The Last Few Days

Wow. The last few days have been crazy. So many emotions. So many prayers. So many tears. So many blessings. Things haven't turned out quite like we were hoping they would. We were so encouraged and hopeful for the results of her surgery on Friday, so when things didn't quite turn out like we had hoped, we were so disappointed. But, we still have faith that all will be well!

Alyssa's surgery went well. There were no complications and the surgeon felt good about what he was able to resect. It was hard to see her in the PICU after. She was quite agitated and could only say "owe". She wasn't moving her right side at all but we knew that those were some temporary side effects. Once her pain was under control she was able to sleep pretty well and had a quiet night. I was thinking that things were looking good.

Alyssa had so many things attached to her head while the grids were in place. The electrodes came out of her head and were then attached to all of the monitors to record her seizure activity. She was so happy to get everything off of her head and it took three people to help her to the bathroom because of all of the hardware that came with her!

Early on Saturday morning she had a couple of small seizures. Later that afternoon she had more seizures. She couldn't talk. She couldn't use her right side and she was still seizing. It was definitely the low point of this experience. Jeff and I were at a loss. I don't even know how to put into words what we were feeling. Just extreme sorrow. Sorrow that our sweet girl has had to endure so much. Sorrow that our optimism the day before was no more. Sorrow that these seizures of hers are so relentless. After she went to sleep for the night I cried and Jeff cried. We just want so badly for things to have been successful. Saturday was a rough day.

The Drs. are just as disappointed as we are but they have not given up hope that things might still improve over time. Her seizures are tricky and the Drs. knew that and we knew that. The surgeon was able to remove the main hot point of the seizure activity but there was some outlying areas that were bleeding into the motor cortex. These couldn't be removed without causing permanent deficits, so we were hoping that by removing the main active area that it would be enough. Not so. The seizures are smaller, which is good, but they are still very active. At this point the doctors want to get her home and let her heal. We could still see some improvement, but it looks like they are not going to be going away. Hopefully they will at least become controllable with medication. That would at least be a step in the right direction.

Although we have not received the miracle of seizure freedom, we have seen miracles. On Saturday night she still couldn't talk or move that right side much. So many people fasted and prayed for her on Sunday and we could feel the comfort of our Heavenly Father in Alyssa's room that day. Angels were present and we were calmer and more peaceful. Alyssa was using an alphabet chart to spell out a word for us that we couldn't figure out. After figuring out what it was, Jeff left the room to get something. As soon as he walked out Alyssa all of a sudden said the word that she was spelling out for us. Then she tried another word, and another word. She had found her voice! I can't tell you how good it was to hear her sweet voice! We decided to surprise Jeff and as soon as he walked in the room Alyssa said "Hi, Daddy". I wish that I had my camera out because the look on his face was priceless. It was complete shock and I thought for a second that he was going to pass out! I could see in Alyssa's face how happy and relieved she was to be able to talk. We were all crying. This time with joy! She isn't talking like normal yet. It doesn't come as naturally and sometimes she has to think a minute before she finds the right word, but it will come. She doesn't like to talk at the hospital any way so I am sure that getting her home and fighting with her brothers will get things improving really quickly! :)

The other miracle that we saw on Sunday was that she was able to start moving her right leg and arm. She is doing really well with her leg strength and we have her up and walking a little bit each day. She doesn't like doing it, but it is getting easier each time. Her right arm is the slowest to come back. She is gripping well but the strength in her upper arm and shoulders is just not there yet. She has tried painting and coloring a little bit, but became very frustrated. She uses her left hand to pick up her right arm and put it where she wants it. She'll get it back, but it will take some time. They were originally recommending inpatient rehab for her, but she is making enough progress that we are going to stick with outpatient rehab when we get back home. Mentally and emotionally she just needs to get home. Being transferred to another hospital would be devastating for her.

Jeff ended up staying two extra days with us. It was good for all of us to have him here when there were still so many unknowns. Once we got a plan in place to get her home, he was able to get back home to the boys. He flew home on Tuesday and Alyssa will be released from the hospital on Thursday and she and I will be flying home on Friday. Just in time for Christmas! We are both so happy to have an end in sight to this journey!

Alyssa has been pretty blue the last couple of days. She is very quiet and tears up often. I know that she is feeling discouraged over how she can't use her body as well as she used to. We keep telling her that it will come, but I can't imagine how frustrating that must be. She hasn't expressed it but I am sure that she is also feeling discouraged with the continual seizures. This has been such a hard thing for her to do and it is so frustrating to see that all of the pain and sacrifice hasn't yielded the results we so hoped for. I don't regret that we tried. Jeff and I both felt good about this decision and it has felt right being here, but it never was a guaranteed solution. We just felt like it would give Alyssa the best opportunity to live life seizure free. It will be hard going home with seizures. But I still have faith that Heavenly Father knows what is best for Alyssa and our family. So, we will go home, grateful for all of the many blessings that we have and continue to pray for the strength to continue down whatever path Heavenly Father feels is best for us. Alyssa is beautiful! Everyone that comes into her room comments on how beautiful she is. You don't even notice her bald little head and the huge incisions on her scalp. Her spirit radiates from her face and eyes and she is truly enchanting. I don't know why she has to have these challenges in this life time but I know, without a doubt, that she is strong enough to handle them!

The Plan

As I am typing this Alyssa is in surgery. Her second neurosurgery in five days. Wow is she a trooper! We are feeling very hopeful and optimistic that all of this is going to be worth it. Things have moved quickly and this week we were very glad that her seizures are rather relentless because we were able to get information quickly. So, she had her grids and depth electrodes implanted on Monday. After a night in the PICU she was moved to the epilepsy monitoring unit and they began recording. Her seizures were very cooperative and over the last few days they have recorded probably close to 30+ seizures.

Yesterday they began doing neuro-stimulation to continue mapping out her brain. It was a long process and she was so tired but we got the information we needed. The stimulation process was very interesting. (I don't know if Alyssa thought of it that way. She said it felt like one long seiure:) Several doctors sat in her room for about 4 hours and they would send an electric stimulation to the different areas of her brain that had the grids on them. The would stimulate an area and then see how she reacted. They would stimulate one area that would cause her middle finger to move. They would stimulate another area and nothing would react. They wanted to know which parts of her brain controlled which parts of the body. I was once again in awe of the miracle the human body is! It is truly miraculous! The process that takes place to make every single movement in our bodies happen is incredible!

Once that was finished we waited in anticipation to see what the doctors would recommend. And the news is great! It almost seems too good to be true! They have determined that her seizures have a very clear focal point which is what we needed. If she had several areas in her brain that had seizure activity, then things would be much more difficult. Her seizure focal point is in the left, frontal lobe on the medial side. They were worried that it would be too close or within the primary motor area. If this was true then removal of any brain tissue would cause permanent deficits. The brain mapping showed us that her focal point is just in front of the primary motor area in what is called the supplemental motor area (SMA). This area helps to initiate movement and luckily there is an SMA on both sides of the brain. This means that they can remove some or all of the SMA and after some time, the other side of the brain would take over. So, they are going resect part of Alyssa's SMA. They are giving it a 70-80% chance of her becoming seizure free! This is about as good as it gets!

Now for the potential complications. There are of course the normal complications that come from anesthesia and surgery, but the biggest risk of complication is what is called an SMA syndrome. There is a good chance that she could have some weakness in her right side as well as be mute for a short time. This could last from 2 hours to 2 months, but it is always temporary. If she has the full blown SMA syndrome then she will probably need some rehab for a short time, but because they are not planning on removing the entire SMA, they don't think that hers will be that severe. The neurosurgeon talked to Alyssa and told her that this was a possibility and so she knows about it, but we are praying that any of these complications will be minimal and very short lived.

So that is where we are at! We are so grateful that we have hope to rid her of these horrible seizures! It has been so hard to see her hurting, but we are praying that if all goes well, it will all be worth it! Alyssa has been so strong. All of the leads coming out of her head were hooked to heavy cables and monitors. I can't even imagine how heavy it must have felt. She is so glad to be getting rid of them! But mostly, she just wants to go home. She told me last night that usually when she says that she can't wait for Christmas, that she really can because she doesn't want it all to be over. But, this year, she really can't wait for Christmas, because that means that we will be home! Last night she had seven seizures in the first 90 minutes of sleep. As I was trying to help her last night I couldn't help but wonder if this would be the last night of seizures for my pretty girl. Oh how I pray that this will be true! Home for Christmas and seizure freedom would be the best Christmas present we could ever dream of!

Cleveland Week 2- Blessings

Alyssa and Santa at the Cleveland Botanical Gardens

Blessings come in many forms. I have seen so many blessings in my life and I know, without a doubt, that my Heavenly Father knows me and my family. He knows our struggles, he knows our joys, and he always knows when a little blessing will remind me of that. This week has been full of blessings.

1. Alyssa getting sick last week. This is an odd thing to see as a blessing, but it was. Her seizures were so bad. I think that it reminded me and her, that this was the reason why we are here. It is not right for a child to be afraid to sleep, take a bath, or walk. Alyssa was saying every night before this that she was so scared. After being sick, she no longer said that. I know that she was, but I think that she was just so ready to see if her seizures could be helped, that she didn't care anymore.

2. My sister, Erika, coming out. I am so grateful for her leaving her husband and kids behind to come spend some time with us. Alyssa and I were both feeling a little low after she was sick and Erika was the perfect medicine! She came prepared with fun crafts and games and her cheerful personality was just what the Dr. ordered for both of us. We had so much fun with her and we had a nice weekend playing with her. She has a friend that lives here as well and she was kind enough to take us all out into the country for a couple of hours on Friday. It was a nice change of scenery and it was nice to see the beautiful country around Cleveland. Thank you Maria!

Alyssa and Aunt Erika ice-skating on plastic ice?

3. Erika was here with me when I told Alyssa about her hair being shaved. Alyssa took it amazingly well and she and Erika and I tried on all of the hats that people have sent her. I am still amazed at how well Alyssa took the news. Once again, I think that being sick made her more willing to do anything to help.

4. All of the cards and packages that have been sent to Alyssa! There have been so many people who have taken the time to send cards, hats, blankets, and emails to show their love for my pretty girl. She has loved each and every one!

5. The LDS ward here in Cleveland. They have been so sweet and supportive. They have done airport pick ups, brought us the sacrament, brought a nice meal and gift for Alyssa, and have just kept tabs on us and are so willing to do anything that they can to help. That is one of the most wonderful things about the gospel. No matter where you go you have family! It is so comforting to know that we are never alone!

6. The anesthesiologist for Alyssa's surgery. She was incredible. So kind and patient with Alyssa. When we took her back to the OR the plan was to do a mask sedation. Once we got back there thought, Alyssa really couldn't handle the mask and was getting worried. Some of the residents that were there were kind of pushing and hurrying, but this Dr. got everyone to slow down and was so patient with Alyssa as they put an IV in. Alyssa was getting scared, but this Dr. took the time to make sure that she knew that they were going to do anything they could to help her. Alyssa fell asleep calmly, which is just what we wanted. This Dr. normally works on the cardiac cases, but for some reason she was working on Alyssa's case this day. I don't think that it was coincidence. She was a blessing and I am so grateful that she made Alyssa's experience as good as it could be.

7. The doctor's and staff at the hospital. They are incredible and I know that we are at the right place.

8. The Ronald McDonald House. It is such a nice house and has made the stay so much more pleasant. The meals provided by so many people have been so appreciated, and it is nice to have such a nice place to have as home base. Thank you Ronald McDonald House!

9. Family, neighbors, and friends at home who are helping with my Tyler and my Jared. It is so hard to be away from them for so long, but I know that they are being well taken care of. There are so many people that I can call who would drop anything to help. We couldn't do it without their help.

10. My amazing husband! He is coming tonight and Alyssa and I are so ready to have him here with us for a few days. He has manned things at home and has done such an incredible job at home with the boys. What would I do without my partner in crime? I love him so much and am so grateful that he will be here soon!

11. All of the many prayers that have been said on our behalf. I have felt such an amazing sense of peace and Alyssa has been remarkably calm though all of this as well. Prayers are answered! Thank you!

12. My Alyssa is such a blessing. She has amazed me with her ability to handle all of this. I don't even know how to explain the strength that I see in her. She is so beautiful inside and out and her spirit radiates from her! How I wish that I could take all of this away from her! I can't even imagine the pain and fear that she has felt, but she handles it with such strength and grace. She is very quiet right now. She tends to kind of shut down when she is in the hospital, plus she just doesn't feel well. I can't wait until she is feeling well enough to start singing again. I love hearing her beautiful, sweet, pure voice!

I will not deny that this is very difficult. I knew that it would be, but I don't think that you are ever prepared to see your child hurt and suffer. Alyssa is now back in the epilepsy monitoring unit and she has already had 3 seizures since they started her monitoring. She is so tired and the seizures make it hard for her to sleep, but right now we want those seizures to come so we can get the information we need and hopefully have a plan and make it home in time for Christmas. They changed her bandage this afternoon. The incision is huge! She is going to have quite the battle scar to show off! It was the first time that I saw her beautiful head, bald. She was born with tons of dark, black hair and so even as a baby I never saw her bald. She was stunning! Her beautiful face and her bright blue eyes are astounding, but it is her spirit that radiates from her face that is most beautiful. Why I have been chosen to be the mother of these beautiful children, I will never understand as they are teaching me more than I will ever be able to teach them. The blessings continue to come and I am so grateful for each and every one.

Cleveland week 1

The good:

-The flight was great. Smooth sailing and we got into the Ronald McDonald House that first night.

-Alyssa did pretty well for her functional MRI. It was a hard one. It was long and she was supposed to hold as still as possible and then do different tasks that they asked her to do during the scan. She was very glad when it was over.

-Friday and Saturday were very nice. We went to the Children's Museum on Friday and spent all day Saturday working on crafts. She was in pretty good spirits.

The bad:

-Sunday morning she woke up with her tummy hurting. She got worse as the day progressed and started vomiting that evening.

-Monday morning she had a test early. I managed to get her there but while we were waiting in the lobby, she had a big seizure. The drs. and I decided that she wasn't up for the test that morning and I took her back to the house and put her back in bed. She was had quite a few seizures that day and when she threw up her meds. that evening I decided it was time to get her looked at. With how tired she was and with no food or medicine I knew that it would be a bad night for seizures. She was scared to even close her eyes or take a bath because she didn't want to have any more seizures.

-10 pm Monday night I called the shuttle and they took us to the ER. She had a seizure just walking a few steps to the shuttle. It was definitely time for some intervention. I guess this is where my naivete shows. I thought that patients laying on beds in hallways just happened on tv. Apparently not! The ER was busy and there were no rooms so Alyssa was placed on a bed in a hallway. She was feeling so crummy that I don't think that she even noticed where she was and didn't even fight us when they placed an IV. I will never complain again about going to the ER at AF hospital or Primary Childrens. Being in an inner city ER in the middle of the night was quite eye opening. I have seen enough older men and women walking around in hospital gowns to last me a life time! The people who work in the ER are amazing! That would be such a hard job.

They got Alyssa admitted and we got settled in her room at about 2 am. She was put back in the epilepsy monitoring unit which was nice because it is familiar. They have been giving her some anti-nausea medicine and fluids and she is doing quite a bit better tonight.

-She had a big seizure at an appointment this morning. They are giving her a third med tonight to hopefully get her seizures calmed down again.

-The surgeon has decided that we are going to reschedule her surgery to Monday. We want her back to normal and fully recovered before surgery so this will give her the weekend to perk up.

I'm a little concerned because we just have to be back home for Christmas and so pushing it back is making me nervous, but I don't want her to have more to deal with than she already has. I just keep praying that things will work out as they are supposed to and I know that we are where we need to be. I am so grateful for everyone who is praying and fasting for us. I can feel them and they have kept me calm during the last couple of days. We still have a long way to go, but somehow it will all come together.

The BEST- My sister Erika is coming tomorrow to spend the rest of the week with us! She couldn't be coming at a better time! Alyssa and I are looking forward to seeing her and I know that she will be good medicine for both of us!

Four Years!

Jared has had his amazing angel kidney for four years today! Four years! I can't believe it! What a miracle he is. I am so very grateful for his donor and I think of him and his family each and every day. They have given us our sweet, spunky, funny, happy boy and I will always be so grateful for their gift. We usually try to do something to celebrate the day, but Alyssa and I are in Cleveland and the boys are at home. I wish that I could hug him and kiss him and pat that awesome kidney of his, but talking to him on the phone had to suffice this year. I am so very thankful for all of the amazing doctors, nurses, dietitians, social workers, child life specialists, therapists and teachers who have been an integral part of our family since Jared was born. I couldn't ask for a better team. Thank you!

I Love You My Jared!