Wednesday, April 18, 2012

Children's Hospital Visit / Medical Future for Jael



For those that may not know, we didn’t begin this journey (with Jael) thinking our family was expanding . We began this journey in prayer. We were praying for the children on Rainbow Kids to find families. It is amazing to see children come off the list of THOUSANDS of waiting children!

Then we saw our daughter!

This is the first picture we saw of Jael (AoJing Min).


They called her “Shelby” on Rainbow Kids, a name to keep her from being just another number. Her special need was listed as “Lower Limb Differences”. She has a congenital deformity of her lower legs.

There is such beauty in her little legs. Every aspect is precious to us. We want her to know there’s no shame in this journey…every difference…every triumph…every step with our Heavenly Father.

Today we had her big evaluation and testing with a huge and well known Children’s Hospital. We had our first ALMOST everything.

But I’m getting ahead of myself.

We walked into the cavernous main entrance with natural light filling the room and felt a little like we were in the “It’s a Small World” ride at Disney Land. This hospital is made for children of all ages. It is filled with Imagination, colors, and beauty. We truly had never seen anything like this. This is a hospital to serve children who are going through trials in a way that would make them want to come back.

As we sat waiting by a MONSTER fish tank (I wish I had taken a picture) our sweet girl conned them out of FIVE (yes, I said five) small little stuffed animals. When I said that we really didn’t need all of them, they kept on proclaiming that she was “just TOO cute”. I guarantee Jael is going to want to come back here.

Within minutes we were ushered into a little room. A co-worker of our main doctor examined Jael and ordered x-rays on her legs and hips. He let us know what he expected he might see in the x-rays.

She loved the mirror by the exam table!

He felt she was missing her tibia in both lower legs. The lower leg has two main bones, one being the tibia. He expected to see that her knees were not fully formed and also not functional. There was a concern over her hips (that one was not in its socket), as one leg (to the knee) is slightly longer than the other.

We immediately went into space (didn’t expect that did you?)


Seriously, I would have sat and played in Radiology for awhile.

No “ Let’s see if we can get you in?”, but an immediate comfortable passing of us to Radiology and only a ten minute wait in a fun little play land and instructions to come back and see the doctors when we finished.

They are making children feel valuable. Wow…just wow…

After x-ray walked back around the corner to the doctors and were ushered immediately in. Our doctor and two from his “team” were in the room to guide us through what they saw and their recommendations (as well as our options).

Jael is missing her tibia in both legs and the growth is not normal in the remaining lower legs. Her hips are fine. Her lower legs are not functional and, though have sensation, she can’t purposely control them. She actually tends to “fling” them more than anything.  As an adult, if we did nothing, she would most likely have the mobility she does now (walking on knees, etc.) and be in a wheelchair.

Their recommendation (which is what we expected) is amputations mid knee on both legs. Mid knee so that her femur would grow normally into adulthood and she would still have a partial form of the knee to walk on.

The risks are fairly minimal, considering the operation. There is a major nerve and a major artery, but the surgery has been done enough to make this minimal in the overall risk assessment. The biggest risk is actually infection. They have said that even this is minor in pediatric patients.

Miraculously only two days will be spent at the hospital! Recuperation will be at home and three months later her first prosthesis. At least that is the plan.

Yes, this is huge to us. The thought of Jael’s pain…not good. The thought of her joy as she runs…wonderful.

In two months we go to the Prosthesis Clinic and meet our surgeon. He’s one of two doctors leading in this kind of surgery. We are very blessed. At the Clinic Jael and the rest of our family (the kids and possibly grandma will go next time too) will meet another child that has been through amputations so Jael will understand more and see the normalcy a child with a prosthesis has. We will also meet with the doctors and our “team” that will travel this journey with us.

If we feel Jael understands, as much a four year old will be able to, then surgery will most likely be in the beginning of July…a mere three months from now.

Yes, we had planned to wait a year to do surgery for attachment sake. Jael is attached…securely…amazingly. Our concern for her is still emotionally though. The younger she has this surgery the better…BUT we want to insure that she can understand (to an extent) what is happening. We don’t want her to wake up from surgery not knowing what has happened. We made the choice to wait two more months (to start…more if necessary). This will give her a chance to acquire more language and us a chance to show her pictures of prosthesis and such and help her begin on the road to understanding.

Her prognosis? She will walk, run, play sports, and just about whatever….

They have a great prosthesis team that even (now this is so cool) will work to make prosthesis that apply to a child’s specific interests. They’ve made them to hook into a bike for a biker. They get creative.

Some of you may be thinking, “Kat and her family must be rich!”. We aren’t…well, no more than any person who has food, clothes and a house (richer that 75% of the world if you do). This hospital takes care of the expenses. We are so thankful to live near this kind of blessing!!!!

So this is the beginning of Jael’s medical story…at least in our family….her triumph over things thrown at her….her joy at EVERYTHING!

Thank you for joining us on this new journey. Prayers are appreciated (coveted), as well as hugs (those are great too).

“The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I will hope him.’” Lamentations 3:22-24

3 comments:

  1. Amazing. You are in my prayers. That hospital is an incredible place. We are blessed to have two of our children seen there, and are always amazed at the kindness with which we receive such excellent medical care. Will be praying for sweet little Jael as you begin this huge journey.

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  2. What a ride! I am just awed at how God is taking care of every detail and continuing to pray for you all. I am specifically praying now that Jael would have as much understanding as she needs about the process and that she would trust you all through it all. I am also thankful for the resources available to her so near you!! {hugs}

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  3. She's going to do great! It sounds like they're planning the same surgery our son had. I know it's scary, but she is going to amaze you - but you already know that. We'll keep her in prayer, and let us know if you have any questions about our guy's experience.

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