The first few days in Cleveland were nice. We went to the Children's Museum and Alyssa had fun climbing the "Sting Ray pads" as she called them, and playing at the water table. The walk back to the RMDH was a little cold because she was soaking wet, but it was worth it! :)
Alyssa LOVES crafts. We spent the first weekend before she got sick doing crafts. Our room needed a Christmas tree so she made this one. There were even limbs that stuck out so that she could hang ornaments. She is so creative! I would have never thought of that!
We also made this cute felt banner. It was a kit similar to the one that we made when we came to Cleveland the first time. It really brightened the room.
And then she got sick and did a lot of this. The poor girl was so tired and was having so many seizures. The yellow blanket was made and sent to her by her good friend Bethany. Bethany goes by the nickname "B". The blanket is yellow, white and black and has little flowers and bees sewn on to it. It was a "bee" blanket make with love by "B"! Alyssa LOVES it, and had it wrapped around her constantly!
Aunt Erika arrived the evening that Alyssa was released from the hospital after the nasty stomach bug she had. She was exactly what Alyssa and I needed. A breath of fresh air and sunshine! It was such a blessing to have her with us. She cheered us both up and got us out of the house a little bit.
We went to the Botanical Gardens and visited with Santa, looked at wonderful ginger bread houses and got to help release butterflies! If you look closely on Alyssa's hand, you can see a butterfly perched there. It was great fun!
And then we went "ice skating" on plastic ice? We were expecting real ice so we were a little disappointed, but at least we didn't fall!
Erika came prepared with all kinds of crafts. We decorated candles, made shrink-a-dinks, made a Christmas wreath for our room, made bottle cap necklaces, decorated little trinket tins and decorated a kerchief for Alyssa.
We then discovered that Alyssa gives the best arm tickles ever! She and Erika were enjoying there snuggle time. The little life saver looking things on Alyssa's head are called feducials. They were placed before her MRI the Friday before her surgery and were used as a type of GPS system for the surgeon. She had to keep them on all weekend. She LOVED that! Ha Ha
Erika left right after Alyssa's first surgery. It was so nice having her there with me. I am so very grateful for her. It was a blessing to have her with us and so good of her to fly out and leave her kids and hubby behind to be with us!
The night before Alyssa's first surgery, she and Erika were dancing to Christmas music and dressing up with Alyssa's hats and Erika's scarf. We had just finished watching The Nutcracker on TV and so they dressed up like Drosselmeyer with a turban and eye patch. I wish that I had taken pictures because it was so funny! A few days after Alyssa's fist surgery we decided that if she had an eye patch, she would look just like Drosselmeyer. So, we made an eye patch out of black construction paper and took a picture to send to Erika!
Right after her 2nd surgery. Jeff bought her this stuffed bunny while she was in surgery. She was very agitated in the PICU when we got to her and this bunny seemed to calm her right down. It was super soft and she loved to stroke it with her left had. She didn't let go of him for days following surgery. The bunny has been named, "Brainy", because she got it while she was having brain surgery!
They hate to have to put EEGs on right after surgery, but because she was having so many seizures, they needed to see what was going on so one day after surgery they had to place all 24 new leads on her poor little scalp. She was so patient and endured them with dignity beyond her age.
I was so happy when she felt well enough to have me snuggle with her again!
The first time sitting without someone holding her!
Walking with Daddy. She wasn't very happy but she'll do anything for her Daddy! (Especially if he bribes her!)
Her amazing battle wound! Can you believe the size of those incisions!
Alyssa loved having art therapy with Meridith. Meridith and Tom, the Child Life Specialist, were the only adults that she would talk to at the hospital. They each got at least a couple of words! :) She was decorating clear ornaments with paint here.
My beautiful, strong, brave, sweet, girl!
I wasn't able to update as much as I would have liked at the hospital because Alyssa was always using my computer. Thank goodness for Netflix. She watched her favorite show, Good Luck Charlie, over and over again. Luckily there are two seasons with about 30 episodes in each, but we watched them all, I don't know how many times, during our stay in Cleveland. If it helped her get through this difficult experience, than I was more than willing to oblige! Luckily I don't mind watching it either!
Alyssa and Dr. Lachwanni, her Epileptologist. He is so kind and sweet with Alyssa. On the day that she was being discharged he brought her a strawberry milkshake, and a smoothie for me. As he was leaving he gave me the biggest hug and said that we were in his prayers and that he wasn't giving up yet. Such a good man!
Alyssa and Dr. Bingaman, her neurosurgeon. He was is nice and kind as well and always made us laugh. He is a gifted surgeon and I never once doubted that he would do all that he could to help Alyssa.
Santa came to the hospital on the last day that we were there. All of the kids that could leave the floor were able to come down to the lobby to greet him. He arrived in an old fire truck and had about six police cars escorting him with lights and sirens. He could have honestly been the real santa. He was amazing! He had many elves accompanying him and he stopped and visited with each child and then loaded them up with gifts. Alyssa's face just lit up as he showed up! It was so fun to watch her watching him! Alyssa came away with three stuffed animals and three Barbie Dolls! She could barely hold them all! Each child that I saw there deserved each and every gift they received! They are all heros! I hadn't seen Alyssa this happy in weeks! Thank you Santa and his many elves!
At last the time had come! Discharge! I was a little worried that it wasn't going to happen because she started running a fever the night before, but all of her tests came back looking ok and the fever was gone by morning so we got the ok to get out of there! Alyssa was holding back the tears, she was so happy to be leaving! She didn't stop smiling the whole way out of the hospital! These are some of the nurses and staff that work on the epilepsy monitoring unit. They are all wonderful and we are so grateful for the care, concern, and love that they showed us! We left them with a star signed by us, thanking them all for treating Alyssa like a super star!
We spent one last night at the Ronald McDonald House before heading home the next day. So many wonderful people had sent cards and gifts to Alyssa and then that evening she received another gift bag full of gifts from a friend of Erika who lives in Cleveland. Alyssa was so surprised and excited to open up each gift and they were perfectly chosen for her. I then had to figure out how to get all of these gifts of hers home! I ended up buying an old suitcase from a member of the church in Cleveland to get everything home.
I never felt alone in Cleveland. I contacted the Bishop of the ward in Cleveland when we arrived and we had several members bring us the sacrament each Sunday and they and their families were so kind and brought us several meals and gifts and cards to Alyssa. They even made several airport runs for us throughout the month and helped Jeff give her a blessing. That is one of the blessings of the church. You have immediate family no matter where you are in the world! It was a great comfort to know that there were people willing to help at any time!
We flew home the afternoon of December 23rd and made it just in time for Christmas. Thank goodness! Alyssa took this picture out the window on our flight home. It was gray and cloudy on the ground, but beautiful and clear up above the clouds. It was rather symbolic of this experience and every experience in this life. Things can be gray and dreary, but with the love of our Heavenly Father, we can rise above it all and experience joy and light and leave the gray below. We were headed home!
No comments:
Post a Comment