Hunting for Answers

Her room is full of art work that we did trying to stay awake all Tuesday night.

Eating breakfast after being up all night. We were trying so hard to keep her awake that last hour.

The last few days have been hard ones. With sleep deprivation the biggest issue. Tuesday night we needed to keep Alyssa awake all night so that she would sleep during the day for her Ictal-spect test. Amazingly, we succeeded. It was a LONG night but we were able to keep her awake until 8:15 Wednesday morning. We did crafts, played many games of Trouble (she beat me 7 out of 8 games! :)) and played a lot of Plants vs. Zombies on the DS. The last two hours were the toughest but we walked and walked the halls and did tickle monster the last 20 mins. When the nurse was all ready with the injection we told Alyssa that she could go a head and go to sleep. 9 seconds later she had a seizure and she set the new record for having the quickest Ictal-Spect test ever! It happened so fast that the nurse doing the test had to take a few breaths afterwards because she wasn't expecting it to happen so quickly! Once she was able to sleep she was out. She hardly remembers going down for the scan. I was worried that she would have a seizure during the scan but she had one right before it and then again right after it. She did a great job. After the scan was done she slept for awhile but was having a lot of seizures so they gave her some Ativan to calm her seizures. She was a little out of it for the rest of the day and pretty emotional.

I was so ready for a good night of sleep last night. Unfortunately that was not to be. She was having little seizures all evening and then after turning out the light for the night she was having a seizure every 5 minutes or so, just as she would start to doze off. After an 1 1/2 hours of this they decided to give her Ativan again. It helped stop the seizures, but unfortunately it wouldn't allow her to sleep. The poor girl was so miserable. She was a little bit zoned and had a period of seeing double. She would cry off and on and really wanted to just go home. I felt so helpless. We were both crying in frustration at one point. It was a long night but she finally fell asleep around 4 am.

At 10 am she went down for the final scan of her SPECT. After returning to the room we visited with the nurse practitioner, Molly. Molly is WONDERFUL and has a way of lifting your spirits and keeping your hopes up. Unfortunately, the scans are not providing us with the information that we need. Her seizures are coming from the frontal lobe in the midpoint, but they are coming from deep down in the brain and we haven't been able to tell from which side they are coming. They decided to go ahead and do a MEG scan as well. This scan is the most advanced technology that there is at looking at the brain. So we spent the afternoon having this scan done. Luckily there were no pokes involved and the people running the test were fantastic. Alyssa did a wonderful job once again at holding still and sleeping through the test. She even had a couple of seizures which will be good information.

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!

Summer Happenings Part 1

Wow is this summer flying by! We have been busy. I have so much to catch up on!

Utah Summer Games

Tyler competed in the Utah Summer Games in Taekwondo in June. He made the Demo Team this spring at his studio and they went down to compete. He also competed individually in Forms and Sparring. It was an overnight trip so he and I spent two whole days and one night by ourselves. It was so nice to spend time with him where I wasn't distracted by his siblings. We spent a night in a hotel and had fun getting to know the other kids and their parents in the group. We've decided that it is going to be a yearly tradition!

He was so nervous about competing but he did an awesome job! He came home with 3 gold medals! I was so proud of him. It was hard and he was emotionally spent by the time the weekend was over, but he did it! He had so much fun and I am so glad that he has discovered this love of Taekwondo. It has been so good for him to have this in his life.

The Little Mermaid with my little mermaid!

Two days after the Summer Games, Tyler and Jeff were off to scout camp for the week. And Alyssa and I were ready for some fun! My friend Julie, (who is Alyssa's best friend Nikki's Mom) and I decided to surprise the girls and take them on a little trip. We took them to St. George to see The Little Mermaid at the Tuachann theatre. We drove down Wednesday morning, watched the show, spent the night at Julie's parent's condo, and then drove home the next day. It was a long two days but the girls had so much fun! I made matching skirts for the girls to wear and they both had their dolls and were so cute. The play was AMAZING! The special effects, the costumes, the music, everything was so well done. We can't wait to do it again next summer! (Thanks Aunt Rachel for watching Jared for me! Sorry about the lack of sleep that night! :))

I was a little worried about this trip because Alyssa's seizures have still been so bad. She is just so tired and between the sleep deprivation, seizure activity, and the meds that she is on, her little personality has been really affected. She did pretty well, but the early evening was really rough. We had just gotten to the theatre for dinner and she and Nikki got into a little argument. (They are more like sisters so this is not uncommon.) I think that the excitement and the anticipation were just more than Alyssa's little system could handle and she had a complete meltdown. No matter what I tried, I couldn't get her to calm down and she couldn't figure out how to calm herself down either. She was in a rough place and it was difficult because she was in a public place as well. I didn't care what people were thinking because they had know idea what Alyssa has been going through, but I think that it added to her stress and escalated the problem. I didn't know what to do and I didn't want her to miss the play because she had been looking forward to this night for months! Finally I took her off to a quiet place and I just held her and asked her if she would like me to say a prayer for us. She nodded and we prayed. A few minutes later she was calm and enjoyed the rest of the evening.

I am so grateful for a loving Heavenly Father who answers prayers! My heart was breaking to see her struggle so much and I know that she was scared. I had tried everything that I could think of to help her, but she needed more than I could give. Prayer is a miraculous gift! I felt so helpless, but I knew that with Heavenly Father's help, that we could get through this. Heavenly Father knows Alyssa and knows what she is going through and our prayer was answered. That was the highlight of the trip for me.

Random Thoughts

1. You know when your 5 year old has spent too much time doing all things medical when you have this conversation....

Me: "Hi Jared, what are you doing?"

Jared: "I'm doing my trucks labs. They all need their labs."

He does my labs quite often, but his trucks labs are a new thing! :)

2. Alyssa has already had three seizures in her first 15 minutes of sleeping tonight. She had one today when she was out running around. Until now, all of her daytime seizures have been when she has been sitting down.

She just told me tonight that one of the things that she hates about seizures is that she can't remember what she was thinking about after she has one.

3. I know that my Heavenly Father knows me and loves me. Today he sent me a little reminder of that. A tender mercy. Today during sacrament meeting (a part of our church meeting), a neighbor who hasn't seen our kids in a while was sitting behind us. After Tyler was done passing the sacrament he came to sit with us and when he sat down he gave Jared the sweetest smile. My neighbor tapped me on the shoulder a few minutes later and with tears in her eyes told me that the look of love that Tyler had given his little brother when he had sat down was witnessed by her and she had immediately teared up. She told me that I must be doing something right in raising my children.

The last few weeks have been difficult at home. My children all require a lot of time and energy and it has been hard trying to keep them all happy. Alyssa's personality has really been affected by this last medication and so everyone has been rather grumpy and on edge. There are many times when I have felt like I am just not doing a good enough job at teaching my children to love each other. I have felt so emotionally and physically exhausted and it is all I can do to just get through the day. There are so many things that I feel like I should be teaching and doing with my children. I am trying so hard to keep our home peaceful and happy and I often feel like I am failing.

This little comment by my neighbor reminded me that Heavenly Father does know me and knows my current situation and even my insecurities. She said exactly what I needed to hear and I know that it was no coincidence that she was sitting right behind me today. Her comment helped me to recognize that despite the chaos that we have been in recently, we are a family who loves each other. That even though my children fight and argue with the best of them, that they do truly love each other and they know that we love them. And that, is one of the most important thing that I can teach them. I am so grateful for a loving Heavenly Father who knows just what I need to hear to keep me going, and for people around me who are his angels that lift me up.

Updates on Alyssa

It has taken me awhile to get to updating. I am tired. We are all tired. Alyssa is still not doing well even after starting the new med. She has only had five days in the last month that she has not had seizures. There are many nights when she is having 8 or more seizures and she is starting to have more during the day as well. She was started on Keppra a month ago and the only change that we saw was in her behavior. This medicine has made her mean and grumpy, which is so not Alyssa. There has been absolutely no change in the seizure activity and so we are weening her off of this one. To say that we are a bit discouraged is an understatement. We are so tired and Alyssa is just fed up with all of it.

We were finally able to see her neurologist today. Her EEG results were abnormal and showed that her frontal lobe could be where the seizures are originating from. Unfortunately her doctor said that frontal lobe seizures are notoriously known for being difficult to treat. Not what we wanted to hear. They also say that if 3 medications are unsuccessful, then generally no medications will be effective and the seizures are considered intractable (untreatable). So, the plan. We are going to start another med tonight called Zonegran. We'll see how she does over the next month. Hopefully we will see improvement with few side effects. If we don't, then she will go in for an extended EEG. She will be inpatient for several days while they monitor her for a longer period of time so that we can hopefully get a better picture of where the seizures are coming from. Depending on those results, we will possibly be looking into epilepsy surgery to remove the piece of her brain that is causing the seizures.

I have been researching like crazy and though surgery sounds terrifying and drastic, it can also be extremely successful with very few complications. Many patients following surgery are completely seizure free or the seizures are significantly improved. The testing to even qualify for surgery is very intense, so we will see what happens. Hopefully this new medicine will help and we won't have to worry about it! :) I just want my Alyssa back. I hate seeing her like this.

So time will tell us which path to go. Jeff and I are constantly praying for help in making these decisions. I know that Heavenly Father will help us. We just have to trust in him and in his time frame. We are so tired. I am feeling a little bit (a lot) overwhelmed with all of my children's needs. I'm tired of living in survival mode. It seems like we have been living like this for years now and I am worn out. But, we all keep trucking along.

There have been some wonderful things happening as well! Jared was nominated to be a wish kid and just this week we were able to go to the Make A Wish wishing house so that he could make his wish. It was so wonderful and just magical! He was so delighted with the whole process and it was so fun to watch him as he participated in the wish magic! He wants to go to Disney World so hopefully we will be heading that way in a couple of months. This trip is coming at a time when our family could really use it. I am so grateful for the amazing people in this world who do so much good for others. All five of us are excited! As soon as I get the pictures of the night I'll write more about this magical night. Thank goodness for the little tender mercies that keep us going.