Cleveland- Days 1-3

We are in Cleveland! Alyssa and I flew in on Sunday. Travel was non-eventful which was good and we spent the first night in the Ronald McDonald House. Monday morning we checked in to the Cleveland Clinic and things have been busy ever since!

Alyssa was great on the plane rides.

Right after getting to her room we got a visit from Daisy, the therapy dog! She was a nice way to welcome us!

Then she had her EEG leads placed. She was really good but she hated the smell of the glue! :) She looks AWESOME with her new hairdo! She is just glad that she doesn't have to have her head wrapped like she has in the past.

As soon as she was done with that, we headed up to meet Dr. Lachwanni. He was very nice and told us what the plan was for the week. PET scan, Ictal-spect, Neuropsych exam, and the continuous EEG. Then we will see where we are at.

They gave her this cute head band to hide her fun hair when she wants to. Bitty baby is dressed in her hospital gown too!

They tried to place an IV but it didn't go so well so we waited to try again in the morning. That was the worst part of the day. :( She was pretty nervous about it and had a rough time. She has never had to have an IV before so it was all new to her.

Monday night was a quiet night. They kept her meds. the same to get a baseline of how things look when she is on her meds. We worked on this cute banner to dress up her room while we watched a movie. It turned out so cute and really cheers up her room! She is getting comments on it by anyone that enters the room.

Last night was a typical night with Alyssa added to a typical night at the hospital. Which means that very little sleep was had. She had seizures and anytime I press the seizure button, at least two people come in to check on her. Then she had a blood draw at 5 AM and the usual vitals checks. We were both a little slow moving this morning. After waking up we had the IV placed. She was very anxious about it but luckily they got it placed the first time. We were both so happy to have that done! Then we headed down for her PET scan. She did so well! They had sedation scheduled if she needed it but she did awesome! She held still and they got the pictures that we needed. We'll get those results tomorrow. They also did an EKG as they have noticed a slightly irregular heart beat. They aren't worried about it and everything looked ok as far as we know.

The rest of the day was busy with fun things.

The art therapist came to visit. She decorated this fun mask (finished pictures to come)!

The therapist then helped her place EEG leads on Bitty Baby.

Aren't they the cutest pair? Alyssa likes having Bitty by her side during all of this!

The child life therapist then came in and helped her place an IV in a new bear that he gave her. He was so good with her and talked her through the whole process. She would have put one in Bitty but her plastic arms were too hard!

Soon after that the music therapist came in to play! It took Alyssa a little while to warm up but then she was laughing and smiling. She especially enjoyed the blues ballad that the therapist made up about all of her stuffed animals at home waiting for her! :)

Everyone has been great so far. They have kept her busy with crafts and all of the support staff have been really cute with her. It was good to see her smiling this afternoon.

Tonight the fun really begins. In order to do the Ictal-Spect test we need her to sleep during the day tomorrow. Someone has to be here with her to inject a dye into her IV as soon as she has a seizure. Then she has to be taken down to have a scan right after. The people that do this test are only here during the day, so we need her to sleep and have her regular seizures while they are here. They are also holding her meds tonight in hopes that we will get some good seizures going in the morning. So a slumber party it is! It should be interesting! I think that she will do better than I will. We are planning on games, crafts, movies, puzzles, anything that will keep her awake. It is going to be a LONG night!

I'm trying not to get discouraged. So far we know nothing more than we knew before we came. The EEG is showing seizure activity but is not showing any particular area or side of the frontal lobe. They keep telling me not to get discouraged yet and that we will find something. I know that I need to be patient. Things will work out how they are supposed to. I just want things to get better for Alyssa! :) Patience is a lesson that I am continuing to master! :) We'll get the PET results back tomorrow and hopefully get some good information with the Ictal-Spect.

Hoping for Answers Soon

The seizures have still not gone away. Two nights ago, Alyssa's first seizure of the night was intense. I could tell by watching her that she was in pain and although she can't communicate during them, she was moaning. When it was over she told me that her whole body was hurting during the seizure. She has never complained of this before. Last night the same thing happened and when the seizure was over she started crying and told me that she hates to sleep and just wishes it could be morning because when she sleeps it means that she will have seizures. My heart broke when she said this. I can't even imagine how hard this must be for her. It must be so horrible knowing that when you sleep you will be suffering!

Two weeks from today Alyssa and I will be at the Cleveland Clinic in their Epilepsy monitoring unit. We will be there a week and she will have about 4 tests done during our stay. I am just praying that we will get some answers and a new plan of attack. I feel good about our decision to take her there. She and I are both counting down until this trip. She will miss the second week of school, but school is going to be tough if we can't get her doing well. I know that we will find something that will help her. I just hope that it will be soon!

Summer Happenings Part 2

Make A Wish!

We have had such a wonderful time this summer with Jared's Make A Wish journey! What an incredible organization this is! It has been so magical and the people involved are just wonderful.

Early in the summer we were able to go to the Wishing Place so that Jared could declare his wish. There was a poster welcoming Jared and then the magic really began.

We were all able to make a wish in the wishing pond. (The pond was actually broken at the time, but we still wished into the stream.)

Then we went upstairs and Jared received a bag full of fun Make A Wish items. Then he got to use his key to open up the door into the wishing room where he got to make his wish and send it to the wishing wizard.

This part of the experience was so magical! We fist went around the room and each person there told Jared a wish that we had for him.

The wishing room was so cool. It was covered in translucent tiles that had lights under them and there was a wall water fountain in the room that had water running down both sides of it. Jared was in heaven! If there is water and cool lights in the same room then he can't help but be delighted! The lights then went out and he had to follow the tiles that lit up to place his wish in the correct place to be sent to the wizard. And then the real magic began! As soon as he placed his wish, the lights started changing and flashing and music began playing. He has the wishing magic and it would only work for him! He was in heaven and didn't want to leave the room!

And the best part. His wish was granted! He wished to go to Disney World and to go to space with mom. We are headed to Disney World in October! Everyone is so excited! He will have so much fun. I can't wait to see him experiencing Disney Magic!