Day 3 – the morning after

I didn’t get this sent last night. So its being sent a day late. Forgive me?

This morning, Ryan slept right through his labs. They want a good medication level before we started to take his meds away. He slept through them taking 3 tubes of blood. He’s amazing. When he woke up as the lab tech was walking out of the room, there were nothing but smiles. The nurse came in and gave him his medication for the morning dose. Normally he takes 3.5mL and we’re down to 2.5mL 3xdaily. I asked her about the anti-itch med and we gave him more of that as well.

After he ate breakfast, Krissie came to visit and play! I took my laptop down to the lobby and got some work done before Ryan ate lunch. He devoured his lunch again today and took a small nap. Aunt Beth visited for a couple hours too. We love our visitors!!


Dr. H (our neuro is on call this week!) came in and had no new news. We’ll be here for a few days and they want him to seize so they know more information on his seizures and brain activity.

So Dr. H has said that chromosome 18 kids don’t have MTS (medial temporal sclerosis). He said the right side of the brain can be taught everything the left side is doing – including seizures – which means the more these seizures happen, the more the right brain may catch up and learn. Which means I want these darn things to not happen at all!!

At the conference for Ch18 back in July, I spoke with the neurologist who works with the research society who told me surgery for kids with ch18 is not a good thing due to the developmental delays. I don’t remember talking to him about MTS so I felt the need to contact him.

I called and spoke with Dr. Cody with the Chromosome 18 Registry and Research Society. She agreed that ch18 kids do not have MTS – in fact she looked it up as some people call it something else. I spoke to her about the surgery discussion I had with Dr. A at the conference. She said she was going to take a message and discuss it with Dr. A – however she didn’t know if he was in clinics today or not. I’ll wait for a call or email from Annis, the awesome nurse with ch18 for information…and hopefully it will put me at ease with surgery, MTS, Ch18, etc etc. There are so many factors with Ryan….

I was able to get a couple hours of work done today, which I was so thankful for! My mom brought Britney up to see us…I went home with her. Mom stayed until my sister was done with her night class when they switched and Abby stayed with Ryan for the night.

Ryan fell asleep about 1230 and was up about 830 on Thursday morning. I returned by 930/945 in a rush and annoyed with traffic but refreshed for another good few days with my boy.

At home, Brit and I started a new project. I’m not sure where it will go but she’s pretty excited to share it with her friends and get busy! I know her BFF will be excited for this one too!


Hopefully I’ll catch up today and be back to updating daily. Look for another post tonight (Thursday).

Thank you for your outpouring love and concern for my boy. We are so blessed!


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