Monday, January 28, 2008

Ten Fingers, Ten Toes

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!!!

63 Years

My grandma and grandpa (my dad's parnents) have been married for 63 years now and are facing some of life's toughest hurdles. My grandma has Alzheimer's, Parkinson's and Cancer while my grandpa recently had a triple bypass for the 2nd time around and now has an infection that has him beginning his second month in the hospital on a ventilator. He's been completely out of it until the past couple of days and they are hoping he will begin to get better so he can go home eventually. The top picture is of a visit my grandma took to the hospital last Saturday. It is quite a trip for her to make it from Palmdale to Hollywood to see him but it was worth every minute of all of our time to see them together. She came with lipstick on, her hair done and such a smile when she saw him. You can see her smiling at him in this picture. When they left he touched her face for a long time...look at the person next to you (hoping it's your spouse, ha ha) and imagine you both 50-60 years from now. Strange to think isn't it???? Imagine losing that person. So hard! We should never take for granted the people in our lives. We should invest in them for the long haul.
I'm posting this as a prayer request - that you would take time during your day, as believers, to pray on their behalf. Pray ultimately for God's will in their lives and for those of us around them to know what our part is in their trial. We are called to serve others and to love others but sometimes, practically speaking, that has challenges when our own lives are so full. The very least we can do for one another, as Christ commands, is to pray for one another.

Friday, January 25, 2008

Jordan and Devany Finally Meet

A week or two ago I took the kids up to visit my grandpa and Jordan's little friend, Devany had an appt there so we met for coffee. I first met Shannon, Devany's mom, online. We both are members of a Yahoo group for cleft affected kids/adults and their parents/caretakers. Shannon said that her daughter's eye was also affected and since it's so rare I posted a response letting her know that Jordan's eye was also affected by her clefting. We talked on the phone for such a long time and have emailed since then. It was great getting to meet Shannon, her husband Henry and their little Devany. They live in Bakersfield so when Devany was born she had to be airlifted to UCLA because her facial cleft was so severe it was interrupting her vision and her airway. I think her mom told me she has had six surgeries and she is only 2! (Is that correct Shannon? You can post a comment if I have it wrong)

I'm so thankful that God has brought us together. I hope that Jordan, Tessa, Kylie, Devany, and any other little friends we meet along the way, can be friends for the rest of their lives. I hope they can share what God is doing in their lives and those around them through their trials. I hope they can struggle through their trials encouraging each other in God's sovereignty over their lives and His plan for them. I especially hope that through their unique situation they can come to a place of realizing their need for a savior in this fallen world.
Thanks Tessa, Kylie, Devany and others we've met and connected with for being our friends and for sharing this experience with us!!!! We love you and are so thankful for you!!!!

Monday, January 14, 2008

"Postural Insecurity"

Here's Jordan at therapy in the swing. She really loves it and is so cute in it. Her little hands hold on so tight. :)

Postural Insecurity

I know, it sounds like some psychobabble term coined by Dr. Phil or Oprah but apparently it's a common term among Occupational Therapists and Physical Therapists. We've always wondered why there were certain things she struggled with...rolling over (she didn't do it until 10 months and now won't do it anymore)...going down the slide, spinning her around on a blanket on the floor, tipping her backwards, playing in ball pits, etc. It all came together today when our Occupational Therapist thought to check her for "postural insecurity." They put her on an exercise ball to bounce and move her around, they put her in the ball pit, they tried putting her in a little rocking boat, down the slide, and every single time she freaked out. The only thing she tolerated was the slide and the reason for that is because I noticed she wouldn't go down the slide a while back so our therapist gave us some desensitizing techniques that have worked pretty well. I was a bit disappointed knowing that there is another legitimate challenge for Jordan and even more things for us to work through with her but at the same time I was ecstatic that we now know why all these things are issues for her and we are going to get a plan from our therapists that will help her.

From what I've read online and they've described Postural Insecurity is part of the sensory integration/disfunction category and is tied to the vestibular system (inner ear that deals with balance and position in space). Something is out of whack and it tells the brain that the body is falling or is not secure (I don't really know how to explain it and don't quite understand it myself yet). This explains everything! I have been wondering today if this could all be tied to her cleft, especially since it's more severe than a typical cleft and it goes up into her eye, tear duct, and also affected her hearing for a bit. I'm going to research it more and post what I find over the next couple of days so stay tuned. :)


Jordan takes her first steps...with help.

Jordan just started moving her feet to take steps! On Friday her developmental specialist was here working with her and we tried holding her hands and getting her to take steps. She actually did it! We've been trying this for months. We are still working on getting her to do it on her own while she is holding onto something but I guess that'll take some more time and work.

Sorry this video is sideways. I don't know how to change it. That's her physical therapist, Brian, helping her walk at therapy today. He just loves Jordan and gets so excited at any new development. We are so blessed to go to RH Dana!

Sunday, January 06, 2008

Ahhhh domestic bliss.........

I used some Christmas money to buy a sewing machine today. Shan's grandma went with me to Target and we picked out my very first sewing machine. I came home, watched the dvd telling me how to set it up, went upstairs to find some things to use and made this beautiful burp cloth. I used an old shirt that no longer fits (finally able to take advantage of these extra baby pounds I have yet to lose) and some ribbon I had along with an old burp cloth of Jordan's. Actually it may look beautiful from far away and as long as you don't look at the back you might think I know what I'm doing. A close look will tell you I still need quite a bit of practice but it's a good start anyway. You can start placing orders soon. :)
How fun this homemaking stuff is!!!!
More to come.

Tuesday, January 01, 2008

Year's End

Cute Summer is the one on the right...

We are in Bakersfield ringing in the new year with our dear friends Gabe and Staci Woodward along with Summer Martin (see her blog Wonderful, wise Summer read this to Staci and I this morning and it really struck me. Thanks Summer!!!!

O Love Beyond Compare,

"Thou art good when thou givest, when thou takest away, when the sun shines upon me, when night gathers over me. Thou has loved me before the foundations of the world, and in love didst redeem my soul; Thou dost love me still, in spite of my hard heart, ingratitude, distrust. Thy goodness has been with me during another year, leading me through a twisting wilderness, in retreat helping me to advance, when beaten back making sure headway. Thy goodness will be with me in the year ahead; I hoist sail and draw up anchor, With thee as the blessed Pilot of my future as of my past. I bless thee that thou hast veiled my eyes to the waters ahead. If thou hast appointed storms of tribulation, thou wilt be with me in them; If I have to pass through the tempests of persecution and temptation, I shall not drown; If I am to die, I shall see thy face the sooner; If a painful end is to be my lot, grant me grace that my faith fail not; If I am to be cast aside from the service I love, I can make no stipulation; Only glorify thyself in me whether in comfort or trial, as a chosen vessel meet always for thy use."

The Valley of Vision A Collection of Puritan Prayers and Devotions Edited by Arthur Bennett