Month: September 2015

Lemondrop – The Ring

Carrying on a tradition: buying Lemondrop a ring.

Many years ago, when she was about the same age, I bought my niece her first ring; that little girl is all grown up, and next year will have a ring placed on her hand by a man she loves and who will take her as his bride. I look forward to the same with my Lemondrop.

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Have A Magical Day!

Lemondrop – So, What’s Up With That Leg?

The past couple days we have been in Boston. Rather than being a pleasure trip we had gone to get another opinion and greater understanding as to what Lemondrop is dealing with in the malformation of her leg.

The last few months we have been going back and forth to Boston; visiting doctors, clinic’s, getting an in depth ultrasound and an MRI. We visited three hospitals: Shriner’s, Boston Children’s & Mass General and the consensus is that she has Klippel-Trenaunay syndrome. It is rare, something that formed in utero, she will more than likely have to deal with it all her life, but it is not something she will pass on to any child she may have – although in her case, due to the extent of the issue in her pelvis, pregnancy could raise further challenges.

In her case the malformation involves the veins and the lymphatic system in her right leg; basically, in a simplistic way of saying it, too many of them (you can see in the photos  how one leg is thicker than the other) going from her pelvis all the way down to her foot; fortunately there does not appear to be any arteries involved; clots are common and had it been her arteries instead of veins it could have been life threatening. Also, in her case, it does not go deep into her muscular tissue, it is more under the skin. Another good thing; they categorize hers as a less severe case.

People who see her leg oftentimes think she had recently fallen; she typically has a number of deep purple colored marks that resemble bruises; this is common for Klippel-Trenaunay syndrome. On hot days her leg often weeps lymphatic fluid from a couple of these areas, lately one has ‘mushroomed’ and the thin skin easily tears leading to bleeding.

As I said before clots are not uncommon and occur in both the vein and lymph vessels. When this happens there is swelling in that area and it can be painful for her, but overall she doesn’t seem to experience too much pain in her leg. Usually the swelling begins to subside in a week or so and if it was in the veins a new purple mark appears in that area.

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The lighter ones weep Lymphatic fluid, the darker ones can tear and bleed.

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These areas, like the one which has recently mushroomed and occasionly bleeds, can be surgically removed however it will not stop others from forming nearby; this condition wont spread through her body, but will always be present in her leg.

Future treatment may include Sclerotherapy which is often times used to treat conditions like varicose veins, but the doctors we met with today said that that isn’t something they would recommend right now.

Lemondrops medical records from China are sparse at best and not very thorough; we know that she has had at least 3 surgical procedures on her leg, maybe 4, but not really to treat what. Since she has been home Sue and I have been going to see so many doctors because we are hesitant to take action without really having as concrete as possible an idea as to what where and how this issue with her leg was going to be diagnosed and treated. We came away today feeling that we had made the right choice doing so; one group of doctors we met recently had suggested a surgical procedure they felt was critically important but now, with now more in-depth tests, we feel may have possibly made things worse.

One thing each of the doctors at Mass General were all in agreement with is Lemondrop being introduced to swimming as a life long treatment or control; it provides invaluable exercise and the water pressure acts like her compression garments to counteract the swelling in her leg. Up to this point the only real water activities she has had are her kiddie pool and an occasional visit to a water park. The Springfield Shriners hospital provided us a list of swimming programs they have worked with & Sue set Lemondrop up for some classes.

It is always a mystery how Lemondrop will react to new things, fortunately it wasn’t too much of a challenge to get her in the pool and she absolutely loves being there; I get tired just trying to maintain control of her little squiggly squirmy body so she doesn’t drown!

At this point in life Lemondrop doesn’t really have an understanding that her leg is any different than anyone else’s or that there is anything wrong with it; she surely doesn’t let it slow her down any. When she came home we noted that she had an odd gait when she ran, fell often, and struggled to make it up two steps on a flight of stairs. We worried that these were affects from her leg but have since come to realize that it is more an artifact of orphanage life; not getting the chance to really develop those skills. Now she runs much better, falls less often and does pretty darn good getting up the stairs to our second floor. There is no slowing this kid down and we’re going to do everything we can to keep that mentality going strong.

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Have A Magical Day!

She’s a Shriner’s Girl….

These were taken a few weeks back when we went to the Shriners hospital near where we live; this is the one I do volunteer work at and needed to run a couple errands there.

Some of the folks who work there had not yet met Lilah and so we also walked around making introductions. The hospital photographer, she takes pictures of every patient from their first day and all through their treatment to record their progress, asked if she could take some pictures of Lilah and the attached photos are the result of that.

That’s my Girl!

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Have a Magical Day!

Six Months Ago…… A whole New World

Those 2+ years it took to get to China & Lemondrop seemed to take forever. The six months that we have had her seem to have gone by like a blink of an eye. The following images are from March 9th, 2015, now our Forever Family Day, in Guangzhou China when Lemondrop was placed in our arms.

It was a warm cloudy day when Lucia, our guide for the day, picked us up at the China Marriott hotel, from there we would go to the Garden Hotel to pick up Greg and Laura Keith, another family adopting a little girl, then all make our way to the Civil Affairs office.

- 00 the first look

- 01 the first look

- 02 the first look

The place was already a flurry of activity when we arrived; people rushing from one place to another, others calling across the room, cameras flashing, children crying, parents crying.  Sue, myself, Keith & Tim were escorted to one corner of the room along with the Keith’s, a couple from Michigan we had gotten to know on Facebook when Laura Keith spotted their little girl, Ellery, along side Lemondrop in a video we posted from the orphanage.

- 02a the first look

By an amazing coincidence we were now at the Civil Affairs office in China together on the same day to complete our long journeys to give those little girls a home and family.

- 03 the first look

Ellery was the first to come out and I followed the Keith family with my camcorder to capture their magic encounter. It was only a moment later though that I saw Lucia, rush over towards Sue and wave for her to follow.

Then, from behind a multi-colored curtain, came a young lady from the Bao’An orphanage with a bewildered Lemondrop in her arms. Walking directly towards Lucia & Sue she placed Lemondrop in Sues arms.

00 the first look

01 the first look

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For Lemondrop this was quite a traumatic experience; from the hands of someone she had probably known all her life and whom she trusted she had now been left with strangers she didn’t know; people who didn’t look like her, talk like her, or anyone else she knew. She was not happy and repeatedly pointed back towards the young lady; she wanted to go back to her.

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We were ushered from the center of the room to a sofa along side the wall where we could sit with her, talk with her, and assure her that we were friendly people. It wasn’t too long after that when Lemondrop calmed down and began, I think, to feel more comfortable around us; she still had moments of tearing up and crying but, really, she took to us very well and began to interact with the four of us.

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After another 15 minutes or so she began to really relax, to give us a chance; she didn’t know who we were, or what was happening, but she felt that this was good thing.

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And as it became time to go you knew that she was now totally okay with it; she was happy & everything was going to be okay.

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She must have sensed that those doors meant freedom; the closer we got to them the more excited she became.

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After the ride back to the hotel we all helped her to get comfortable and cleaned up for dinner.

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Then, after a nice dinner full of laughter and further discovery, we went back to the room to let her rest after such an eventful day.

This had been a day she never could have imagined; mother, father, brothers, were all concepts unknown to her and would be for some time to come. What she did know though was that we were all there for her and this made her happy.

She so wanted the day to continue but it had all been exhausting for her and she quickly fell asleep.

Little did she know that, when morning came, it would be a whole new world.

27 the first look

To see an earlier post with a great series of photos showing Lemondrop the next morning, when she learned that this day wasn’t just a dream, click HERE

And to see a short video from that Magical day when she was placed in our arms you can go HERE

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Have a Magical Day!