Coming to terms and being optimistic

I re-read my last post and realized that I've come a long way in just a week. I'm coming to terms with the IS diagnosis and I'm not going to do the "woe is me", feeling sorry for myself thing anymore (well maybe just a little, every now and then). That doesn't do any good and Thomas and I both need to be strong for Ryan and have our game face on to try to do any and everything we can for him.

Note - that red spot on his forehead is from his hospital EEG last week. Poor little guy :(

Since the last post I have a few updates.

We started physical therapy (PT) last Friday and I really liked our therapist, Ashley. She's currently working with a few other kids with IS, which she and I were both surprised about since it's pretty uncommon. She mainly worked on stretching him to prevent tight muscles and a few exercises to work on his muscle strength. She was able to show me some things I can do to help him out and is going to bring me some handouts when she comes this week for our appointment. When I asked her how she would interpret being "aggressive" with our therapy, which was the suggestion from the Neurologist we saw in the hospital, she said that she, the Occupational Therapist and our Early Interventionist need to all work together and be in communication with each other to address the same things and do similar exercises with him. That way he'll be getting his therapy 3 times a week with them, plus whatever I manage to do with him throughout the week. His PT said we really need to concentrate on his neck muscles and head control but was glad to see him moving his legs and didn't think he was all that tight (good thing!). She classified him as having the development of a 2-3 month old. He's currently 8.5 months old. I've read that a lot of children with IS never learn to sit up, crawl, walk, etc. but I heard some positive and encouraging things from his PT and I will work with him and do whatever I can to see him meet some of these important milestones.

This past Monday we had our first follow up with Dr. Hunnicutt at Pediatric Neurology. We did an EEG first and then got a chance to meet her with and ask any questions. Want to hear some good news? His ACTH steroid medicine seems to be working. She was very pleased to see how well and how quickly he responded to his medication and we were able to lower his dose of the medicine. We'll still get weekly EEGs and appointments to make sure that we don't move backward but I was so glad to hear that the meds are doing their job. I haven't noticed any spasms since last Friday and only saw 2, one on Thursday and one on Friday, since we were discharged from the hospital. That is a big improvement over the 4-5 I was logging each day before he started the meds. I also hope that we can possibly stop the steroids after 4 weeks instead of 6 weeks. I asked about next steps once we're done with the ACTH (steroids) and she said he would then go on an anti-seizure medicine. It will be administered orally so we'll be done with injections - thank goodness! She showed us an image from Ryan's MRI so we could see what it looked like in comparison to a "normal" brain. Ryan's brain is smoother and the grooves aren't as deep or as numerous. She also showed us a picture of a lissencephaly brain and his doesn't look like that either. She still wouldn't rule it out all together, but does not feel like she would diagnose him with it. We got on the schedule for our weekly EEGs and will be visiting the Neurologist every Wednesday for a while.

Another good thing...Ryan is being such a stud. He hardly fusses when he gets his injection each morning and evening. He's being so strong and such a little fighter for me. His reaction is definitely making it easier on me as well and I don't cry when I have to stick him anymore. He is putting on weight, which is a side effect of the steroids, but hasn't been showing any of the negative side effects. For that I am extremely grateful.

I still am very sad and have moments when I just start crying, but I'm able to talk about it now without immediately bursting out in tears. I'm taking the positives that we got from PT and the Neurologist and holding those things close to my heart. I feel like God must be granting me some level of peace about it and is listening to all the many, many prayers that are being sent up in honor of our sweet Ryan.

Here are a few videos of Ryan having his spasms. They are fairly subtle. I've gotten a lot of questions about it and everyone is surprised to see what they look like. I know when you hear the word "seizure" you think about someone violently convulsing, which is not at all what his looked like. So in an effort to educate, I want you all to have an opportunity to see what Ryan's spasms were like. Each time his eyes roll up and he blinks, it's one of the spasms within the cluster. The scary thing is that they don't look scary, which is why I didn't think it was going to be a huge deal. Maybe seeing this will help someone recognize it in another baby and to get help quickly. The sooner it's diagnosed and treated, the better!
Ryan Infantile Spasms 1
Ryan Infantile Spasms 2

I don't want to leave my other sweet peanuts out of the update, so here's a little tidbit about the others.

Stokes is OBSESSED with his feet and constantly looks like a human pretzel. He's hilarious and has me laughing throughout the day.

Pretzel shot 1

Pretzel shot 2

William is such a sweet pea and loves to giggle and laugh. He is "Mister Laid Back" these days.

I came across these 2 Bible verses over the last few days and each of them spoke to me in this trying time. I thought I would share...

"Peace I leave with you; my peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled, and do not let them be afraid"
John 14:27

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight."
Proverbs 3:5-6