Thursday, February 28, 2013

So many tears today....

Mira has cried more today than any day since she's been with us.
My girl is having a tough time.
This surgery/ reconstruction has been radical. There's no other word to describe it. The results are/will be AMAZING! STAGGERING! She is pushing towards the finish lone but this darned infection continues to linger. Her leg is gross. We are doing our best to nurse her here from home. Dr Standard is on the final stretch of his mission trip to the Dominican, due to return on the weekend. We are scheduled to return to Baltimore on Wednesday to see him, we are hopeful that we can manage this until we get there. I've consulted with Allison, the PA, she gave us a few options, including IV antibiotics...none of which we want to do unless mandatory.
On a positive note we are just 6 short days from the end of Mira's turn schedule. Her legs look AMAZING!!!! See below!
Please continue to pray for Mira.


Nasty photos ahead........


Wednesday, February 27, 2013

Back to school & the sweetest words

Mira went back to school yesterday for the 1st time since the infection. I was a bit concerned as we get a lot of together time. So much that she is quite dependent on me. Anyway I dropped her off & she was quick to say goodbye. Seeing all of her friends was very comforting for her. When I picked her up she said she was a good girl in school~ that makes me chuckle! I asked her if she missed me while she was in school.. She replied "no" matter of factly... WHAT?!?!?!? Then she said the sweetest words...." You always come back, I not miss you".....
Enough said....

Saturday, February 23, 2013

Somewhere in between...

Mira is delicately teetering between infection & improving. It seems like one minute she's improving & the other she worsening.
We've prayed & we know God is answering prayers.
Yesterday she woke up at 6am walking on her leg & her giggly happy self. A ton of yuck oozed from 3 pin sites. By 10 am she refused to put weight in it. After lunch she was back to hobbling on it. Then by 6pm she spiked a low grade fever... 100.3
There are a few praises... One is her body has adjusted to the antibiotics! We will continue to bath in bleach nightly. At this point my bathtub is the cleanest it's ever been!! The other praise is an organization called Miracle Flights. They provide commercial air transport for medical appointments! This HUGE to our family since we've moved 1700 miles from our doctor. Mira needs to return to dr S for X-rays on march 7th. Literally just for X-rays. It would cost us $800 to make this flight. We've been able to keep up with the last few flights but it has become quite a burden on us financially, as we slowly re-establish our business. We received confirmation this week from Miracle Flights that our upcoming trip has been approved!! PRAISE GOD!!!
Tying into my last post.... We are getting slammed with snow again tonight! I LOVE IT!!!!!
A few more graphic pics to follow:

Wednesday, February 20, 2013

A raging infection & snow

Pretty lame title but my brain is pickled at this point!
So Mira has a raging infection in the top wire of her fixator. We started antibiotics yesterday, she has a creeping fever & the antibiotics are messing up her stomach. The poor girl has cried over & over that her leg hurts, she now refuses to walk on it at all which is a HUGE setback. We are praying that this infection will subside and she would make a rapid turn. It breaks my heart to see her in such pain. She is the toughest child I know, so if she says it hurts then it definitely really hurts.
If you find that Mira crosses your mind say a quick prayer for her please.
The only other news I have us that we are having a "substantial snow" storm. They are calling for 8"+ of snow by tomorrow morning. Just before taking Mira up for her nightly bleach bath we stepped out side to grab a handful of snow to eat. She thought this was great!!
Until next time!!

Monday, February 18, 2013

Please say no!

Mira's leg looks a bit yucky...

** CAUTION: gross pictures ahead**

We are praying things make a turn. This morning she woke up with a warm, red and oozing leg. Then she spiked a low grade fever... 100.8! So tonight she took a bleach bath. I texted Dr Standard to ask if I should be freaked out. He texted back & said no just scrub with soap & water & start antibiotics if the pin sites start to hurt.
I forgot to mention the wild & crazy thrashing that came from cleaning the pins~wow! Thankfully her sister Sami was able to bring peace to the situation with an Airheads candy!
Anyway, we will begin antibiotics first thing tomorrow and hope this will control things. You may or may not remember the last fixator has some infection stuff going on, so we are being very cautious BUT we also lived in Baltimore the last time.
Thanks for your continued prayer support!

Saturday, February 16, 2013

So happy together...

On valentines Day it was a *sweet* reunion! Mira & I landed in Denver at 4:20. As we approached baggage claim we were greeted by 3 screaming girls & a smiling daddy! The timing was perfect!
It was such a great feeling to be together again. It is hard to be away from everyone but especially Kayla, she needs her momma more than most!
We left the airport & stopped to have dinner at Applebee's, then we headed home! Mira & I are still on East Coast time but it was great to sleep in our own beds!
Mira continues to do great! Kara took the girls swimming yesterday while I went to the grocery store. It's great for Mira to get that movement in her knee. We continue to do daily stretches & exercises along with her daily turns to align her leg. The main goal is to keep full range of motion in her left knee. Ivd got my eye on a new bike for her since she enjoyed that so much during her outpatient rehab at Sinai.
That's all for now other than a few pics of my crew!

Wednesday, February 13, 2013

Saying goodbye!

Today was Mira's last day of therapy. When we got to PT today Mira's FAVORITE friend was there.
Lisa, she & Mira are funny together. Mira was dressed in cheetah print & sportin' her pink hair that daddy sent her. Lisa said she looked like Snooki... I can't say I agree.. Mira doesn't have a bump and her mouth is MUCH cleaner than Snooki's!!
Anyway, I owe it Lisa for putting a daily smile on Mira's face even when Mira didn't like the exercises that she had to do.
This evening is also our last evening at the HP house for this trip. We have met several amazing families during our stays. Some we run into several times and others are just quick hellos.
Lauren is cute as can be, she LOVES to polish her nails.
Dana has been a blessing to meet, she is a sister in Christ. I wish we would've had a more time together but I look forward to keeping in touch with her. Her & her son Brayden will be here when we come back in march.
Payton has to be one of the bravest kids I've met. She is beautiful, sweet & very grown up at the age of 10. She has endured 20 surgeries in her short life. When I asked her how many more she has to go, her response was "I will need surgery until I stop growing." My heart sank hearing her say those words but she followed it with a smile. That makes her one of the bravest kids I've met. She is very sweet with Mira, she likes to play with her. She too will be here when we return in march.
Saying goodbye is never easy... Fortunately it seems we will be seeing these friends again soon.
As we get ready for bed tonight it is snowing, so Mira & I went out to touch the snow.... She LOVES to touch it!

Tuesday, February 12, 2013

Sportin' some new bling!

Mira went into the OR at 9:30 this am.
At approx 2pm I was reunited with her in the recovery room. She quickly came to and asked to go home! She then polished off a red Popsicle! I think she's tolerating this well!
Dr Standard performed an osteotomy to her left lower leg. She is sporting a shiny new fixator.
There are a few things I should mention about this device. It is 2 horseshoe shaped rings that wrap around her leg. The bones have been sawed in half in an upper & lower place. The rings are attached to the bones. The rings are spaced apart by 6 shocks. On Friday I will receive a print out that includes instructions to 3 dimensionally align the bones. It will even realign her foot to a forward facing position. This "turning" process takes about 2-3 weeks. At this point we will wait for the bone to heal in its new position. All said & done she should have this metal removed in approximate 4 months.
One more thing I want to mention about this metal is that after Mira is finished with it, it is donated, sterilized & Dr Standard takes it to the Dominican Republic & performs free surgeries to those in need.
Her pain is being controlled by an epidural, we will be in the hospital until Friday.
I will leave you with a few pics:

1 week post op

It's been 1 week since Mira's most recent surgery & she is doing SUPER!!!!
We are still in Baltimore doing therapy but we fly home on Thursday, it will be a happy reunion for Valentines Day. This separation has been very hard, likely because of the huge distance between us but also because of the extreme bond we've all experienced since the move. We are quite close, very dependent on each other.
The plan at this point is to do the 3D alignment from home over the next few weeks. Her turns will stop on March 6th. We return to Dr Standard on march 7th for X-rays and to decide if she needs any lengthening which can easily be accomplished with this fixator. We will then return home until mid may-June. At that time we can return to Baltimore for complete hardware removal including the femur rod she has.
We are blessed to know the Great Healer, he sends his angels to watch over Mira each time. The strength, determination and sweet spirit she has could only be from The Lord.
Thanks to everyone that has prayed for her this and everytime she's been in the hospital.
A couple cute pics to leave you with!

Monday, February 4, 2013

Two shoes....

Today is the first day since October that Mira has been able to wear two shoes. It won't last long though.
We have returned to Baltimore for cast removal from her right leg & tomorrow am she will have corrective surgery to her left lower leg. This should be the tail end of large surgeries.
I must say, we had it pretty good to live just 40 mins from the hospital. We had to fly in on Sat for a mon am appt & Tuesday am surgery, we will be in Baltimore for 2 wks. VERY DIFFICULT to be away from our family BUT I have to say it is worth every sacrifice. The Lord called us to China & to be Mira's family but it doesn't stop there, we vowed to love her & provide her with the best quality life...even if it's in Baltimore! Dr Standard is AMAZING, I know he is a gift from God for many families including ours. It is for that reason we will continue to travel for him to care for Mira.
He is a master (bone) carpenter!
Below are some really impressive before & after photos.
Please keep Mira in your prayers as she undergoes this next phase of correction.