Hi Everyone!

We had a great appointment with Dr. Standard yesterday afternoon! In 30 days of turning struts....Lex has gained 4.5 cm (1.77 inches) of growth, and the new bone is coming in beautifully!

She is still having problems getting her leg straight, so we are slowing down the turns for 2 weeks to give her muscles a break, and she'll have to wear a knee brace during the night.

Her pin site infection is clearing up, and she has her appetite back and on her feet again!

As far as coming home.....we will find out a date HOPEFULLY at the next appointment in 2 weeks. Overall....very happy!!

Here is a pic of the x-ray taken yesterday.  Look at that beautiful bone! Oh, and we are OFFICIALLY finished turning the bottom struts for deformity correction.  The bone is aligned and will heal straight! Yay!!!

 

 

 

This is the bulletin board just outside our room.  Lex is really feeling the love!  Thanks for the cards and get-well wishes! :)

 

Lex and her friend Bella, who also has Fibular Hemimelia :)

 

 

Underwater fun!

 

 

 

Hey Everyone,

It's been another crazy week of ups and downs for Lex....poor girl.  She was doing better in PT, and even cooperating with doing her stretches back in our room.  And also did some independent walking!!

We also had a fun 4th of July with some of the other families staying here.  We all went out for dinner, and watched fireworks together.  We all had a lot of fun!

And on Saturday, we drove to D.C.!  We went to the National Aquarium and The National Museum of American History.  :)

Sunday was a relaxing day at the HP House.

Monday was a whole different story.  Something just wasn't right as soon as Lexi woke up.  She was complaining of her leg hurting, and she didn't want to go to PT....not even the pool!! :(  With all the pins and wires in her leg, it's pretty much inevitable that a pin site infection will occur at some point while wearing the fixator.  My worst fears were confirmed this morning in PT.....Lex has a pin site infection. We started her on antibiotics right away, and are hoping that within 24 hours she'll be feeling better.

Another disappointing part of the day was the appointment we had in the clinic.  Lexi had x-rays taken to monitor the bone, and measure her growth.  We ended up seeing one of Dr. Standard's P.A.'s for the appointment (doc was on a well-deserved vacation with his family).....long story short.....we left the appointment without getting any of our questions answered.  Well, that didn't sit well with me....so, I walked back to the clinic and asked for another appointment, with Dr. Standard.  Thursday is the day!  We are all very excited to see doc, especially Lexi!  He has been such a big part of our lives for so long.  Lexi literally sighed in relief when I told her she will get to see Dr. Standard! :)

I'll post on the blog again, after our appointment on Thursday.  Until then....here are some pics from the last week!

Hi Everyone

It's been a pretty rough week on Lex.  Because of the lengthening and deformity correction, everything needs to stretch and lengthen....blood vessels, tendons, muscles, and skin.  So, with all those things happening, it's common that the leg will tighten up....and that's what Lex is experiencing right now.

She's having trouble straightening her knee completely, and it's causing her pain.  It's interesting because she doesn't complain too much about pain from the pin sites or wires in her leg....but the pain is coming from her knee and thigh muscles.  PT is working very hard to correct this issue, and hopefully before the week is over they will try some different approaches in therapy.

Some good news.....today we have finished the turning schedule for the bottom tier of the fixator, which is for the deformity correction (straightening)!  Hopefully when Lex has her next x-rays taken on the 8th, everything will be good, and doc won't have to make any changes.

So, starting tomorrow, we will just have to turn the struts on the top tier (lengthening)!  Hoping that going from turning 12 struts to 6 struts each day.....her muscle tightness and pain ease up.  Please continue to keep Lex in your thoughts and prayers.  Thanks everyone!

 

Here's a couple of pics of Lexi's leg taken tonight.  We put colored tape on the bottom struts so they stay in place....don't want those suckers to move!! ;)

Lexi working on her "snow angels" in pool PT today.

Hi Everyone!

Lexi's appointment went well today!  She had x-rays taken, and in just 13 days of lengthening, she's gained 1.5cm!  Just over 0.5"!! We are very happy!  Her pin sites are very clean, and looking great!

Here's a pic of the x-ray taken today.  If you look closely, you can see the gap in the bone....and the streaks of white is the new bone!!! :)

We are hoping that things continue to go well for Lex....taking things day by day! Her muscle spasms continue to be the big problem, but it is normal.  The docs have tweaked her meds for bedtime, in the hopes that she can relax her muscles and sleep well.

Thanks to everyone for your support!  Alex, Lexi, and I truly appreciate it!

Hi Everyone!

We are so excited for tomorrow!  It's a busy day with both gym and pool therapy, but we also have an appointment in the clinic!  Lex will have x-rays to see how the lengthening is going, and how much length she's gotten thus far!  Please keep Lexi in your thoughts and prayers for a good visit!

Here are a few pics from the last few days :)

 

This map is on the wall in the lobby of the Hackerman-Patz House.  So cool to see where guests of the HP House have come from!

 

Lex doing her homework.....good girl! :)

 

Diving for toys at the bottom of the pool :)

 

Smiling for the camera ;)

It was a pool day today!  Lex, as always, was very excited and did very well! She has mastered the stairs entering the pool, without any help!  She is becoming more independent everyday, and she is so proud of it! (So are we!)

I love this pic! ;)

 



Lexi had finished all her exercises early, and got extra playtime!

 



 

Mommy gave her a pedicure....she loved it!

 



Posing for the camera, and sporting one of the many adorable fixator covers that her bestie's grandma made :)

 

 

STAIRS!!!



 



Hi Everyone!

It's been a crazy, busy, and really great week for us!  Lex has made really good progress in both gym and pool therapy.  She received a package from Papa and Grandma....filled with all kinds of fun games and a cute stuffed koala, and has been playing those games with us and her friend, Isabella!  Thanks Papa and Grandma!  We love and miss you lots! :)

We also had a wonderful visit with my parents!  They arrived last Thursday and spent the weekend with us.  Lexi got to spend quality time with them, and we all went to the B&O Railroad Museum and a Baltimore Orioles game!  Super fun!  We miss you already, Grandma and Grandpa!  Thanks so much for coming out to see us!

This week, Lexi starts having physical therapy five days a week!  It's a lot of work, but it's necessary and helping her so much.

She is doing a lot better, both physically and emotionally.....thank you to everyone for keeping Lex in your thoughts and prayers!

Here are some pics/videos from the last week.....   :)  Btw.....Sooo proud of her! ;)

Today was a busy day with Lexi's first physical therapy appointment this morning, and post-op appointment this afternoon.

Lex had a great physical therapy session, and her leg/fixator is looking good after surgery.  Doc gave us her strut turning schedules, and we start the turns tomorrow.  According to the schedule, we will turn struts to lengthen/straighten until August 16th!

As the lengthening progresses, we will have to go for office visits to change out the struts....the more length Lex gets, the longer the struts she needs on the fixator!  The last strut change on the schedule is around July 20th....so we may have to stay out here at least until then. :(

Here is a pic of just one of several pages in Lexi's strut turning schedule!  The color blocks indicate the "window" in which that particular color strut needs to be changed out.

Tuesday is a free day for us.....no PT or appointments! :)

Please keep Lex in your thoughts and prayers....although she is gaining physical strength everyday, she is having a more difficult time emotionally.  Grandma and Grandpa are driving out to visit us in a couple of days.....Lex is so excited! 

Will post another update soon! :)

Hi Everyone!

The past couple of days have been like we're on a roller coaster!  Overall, Lex has been doing fantastic.  Dr. Standard gave her an A+ for all the hard work and effort she has put in, so far!

Wednesday night into Thursday was a difficult night, as the epidural lost its effectiveness and the pain/muscle spasms were bad.  None of us got much sleep that night, but Lexi's nurses worked very hard to get everything under control.  The new oral meds worked like a charm, and Thursday Lexi was able to get her epidural, catheter, and IV removed.....she felt much better after that!

Then, it was on to the next thing for Lexi (such a determined little girl!)  She practically begged to start walking! On Friday morning, Lex got her wish and PT came to help her get on her feet again!  The first attempt went well.....she walked, using her walker, from her hospital bed to the bathroom....success!!!  We were totally amazed at this milestone because it took Lex a week to walk with a walker during her first lengthening surgery, and here she is, just 3 DAYS after surgery....walking!!

After that, she decided that she wanted to walk to the playroom (which is quite a walk!) and she got to hang out with a new friend she had made, Isabella.  Turns out that Isabella lives about an hour away from us....small world!!!  She and her family are also staying at the Hackerman-Patz House, and both girls are looking forward to spending more time together!  I'm so happy that Lex has made a friend out here!  She is homesick and really misses her friends and family back at home.

We were discharged from the hospital at about 6:00pm on Friday....yay!!!

I'll post another update soon!  In the meantime, here are a couple pics, and a video of Lexi walking!
:) :) :)

 

Surgery went well! :)

Lexi's surgery went really well yesterday! Dr. Standard was able to put the 8-plate on her femur, as well as a double layer external fixator. 

Lexi is having muscle spasms and some pain issues, but the pain meds and valium are helping. 

I have to say, Lexi has been REALLY amazing so far!  Even when the spasms come on, and she's in pain, she tries so hard to be strong!

Physical Therapy has already been in to see Lex this morning.  They got her in a wheelchair, and into the playroom here!  She's getting her craft on and loving it! :)

Lexi's Pre-Op appointment

Hi Everyone!

Lexi had her x-rays and pre-op appointment this morning, and it went well!  After looking at the x-rays, Dr. Standard determined what needs to be done at this time.  It's a bit more extensive than we originally anticipated, but that comes with the territory!

Doc will be correcting 2 deformities on Lexi's tibia.  She will have the Taylor Spatial Frame put on, just like the 1st lengthening, but instead of one set of rods to turn (to straighten the bone and lengthen the bone), there will be TWO sets of rods!  So, we will have 2 schedules for turning.  Doc will also put an 8-plate on her femur to slowly correct the knock-knee.

It's going to be tough, but Lexi says she's ready.....and that's all I needed to hear!  She's such a brave girl, and I'm so proud of her!  Please keep her in your thoughts and prayers!

Thanks! :)

We're Back!!!

Hi Everyone!  We are back on the blog, and back in Baltimore for Lexi's 2nd leg lengthening!

We've made it to the Hackerman-Patz House on the hospital campus, and are all settled in!  Tomorrow morning is Lexi's Pre-Op appointment with her favorite surgeon, and our journey begins.  For now, here are a couple of pics!

 

Lexi, off to a great start doing her summer math homework :)

 



Fun time!



 

LOL, not sure where she is sleeping! ;)