How other children react to a little hand

Amniotic Band Syndrome effects everyone a little different.  Not every child will have a little hand. Not every child will have nubbs. Not every child will even have their hands effected.  Some will have their feet effected.  Some will loose their whole or half arm or leg. But, no matter how they are effect there will be something that makes them look different.

The average adult will look, wonder what is wrong or how they got that way but never ask.  But not those sweet young children.  They will walk right up, touch it, feel it and ask why don’t you have fingers? What Happen?

We ran into the most precious thing this last Sunday.  We were at church and during service the minister called all the children up for Children’s sermon.  All the children went up and sat down. Haylee sat down on the steps and a young boy, probably about 2 maybe three, came and sat down next to Haylee.

At first he did not notice her hand.  Which actually happens alot.  But then after a couple minutes Haylee moved her hands around and he noticed.  Be began to hold her hand.  Touch her fingers and just softly play with her hand.

Haylee is a very patient person and a very kind and compationate person.  He let the little boy look touch and feel her little hand.  The whole time he was doing this Haylee did not frown or get upset.  Instead she sat up there with the biggest smile you had ever seen.

It brought tears to my eyes to see not only this young courious boy up there checking things out but to also see Haylee up there not being upset but rather letting the boy explore and figure things out.

I signed to Haylee good job.  I wanted her to know right then and there just how proud I was of her and what an awesome job she was doing.

We don’t mind if you ask us what happen.  Actually we prefer it over staring.  We want to tell everyone about ABS and how it has not only effected us but how it has blessed our lives and  made us the people we are today.

Keeping it Warm

With the weather starting to get cold we have some extra worries. Worries about how we are going to keep Haylee’s little hand and nubbs warm. Because Amniotic Band Syndrome has effected Haylee’s little hand, wrist, and fingers it also has made it hard to find a pair of gloves that fit. But we don’t just struggle with finding gloves that fit. We also struggle with keeping that little hand warm.

The first issue we have is that because Haylee has no fingers (only nubs) on her little hand then we have an issue with circulation to her little hand. Because we have an issue with circulation we have to watch that we keep that little hand extra warm. Her little hand turns blue very easy and very fast if it is not kept warm. As Haylee has grown up we have taught her to keep an eye on her little hand and if it starts to turn blue the first things she needs to do is put it under her clothing in her arm pit to warm it up fast. And Haylee has done very good about knowing when her little hand is getting too cold and does exactly what we have showed her to do.

The other issue we have is finding gloves for her little hand. It is very hard to find gloves for both hands and normally we have to buy two pair. But before we put on her glove we have socks that people (including us when Haylee had flower) us for prostisis. She wears that a lot. Sometimes she wears it under her gloves sometimes she just wears it when she feels her little hand getting cold. I noticed her recently that she has been carrying those socks in her backpack so that if her little hand gets cold at school.

My little girl is growing up more and more each day.

Haylee Meets Cadence

Two weeks ago on a Saturday was a very special day for us.  Haylee got to meet a young girl that has also been affected by Amniotic Band Syndrome. Cadence’s Mom brought her down to meet with us.  We were supposed to have a Lincoln ABS meet up but Cadence’s family was the only family to RSVP.  But we liked it that way.  It was a nice time to get to know Cadence and her mom and brother.  Amniotic band syndrome effects people in different ways.  Sometimes people have very noticeable effects to ABS while others you can hardly tell.

Cadence’s effects were somewhat the same but different at the same time.  A few things the girls learned about each other was one that Cadence has had surgery and Haylee has not.  Cadence has partial fingers or full fingers and Haylee does not.  Cadence is very very shy and Haylee is not.

The girls (and Cadence’s brother) played together very well once they got past the shy part.  Jim helped open them up by giving tractor rides.  Although Cadence was not quite ready to do that yet.  It was still wonderful to see them together and interacting.  I also want to Thank Darin Sargent for spending us the book her wrote called, “Thank You Mr. Jenkins”, We were able to give Cadence a signed copy from Darin.

But at the end of the day both girls are true gifts from God that only a select few get blessed with.

Little Devil…..

This Halloween Haylee decided she was going to be a little devil.  When I asked her how come she wanted to be a little devil she said because mom, I am an angel every day and have to be something different for Halloween.  The things 8 year old’s think of.

When she was little I always worried about how she would handle being around so many other kids with a small hand due to Amniotic Band Syndrome.  But I have learned if you don’t make a issue out of it then Haylee does not make an issue out of it.

As you can see in the picture Haylee had a long weekend of Trick-or-Treating.  Friday night we were invited by the Shriners to an awesome Halloween Party.  They had tons of great games stations and Haylee just had an amazing time. It was nice that she got to talk to some of the different Shriner members and her favorite part was talking with a Shriner named Doug.

On Saturday we went to a few local friends houses then off to Hy-vee Halloween maze that had 35 different businesses handing out candy, sodas, ice cream, hotdogs, and tons of other great stuff.  Haylee had a great time and there were tons of people there.  After that we headed to Gateway mall to do some trick-or-treating.  Last year we went and Haylee came home with tons of candy.  This year we went and Haylee said she was ready to go after walking by about 15 stores and only 1/3 of those stores were handing out candy.  So we left and went off to Parkers for some good BBQ food.  Haylee’s Daddy loves BBQ and so Haylee and I decided to treat him for Halloween night.

On observation I did notice is how well Haylee adjusted to holding the trick-or-treat bag with her little hand and taking candy with her big hand.  The little things that she figures out to make things work.

Nubbin’s

Haylee has Nubs. Nubs are just one form of ABS. Nubs happen when the growth of fingers is stopped at an early stage of development. Some children have small nubs like Haylee and other children have longer nubs.

Tie My Shoes????

So how old where you when you learned to tie your shoes?  I don’t remember how old I was but I know I was not yet in school.  But now I have a better question for you and I want you to go try it.  Go try and tie your shoes with one hand.  HA HA HA.  Got you.  Much harder done then said right.  Well I was over reading My Best Friend’s blog and her son Bug is  also struggles tying his shoes.

So just because we have one hand, two hands or no hands does not mean we can all tie shoes the same.  Nan did an amazing blog post with a video that I want to share with you.

Sometimes things can be so difficult for little Bug.  We’ve tried for months to teach little Bug how to lace a shoe with a cardboard cutout, lacing cards even tennis shoes but with no luck.  This summer Bug took OT and his instructor loaned us a teaching tool that made all the difference in the world. He learned to lace his shoe in 3 days. Yes, can you believe it, 3 days! I was blown away and he was so proud of himself.  We are still working on the bow tying but we got half of it down so we are both so proud.  Just look at him go.

That is just a snippet.  If you want to read the whole thing and watch Bug tie his shoes and My BFF help her son then head on over to A Mom Blog and check it out.  She even gives the link to that amazing shoe that helped Bug learn to tie his shoes.  OH and….

WAY TO GO BUG!  WE ARE SUPER PROUD OF YOU.

Making Things Work

Since the day that Haylee is born we have figure out how to make things work with just five fingers. Sounds simple enough right? You think how hard can it be to do with one hand? But, have you tried to tie your shoes with one hand? Have you tried to zip your coat with one hand? How about pick up that quarter laying on the ground not using your fingers?

We think about those things. We do a lot of trial and error in our house. We think about everything we do first with two hands and then we figure out how we can do this with just one hand. If we can’t figure it out then we go to the internet or our wonderful friend Darin to see if there are other ways to do it. Have you ever sat down and really thought cutting up your meat with just one hand?

Today Haylee and I were making a cake and it required eggs. So I assigned Haylee getting the eggs out of the fridge. I watched carefully just to see how she was going to handle holding eggs and climbing back out of the fridge. (We own a fridge that has the freezer on the bottom so many times you will find Haylee in the fridge literally) Haylee pulled the egg out of the carton and cradled it in the nook of her elbow of her little hand. It was the cutest thing and brought tears to my eyes.

I thought my daughter is going to be perfect. She is going to do anything anyone else in the world does but with one hand. She will cook and clean and work and get married and have children. That is a dream every mom has for her kids. And it is the same dream I have for my little hand big heart daughter.

If only I was a bird…

A Little Hand, but a Big Heart

You know we all say great and wonderful things about our kids but I have to take a minute to brag about mine.  Haylee as most of you know was born with a little hand but has a heart of gold.  I often wonder just how big her heart truly is.  God truly sent me an angel from above.

We are setting up a store for Little Hand Big Heart.  Here is a sneak peek of what we have so far.  http://www.cafepress.com/lhbh .  Haylee decided that half of everything she is going to make is going to go to Shriners.  I mean seriously, this little one of mine is 7 years old and she is donating half of everything she makes back to a wonderful resource.  So I asked her what she was going to do with the other half.  Well that lead to a great call with a wonderful person who suggested a vision board.

Haylee and I created the vision board and are only about half done with it but everything on her vision board is about giving back.  She wants to Meet Darin (Darin, You were top of her list), she wants to take her uncle Dave snorkeling, she wants to write a book, she wants to make gift baskets and send them to any moms that are pregnant or have newborns that were effected with Amniotic Band Syndrome, she wants to travel the world and speak to people about living with a little hand.  And this is only half of all the things she wants to do.

Can you believe a little girl can have such a big heart?

This is a Smile That I love to see

This is Haylee probably 4 years ago.  How super cute is she.  And that Smile brings tears to my eyes it is so beautiful.

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