X-Rays

For you, Mom:

I'm no radiologist, but bone looks to be growing where it should....can't wait to get the official word from Dr. P and hopefully schedule a surgery date to get those damn fixators removed!!!

Update

Overall Annie’s appointment with Dr. P this week went very well (even though we had to wait close to 4 hours for a less than 5 min appointment).  We are so excited that she has completed the distraction (lengthening) phase and has moved on to the consolidation (hardening) phase!!  I am hopeful that her pain will lessen drastically now that her bones are no longer being pulled apart.  I was thinking that she would be able to have the fixators removed a month after the lengthening was complete, but it turns out it will be 2 months.  Damn!    

Her latest infection has cleared and she is no longer required to wear the thumb immobilization splints, or splints of any kind right now.  She is actually quite fond of her splints (I think it is a sense of comfort for her) and she cries when we take them off (we put them on for sleeping as a sense of security for her).  She has literally worn some form of splint since she was 2 days old, so I could see why she might feel a bit naked without them!

It was very disheartening to hear that she would have the fixators at least 8 more weeks.  That means 8 more weeks of pin site cleaning (aka daily torture).  Boo, hiss, I don’t wanna……

She has gained about 15 mm in length on each radius.  Pretty amazing if you ask me!  Her arms and hands are very stiff but that is expected from being immobilized for 6 weeks.    As she gets more and more comfortable with being splint free she is using her hands more.  Unfortunately she has lost all of her thumb function, but now that her hands are free I am hopeful that she will regain all that she had a more (the muscle transfer is supposed to increase opposition).  I still have that twinge of, oh hell, why did I let him mess with her thumbs again.  She was doing so great….why rock the boat for more when you could end up drowning, you know?  Of course, on the other hand (pardon the pun), let’s rock that boat and see how far she swims.  I think she will amaze us all!  Yep, that’s what I’m going with for now!

Until today, Alexander had a terrific week, despite Annie, Mommy, and Gee being in FL for part of it.  He got sent to the “principals” office today for hitting…….really?.......I think I need a drink!

Annie and Gee on the veranda waiting to see Dr P:

Left arm x-ray 4/1:

 Right arm x-ray 4/1:

So tired she can't even sit up straight (I know the feeling)....

Alexander........

Silly boy:

Growing!

In a 3  week period Annie's arms grew 10 mm (also known as 1 cm)!!!  Truly amazing!  We made a quick trip to FL on 3/18  to see Dr. P.  He was very pleased with her progress and told us to come back in 2 weeks.  I am really hopeful that when we see him this coming Monday he tells us that she is done lengthening, can start OT to regain her thumb movement, and schedules a surgery date to remove the fixators.  Think that is asking too much?  Nah!  Oh wait, I forgot one, hopefully she will also be infection free by then!

We are starting to see more and more glimpses of our happy little girl again, but we still have a lot of rough moments each day.  The worst of which comes when we have to clean her pin sites and change the bandages.  She literally screams blood curdling screams throughout the whole process.  Even though I know a lot of it comes from sheer anxiety over the process (can you blame her?) a lot of it also comes from pain.  A big thank you to my wonderful friends that came over and relieved me of the duty one night!  It is a necessary evil, but I hate, hate, HATE doing it.  Not for me, but for her.  Makes me question our decision on a daily basis. 

She is fighting infection #2, which I am sure adds to her discomfort.  The main source of the infection this time is due to her skin tearing against one of the pin sites (OUCH), as well as a stitch not dissolving as it should have.  Yes folks, I learned how to remove sutures this past week.  Good thing I swiped that suture removal kit from the exam room....somehow I knew we would be needing it!

Alex struggles with jealousy, which equates to really poor behavior at times, but he is still a really happy little guy!  He keeps us laughing!

Picture Time:

Here is the x-ray of her right arm where you can see the fixator screwed into the radius and can see the rod that was put through the ulna.  No wonder she has been in pain:

X-ray of both arms:

Look how straight her right arm is looking:

Underside of her right arm....looks amazing!

You can see where her poor skin is tearing:

Caught her smiling in the bath:

Home Bound!

We survived our trip to Dallas and are on the way home.  Unfortunately Annie has had a rough couple of days and has not been a very happy camper.  I am pretty sure she is working on an infection, as she ran a fever yesterday, her pin sites are looking redder, and one is oozing a bit (gross, right?).  Anyway, with the help of our favorite Dr. we decided to start her on antibiotics last night, so hopefully we caught it early.  

I am not sure why she is so very fussy again, but I suspect she is tired and just doesn't feel good.  Hopefully getting home and back in a routine will help her.

Alexander has had big fun in big D!  He is going to have a hard time getting back into his routine when we get home.  Both kids are a little on the spoiled side at the moment, but hey, you do what you have to do to get by sometimes!

Silly girl:

 

What a Difference a Day Makes....Not in a Good Way

Annie had a pretty rough day today in terms of pain.   We are trying to figure out the right balance of giving her pain medicine vs. regular Tylenol, but don't have that nailed down yet.  Hopefully tomorrow will bring better pain management!

She screamed bloody murder tonight when I had to change her bandages and clean her pin sites.  It was really hard not to break down and cry right along with her.  It seems to be really painful for her, but it has to be done to try to reduce the chance of infection, which is apparently very high.  Sucks.  BIG time!

The good news for the day is that we get to leave FL as planned on Saturday.  We are flying to Dallas as are Stephen and Alexander.  I can't wait to see my little guy (the big guy too) in person!!!   My heart really aches being away from him for so long.  I am sure it is much harder on me than it has been on him, but I can't wait to wrap my arms around him, kiss on him, hug him, and tickle him!

Um, could you stop taking pictures and get this over with:

Left arm up close and personal:

Right arm up close and personal:

Major Improvement!

Today is the day I have been waiting for.....my happy little Annie is back!  She has finally caught up on her sleep, is in far less pain, and is making great improvements!!!  She went the better part of the day on Tylenol only, which is awesome at this point.  She is still on Valium (for muscle spasms-since she had muscle work done) but that is only 2 times a day.  I love seeing her funny little personality reemerging....totally warms my heart.

I started turning her fixators on Monday, which was very scary at first, but is not necessarily a big deal now.  They have to be turned 2 times a day and the dressing around them changed once a day (you can imagine how much she loves that).

I can't believe it actually happened, but I "lost" the wrench to turn the fixators on the first day.  I searched endlessly and cried buckets of tears until Annie looked at me at one point and said, "Don't cry mommy."  Ummmm, okay, you are right.  While I was so upset with myself I realized that there was nothing I could do about it except beg for a new one the next day, so that is what I did.  Of course, I brought the man that could get me a new one a generous Starbucks gift card, but I am not beneath bribing who I need to bribe to get what I need for the Princess :-)  Stress that I did not need.

Anyway, she had her splints adjusted once again yesterday, but I think we are finally good to go.  Lots of other details to tell, but too tired to tell them so they will have to wait.

Thank you for all of the prayers...they definitely have been answered!

Ahhhh....bandages and splints off for a few mins...

Incision on the side of her hand (for muscle transfer):

Underside of hand:

Getting splints adjusted again...she is so over it!

Rough Seas

I can sum things up in two words.  This sucks!  Actually, let's expand that to three, this REALLY sucks!   Poor Annie has been in a lot of pain and extremely agitated.  

I wasn't expecting a cake walk for her, but I wasn't anticipating it to be this bad either.  I thought for sure that this (a supposedly mere 3 hour procedure.....HA!) would not be nearly as rough as any of the others, but this is turning out to be the worst (outside of her OHS, of course).   

We spent the better part of the day yesterday chasing her pain and trying to make her comfortable, both of which seemed to be loosing battles.  Even when I was the one holding her she would just cry, "Mommy, Mommy, Mommy."  Heart breaking!  Unfortunately they had to come re-do her dressings and adjust her splints, which was very, very traumatic for her (and the rest of us too).  At that point the nurse relented and drugged her up.

By 4 pm they had given her so many drugs she was high as a kite and her pain was under control.  That's not necessarily a good thing either though (the high as a kite part), although it did provide us with some much needed comic relief.  Anyway, we finally got to move out of the PICU to a regular room last night around 5.

This morning she got her dressings changed again, drain tubes removed (OUCH), and orders written for discharge....YaHoo!!!!  She is still very irritable (who wouldn't be) but I do think her pain is under control.  Hopefully we will see big improvements as soon as we vacate this joint!  The staff here is amazing, but there is not a comfortable thing about this hospital.  Guess we are spoiled with Vandy Children's!

Back on the home front Alexander is have an absolute BALL with his aunties!  It is so very hard to be away from him but I am comforted knowing that he is having so much fun.

She was in the process of the dressing change and splint adjustment:

Right arm without dressing....

Watching Caillou with Gee early this morning: