 straight hours of crying, and my insistence of no more morphine, Annie finally calmed down and went to sleep (albeit 3 o'clock in the morning). Of course they had to come wake her up to take her blood before the sun was even up, but her pain was so much less! Don't get me wrong, she is one grumpy bear, but given what she had done to her, I think she is allowed to be a little pissed at the world! As long as she is not hurting like she was, I'll take it! I have no doubt that all of the prayers sent up for her have played a role in her markedly fast improvement.

She is doing so well that they agreed to my request of discharge home (well, home away from home) instead of to the regular floor. So excited! She hates the hospital, and anyone coming at her with a stethoscope, so I know we will see continued speedy improvement in a quiet and peaceful environment (well, I am not sure how quiet and peaceful it is with Alex in tow, but considerably better than the beeping). I am sure it will take eons to get discharged, but at least she is resting comfortably right now :)

Watching Dora with her Gee

Surgery Complete 5/10/12

Annie has thumb #2! According to dr all went very well. As usual she struggled with her breathing upon waking up, but not nearly as bad as before. She is extremely agitated and seems to be in a lot of pain; therefore cannot settle in and rest. Valium just given and a different pain med, but still no relief. I hate, hate, HATE this for her and just pray all of this is worth it for her in the long run. It is heartbreaking. She is in the PICU so she will be watched carefully. Thanks for all the prayers, please keep them coming!

She could barley open her eyes to eat some ice cream.  Michelle had to hold her up...