Amniotic Band Syndrome – Dwimble.com http://www.dwimble.com Our Family Blog - Mike, Louanne, Nadia, Amelie, & Dani Sat, 04 Feb 2017 21:08:53 +0000 en-US hourly 1 https://wordpress.org/?v=6.5.5 http://www.dwimble.com/blog/wp-content/uploads/2017/06/cropped-girls_blog_icon-32x32.jpg Amniotic Band Syndrome – Dwimble.com http://www.dwimble.com 32 32 Hand Camp 2016 http://www.dwimble.com/travel/hand-camp-2016/ http://www.dwimble.com/travel/hand-camp-2016/#respond Fri, 20 May 2016 10:00:13 +0000 http://www.dwimble.com/?p=9727 Continue reading "Hand Camp 2016"

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At the end of April, Amelie and I headed for Hand Camp 2016 at Camp John Marc. We had a wonderful time just like we did last year and it was neat to have a time with just the two of us. She enjoyed all activities and we made sure to get signed up for the Ropes Course and Fishing right away. The facility built a new Ropes course since we came last year and I really wished there would have been time for the adults to have a time on the zip line too.

Games played during the first night.

Amelie climbed the wall SO FAST!

//www.youtube.com/watch?v=7aX8PmtAyBc

Fishing

Cooking and free time.

Fun with friends at the carnival.

Amelie brought Ami to hand camp of course.

We had such a great time and made new friends and saw old friends. The staff and volunteers were just as wonderful as last year. I was again blessed by the parent only times and encouraged that we are doing the right thing in how we are raising Amelie to deal with her limb difference. I am so glad that we got a spot again this year for this wonderful camp put on by Scottish Rite.

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A day in Dallas http://www.dwimble.com/home-life/a-day-in-dallas/ http://www.dwimble.com/home-life/a-day-in-dallas/#respond Fri, 22 Apr 2016 10:00:51 +0000 http://www.dwimble.com/?p=9692 Continue reading "A day in Dallas"

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Amelie was due for her yearly hands and feet check up at Texas Scottish Rite Hospital so the girls and I packed up and headed for Dallas. Amelie got the all clear for another year which was a great relief. It doesn’t look like the toenails they removed are growing back so that is good news. Once we were finished we headed over to redeem a gift for a free dozen cookies from Paradise Bakery. YUM!

Popcorn is the best part of Scottish Rite.

Then we headed for the Dallas Children’s Aquarium. There were quite a few school groups in there, but we still worked our way around the place. Dani couldn’t wait to go see the stingrays, but they weren’t starting the feeding until noon and I wanted to just spend the end of our time there. This time I remembered to bring extra shirts for the girls to change into since they get splashed.

Chambered Nautilus 

Nadia and Dani fed the stingrays the little pieces of shrimp that they sell. Amelie wanted no part of it because it creeped her out the last time. She just wanted to pet the sting rays as they swam past.

“He splashed me!!!!!!!!” 

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Amelie toe check up http://www.dwimble.com/medical/amelie-toe-check-up/ http://www.dwimble.com/medical/amelie-toe-check-up/#respond Sun, 01 Nov 2015 11:00:20 +0000 http://www.dwimble.com/?p=9267 Continue reading "Amelie toe check up"

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Hiding in wait for the doctor.

At the end of October Amelie had her check up at Texas Scottish Rite from her surgery back in July. They wanted to see how the toes were looking and if the nails were growing back. They told us that everything looked good and that will continue to check them at her yearly hand clinic visit.

After the check up we went to get a drink over at 7-11 and the man at the register asked about school and I said she had a check up next door. And he said, “All princesses who go to Scottish Rite get a Slurpee when they are done.” Amelie was SO EXCITED that he gave her a free one.

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Casts off! http://www.dwimble.com/medical/casts-off/ http://www.dwimble.com/medical/casts-off/#respond Fri, 07 Aug 2015 10:00:29 +0000 http://www.dwimble.com/?p=8722 Continue reading "Casts off!"

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Once Amelie wasn’t feeling any more pain she started to run around and play like normal – even with two casts on. So she ended up cracking one of them open 9 days after her surgery. I called Scottish Rite and explained the situation. They asked me if I wanted to try and take the cast off myself since I had seen it done so many times and I said yes. We got it off and took a photo for them and once the doctor saw it he said we could just keep it clean and keep our appointment for the next week. Then the next day she cracked the other one open! So Mike took that one off and we got her feet cleaned and wrapped in ace bandages because the toes themselves were still sensitive.

The following Wednesday we headed for our check up and Dr. Stutz said that her feet looked great. He told us to come back in 3 months so we could see if any of the nails had started to grow back. We pray that the answer is no!

With Dr. Stutz.

The girls waiting at Texas Scottish Rite for Amelie’s turn.

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Amelie Surgery 2015 http://www.dwimble.com/medical/amelie-surgery-2015/ http://www.dwimble.com/medical/amelie-surgery-2015/#respond Mon, 20 Jul 2015 10:00:09 +0000 http://www.dwimble.com/?p=8701 Continue reading "Amelie Surgery 2015"

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On July 17, 2015 Amelie had surgery on some of her toes. The banding that affects her fingers was also causing problems with her toes so Texas Scottish Rite said that they could give her some relief.

Ever the fashionable girl she chose her dress for the day. And of course her Ami doll had to come with us. We met the newest addition to the hand team Dr. Stutz and I liked him immediately. All the docs are so great at TSRH and he seemed like a perfect fit.

Daddy helping with a breathing treatment so she could look at her new sticker books. After the treatment and the “goofy juice” they rolled her back and gave us our beeper. They told us to expect it to take about an hour so we decided to go and have lunch in the cafeteria.

I saw this while waiting on our food. Even the wet floor signs are cool at Scottish Rite.

We asked them to wrap the Ami doll legs while Amelie was in surgery. They asked us her favorite color and we said pink. When she realized that Ami had casts too she said, “Did Daddy do that?” Makes my heart happy that she knows that it is something he would do.

When Amelie woke up she was in so much pain. It absolutely broke my heart. They had to give her a lot of meds to calm her down and get her to fall back to sleep. This was the hardest wake up amount of pain she has had in 4 surgeries.

Once we were home and Amelie was awake again she wanted a photo of her and Ami with their casts. She did such a wonderful job and was so brave.

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Thankful Thursday http://www.dwimble.com/thankful-thursday/thankful-thursday-239/ http://www.dwimble.com/thankful-thursday/thankful-thursday-239/#respond Thu, 28 May 2015 17:00:49 +0000 http://www.dwimble.com/?p=8673 Continue reading "Thankful Thursday"

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I am so thankful for the staff at Texas Scottish Rite. Amelie had her yearly check up and it means that she will need surgery this summer on her toes to correct some of her banding issues, but we know she is in good hands.

While we were there people from every department we have worked with for her or Dani popped in the exam room to see us which I thought was so sweet.

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Amelie’s yearly hand check up http://www.dwimble.com/home-life/amelies-yearly-hand-check-up/ http://www.dwimble.com/home-life/amelies-yearly-hand-check-up/#respond Mon, 28 Jul 2014 01:28:29 +0000 http://www.dwimble.com/?p=7502 Continue reading "Amelie’s yearly hand check up"

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July 8, 2014

The day after Dani’s cast removal we had Amelie’s 1 year hand check up at Texas Scottish Rite so we loaded everyone up and headed over there. We started in radiology and this time Dr. Oishi  gave us a photo copy of them.

July 8, 2014

I know a lot of people have wondered what her hand bones look like and so I was glad to have this as a reference. Right before we started the appointment a person from the media department asked if we were willing to have Amelie filmed for a project they were putting together for the times Dr. Oishi travels around speaking and teaching about the work they do at Scottish Rite. We said of course and in they came with the camera. Dr. Oishi said that she is doing well and has good movement. He also said that there was no reason to do another surgery on the left side at this time. There was a possibility of removing the webbing to make the fingers a little longer, but he is worried that the middle finger will just hang there because it doesn’t have a longer bone in there. Right now it is sort of attached to the ring finger and she gets some use out of it.

He told her that she did a great job for the video and we wouldn’t have to come back for another year! Yippie! Once that was finished we bought some popcorn and headed outside to check out the new playground remodel. It is awesome!

July 8, 2014
July 8, 2014
July 8, 2014

After they had a good time outside we headed home relieved that surgeries for this year are behind us.

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Amelie’s Right Hand 2013 http://www.dwimble.com/videos/amelies-right-hand-2013/ http://www.dwimble.com/videos/amelies-right-hand-2013/#comments Mon, 10 Jun 2013 23:12:59 +0000 http://www.dwimble.com/?p=5313 Last Wednesday we went to Texas Scottish Rite Hospital for Amelie’s cast removal. This video has footage from before her surgery, an interview with the cast on and the day the cast came off and we saw her new fingers for the first time.

//www.youtube.com/watch?v=z8IX6PqhGGs

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Amelie’s 3rd Surgery http://www.dwimble.com/home-life/amelies-3rd-surgery/ http://www.dwimble.com/home-life/amelies-3rd-surgery/#comments Thu, 16 May 2013 20:07:25 +0000 http://www.dwimble.com/?p=5274 Continue reading "Amelie’s 3rd Surgery"

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May 10, 2013
Click on the photo to see album

On Monday May 6th we got a call in the afternoon from Scottish Rite letting us know that they had a cancellation for Friday morning and we jumped at the chance to have Amelie’s right hand worked on. I told Amelie about the upcoming surgery and the first thing she said was, “Dat’s cool.” I asked her how it made her feel that they were going to try and make her some new fingers. She said, “Dat makes me happy.” I told her she would have to wear a cast again and she said, “Dat’s okay mama. Maybe I can get a toy!”

Our friend Sarah came over early in the morning to pick up Nadia to keep her for the day and that was a big relief. Our pastor Darwin came up to the hospital to pray for Amelie right before they started to prep her for surgery which was also very sweet. We had the same day surgery nurse and were in the same spot for the prior 2 surgeries so everything was very familiar and we were ready to roll. Amelie just wanted to confirm “no pin” and “new fingers” and she was ready to go.

Amelie's 3rd surgery Amelie's 3rd surgery

They gave her another Raggedy Ann doll to add to her collection. When they gave her the “goofy juice” to help her relax they also put the side bar up and she said, “Now I SAFE!”

Amelie's 3rd surgery

This was after the surgeon and anesthesiologist had come by the confirm everything and she was starting to act really silly and saying all kinds of funny stuff from the “goofy juice” which she told us tastes disgusting.

Amelie's 3rd surgery

This was shortly before they rolled her back and we headed to the Crayon Cafe to have breakfast.

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Amelie loves elephants and while we were waiting we found this cute guy in the gift shop. We also talked to the surgeon and she showed us a few photos of Amelie’s hand before they put the cast on. I teared up a little seeing those 3 new fingers.

Amelie's 3rd surgery

Once out of recovery she was awake just long enough to snuggle up to this guy and go back to sleep.

20130510_111745Amelie's 3rd surgery

At this point she was doing a lot better and coming out of the haze. A little while later her pain meds and antibiotics were ready in the pharmacy and we packed up to head home. She fell asleep so we headed straight over to Sarah’s house to pick up Nadia. I had sent a little surprise package with her with 4 new costumes I had picked up on clearance so her and Sarah’s girls could play dress up. Amelie wanted to see them when we got home and asked so sweetly if she could be a ladybug. It’s a good thing it was so stretchy and went over the cast.

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She was woozy from the meds and Nadia read her books until nap time. The rest of the evening was fine and she didn’t seem too uncomfortable. She took the cast in stride, but the pressure bandage on her skin graft site really bothered her and she kept picking at it over and over.

*On a side note, all the hand surgeons at Scottish Rite are amazing and they travel the world training people and doctors come to Texas to be trained by them. When you schedule a surgery you don’t know who you are going to get, but you can be sure they will be good. When they put my parent hospital band on and I saw Dr. Ezaki on there I started to cry a little because she is like a ROCK STAR in hand surgery circles. The only other time we have ever even seen her was when she did the release of Amelie’s left hand in April 2011. It was thrilled and after she showed us the photos she took I danced a jig in the middle of our waiting area.

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Amelie and Scissors http://www.dwimble.com/adoption/amelie-and-scissors/ http://www.dwimble.com/adoption/amelie-and-scissors/#comments Mon, 15 Apr 2013 19:34:44 +0000 http://www.dwimble.com/?p=5179 Continue reading "Amelie and Scissors"

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Back in 2010 on the day we got Amelie’s referral a random thing happened. We got her file and were scrolling through it on the computer and in my head I thought, “Great. We can adopt her, she’s so cute, her hands aren’t really a special need, but HOW in the world will I teach her how to use scissors?”

Now trust me, I understand that I was totally hyped up from waiting and knowing that this would be the day we would be matched and it was all so exciting and that affected my thoughts so randomly. But the problem was that I didn’t say anything out loud. So after who knows how long Mike says, “Louanne, are you going to say something? Are we going to adopt her?”And I am like, “OF COURSE! Yes, sorry, I was thinking about scissors.” I instantly felt bad that I was ready to go get her tomorrow, but left Mike hanging there wondering.

Fast forward to last year and I am thinking about working with Amelie on new fine motor skill practice like scissors and that kind of thing. Being the supply loving person I am, I start checking out scissors everywhere. And I buy various types of “special” scissors. Some that are supposed to help toddlers or people with hand issues or whatever.

Turns out all it was all a waste of time and money. She does an awesome job with plain old school scissors that I picked up on an extra buck deal from CVS.

I am sure there is a lesson here for me on worrying 🙂

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