Tuesday, December 10, 2013

A little update on the patient!

So we are almost 7 weeks post op for Warren and he is doing great!  Just before Thanksgiving he decided he was ready to walk and since then he has been walking non stop!  He can walk up and down stairs with no problem!  He has even been sledding!  Rusty made a plate to put on the bottom so he could walk better.  We are done with the lengthening this time and we are just waiting for the bone to harden.  We had a Dr. appointment 2 weeks ago where we learned his bone was hardening faster then expected and we were getting ready to take off the fixator early!  The plan is to go back to the doctor 12/27 and take the final xray and schedule the removal surgery!!! So we are more than a month ahead of schedule.  So far praise God we have had no infections or any problems at all.  I was prepared for the worse but happy to have the outcome we did!  Warren is definitely our little super hero!!!

Sunday, November 3, 2013

A foot and more from the hospital

I realized that I had never posted a picture of what made Warren considered special needs in China's eyes.  Warren's special need was listed as a malformed right foot.  That was it.  For us that was pretty cut and dry and we were thinking reconstructive surgery or amputation with a prosthetic foot.  So doable.  I knew when we got to China that was not it.  You could tell right away there was something more.  His right leg was much smaller in both length and width of his left leg.  But nothing slowed him down!  Once we got home we went to the international clinic where I was informed he was missing his fibula bone.  We were told amputation of the leg above the knee.  That was a blow I have to admit.  Luckily they told us that they had a new Doctor coming in who specialized in such things and Fibular Hemimilia like was Warren's case.  So we waited and came to terms with amputation and met with Dr. Ruggles.  He shocked us with a whole new plan of leg lengthening!  It was a lot to take in and we decided to give Warren a chance.  We knew once we amputated there was no going back.  At least this way we gave him a chance.  So we have now began the journey of leg lengthening.  This by far is not an easy journey on Warren or the rest of his family but its one that we hope will help him.  Warren is also a special case in that most of the surgeries start before the child is walking.  In our case Warren was in China and nothing was done so he is starting his at 3!  Also Warren's foot is also a little different in that most kids have 3-4 toes on that effected foot.  Warren has 2.  He has always been a special boy! :-)
I have never posted a picture of his foot and I don't know why.  I am not ashamed of it and neither is he!  He is pretty proud of it!  So here it is!

And of course a picture of the Doctor that gave our little guy a chance to keep his leg when others just said no.

I wasn't able to post pictures from the hospital in my last post because I was exhausted if you want to know the truth, so I am going to post them here.  We loved our hospital stay as much as it is possible to love a hospital stay.  I am thankful we did not have to travel to Baltimore or Florida where the majority of FH kids go to get treatment.  Dr. Ruggles was trained by the Baltimore crew so I know we are in great hands.  And we loved Nationwide Children's hospital!

And for all those in the FH community Warren had a Super Ankle surgery and a surgery to straighten the tibia.
And I will end this by saying that a lot of people have asked me if I thought the orphanage knew about Warren's issues.  I will say that I don't see how they did not know because it was pretty obvious.  I know it was a poor orphanage so maybe they didn't know exactly what was wrong but they knew it was something.  Maybe they left it off so he could find a home and if that is the case I am not mad, I am thankful.  Had we known his true diagnosis we may have been scared off.  I cant say for sure.  I am glad they left it off and glad that he is my son.  There was a reason we didn't know and I wouldn't change a thing! 

Monday, October 28, 2013

Surgery and now the fun begins!

We have finally begun dealing with Warren's fibular hemimelia.  On 10/23 he had the first of what should be 3 surgeries.  This time he had the super ankle surgery which really consists of 7 surgeries and he also had a surgery to straighten his tibia bone and we figured why not just top it all off with a circumcision!
Wednesday was a long day!  We had to be at the hospital by 6:30 am.  He was taken to the OR at about 8:40 and this began our long wait!  Warren finally got out of surgery around 6:00 pm!  Luckily everything went great and at a little after 7 he was brought to his room, he was in a lot of pain.  That first night was long with him being woken up often by the nurses and a dr. Visit at 7:30 in the morning!

  By the next day he was eating and was talking enough to tell us he hurt.  Funny thing is he hardly ever mentioned his leg which was in a fixator!  He was more worried about the circumcision!
He was taken off the pain pump that night and we were on our way home by the next day!  The first night home was pretty good and he just woke up when it was time for his pain meds.  The past two nights have not been easy.  At this point he is just pissed!  He is tired of laying still and he is tired of the pain!  He just can't get comfortable.  He hates taking his meds and anything that causes us to move him!  He is angry and is quick to let me know how he feels!  I am hoping tonight both of us get a little more sleep.
Tomorrow we head back to the dr for his check up and then we will start the process of turning the pins on the fixator.  He should be real pleased about that!

Sunday, October 20, 2013

Disney Vacation day 1 & 2!

The kids and I (not so much Rusty) had been waiting for months to go on our Disney vacation!  It has been planned and the dinners had been scheduled for a while!  Finally on September 26 we boarded our flight to Orlando!(yes I know I am behind)
Of course the first half day was spent getting settled in the resort and going to the grocery to stock the fridge.  The fun really began the next day!  On Friday we headed to Gatorland to meet some of our China family!  Madeline and Andy were with us when we adopted Jaden and they adopted Mia and it is always a fun time getting together with their family!  We had to do Gatorland because Jaden still loves gators!  Warren on the other hand can take em or leave em!
We of corse had to get the shot of the kids in the big gator mouth!

Then it was on to check out some of the main attractions, the gators...

Of course we had to get a shot of all the kids climbing on the big giant gator...

While we there we decided to see a couple of the shows!  Andy got to be a part of one of them after first Madeline turned the guy down and then myself!  We were quick to offer Andy up as our replacement!

After the shows it was time for Jaden's dream to come true!  She got to hold a real alligator!  Warren was quick to let them know he wanted the tail and Jaden could have the mouth!  I knew he was a smart kid.

After this we headed back to the resort so the kids(Rusty) could take a quick nap before we all met up again at Downtown Disney for dinner!

The night ended early thanks to a down pour in true Florida form!

The next day the four of us decided it was time to head to Disney World!  Rusty and I decided to start off slow so we chose Epcot.  Just as I expected Warren wanted nothing to do with the characters!  Jaden on the other hand was very into the characters!  Thank goodness or I would have had nothing to take pictures of!!!

It ended up not being a good day to go to Epcot because it was the weekend and the Food and Wine festival had just started!  The crowds were pretty bad.  We headed back to the resort to swim and wait on Nana and Papaw!