Updates

Alyssa in the Nutcracker!

Alyssa has her MRI today. Hopefully all will go well. Her CT scan from Saturday showed a small Arachnoid Cyst, which the doctors didn't think would be causing the seizures but I'm not so convinced after doing some research on them. Hopefully the MRI will give us a better picture of things. She is still doing well and the medicine that she is on still seems to be helping. It is kind of strange finding someone to watch Jared so that I can take Alyssa up for a test. It's usually the other way around!

Jared is doing pretty well. He has had a sinus infection that keeps moving to his eyes and now to his ears that we just can't seem to get to go away. On Friday he came home with his left ear just oozing junk. After trying three oral antibiotics over the last 6 weeks and strong antibiotic drops in his ear over the weekend we still weren't getting any where so we are doing antibiotic shots this week. Hopefully this will work or we might have to start some IV antibiotics. So, he looks and sounds pretty bad but is generally pretty happy. He's missing school again this week, but that kidney of his is still doing AWESOME! Thank Goodness!

Things with Rachel and her family are slow. Her husband is still in the hospital but he is improving. I'm just praying that Rachel will continue to have the strength to keep going. She is an amazing woman. Her strength and patience with all of this is incredible. I love her so much!

Tyler is holding up pretty well. He had a really good weekend, but struggled with his anxiety yesterday. I am just so grateful for the wonderful teacher that he has. I don't know what I would do without Mr. L! He is so good with Tyler and I never worry about Tyler when he is at school.

Jeff has been amazing. I am so grateful for him! He dropped everything this weekend and we just spent time together as a family. His job is so incredibly demanding but I am so grateful for how hard he works to support our family. He is my rock and I am so blessed to have him as my husband.

I have been in a bit of a daze the last few days. Sometimes I just long for a quiet, peaceful, worry free vacation on the beach. But I know that our Heavenly Father is watching over our family and knows exactly what is happening. We are constantly receiving tender mercies that help me remember that he loves me and our family and hasn't forgotten us. I don't even try to understand the why's and how's but try to have faith that in time, everything will be ok.

It's Raining

Alyssa had a grand mal seizure early Saturday morning. It was one of the scariest things that I have ever seen. She is ok. There is no tumor, which was my greatest fear, but we still don't have any real answers. More tests will be happening this week. She is on an anti-seizure medication now. So yes, all three of my children are now taking medications. It is quite the assembly line both morning and night now.

We think that she has been having seizures for several weeks now. 3 weeks ago she came in one night saying that her right arm was shaking. We thought that maybe she had slept on it funny. Last Sunday she woke up feeling nauseous and was then fine a couple of hours later. In the middle of the night early Monday morning she came in saying that her arm was shaking again. Jeff put her in bed with him (I was in bed with Jared), and an hour later she woke him saying that it was happening again and this time he actually saw her right arm spasming. We thought that it was a little strange so we took her to the pediatrician that day and he ordered lab work. Lab work came back normal. The rest of the week she told us each morning that she was having one or two of these episodes each night. Friday morning she woke up nauseous again and was fine a couple of hours later. At this point I called the pediatrician and he referred us to neurology. An appointment was scheduled for April. Friday night Jeff decided to sleep in Alyssa's room to keep an eye on her. He was inspired. At three in the morning her arm was spasming again. At 5 AM he heard her say Dad and then she started seizing completely. He picked her up and yelled at me (I was with Jared), I jumped out of bed and immediately knew that it was a seizure and told Jeff to call 911. She seized for 2-3 minutes and then was unconscious for another 5-10 minutes. The poor thing woke up with several paramedics surrounding her and an oxygen mask on. She was pretty terrified. So she and I took a ride in the ambulance up to Primaries. I just couldn't believe that my child that was my healthy one was now on her way to the hospital in an ambulance! How could this be happening to my sweet princess?

After spending the day in the ER we are now understanding more about seizures. It is definitely more scary for those witnessing them they are for those experiencing them. We now know what to do if she has another big one and have special medicine to give her if she has one that lasts longer than 5 mins. She is fine and is tired of us making a fuss over her. Her CT scan was normal, thank goodness, but her EEG looked a little abnormal so we will be repeating that in a couple of weeks and doing it overnight since that is when her seizures are happening. We will also be having an MRI done this week as well. The neurologists told us that seizures are very common in children and they often never know what has caused them and that they are often weened off of the anti-seizure meds. after a few years and never have another seizure again. Hopefully this will be the case with Alyssa, but the tests will be able to give us a better idea of if she might have a seizure disorder for life.

All ready for her EEG and just as cute and feisty as ever!

She has been ok the last couple of nights but that is because Jeff is sleeping with her and waking her up every few minutes during her magical hours of 3 - 6 AM. I told him that last night was the last night that he can do this because we need to see if the medicine is helping and because both of them need sleep! He was so scared for Alyssa and thought that he was losing her. He just keeps saying that he is just happy to have her for another day. Both of us will never forget seeing her like that. And we hope that we won't have to see too many more. We are just so grateful that it is so far nothing too serious.

We came home so tired and emotions raw. My mom had been sweet and had spent the day with the boys and had make us dinner. At about 7:30 pm we got a call from my Dad saying that he was headed to my sister, Rachel's house, because her husband was not doing well. He was having a reaction to a medication that he was on. So, we had an ambulance at my house early Saturday morning and an ambulance at my sister's house Saturday night.

It's Raining.

My mom and Dad were with us Saturday morning helping and were with my sister at the hospital and helping with her kids until early Sunday morning. My dad climbed into bed and said that it had been the longest day of his life.

I know why we have challenges and I know that we won't be challenged with something that we cannot overcome but sometimes it just seems too hard. We are all tired. But we have many blessings as well. We have wonderful family and friends who would do anything for us. We have incredible medical services available to us and our faith and knowledge of the gospel will be our anchors. Our family will get though these challenges. Because even when it is raining, a rainbow is soon to follow. is soon to follow.

Wow! I really disappeared for a while. Sorry about the lack of updates! And sorry about the videos of Jared eating with out any explanation. We are looking into taking Jared to a feeding clinic in Pennsylvania this spring and they needed to see some videos of Jared during a meal time. The fastest and easiest way for them to see it was by posting it on my blog. So, everyone got to enjoy watching Jared's fun at the table! :)

I have so much to catch up on! December was a wonderful, busy, fun, and BUSY month! It will take me awhile to get caught up but I will try.

But first, I have to say that my baby is growing up!!!! Jared is making such incredible progress this year and I am amazed at all that he is accomplishing!

This morning I had to take him to get labs done before school. When we got to the hospital and he discovered that we were there for labs, he was quite sad and I was worried that it would be a rough draw for him today. But, he surprised me by calming down quickly and then started talking to me. This is how our conversation went.

Jared: "Mom, I getting big. I growing!"

Me: "Yes Jared, you are getting big. You are getting to be a big boy."

Jared: "After labs I go to school and play with my friends."

Me: "Yes, after labs we will take you to school."

We then get called back for labs. He walked back calmly and sat on my lap. As they put the elastic around his arm he got a little nervous but then he calmed down and said.

Jared: "Mommy, I be happy!"

Me: "OK Jared. You can be happy!"

Jared: "The airplane is coming! (He calls the needles that they use, "airplanes" because of the little plastic piece on the needle that helps the tech guide the needle in.)

Jared: "Ouch!"

And that was it. No tears or yells. He calmly watched as they finished up and then hopped down and was ready for school. He is getting so big! He is so brave and such an amazing, tough little man! He is growing up. It brings tears to my eyes to think about all that he has been through and all that he has achieved in his first 4 years of life. I never stop learning from my children. They are amazing!

Jared Eating #1

Jared Eating #2

Jared Eating #3

Jared Eating #4