A Scary Situation...

Wow! I have been meaning to write about this for a while, but it has been a bit overwhelming. Regardless, I need to get this information written down so I don't forget it.  As stated in a previous blog post, Landon was really sick during September. We were in and out of the hospital and urgent care a lot, he was home from day care more than he was at day care, and he was really sick.  In addition to this, I started to notice he would shake his head back and forth a lot.  He has always done this since he was a baby, but the head shakes became bigger and stronger.  I will refer to the shakes as "spasms" from here on out. His spsams would last for 1-6 seconds and he would have 1-7 at a time.  This went on throughout the day and I knew something wasn't right.  My mom also noticed his speech had slowed down and he wasn't talking as much as he used to. I attributed this to his sickness, but it was clear something was wrong with our baby :( In addition to him shaking his head, he began stiffening his arms and shaking his body, which was a clear sign something was going on.  I was able to capture it on video, so once I had that, we headed to the clinic.  The video can be found here: Spasm Video (I will be locking the video in a couple weeks for privacy.)

Landon's pediatrician saw the video and instantly told us we needed to go to Mayo. She didn't say too much, other than she thought he was having Infantile Spasms and he needed to be seen right away. Don't Google infantile spasms unless you want to be terrified and sad at the same time :(  Obviously we researched our hearts out so we knew what to expect.  This was a bad idea, especially because the diagnosis and future for Landon looked so bleak.  One of the articles I read said that if we can get into Mayo, we need to see Dr. Bodensteiner because he is a specialist in this field.

Mayo had an appointment for us right away, which I was thankful for, but it also worried me.  Why could they get us in so soon? Was something worse that we thought? As we checked into the clinic, the nurse said we were meeting with Dr. Bodensteiner and I immediately felt at ease. I always knew God was in control, but at this moment, I truly felt His presence all around us. I just started crying and I am sure the receptionist thought I was a nut job. Once we met with Dr. B, he watched the video, said something was definitely wrong, but he was NOT having infantile spasms- praise God! I started crying, instantly, because we had all prepared ourselves to hear otherwise. He did a couple examinations on Landon and said he wanted to get him in for an EEG right away because although he was 99% sure it wasn't infantile spasms, he needed to rule it out 100% and figure out what was going on.  I was nervous, but I wanted answers. Dr. Bodensteiner said we could end up waiting all day for an EEG, however, he knows how to pull some strings and landon had an EEG two hours later, another miracle from God! It was really hard to watch Landon go through the EEG, but I knew it was going to give us answers.

The waiting room at Mayo, designed especially for children.

This was so hard to watch... thank goodness aunt Tami was there!

He wasn't a fan of the cap :(

All better!

Hanging out during the EEG

Seeing if a spasm would happen during play time :(

Almost done with the EEG!

He loves Beezie the bumble bee!

All done and ready to eat!

The EEG lasted about 1/5 hours, and after we were done with that, we were sent home. We didn't know the results, which bothered me, but obviously it was in God's hands. We went home and continued living or life. By this point, Landon's speech had become really limited and he was acting like a completely different baby.  It was scary to watch, but once again we knew we weren't in control. Landon was on many different prayer chains and we had the prayer warriors going in full force.  It felt comforting to know that people were just as vested into this as we were and we were NOT alone.  

Dr. Bodensteiner e-mailed me the next day and said an MRI was needed because although it wasn't infantile spasms, something was going on to impact his brain and we needed answers.  I wish I could remember all the dates, but October was such a blur that I can't recall all of them. 

The MRI was scheduled for 9:00 on October 7th (I think), so that meant Landon couldn't have formula after 2:00 am and Pedialyte after 6:00 am, so I was nervous how he was going to react. Thankfully my parents we were us, so that made things a little easier. He was a rock star, especially since things got pushed back and he wasn't taken back until 9:45.  Since Cory works the night shift, I had him sleep at my aunt and uncle's house in Rochester, during the morning, and then he met up with us around 1:00. My parents were my rock during it all, which is what I needed.  I have never been so scared or sad as I was when I had to leave Landon.  I was able to walk to the room with him, lay him down on the table, hold his hand, and kiss his face as he drifted off to sleep.  When I left that room I just sobbed... I still cry thinking about it. 

On our way to Mayo... sleeping peacefully with Mickey by his side!

A whole bunch of nerves are hidden in this picture... thank goodness they were here!

Trying to distract him from being hungry :) He "chatted" with all of the people walking in the hall!

So thankful my mom was there to hold my hand :(

His poor little IV after the MRI :(

Listening to the doctor. He was such a good boy!

My little honey with his angel bear!

Mom, Tom, and I went to the chapel and we prayed. I prayed that everything would be fine with him. I prayed he would come out of the MRI and have no side effects. I prayed God would give us an answer. I just prayed  my baby would be okay.  They called us up to the waiting area and we snuggled baby Landon until he was awake and ready to take on the day.  It amazes me how he remained so positive and happy despite everything he had just gone through. After the MRI, we hung out and waited for the results. Slowly, Landon started talking again, his personality came back, and it seemed as if his shakes had stopped... could this really have happened?

We met with Dr Bodensteiner's partner, Dr. Patterson, and he told us Landon's brain was pristine! Praise God and sweet baby Jesus! My baby boy was going to be okay! The doctor said he had never seen such a turn around and he had no medical explanation as to how or why everything changed. We thought for sure there was a tumor or fluid pressing on his brain, but by the grace of God, everything was okay! The only medical explanation they can think of is that the Enterovirus d68 he had in September, which was in his lungs, had transferred to his brain and was on the way to paralyzing his brain.  Research has shown that d68 tends to move from being a respiratory problem to a neurological problem, but there hasn't been a ton of research with it.  

Regardless, I truly believe God performed a miracle and healed Landon. Landon was so sick, and something was seriously wrong with him, yet everything turned out great.  I keep trying to see the lesson God was teaching me in all of this and I think he was trying to tell me that just because life is calm and good, that doesn't mean we should stop praying and being content in life. We need to remember that life is too short, so we need to enjoy each day and remember to praised and thank God for His abundance grace.  I think He was also showing us how happy and strong Landon stayed throughout everything, so we need to remember that despite what we are going through, we need to stay happy and optimistic because it can make a big difference in the end.  

I am so thankful for all of the prayers we have been given over the past two months. September and October were ugly months for us, but I finally feel like I can breathe a little bit and you can bet I have been hugging my little guy just a little bit more! God is SO good and miracles CAN happen, thank you for the prayers!

Until next time, friends, God bless!