Month: June 2016

Lemondrop – Our Happy Little Girl, 6-25-16

Little Miss Lemondrop heading out to the Amherst craft fair….

 

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Have a MAGICAL day!

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Lemondrop – Doing the Donut

Yesterday Lemondrop & I were back at the Springfield Shriner’s Hospital; one reason was I had an errand to do but we also went in to get another measurement for a new Power Suit; as it turned out we got to participate in a big event as well.

It was Board Day at the hospital so representatives from the various Shrine Temples in the Northeast which support the Springfield facility were all over the place. Dunkin Donuts, who have been a HUGE supporter of our hospital; giving I think in excess of $125,000 over the last few years, were there too yesterday to make another big donation.

No one can resist Lemondrop’s smile and she was asked to join in for the photo-op too…

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Thank you Dunkin Donuts!!

Have a MAGICAL DAY!!!

Lemondrop – Time For a New ‘Power Suit’

Today we ventured on over to the Springfield Shriner’s Hospital to pick up Lemondrop’s new compression garment, aka, her ‘Power Suit’; her first one was pink and I called it her Power Ranger Suit; but of course she had no clue who the Power Rangers were and in her broken developing English it morphed into her calling it her Power Suit….did you get that..”morphed”? Never mind; on with today’s visit.

Since her appointment wasn’t till noon there was no need to rush out of the house. She woke up a little after 8:00 am and we hung around in bed for a little bit of goofing off.

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After a good breakfast of scrambled eggs and yogurt she played a little until it was time to get dressed and head on over to her friends at Shriner’s to pick up her new Power Suit. Lemondrop is primarily a patient at the Boston Shriner’s but they’re better than a hours drive away so it is much more convenient to have her fitted for replacements at Springfield which is only minutes away.

All dressed up we headed out the door…

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You may have noted her choice of accessories for today’s jaunt; no that isn’t her peculiar choice of a handbag, it’s a little bucket….with a little plastic boat….toy bread- or ‘ham sandwich’- along with toy figures of  a boy and a girl; usually she also has a little plastic fish in there as well but somehow it didn’t make the cut today. If you’re perplexed why she would have this odd assortment of items let me just say that she LOVES the movie ‘Ponyo’. Those in the know will understand how that ties in, those who haven’t seen Ponyo might like the movie as well; if nothing else all above secrets will then be revealed.

We got to the hospital early enough for us to say hello to everyone we knew before her appointment and then sat in the out patient area where she quickly made friends playing with some of the other children there.

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After a short wait we were ushered into one of the rooms and the new suit was revealed. Lemondrop has until now had a compression garment that had a open crotch; it allowed room for her diaper, which was good, but a drawback to that style was that the high cut of the garment on the leg not affected by Klippel-Trenaunay syndrome (KTS) had a tendency to sometimes cause the hem or edge seam to press into her leg leaving at best a crease and at worst a nasty bruise like mark on her upper thigh near the hip of her unaffected leg which was painful enough to wake her from her nap; and this kid sleeps deeply.

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Lemondrop has a tendency to be very stoic and not let you know when something is hurting; right now she has a lump in her calf forming from a clot and unless she steps wrong or you accidentally press on that area she doesn’t even let on that it is there unless you ask her directly about it. So when she wakes up crying because of the garment causing her discomfort pressing into her skin you know it is something that needs to be addressed.

I emailed the above photo to Boston and they readily agreed with us that we needed to find a different style; something which would wear like a pair of shorts on her unaffected leg. That new one came in and today we were going to see how it fit.

Originally Springfield had ordered the garment from the same supplier that provided the ones she got from Boston but there were some issues dealing with them so they went with another vendor; one they were more familiar with.

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I can not emphasize enough how important the compression garments have been in controlling the size of Lemondrop’s leg from the swelling associated with her KTS; in just a years time we have witnessed her affected leg actually slimming from the guidance the garment provides. In fact the garment she had been wearing up to today was a replacement for one she was measured for only back in February and had only worn it just a short period when we noticed that it had become too large and thus ineffective; when they remeasured her for the one we were replacing now it was discovered that the circumference of her leg had been reduced by nearly an inch since she had been previously measured; that’s quite a bit, in my opinion, when you consider that this is just a small toddlers leg.

That change in her leg has been quite visible to Sue and I; from the back at times we can hardly tell that her leg has a problem. The front of her leg has slimmed too but it maintains a lumpiness and of course the bruise like markings.

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The scars from stitches that you see visible in the image on the right are from surgeries Lemondrop had while still living in China; we think she had at least 3 or perhaps 4 different procedures while living at the orphanage; I’m guessing to remove the type of mass she has developing right now in her calf.

The very dark area below her knee is an area that resulted from a clot that later ruptured; it frequently bleeds due to the skin being very thin and easily torn. It has been there for quite a while but sometimes recedes a bit & then doesn’t look so angry.

The new garment fits snug & she now needs to get used to having the crotch covered; she has made it obvious that it has to be pulled up high enough to fit her snugly there or it bothers her.

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In earlier efforts to find the ideal design for her we had the toe reconfigured on her garments from a open toe to one that was closed. In the original open toe design the edge seam would too often cut into her foot leaving angry red marks around her big and little toe when the material rode up her foot during the day. So we asked Shriner’s for a enclosed toe in the next fitting which indeed worked better for her. The seam was actually still there but the sewn in toe cap kept the garment from now riding up her foot. This new garment has a toe as well but it is crafted differently; instead of a added on toe cap it is sewn as an actual sock or stocking. I like that better.

Once it was on we went back into the out patient waiting area and hung around a bit to make sure the new garment didn’t give her any immediate problems. Lemondrop quickly resumed playing with other children and had a good time.

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It was getting close to her nap time and I could she that she was getting tired so after she was cleared we said our good byes and headed out.

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The thicker material of this garment makes it considerably more of a challenge to get it on, especially over the heel of her foot, than the other types she has worn; they were more like a heavy gauge silky stretch nylon; this one is kind of like a knitted sock and not as supple.

The redesign of the thigh area on her unaffected leg, making it longer like a pair of shorts, really seems to work out very nice; we had taken the old one off when she slept to avoid the problems she had had but she has slept with this one on during her nap and there wasn’t a mark or anything at all like she had before; nor when we finally took it off her for the day.

However one area of concern we do have is in the ankle area; the front of her leg where it meets the foot. The fabric doesn’t fit around it smoothly but instead is rather wrinkly and after we pulled it off tonight we saw it had left some red markings on her skin.

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We’ll give it a couple days to see how it pans out; it isn’t as bad as what she had on her hip, but we don’t think it something that should be there. Maybe we have to get one made from the same material as the old ones.

FOLLOW UP EDIT: the markings have been there now the last couple days so we’ll head back over to Springfield to get their assessment. A mom who read this post commented that their little one had had a similar issue and an additional piece of a different fabric was sewn in at that area to alleviate the issue.

As for how Lemondrop is handling all this; she is just going along with the flow; she follows our lead and accepts whatever is presented to her. An amazing little girl.

UPDATE May, 2017 – We were not entirely happy with the material of the new garments and have returned to the old style which is lighter, and more flexible. For those curious what that brand is, below is an image taken of the inside tag of the garments……

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This link will take you to a page that offers the Torbot garments, I do not know though if this who the Boston Shriners gets them from:  http://www.jobskingarments.com/products.html

Have a Magical Day!

Lemondrop – The Asparagus Festival 2016

Life has its moments; moments where you stand back and observe something around you so wonderful you cant believe that you are so blessed to be part of it – watching Lemondrop blossom into the happy child she now can be does it to me every time.

Not much was on our schedule today; we knew Sue and Lemondrop had a hair appointment so we were definitely going to that, and possibly we would drive down to CT to visit David, Sue’s twin brother; he was admitted into the hospital yesterday for a unknown but potentially serious medical problem. He seems to be doing better right now so we’ll go see him tomorrow.

Aside for our usual weekly shopping, that would leave our afternoon free. Sue mentioned last week that she wanted to attend the Hadley Asparagus festival so that’s where we headed. First of course the haircut.

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Sue decided to let Lemondrops hair grow out again but the bangs still needed to be trimmed; much like last time she was more relaxed and let Miss Diane do her magic.

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On to the festival!

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I’m really not sure how long this festival has been going on and I had no idea what to expect. For all I knew there would be a bunch of people running around dressed as the green stalks; there weren’t…at least none that I saw. What I did see under a beautiful blue sky were some rows of tents with arts crafts and food; the crowd was good, not crazy, at least not when we got there after 3pm. Although it was a bit warm it was really a beautiful day for a outing.

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Getting there as late as we did we didn’t know how Lemondrop would do; it was way past her nap time and we expected  her to conk out at any time. Surprisingly, she held on throughout our time there and, although a bit quiet, did enjoy partaking in  the various offerings of entertainment they had for children.

In one area they had set up some platforms with holes in them for the children to place long green pointy sticks into and then remove them; just like they were harvesting asparagus themselves. There were a number of kids there who enjoyed the putting in and pulling out of the sticks; Lemondrop just wanted to collect them all and put them in a box.

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After she played around there for a little while – at one point getting into a sort of sword fight with one of the young boys – we decided to wander further and then came up to a little booth hosted by ‘Dave’s Soda & Pet Food City’; they had a few creatures including a very cool chameleon and a snake; neither of which she wanted much part of, but they also had a guinea pig she did want to touch.

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We next wandered over to a display inviting people to take a free little pot of dirt and a sunflower seed home with them to create an area where pollinators could gather.

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So Sue and Lemondrop accepted the challenge and put a little pot together to bring home.

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Moving on we found a booth that invited children to paint rocks or just play with other craft items; Lemondrop really loves arts & crafts so she wanted to spend a few minutes playing with the glue and strips of paper.

It was getting late, we hadn’t yet eaten lunch, so we wandered back towards the food tent; Sue had heard of an ice cream they were offering made with asparagus and she wanted to try some. On our way in pursuit of this concoction Sue and Lemondrop posed for a photo…

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Also on the way Lemondrop got to sit on a tractor and make believe she was driving; since she loves motor vehicles this was especially fun for her.

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After that we went into the food tent where we found a vendor selling organic ‘grass fed’ gluten free hot dogs and organic french fries, also organic and, since the fryer isn’t shared with anything else, they were also gluten free! I love french fries so I was all over that treat. Now, the festival might have been free, but the food sure wasn’t; as Sue put it, it was like buying a meal at a Disney park: 3 hot dogs and 2 orders of fries came to $26.

After we finished that Sue went and grabbed a few cups of Ice cream; mint chocolate chip for Lemondrop and asparagus for her and I. This was my dish; if you look towards the lower right edge of the dish you can see genuine asparagus roughage sticking out of the ice cream…

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My Verdict: Not bad; but nothing so wonderful that I’ll need to make a point of getting it again. I think they also put some sort of nut in the mix; perhaps pistachios, which I like.

We still had our shopping to do so we slowly made our way back out of the commons towards our car. To do so we had to pass the area where a band was playing some very loud music. Loud stuff like that, after a while,  hurts my ears but Sue wanted Lemondrop to see it. Lemondrop had been sitting on my shoulders but while we were standing there, with a little coaxing from her mom, she decided that she wanted to get down and then began to jump/dance with her mom; which was adorable; I did get some video but somehow no stills.

Through out our whole time at the festival Lemondrop was involved just not her regular bouncy self but, as tired as she was, having not taken her nap, dancing with her mom, really helped perk her up. And then, when some little girls came over and started playing with her, well, she really opened up; she got down, got funky and really let her feet fly; my heart melted.

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There is something about this child, something very special that I adore watching. I am continually amazed that, only just over a year ago, this was a frightened child tossed into what was for her a world of chaos & uncertainty. She had been placed into the arms of people she didn’t know; people who didn’t look like her, smell like her or sound like her. People she couldn’t understand and to whom she couldn’t communicate. And yet, before we even left the Civil Affairs office in China that day, she decided to totally accept us. It has been a mutual blessing.

A year later she is still frightened of some things unknown to her, but inside she is very brave and she is not afraid to take charge; I smile every time I see her walk into a room as though she owns it.  Most importantly of all: she is very happy. Yeah, she’ll tell you, now that her vocabulary is growing, that back in the orphanage she was sad but now no longer is. But you don’t need her words to tell you that; she shows you. Every day she will spontaneously start to dance & sing with a smile as bright as the sun.

Life for me hasn’t always been fun but, still, I have witnessed many beautiful things in my 55 years. Nothing though touches my heart as much as watching this little girl bursting with joy. The exuberance of her smile makes all the drama and pain of the past melt away. There was a time when I asked God why; why I needed to endure all the hardship; what was my purpose in His grand plan?

Now I know.

as20fest2024_zpsoviebpo7Have a MAGICAL Day!