17 Months, 17 Days

Ella is the exact same age today that Amelia was when she had her hand surgery. I can't imagine having to spend the night at Scottish Rite tonight. I'm so thankful we will all be in our own beds. There are days when I wonder if I will "forget" about the surgery. I don't think about it every day, but I would probably say I think about it every few days. Of course I wouldn't change one thing about Amelia. She's my mini-me. I love the connections we've made with people through this and the connections we hope to make with others in the future. But tonight I'm thankful we were able to fellowship with our friends from our church's small group and then come home and put our babies to bed. At home. In their pjs and not a hospital gown. And then just chill and watch tv.

2 Years and 10 months

Tonight all I can think about is that I am so glad I'm not in a room at Scottish Rite nervously awaiting Amelia's surgery. Tonight I am glad we are home as a family. We are all sleeping in our own beds. I am thankful "cool hand" is a part of our everyday conversations. I am thankful I don't have to make another life-changing decision for my child and wonder if it will be the right choice. I'm thankful friendships were made because of this. I'm thankful. But I am mindful about other children and their families going through this heart-wrenching process. So I said a prayer for them tonight. I've been there, and quite frankly, I don't ever want to go back. On this 2 year anniversary-eve of her surgery, I still thank God for perfect little Amelia. She is the light of my life.

It is extremely difficult to get a picture of Ella these days. She never stops moving, so I had to borrow one from a couple of weeks ago. She's my kid that is in to everything. Before we know it, I'm sure she'll be jumping off the furniture, playing in the potty, and have climbed up the stairs while I'm not looking. We are her human jungle gym and trampoline. She occasionally stands on her own, but she definitely prefers to hold on tight. She holds her bottle sitting up for fear of missing something that might be going on around her. She is still a really good eater. Duh, right? She hates carrots, loves fruit, and can put away some Chic Fil A. She is wearing 12-18 month clothes and even wore an outfit out of Amelia's closet the other day. She kisses, she hugs (on her own terms of course), and can make you fall in love with her in about 2 seconds. She screams dadada and mamama about 7 zillion times a day. She reaches for us and definitely has a preference of who she wants to be with. She's napping twice a day and sleeping great at night. I love this girl so much I feel like my heart will explode!

See You Next Year

Amelia had her 6 month check up at Scottish Rite today. Note to self: make next appointment at 9 am. We were out of there in record time. Don't get me wrong, I love love love Scottish Rite, but I abhor the amount of time we usually spend waiting. Amelia had x-rays today for the first time since her surgery. We got to see a side by side comparison of her hands, and the doctor explained what bone was shaved down, where the growth plate is and how it is still open, and how the base of her thumb looks stable. I explained how "cool hand" has taken on a life of "his" own and shockingly her surgeon didn't send any of us to the psych unit, but he did give me a strange look. Let me clarify: Amelia claims "cool hand" is a boy. He is often in time-out and grabs toys from her right hand. And she can't kiss him because he's a boy. Oh the imagination of a soon-to-be 3 year old. But the best news we got all day was that we didn't need to return for a year. We also met another family with an 11 year old daughter that had pollicization at 2 years old. Pretty cool. Guess that means we will be going to Scottish Rite for a loooong time. Oh, and the term "Radial Dysplasia" is soooo 2007. It's now Radial Longitudinal Deficiency. You know, just in case you were interested.

September 10: A Year Later

Dear Amelia,
A year ago today, your dad and I did one of the most difficult things a parent will ever do--we handed you over to a team of doctors who changed your life. It was a decision that was very difficult for us, and we wouldn't even know if it was the best thing for you until several months later. A year ago today, I, as your mom, prayed that we had made the right decision. I prayed that you would never resent us for making the decision for you. A year ago today, I helplessly waited in a waiting room for your doctor to tell me you were ok. Those were the longest hours of my life. A year ago today, when I saw your bandaged body and held you, I thought I never wanted to let you go. I wanted to protect you from the world. But you are truly amazing. You are resilient. You surprise me every day with what you can do.

So, here we are a year later. You say things like, "Silly cool hand," and "Cool hand's turn." Those phrases are so common in our everyday conversation. You have embraced your difference. We have embraced your difference. We know, without a doubt, that the decision we made was the right one. Sure, it's been hard, but we are reminded often that you are so fortunate. Please remember that you can do anything you set your mind to do. Thank you for teaching me to look beyond other peoples' differences. I am so thankful God chose me and your dad to be your parents. I wouldn't have you any other way.

Gym Rat

Amelia is still loving going to My Gym. I finally remembered to take my camera today. In the second pic, she is holding on ALL BY HERSELF, which shows me that her left hand is getting stronger all the time.

Hands Down Picnic

We went to the Scottish Rite Hands Down picnic today. Despite the heat we had a fun time. Amelia really enjoyed playing at the playground. We always seem to never have time to go to the playground when we have her checkups since they take so long. There were tons of other families there, including teenagers. Brad and I always get pretty emotional when we attend things like this. We are constantly reminded that Amelia's hand difference could be so much more severe than it is. I always feel blessed when we leave, but at the same time I still sometimes struggle with the fact that we are a part of this group. My favorite thing to see today was a 7 or 8 year old girl see some of her friends she hadn't seen in a long time with hand differences too. They hugged and squealed, and it showed me that kids really want to belong and be accepted by others. When you find someone who is like you, you cherish those friendships.

A Thumbs Up for Hands Down

We attended our first Hands Down get-together with our new Scottish Rite friends with hand differences, AKA cool hands, today. Let me just say that whenever some boys get in this group they will all have some cute girls to choose from! I think there were about 5 families that attended, and all the girls had names starting with the letter A. Amelia made some new friends, pictured above, Ava and Avery. We look forward to getting to know these families better throughout the next several months.

I'm Just Sayin...

I've noticed lately during the many hours of tv Amelia and I watch a day (don't judge) that most characters have 4 fingers on each hand. Yay for "cool hands!"

Six Months Later...

It is truly hard to believe that six months ago today Amelia was in surgery. I am so thankful that I am not feeling the anxiousness and worry today that I was feeling six months ago.

I've never really posted any close-up before and after pictures of her hands. She obviously has some scarring which will continue to fade as she gets older. We are so grateful God provided us with amazing surgeons who gave Amelia a new and improved hand!

It Pays to be an Blog Stalker

Yesterday we had an amazing lunch with our new "internet friends" as Brad likes to call them. I have no pictures because I have a ginormous camera that I refuse to tote around for these kinds of events. Anyhow, Brad and I met Jennifer and Tyler and their two precious cuties Bryn and Makenna in OKC for lunch. Jennifer found my blog recently while she was researching pollicization as their daughter Bryn was born without thumbs in November. Of course I suggested Ted's.

It was so great being able to show off the miracle of medical science that can be performed for kiddos who have undergone pollicization. And, it's great to be asked if a picture of Amelia's hand can be taken so that they can show it off to their family because it looks so good. We had a great time visiting, picking up crayons, and keeping our kids from acting like banshees at the restaurant. Kidding, but we did have a really great time! I know that the decisions that are going to have to be made with Bryn won't be easy. It was so rewarding for me too to talk to Jennifer and Tyler about our journey. And I think it was a relief to Tyler to know that we weren't axe murderers.

Moving Her Thumb

Sorry about the very poor quality of this video, but Amelia moved her thumb a ton tonight. She's been moving it for a while, but tonight was the first time when I told her to move it that she did. I still have to hold her other three fingers. It is just one of the most amazing things to me. Enjoy!

Confessions of a Blog Stalker, Part 2

Most of you know that the main reason I started this blog was to keep our family and friends infomed about the everyday happenings in our lives, plus I was being bullied by others to start a blog. Kidding. Another reason was because I hoped that one day someone would find my blog because they had a child going through a similar situation as Amelia. I am so excited to say that this has finally happened! Of course, I never wanted another family to have to experience the same grief and sadness we did when Amelia was diagnosed with Radial Dysplasia, but I was hoping that I could be a resource to anyone that might need me. So, if anyone else finds me one day, please know that I would love to have you contact me. You are not alone.

A Girl Can Only Dream

I hope I am not crushing her dreams by saying this, but I am pretty sure she isn't going to have a future in the WNBA. I think the term "Vertically Challenged" sums it all up around here.

Just wanted everyone to see too how nicely the progress is going 11 weeks post-surgery.

Twas the Night Before Thanksgiving...

And I am truly feeling blessed. A friend pointed out this evening how amazing it is that our family lives in Dallas with immediate access to all of the great doctors we have recently encountered due to Amelia's condition. I was quick to point out that although I wouldn't have chosen my life to be this way, I truly feel like God definitely put us in this spot. So many families in similar situations have to travel many miles to receive medical care.

So as I reflect on the past 11 weeks, I am so, so thankful for my precious daughter, my husband, my supportive family, and our friends. Amelia is doing amazing. She is healing well and is beginning to move her thumb. And although the scars are still there to remind me of the journey she began just a short time ago, she is a normal, healthy 19 month old.

I can finally say,"Who cares."

Extreme Makeover--Amelia Edition

So, here they are...pictures of Amelia's new thumb! She looks very sad in the picture below with our surgeon, Dr. Ezaki, but trust me, Amelia was so excited about getting her cast off. She was so brave and once again sat incredibly still during the unwrapping. The physician's assistant was in the middle of rigging up something to keep the cast on one more week, but Dr. Ezaki came to the rescue and agreed that one week really wouldn't make a difference. Plus everyone assumed the pin had fallen out and there was no point in waiting one more week. It was buried in all of the gauze in the first cast. She has a rockin' new purple splint that daddy says brings out the blue in her eyes. It's all about keeping things fashionable around our house!

I Love Surprises

I really do. Especially the sparkly kind of surprise that involves diamonds. However, the past couple of surprises I have received have not been that kind. If you remember, I got one several weeks ago that involved a surgery 5 weeks before it was originally supposed to occur. The other one happened last night. That one consisted of Brad finding a really cute pink camo covered cast lying in the hallway. THE.CAST.FELL.OFF.

This is what I heard as I was standing in Amelia's closet hanging up her clothes:

Brad: OH.MY.GOSH.CATHERINE!!!!!!!!!!!!!!
Me: AAAAAHHHHHH!!!!!!!!!!!! What happened?
Brad: Call Scottish Rite. Her cast came off.

And then I turned around and saw my sweet little girl's left hand, still not registering that the cast wasn't there, I screamed bloody murder thinking there was something attacking her hand. After I recovered from my heart attack and grabbed my screaming child who seemed to be in the midst of having a heart attack herself, we headed off to SR.

I am sure you are wondering what her hand looked like, etc. etc. I looked, but I kind of had that feeling about how your mom always warned you to not look at the sun too long or it would burn up your eyeballs. But I looked a few times, and truthfully, it looks good. There are still a few little bandages covering the incision. She has no muscle tone in her arm and it is really dried out. She moved her 3 fingers, but she was really frustrated with not being able to move her thumb due to the pin still in place. Brad told her when she looked at it that that was her new thumb. She kept saying, "No." They recasted it as a precaution and off we went.

On the way home I had another conversation that went something like this:

Me: Hey God. Are you trying to teach me something AGAIN?
God: Yes, do you know what it is?
Me: I think so. But you know I really hate that verse you keep trying to pound into my head.
God: You must be referring to Matthew 6:34 about not worrying.
Me: Yep. That's the one. You knew I was worried about how her hand would look when the cast came off, huh?
God: Of course. But you seemed to have handled it well.
Me: Can you maybe next time not let something this dramatic happen when you are trying to teach me something, please? I freaked out a little bit.
God: Maybe you should just work on not panicing so much.
Me: Ok, I'll it my best shot.

We are going back to SR on Wednesday to meet with the team, and hopefully the cast will be removed for good. We'll keep you posted!

No pictures for now. She is in serious need of a manicure!

Confessions of a Blog Stalker

I've been doing a lot of thinking during the past few days about the word "perfect." I think these thoughts can be attributed to everything that has been going through my mind with Amelia. I really try to keep this blog lighthearted and I really don't want everything I write to be about her. But that is my life, so bear with me people without kids and those of you that cry easily.

I had an enlightening conversation with another parent who has 2 children with radial dysplasia last night on the phone. She gave me a lot of insight about coping with a child with a disability, otherwise termed a "hand difference." To sum it up, I have come to the conclusion that I am in need of an attitude adjustment. Because truthfully how Amelia will perceive herself in the years to come all boils down to my attitude about how I handle her difference.

When she was born, I felt she was imperfect. That is a very hard thing to admit. But really no one in this world is perfect. We all have issues that we deal with on a daily basis. We are all embarassed about something. But what if we just accepted these things and said, "So what." So what that I have a huge zit today on my forehead. So what if my second toe is longer than my big toe. So what that I can't see without glasses. You get the picture.

I don't expect that I will be able to say "So what" immediately. Every day I am working through this. God chose me to be her mom for a reason. And God chose us to be in this world even though we don't see ourselves as perfect. Because to Him everyone is perfect.

And yes, Amelia was playing with a wisk when this picture was taken (before surgery). She's easily entertained.

Already Helping Others In Need

Just another quick update on Amelia. The picture below is shortly after her surgery. Her entire hand is covered so her cast looks like a club. Hence the name "weapon of mass destruction." One of the physicians who assisted in her surgery approached us yesterday about the possibility of using a part of the nerve in her thumb they removed to help aid them in research of abnormal nerves in childrens' fingers that grow unusually large. They want to study the DNA from both types of nerves. It was strange to hear that Amelia had a normal nerve in her abnormal thumb, but once again God is revealing his purpose to us in this situation. Of course our response was "ABSOLUTELY!" We are so blessed with the team of doctors we worked with and their excellent care of our baby.

And another blessing--Amelia stood up by herself today when we got home and walked around the living room. It just proves to us how resilient she truly is. All we can ask for now is that she is able to get full range of motion of her new thumb (her former index finger) so that she can use her hand to its fullest potential. Thanks again for the calls, visits, prayers, and food. We feel so blessed.

"For our present troubles are small and won't last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don't look at the troubles we can see now; rather we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever." 2 Corinthians 4:17-18

We Are Home!

We are home and Amelia is doing well. She is such a trooper, and the saying "It's harder on the parents than the child" is definitely true. We are so so appreciative of all your prayers and thoughts during the past few days. Everything seems like such a dream since we had such short notice. I will post more later and hopefully have a couple of pictures. Please know that if Brad or I have a black eye or bloody nose in any of them it is because Amelia has beat us with her "weapon of mass destruction" as we like to call it and we don't hold it against her.

Two Words That Forever Changed Our Lives

This is a very difficult post for me to write today. Partially because I thought I had about 6 more weeks to work on it. God had different plans for me.

Most of you know Amelia was born with a condition called Radial Dysplasia. Basically her radius bone did not grow properly in her left arm and that caused her left thumb to be abnormally formed. She is missing several bones, tendons, and muscles which causes her thumb to be non-functional. Associated with this condition comes heart defects, kidney problems, and blood concerns. She has 3 heart deformities--a hole, mitral valve prolapse, and a bicuspid valve. I won't go into all of the details here but just know her heart is healing and she should not ever need surgery. She has outgrown her kidney issues, and we are trusting God that she does not have any blood issues.

We had our first appointment when she was 8 days old at Texas Scottish Rite Hospital when we learned about her Radial Dysplasia. That day forever changed our lives. Since then we have seen numerous doctors, had a variety of different procedures, and watched our baby daughter go through things a parent would never wish they had to encounter. I think every parent would agree that they would do anything to be put in that child's place during those situations. This week will be no different.

On Wednesday (instead of October 17) Amelia will be having surgery on her hand to remove her thumb. Her index finger will be moved to its place. This procedure is called pollicization, and it is the most common surgery for her condition. The specialists at Scottish Rite have assured us that they want Amelia to have a hand that is as functional as possible. We agree this is what she needs, but it has been difficult for us to accept. She will be in a cast past her elbow for 6 weeks and then a splint.

Although I know she will adapt in her own way I feel the burden of all of her problems. I worry about the future because the world can be cruel to those that are different. All we can do as her parents are to remind her that she is created in the image of God and He has awesome things in store for her.

So instead of doing something totally superficial Wednesday when my daughter normally goes to mother's day out I will be in constant prayer for Amelia thanking God for the perfect child I have and for the surgeons who are making her life better.