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.

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!!!!!!!!” 

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.

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.

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

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.

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!”

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.

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

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.

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

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.

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.

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

//www.youtube.com/watch?v=JTUfSwevND0

Clowning around in the day surgery area. 

On December 20th we had a one year check up with the surgeon at Texas Scottish Rite hospital, since they told us in December 2011 they wanted to let her hands grow for a year. We arrived and got checked in and the admissions woman said that Southwest Airlines had donated pillow pets for the patients. Amelie chose a lady bug and then the woman noticed Nadia and let her pick one too. As we walked down the hall to the radiology department some more people where there handing out large helium balloons. Amelie was given a panda and Nadia a jet. So the girls were excited before we even made it to our first appointment.

Amelie playing around while we wait on the hand team appointment.

Dr. Oishi came in the room with his nurses and a surgeon from Belgium who I think is training at TSRH.  He had Amelie play with some toys and then he felt for the bones in her hands. He showed us the x-rays and told us what he would like to do for her this time around. We agreed and his nurse returned to ask if we could be ready on January 2nd. We agreed and the hospital got everything set up.

We arrived at Scottish Rite at 7 am and went straight to the Day Surgery area. The nurse Anne led us over to our waiting area and told one of us to head downstairs and get Amelie signed in. Everything that followed was just like her first surgery. She even had the same anesthesiologist who came to speak with us in advance. They weighed her and checked all her other vitals and we tried to keep her busy until they were going to give her the “goofy juice.” Last time she had only been home with us about 6 weeks when she had surgery and didn’t speak English at all. This time she was quite hilarious once the relaxation kicked in.

This was shortly before surgery. We changed her into her gown and she was being silly with the Magna Doodle.

They came to get her and told us we could take a pager/buzzer and leave our cell number with them. We headed downstairs to the Crayon Cafe for breakfast. We both got gigantic omelets that were a whopping 2.50 each All the while we were receiving lots of love, prayers and encouragement via FB and text messages. About 90 minutes later they called and said that the surgeon was done and wanted to speak with us, so we went back to the day surgery area. He told us that her foot was really easy to do. Then he told us everything he did with her hand. They released her pinkie, cleaned up the banding to try and make it look “prettier” and put a temporary pin in her middle finger to try and fuse the two bones together.

She woke up in recovery and they brought her out, but she fell asleep again pretty quickly. We were surprised and relieved to see that she didn’t have a cast on her leg. Instead she has to wear an ace bandage on it for just five days. While waiting on meds and for her to be discharged, the PA reminded us about taking care of the cast. She also told us that because of the pin in her finger she will now have to wear the cast for five weeks instead of three. Then we return to have the pin “blown out” and see if the fuse worked. I am interested to see how they do that, but they did tell us that the key to it is for us parents to be calm while they blow it out. I am sure that will be it’s own blog post once we actually see what happens.

Being silly with Daddy while I sign documents and wait for her discharge.

Amelie did a great job and Texas Scottish Rite Hospital for Children is amazing! We are also thankful for all the love and prayers for our family.

(The base of the cake was real – I don’t know about the rest)

Last week we attended the “Treasure Street” event for Texas Scottish Rite’s 90th birthday. We love this hospital!! It’s completely astounding how much the staff there cares for the children and families! It’s also amazing that in 90 years they have never charged a patient for care. If you haven’t been reading our blog for long, go here and here to see why we have been so blessed and wanted to give back.

Darwin, Kaye, Paula, Roger, Me, Mike

Our group had so much fun! The party was in a giant air conditioned tent set up in the parking lot of the hospital. They had a cheese station, pasta station, salad station and taco station plus drinks. They had a very large silent auction area and we won a few items. The event was sold out and one of the employee’s said they were expecting 1400 people.

Lee Ann Womack was in concert after the birthday toast and cake cutting. She was great even though I knew exactly 1 of her songs. The best part was seeing Kaye so excited about seeing her in concert and having such a great time.

Cute shot of Kaye and Darwin watching the concert.

The entire night was classy and fun and we were so blessed to share it with people we love. I can’t wait to see how much money they raised once the online auction for big items closes!

Happy Birthday Texas Scottish Rite and thank you for all you have done for sweet Amelie!