I remember at some point wondering if Lil'Bug would be able to shoot a bow and arrow as I watched the big kids run around playing with theirs. I really shouldn't have thought about it. He picked up Ladybug's bow and figured out a way to do it. He's actually a better shoot then she is!
When you start down the road of adopting of a Special Needs child from China often the first thing you do is fill out your Medical Check List. This Medical Check List tells your adoption agency what type of medical needs you are prepared for in the child you are considering adopting. This may sound a little harsh and can feel awkward like you are rejecting a child on something they can't help. After all if you gave birth to a child with these issues you would deal with it, right?? Of course, but adoption is not the same as giving birth to a child. Children who have already suffered the loss of their first families deserve adoptive families prepared to meet their needs. Perhaps you live in a 3 story home with stairs everywhere. Best to not adopt a wheelchair dependent child. Perhaps a child already in your home suffers from separation anxiety. Best to not adopt a child who will be in the hospital weeks on end. Perhaps your insurance does not cover speech therapy? Best to avoid a child who will need extensive speech therapy. No one I know fills these out lightly. Most spend hours researching, praying, pondering, researching, and praying some more. I know we did.
Along the way in the adoption process you learn a few things. One of them is that the medical files aren't always accurate. You'll hear veterans say "prepare for the worst, hope for the best". You'll hear talk of "leaps of faith" and hear stories of people who walked forward when it was obvious they had not been given the full picture ahead of time. Sometimes you are presented with a child who's need you checked "no" on in that medical check list. This is one of those stories.
I clearly remember the first doctor who reviewed Dragonfly's file saying it was the scantest she had ever seen. It was very basic and only listed her obvious upper limb different which we knew to be radial aplasia and "splay foot", a rarely used term, which means flat arches. There was little to go on on this last diagnosis except a picture of a normal looking foot and an x-ray stating all the bones in the ankle/foot were normal. We knew that additional issues are not uncommon with children born with radial aplasia, but there just wasn't more info to go on. So we took that the leap of faith and hoped for the best.
We knew immediately in China that there was definitely more going on then we had been told. It also became clear that information has been actively withheld from her file. I assume that this was done with the best of intentions, but, honestly, I'm still mad about it. That issue is a whole other post, so I'll leave it here.
Despite knowing immediately that our girl was dealing with something more, it actually took us quite some time to get to the root cause. This was mostly do to a doctor who didn't listen to what I have to say (also another post!). Finally in early Sept we got in to see the right doctors and got the right tests ordered. Dragonfly had to have an MRI which required her to be sedated. She was a total champ.
That MRI gave us our diagnosis, sacral agenesis or Caudal Regression syndrome. Our girl is missing the bottom bones of her spine! This explains why she didn't walk at all until the age of 2, and why she could still only take a few halting steps when she came to us at 28 months. It explains why her ankles turn on her when she stands, and why her right foot drags a bit. It explains her huge thighs and teeny, tiny calves. See Miss Dragonfly is literally a walking miracle. It is by her strenght of will and the Grace of God that she learned to walk independently at all. Now that we know what is going on we can give her the support she needs which at this point includes braces for her feet and may eventually include braces up to her knees.
We don't know everything this will mean for Dragonfly's future, but we know Dragonfly is indeed a special little girl. Yes, we checked "no" to this need on that check list. I'd be lying if I said it was always easy. We've had to travel over 4 hours each way to find the medical care Dragonfly needs and, since the majority of her 9 doctors are located there, it's a trip we're making often. Despite all this, Dragonfly IS a blessing, and we are BLESSED to be her family.
Lil' Bug has been working on cutting with scissors. He's quite good. He's my first kid to actually cut his own hair... and try to cut off his little sisters!
Here is a recent cutting activity.
Because Dragonfly was not only born without usable thumbs but also with wrists that turn in, learning to eat using utensils has been a bit of a challenge. We're still working on using a spoon for thin liquids (she's fine with medium thick things like applesauce and yogurt) but she's got the fork thing down! Check out her grip on the fork in the pictures below! Differently-able! :)
Recently on one of the online groups I am part of the topic came up of our children with radial aplasia/dysplasia being referred to as handicapped. To be honest, I really, really dislike the term. It's not that it is a bad word or degrading or a slur or anything like that in and of itself. I just don't see the word as applying to my children. And, what's more, that I don't want THEM to see it as applying.
I fell pretty much the same about the term "disabled". Again, it doesn't fit Lil'Bug at all. Not at all. There is NOTHING this child can not do with his two hands that any "normal" handed child could do. There is no "dis" about him. I suppose a case could be made that Dragonfly fits the definition of disabled as there are some things she can not yet do as a result of her congenital issues and perhaps she will never be able to do those things. But who am I to limit her?
So in that spirit, I would like to propose a new term that I will refer to them as... not "dis"-able but differently-able. I plan on sharing on this blog regularly things they are able to do but maybe doing it differently. I say it a lot in real life and I'm going to say it now here...
My kiddos have hands that look different, but there is nothing "wrong" with them. They can do anything anyone else can; they just might do it differently.
Occupational Therapy (OT) is one of the main treatments for radial dysplasis/aplasia. Some doctors don't seem to want to recommend it, but OT can really help a lot with stretching the hand/wrist to get the greatest motion range possible.
We began the process to get Dragonfly into OT as soon as we got home, but due to some bureaucratic paperwork type issues, it didn't happen until Aug. Since then, she has been getting OT twice a week to help with strenght, flexibility, and fine motor activity.
One activity designed to help with strenght is to give her some play-doh with a lego inside and made her get it out. We also have her push the lego into the play-doh as well as pat down the play-doh.
Puzzles and lacing beads are great over all fine motor activities. Dragonfly has the least issue in this area and can easily manipulate very small things with her fingers.
For flexibility, we primarily rely on the braces we had made at Shriner's. Some children wear these type of braces all the time, but we only put them on at night so that Dragonfly can use her arms and hands freely during the day.
So this is a glimpse as to how OT can be used to benefit a child with Radial dysplasia/aplasia. OT is definitely a big part of the treatment puzzle.