These pictures are of her left hand, the one that appears to be more severely affected. Notice that although her fingers are short (due to the webbing and the missing bones at the tips of the fingers) she still has a great thumb. The thumb was attached to the pinky so the fist was pulled tight but when she was three months old the band of skin snapped and her thumb was freed. Since then we've stretched it out so that the thumb is useful.
Here is the hand that appears to be typical. Most people think this hand wasn't affected but it seems that this one was actually more severe in the scope of things because her thumb is very short and only has the very first bone coming out from the palm. The tip of the thumb can be pulled out, moved and bent backward and forward because it is only skin. This is the thumb that her original doctor said he would remove. Since the base of this thumb is strong it is vital that it not be removed! Our current surgeon (praise God we got a 2nd opinion) is planning on stabilizing this thumb and making it a little longer. Notice the index finger is also shorter than normal.
So often we talk of checking to be sure our kids have ten fingers and ten toes before we heave our sighs of relief upon their delivery into this world. This cliche implies that as long as the ten fingers and ten toes are there all else will fall into place. We all know that many babies are born with less than ten fingers and ten toes and all is still well. We also know that it's an indicator of some challenges lying ahead for them. I thought of this when I was meeting with Jordan's hand (and foot) surgeon last week. He was describing to the residents how severely affected Jordan's hands are as a result of the amniotic bands that wrapped around them. He was trying to impress upon them that they will not typically see a case this "bad." Although I completely understood that he was speaking from a hand surgeon's perspective I also fully realized that that's all it was, his perspective - his clinical, surgical, "functional" perspective. I, somewhat jokingly, informed the residents that Dr. Jones is mistaken in thinking that this is a very severe case of amniotic banding, that most of the parents I've met online are fitting there 1 year old for a prosthesis or figuring out how their 8 year old can best use the little "nubbins" on his shoulders where his arms should be or they're teaching their 16 year old how to drive with their feet. From that perspective, Jordan's case is very mild. Everyone got a good laugh but it really stuck with me that I can choose to see Jordan's case as very severe and I can listen to the doctors saying that her challenges are going to be great and that there isn't much more they can do for her hands or I can see it from another angle. Yes, it does seem rather unfortunate that her longer, stronger thumb is on the hand with the weaker fingers that are fused together while her weaker, shorter thumb is paired with the more typical fingers on her right hand, I still choose the perspective that she will do all that she is supposed to do in God's will for her life. I could sit here all day and think about the things she may or may not be able to do later in life just for her to surprise us in the end (she is pretty stubborn for those of you who don't know :) ). My guess, though, is that my time pondering would be better spent praying...praying that I'm obedient in training her up in righteousness, that she will learn to love the Lord her God with all her heart and lean not on her own understanding (taken from Proverbs 3:5), that she would learn early to obey her parents in the Lord so that things will go well with her and she will live a long life on the earth (taken from Ephesians 6:1), and that she will spend her life being defined not by how severely she is affected by this circumstance but how fully her life can be spent for the Lord. If only we all had God's perpective rather than our own or that of the people around us. Imagine the possibilities.
For the clinical details since I mentioned them:
+ He will only probably do one more change on her hands. He will take bone from her leg or a toe (yes we do kind of like the ten toes/ten fingers thing and want her to keep all ten so we'd prefer the leg bone missing a chunk) and use it to lengthen the short wobbly thumb on her right hand. He will use pins which will stabilize it until it grows together. It will be only a little longer and won't bend - even after the pins come out. I can't picture it either - we'll have to wait and see how it works.
+He can't widen the web spacing between the fingers on her left hand (the shorter fingers that have been more cosmetically affected) like he anticipated because of the nerves in the fingers. He says the pinky on that hand won't be of much use and that she will have a sort of side pincer grasp rather than a stronger, straight on pinch.
+ He says he will do her surgery in August sometime so that it is before her 2nd bday.
---One year later, leading up to her 3rd bday, she will have her next facial surgery. Dr. Kawamoto will put in an artificial tear duct in her left eye, raise her left eye up so that it lines up more closely with her right and he will do another little touch up on her nose.
Thankfully that will give us 7 months or so for now without surgery and then after that we will have an entire year without another surgery, Lord willing. Imagine that! A whole year with no surgeries!!
There you have it - sorry the update is a bit late getting out. Our therapy schedule is still grueling but she is developing in leaps and bounds lately so we are encouraged.
Thanks for checking in!!!