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.

EEG Done

Beautiful even with her stylish hat!

Alyssa's 24 hour EEG went well. We left home Saturday at 11 AM and arrived home on Sunday at 11 AM. My biggest concern was that even though Alyssa has been having multiple seizures every night for the past month, that she wouldn't have a single one for the test. I found myself praying for seizures that night and her little brain cooperated with at least 5 seizures that I was aware of. How crazy is it that I was praying for my daughter to have seizures? I guess that is what happens when you are desperate for some relief! :)

Alyssa handled the test well. She was a trooper with all of the leads on and her lovely head wear. ;) The first few hours were a little rough because it was on so tightly that it was giving her a massive head ache. After readjusting things a bit, the headache was resolved and then she didn't complain about it at all. Her favorite part was her room service meals. She LOVED being able to order anything that she wanted at any time. She particularly enjoyed the strawberry milkshake. The two of us watched movies, worked on a few crafts, and played some games. But most importantly, we snuggled as much as we wanted! The hospital isn't always where you want to be, but the snuggle time is definitely a perk. I have had snuggle time at the hospital with all three of my children now and that is absolutely the best part of being there!

Hopefully we will get results and a plan in a few days. We are ready. We are tired and ready for all of us to have an uninterrupted night of sleep. Oh what a dream that would be!

Alyssa got to visit with a therapy dog. He completely relaxed and would have slept all day on Alyssa's lap if he could have! :) He was so sweet!

An Easter Story

Alyssa made an Easter egg hunt for Tyler and Jared a week before Easter. She filled the eggs with candy and then planned on having the candy in Jared's eggs for herself because Jared doesn't eat candy. Jared LOVES hunting for eggs. He could care less about what is inside the eggs. He just enjoys the hunting. After finding all of the eggs Alyssa asked Jared if she could open his eggs. He quickly replied, "NO! I don' t want the eggs to hatch yet!"

Though discouraged, Alyssa tried to find a way to get to her candy! She proceeded to make little paper chicks that she sneakily snuck into Jared's eggs, than came down the stairs and said, "Jared, I hear some cracking sounds coming from your room! Let's go see what it is!"

The chicks then hatched from the eggs, which made Jared happy, and Alyssa succeeded in retrieving her candy. Both kids were happy! Way to be creative Alyssa!

Updates

I hate seizures. They are pesky, annoying, unrelenting, nerve-racking, exhausting, and so many other words. Alyssa has been sleeping with me every night for the last month. Her seizures are getting worse and worse. She now has generally 4 or more seizures every night. Most of them are still localized to her right arm, but some have become generalized and are affecting her whole body. She used to only have them in the early morning hours. Now she is having them at any time of night. When she is going to sleep, when she is sleeping, and when she is waking up. She even had one at school this week. Luckily it was one of her smaller ones, but she was pretty shook up about it. It was the first one that she has had outside of the home setting. It was very unsettling for Jeff and I as well, because we won't necessarily be there every time they happen. The poor girl is exhausted and getting to school late every day and we have had to take a break from ballet for awhile because she is just too tired. Jeff is sleeping with Jared every night, and Alyssa is with me. We are surviving but we are all exhausted! Like I said, I hate seizures.

We are obviously trying to get them under control again. We saw the neurologist a month ago and we decided that we wanted to have a 24 hour EEG done before we start a second medication. We just really want to have a good idea of what is really going on before we start another med. The problem with this plan is that it took several weeks to get it pre-approved and then 5 weeks until the next available appointment. Meanwhile, the seizures are escalating. After her day time seizure earlier this week I called again and begged to get her test moved up. Thankfully they got it moved up two weeks to tomorrow. Yeah! Alyssa and I both did the happy dance when we got the news! So tomorrow we head to the hospital for her 24 hour EEG. We are going to make it a girls' night. Play games, do crafts, watch girl movies, all with monitors stuck to Alyssa's head. When the nurse called to confirm her appointment she asked if I had been to the children's hospital before. I had to laugh. Yes, I am slightly familiar with the hospital. :)

So, we have been in survival mode once again. Jeff and I seem to be getting good at riding through times like this, but we are tired. I am so grateful that he can still get us all to laugh even when we are a bit overwhelmed with life.

On the good news front, Jared is doing awesome! He has had his usual illnesses during the winter season, but he has handled them pretty well and was only in the ER once for fluids. No inpatient stays this winter. Yeah! He is happy most of the time and talking non stop. I just wish we could get him sleeping better, but we will choose our battles right now.

The sun has been such a welcome sight this week. My soul was definitely craving the warmth of the sun. On Monday, Rachel and I took the kids to the park. It was still chilly and we had jackets on, but it was so nice to be outside! I fell asleep and ended up with a sunburned face, complete with raccoon eyes from my sunglasses. It was worth it.

Tyler is doing well. His anxiety still plagues him now and then, but he really is doing quite well. He's an awesome kid! I have decided that he was sent to me to teach me patience. He tries my patience with his whining and worrying, but he truly wants to make good choices and tries hard to do so. He is having a hard time with his sister getting so much attention right now, but all in all, this has been his best 6 months in over three years!

My children are my hero's! They all have challenges, but they handle them with grace and an inner strength that radiates from within them. I had no idea what I was signing up for when Jeff and I decided that we wanted to be parents, but I am learning and growing in ways that I could never had imagined. As long as I can keep my eyes open long enough to learn from them! :)

Our Dump House

Ever since Jared saw Toy Story 3 he has been fascinated with dumps. He likes to pretend that he is a giant magnet sucking up the metal and dumping it or a big tractor scooping and dumping. He has also been calling our house "the dump house". He'll say, "Mom, are we going home to our dump house?" "Yes Jared, we are going home to our dump house", I answer back. I know that sometimes our house might start looking like a dump, but is it really that bad? :)

This morning as I put him on the bus he said, "Mom, that is our spaceship dump house and the truck, spaceship, garbage truck is going to bring all the space garbage to our spaceship dump house."

Great! Now we are getting space garbage in our "dump house" as well!!!

Man, I love this kid!

A Different Dream

Alyssa has been having a rough time. She's been having break through seizures since December and she is tired and run down. After trying months to figure out why she has been coming home with so much homework this year, we have finally come to the conclusion that it is her seizure medication that is causing the problems. After researching more on this med I have discovered that many people have concentration and focus issues. They repeat themselves often and will often lose that word that they are about to speak. This explains Alyssa exactly. She has never struggled with homework before and this year she has been coming home with several hours of homework every night. She is exhausted and Jeff and I are exhausted. Luckily, the school is very good to work with us and we just set up a 504 plan for her. She'll always work with a peer tutor and some of her assignments will be cut down a little bit. She is so smart and got a 99% on her last math test, but it took her two days to do it, while it takes the rest of the class one day to finish. She just has a harder time keeping focused. Things went quite a bit better last week so I am hopeful that we have figured out some tricks to help her keep up.

Sometimes, I just get sad. I was really hoping that the seizures wouldn't affect Alyssa all that much, but they are and it stinks. I wonder why all three of my children have such struggles at such a young age. The other night Alyssa asked me if I had had hard things like she has had when I was her age. I didn't! My growing up years were relatively happy, easy, peaceful years (although I have made up for it since!) It makes me sad to see her so discouraged, just as I have been sad to see Tyler struggle with his anxiety, and Jared's struggles with his health. As a mom I just want to make everything better, and it is so hard when I can't.

I think that when we have children we have dreams for them as well. What mom doesn't want her daughter to be prima ballerina or her son to be a concert violinist or famous athlete? We want our children to feel successful and to be able to achieve all that they are capable of achieving. But my children have taught me to dream differently. I know longer care if my children are the best at anything except being themselves. I want my children to be wise, humble and compassionate. I want them to feel successful because they were able to achieve anything that they put their mind to. I want them to learn that just because something is hard it doesn't mean that it is impossible. I want them to show empathy and understanding to those who are different. I want them to know without a doubt, that Heavenly Father loves them no matter their struggles or mistakes.

As Alyssa was crying the other night as she asked me why she had to take this "stupid" medicine. I told her that I didn't know why, but that Heavenly Father knows why and that she was going to become an amazing woman because of what she is learning from this trial. I guess that it all comes down to faith. Faith in God's plan for each of us. Faith that he will not give us more than he knows that we can handle. Faith that as long as we keep trying to learn and grow that we will be strengthened by our trials, and faith that when we are so lost and discouraged, that God will lift us and carry us the rest of the way. I just pray that I can help my children to love the individuals that they are and then to have faith that it will all work out in the end. I am so grateful for my children who teach me so much each and every day. All three of them are my heros.