Faith

I have always known, but have better come to understand just recently, how important it is to truly place our faith in Heavenly Father's plan. There are so many times when I feel inadequate, tired, frustrated, lonely, and overwhelmed and I wonder if I can keep on going. The only thing that keeps me going is the fact that I know, without a doubt, that Heavenly Father will not give me more than I can handle and that he is always there to help me. Sometimes I question that "give me more than I can handle" part, but I truly believe that somehow everything will work out.

During our layover last Saturday as Alyssa and I were coming home from Cleveland, I started noticing what looked like insect bites on my arms. They were itchy but I didn't think much about them. On Sunday I had large patches of what kind of looked like hives on my stomach, back, arms, and neck. They were so itchy and seemed to be getting worse. A neighbor thought that they could be my body's reaction to the stress of the week. By Monday they were bigger and were resembling what looked like bulls eyes. At this point I was starting to get a little worried and since it was Labor Day I decided to go to the insta-care. The Dr. there thought it looked like a rash that you get when you have Lyme's disease. Lyme's Disease! I don't ever remember being bitten by a tick! But that is what I have. I know several people who have lime disease and they have had an extremely difficult time, so I started to panic a little. There is know way that I can get seriously ill! There are too many in my home that need my care. What would we do?

I came home and spent hours researching and there is no doubt that this is what I have. My rash looks exactly like it and it is very unique to Lyme. They say that less than 50% of people with Lyme's Disease remember being bit by a tick. But luckily there is treatment to hopefully stop the progression. I am now on a high dose of an antibiotic for the next three weeks. The statistics are very positive if the disease is caught and treated correctly in its early stages, so hopefully this yucky rash will soon be a memory, but it is very nerve racking, wondering if I will start seeing other symptoms. When I saw my family doctor today, this was the first time that he has seen Lyme's Disease. And I was the lucky one to show it to him! :)

I feel like it is a blessing that I did manifest with the rash, otherwise I could have gotten sick and we would have no idea what was causing it. So, I am going to count my blessings and pray that we have caught it soon enough and that it will respond to medication. It has been a rough few days as this has been added to our already very long list of worries, but then I remember the promises that Heavenly Father has given me, and peace is found. The future is always uncertain, but with faith, anything can be overcome.

Home Sweet Home

The Girls!

We are home. What a week it was. It was a harder week than I thought it would be. Both physically and emotionally. Alyssa was amazing. She was so brave and so cooperative and patient with everything that she had to do. We got a lot done and I am grateful that we were able to take her there. Unfortunately, we don’t have very many answers yet.

The nurse practitioner, Molly, put it this way. The spot is there and we know that it is there, but it is just so deep into the brain tissue that we can’t quite find it yet. The PET scan showed more activity on the right side of the frontal lobe. The SPECT scan showed more activity on the left side. They think that the SPECT is more accurate, especially since her seizures manifest themselves primarily on the right side, but we just don’t have enough information. It will take several weeks to get the results back from the MEG scan and hopefully that will give us more information.

Alyssa was so tired. This is what she did most of the time the last few days in the hospital.

Getting the leads out of her hair after being glued in for a week. Not a fun process! Cleaning it afterwards was even more fun!

They also want us to get a genetic test done to see if she has a genetic form of frontal lobe epilepsy called, Autosomal dominant nocturnal frontal lobe epilepsy. Even though there is no history of this on either side of our families, they still think that this could be a possibility. They said that this would be good if she had this because it generally responds well to medication (which we haven’t seen so far), and doesn’t usually get worse. However she would have a 1 in 2 chance of passing it on to her children. If this comes back positive than she would not be a candidate for surgery. We would just keep trying medication. If the test comes back negative then we will hope for more answers from the MEG. Her doctor in Cleveland will then present her case in the patient management conference, probably in October. This is the meeting where all of the great minds of epilepsy at the Cleveland Clinic, doctors, nurse practitioners, surgeons, experts on all of the scans and tests, come together to discuss each case and make recommendations for treatment. Her case is not clear cut. If there is a chance for surgery, then we would have to go back for more invasive testing. Grid placements and depth electrodes, which would require surgery. Not easy decisions to make.

The N.P, Molly, told me as we were leaving that she feels like she will see us again. Alyssa enchanted them all and they want so badly to help her. She tugged at everyones heart strings as she was wheeled around that hospital with Bitty Baby by her side throughout it all. She was so strong and patient. She has such a bright little spirit. Molly said that maybe they won't be able to help her in 2011, but maybe in 2013 or 2015 they would have the technology to help. Once she is a patient at the Cleveland Clinic, she will always be a patient there, and they will never stop looking for answers. What amazing people.

Some of the great minds helping out Alyssa.

Alyssa's discharge nurse and her nurse practitioner, Molly. We LOVE Molly! She was wonderful and we hope that we can see her again!

In the mean time, they changed her meds around a little bit. She is still on the same ones, but the amounts at different times of the day are different. They also made some suggestions of other medications to try. We will see her neurologist here next week and talk to him about everything. So far the changes haven’t made any difference. Except that she is having more seizures during the day. :)

I have to admit that I am disappointed. I was really hoping for more concrete answers but I know that we have done everything possible to find answers and solutions. Now I just have to be patient. It has been hard to come back home to the same place that we started. I guess it was foolish of me to think that there would be a change so quickly. I think that we were all just holding on for this trip and now that it is over and we still don’t know much, it is hard.

Alyssa is struggling. She doesn’t want to go to school and is very anxious because she is having more seizures during the day. She doesn’t want to go to sleep because she hates the seizures that come. The poor girl is just tired of the whole situation. We are looking at other ways of helping her deal with life with seizures. Maybe a seizure dog? Jared’s awesome child life specialist has offered to come and talk to Alyssa’s class about seizures. She is looking forward to that and hopefully that will help with some of the school anxiety. So forward we go!

Things will work out. I know that they will. Heavenly Father knows Alyssa and I just have to have faith in his timing of things. No matter how much I wish that I could just snap my fingers and make things better, I can’t. I will do everything in my power to help, but then I have to turn it all over to him as I know that he knows what is best for Alyssa and for our family. Faith is what it comes down to. I just have to learn to let go!

We had a few hours Friday afternoon after she was discharged to do something. The only thing that Alyssa wanted to do was see Lake Erie. She was talking about the great lakes in school and wanted to show some pictures to her class. She didn't care that her hair was a mess and that she was exhausted. She just wanted to see the lake.

1 week inpatient, multiple fancy tests and scans done = $300,000 (give or take a $100,00)

Two cab rides throughout unfamiliar city, hoping the cab driver can find us a beach = $40

Building sand castles in Lake Erie= Priceless!

So Beautiful!

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.