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! :)