Friday, September 17, 2010

Our Visit to Shriners Today

Today Shriner's Hospital was hosting an amputee clinic so that families could visit and talk to other families who had a child with a prosthetic. What a great idea!

We decided to take the whole stinkin' family. Except for Taylor. He said he would rather go to school. He's a bit squeamish about hospitals. We wanted all the kids to have an idea of what was coming and what it would be like for Zoey after surgery.

We were able to visit with two families. The first family had four bio kids and a little girl adopted from China. And what a cutie she was. Oh. My. Word. She had us cracking up with her coy smiles and funny faces. She let us see her prosthetic, her bare leg and even invited Zoey to touch the spot where her stitches had been.

Amazing.

I went there expecting to feel better about the upcoming surgery.

I didn't.

The leg was heavier than I thought it would be...longer than I thought it would be (up and over her knee). It still looks obviously fake compared to the other leg. As in...shiny and you can tell it's fake from across a room. But probably the worst feeling was that the two kids we met didn't walk totally normally. I guess after hearing how great the kids do with their prosthetics, I thought they would walk normally.

Zoey was not feeling good about it either.

There was some good news--they will not cut her leg above the ankle area. They are actually going to leave her heel so that she can still walk on it when needed (middle of the night trips to the bathroom, etc.).

We scheduled the surgery for the week after Thanksgiving. My heart is kinda in my throat right now. I have known for soooo long that this was coming but when it comes right down to it, well....it's just a bit hard to think about losing her little foot. Will she miss it? Will she be mad at us? She can get around now with what she has. Although admittedly, it is getting harder and harder for her because her leg length difference has increased to about 4 inches. But to go from getting around decently to having to wear a device to get around...well, that is a bit of a leap and I hope we are all ready for that.

18 comments:

Kimberlie said...

Oh Karin, I will be praying for you all. One of our previous adoption coordinators also had a child with "a baby foot" and had an amputation. One thing they did before the surgery was to make a clay cast of her foot so they would always have that as a kind of "memory" because they, like you, were really going to miss that little foot.

Hugs and prayers!

Waitingfaithfully said...

Karin,

My heart aches for you reading this--so much to take in. I was going to tell you about a friend of a friend who made a plaster cast of her Chinese daughter's little foot . . . but I see Kimberlie already shared that. I will never forget the pictures of that little girl hugging her little plaster baby foot-- she was so proud. I remember her mama telling that it was very reassuring to her daughter to know that she would still be able to "see" her foot.

It's tough for me to even think about having to do that, and you are Zoey's mama . . . I can't imagine. I do know that God will be with you and Zoey through all of this . . . and that His strength will be your strength--when you feel like you don't have enough.

Praying for peace for you as you let all of this settle in.

Love and blessings~

Tina

sara said...

oh Karin, my heart hurts for you and zoey. I am praying for you guys.

Kim K. said...

Hugs and prayers for your sweet daughter. Please know that I'm thinking of you. I did trace Josie's extra thumb onto several pieces of paper before it was removed for her corrective hand surgery. I don't know if she'll ever remember or care to remember, but I have it for her.

Hugs!!

Freedom Hollow Farmgirl said...

Karin

will be praying for your precious girl and for your family.

Blessings,
Suzanne

Lori said...

Oh, Karin...my heart is so heavy for you. I can't imagine how hard this must be. But I pray that the reality will be that it turns out to be a huge blessing...that it will be a much easier transition than expected and that God will use this for His glory.

I will be praying.

trustandobey said...

Hi Karin,
This is not fun but my prayer and hope is that the whole thing will turn out to be so much better than imagined. I am a little confused by it all. All she will lose is part of her foot? All but the heel? How much of a prostetic will she have to wear? This is not my area of strength so I will be praying extra hard as I fully know the struggles.
Hugs for you and Zoey!
Lisa

Cari said...

Sami has her partial lip reconstruction surgery on the 29th of this month. I'm a little anxious about it to be honest, but I can't imagine the feelings you and Zoey have about her surgery. The comforting fact is that none of these surgeries surprises God. He already knows the outcome...what they'll look like...how they'll adapt. Know that we will be praying for you all.

Sharon said...

Karin, I can't even imagine what you're going through, but I do know that kids are very resiliant. I will be praying that Zoey will find it much easier for her to get around and it will be thought of as a good thing in Zoey's mind. One thing I know about Zoey is that she has the drive to make it all work. I don't think there's anything that will keep the girl down. :)

James, Dawn and Family said...

My heart aches for your descion. When I worked in the "real world" I did phsical Therapy. I'm not sure about Zoey's case but ALOT of the time children under sports ages are given the "basic" prosthetic which isn't too pretty. The extra weight balances & strengthens what needs to be in the muscular system. As they get older, more coordinated, sure of themselves and stronger-their are hundreds of prosthetic choices. They are made of diff materials, colors, weight....They also can be VERY natural eventually or "more cool" as I used to hear. They also can be fit to their personality and need with locking / unlocking joints.Stability needs for each sport she plays and so on. She appears to be an amazing child who sees NO disability. Make a beautiful memory of her foot! Know you've done prayerfully and educationally what you've been called to do. Lots of huggs for a very hard hurdle to jump.

Adeye said...

Whew, my friend, I cannot imagine how tough that road is to walk. But I do know the Father will give you ALL the grace and the ability to go through it when the time comes. I know you will have absolute peace that passes all understanding....and so will your precious little angel girl. He is so good like that.

Tami said...

Karen,

We adopted our daughter Sophie from China just a little over a year ago. She is 5 now and had a syme amputation this past March at the Shriners in Springfield MA. Dr.D was her surgeon. She was born with fibular hemimelia. I remember going to clinic and being where you are...thinking many of the same things. All I can say is Sophie is doing wonderful now!! She walks really well, she's even got attitude in her strut;-). When she is wearing long pants you would never know she wears a prosthesis. She started soccer today and loves it. At least for Sophie, her prosthesis comes up around the sides of her knee, so the knee takes some of the weight... I was told that type of prosthesis will probably be only for the first year. Even though before surgery she walked on her leg and partial foot and can still bear weight, they don;t want weight on the bottom of the leg too soon after surgery. It does take a while to totally heal.

As far as the look of the prosthesis...many opt for, and Sophie was one of those to have some fun with the leg and laminate fabric onto it. We had lots of fun looking for the right one. I was told by another adoptive mom that in many ways by not trying to make the leg look like a real leg people realize what it is and 'get over it quicker' (stares). Many kids have actually asked their moms if they could get a design put on their leg too;-))). I left it up to Sophie, and she's happy that she chose the design route....just an option.

One of your other commenters mentioned doing a cast mold of her foot....we did that for Sophie and it was the best thing ever....it really helped with the mourning process.

Anyway...I'm rambling....If you want to talk, please feel free to email me. randclan@comcast.net. We were/are totally impressed with Shriners. It's tough to go through...but you'll come out the other side just fine. Sophie was so much stronger than I was!

God bless,
Tami

Tami said...

Karen,

We adopted our daughter Sophie from China just a little over a year ago. She is 5 now and had a syme amputation this past March at the Shriners in Springfield MA. Dr.D was her surgeon. She was born with fibular hemimelia. I remember going to clinic and being where you are...thinking many of the same things. All I can say is Sophie is doing wonderful now!! She walks really well, she's even got attitude in her strut;-). When she is wearing long pants you would never know she wears a prosthesis. She started soccer today and loves it. At least for Sophie, her prosthesis comes up around the sides of her knee, so the knee takes some of the weight... I was told that type of prosthesis will probably be only for the first year. Even though before surgery she walked on her leg and partial foot and can still bear weight, they don;t want weight on the bottom of the leg too soon after surgery. It does take a while to totally heal.

As far as the look of the prosthesis...many opt for, and Sophie was one of those to have some fun with the leg and laminate fabric onto it. We had lots of fun looking for the right one. I was told by another adoptive mom that in many ways by not trying to make the leg look like a real leg people realize what it is and 'get over it quicker' (stares). Many kids have actually asked their moms if they could get a design put on their leg too;-))). I left it up to Sophie, and she's happy that she chose the design route....just an option.

One of your other commenters mentioned doing a cast mold of her foot....we did that for Sophie and it was the best thing ever....it really helped with the mourning process.

Anyway...I'm rambling....If you want to talk, please feel free to email me. randclan@comcast.net. We were/are totally impressed with Shriners. It's tough to go through...but you'll come out the other side just fine. Sophie was so much stronger than I was!

God bless,
Tami

Tami said...

Karen,

We adopted our daughter Sophie from China just a little over a year ago. She is 5 now and had a syme amputation this past March at the Shriners in Springfield MA. Dr.D was her surgeon. She was born with fibular hemimelia. I remember going to clinic and being where you are...thinking many of the same things. All I can say is Sophie is doing wonderful now!! She walks really well, she's even got attitude in her strut;-). When she is wearing long pants you would never know she wears a prosthesis. She started soccer today and loves it. At least for Sophie, her prosthesis comes up around the sides of her knee, so the knee takes some of the weight... I was told that type of prosthesis will probably be only for the first year. Even though before surgery she walked on her leg and partial foot and can still bear weight, they don;t want weight on the bottom of the leg too soon after surgery. It does take a while to totally heal.

As far as the look of the prosthesis...many opt for, and Sophie was one of those to have some fun with the leg and laminate fabric onto it. We had lots of fun looking for the right one. I was told by another adoptive mom that in many ways by not trying to make the leg look like a real leg people realize what it is and 'get over it quicker' (stares). Many kids have actually asked their moms if they could get a design put on their leg too;-))). I left it up to Sophie, and she's happy that she chose the design route....just an option.

One of your other commenters mentioned doing a cast mold of her foot....we did that for Sophie and it was the best thing ever....it really helped with the mourning process.

Anyway...I'm rambling....If you want to talk, please feel free to email me. randclan@comcast.net. We were/are totally impressed with Shriners. It's tough to go through...but you'll come out the other side just fine. Sophie was so much stronger than I was!

God bless,
Tami

Tami said...

Karen,

Sorry for publishing 3 xs....LOL! Don;t know how that happened:-).

Lyn said...

Praying for Zoey's surgery and for her mama's heart.
Love,
Lyn

Carol said...

Hi Karen,

I adopted a daughter with amnionic banding that caused her to also have a little foot...that looks more like a heel without toes. At one point they thought she might need surgery to help the prosthetic fit, but later decided she did not.

We echo the experience that Tami described. Meileigh (almost 6yrs) has the type of prosthetic with fabric (of her choice) laminated in it. We have had princesses, Dora, pink dots and bunnies! I would say her gate is probably 95% like a child without a prosthetic. Meileigh also plays soccer and does gymnastics. What is amazing to me is that the kids at her school don't really think much of it. During the winter it is covered with pants, so it is virtually unnoticable. During the summer they might take a quick look and then see that she moves, runs and jumps like anyone else and that is the end of that. About the only thing that is tough for her to do is to sit cross legged. With Her latest prosthetic, her natural foot was big enough to get some more sophisticated (more flexible ankle) technology which has further helped her gait look more normal. My understanding is the bigger she gets, the better the technology gets.

PS...One of Meileigh's nicknames is "The fastest little Chinese girl in the west"!

E-mail me if you would like us to send a picture for Zoey to see.

Carol (catb4130@yahoo.com) (from Michigan)

Wife of the Pres. said...

this post needs to be over on nhbo. may i share it with Tonggumomma to possibly link to?

I know it is raw and full of emotions, but I know it would minister to so many.

i am praying. your post is just real. it is where you are and there is no apology needed for that.

{{{hugs}}}