Oh happy day

Miracle. That is the word that comes to mind when I think back to Ryan's neurology appointment from this Wednesday, 3/11/15. It's a beautiful, beautiful thing when you go to an important appointment and come up with huge smiles and feeling like you're on top of the world.

Dada and Ryan - playing and laughing

I was not nervous heading in to this appointment. Ryan's been doing awesome, we're seeing some progression in his motor and cognitive skills, he's eating well and his last EEG showed NORMAL brain activity (read more about that here). So based on all of that, I wasn't nervous. I just wanted to talk to the Neurologist and get a forward thinking view of his prognosis and see what we had in store. Thomas came to this appointment with me, which I love! It's so helpful to have two sets of ears hear what the doctor says for a few reasons. He and I might interpret something differently so it's nice for us to summarize our "take" of what was said later, and it's a lot of information to take in so we feel like between the two of us we can retain most of what was said.

Here's the overview. Ryan's Neurologist, Dr. Taft, was very, very pleased with how well Ryan is doing. He walked in and the very first thing he said was, "I have a gift for you." See a picture of our treasured gift below*. He said that based on everything he's seeing from Ryan, he could very well be in the small minority of kids that had infantile spasms and don't have seizures later on in their lives, I believe he said only around 10 - 20% of IS kids don't have ongoing seizures. The fact that Ryan's brain development was abnormal, as seen in previous MRIs, makes his chance of escaping a life with seizures even more unlikely, I think that was 2-5%. But, that's how it's looking right now. Hallelujah! Dr. Taft was very impressed with Ryan's development with head control, strength, weight bearing and attention/cognitive skills. He said that Ryan's in the best spot he could be in. I wish I could remember his exact words so that I could quote him here, but he said something along the lines of Ryan being remarkable and he was not expecting to see him looking as great as he does, based on all of his previous tests and what's he's seen about Ryan on paper. He wasn't quite sure of an explanation as to why Ryan is doing as well as he is. I sure do know the explanation. Our God has His gentle and loving hands on Ryan. I told Dr. Taft that we've been praying very hard for him. I know a lot of you do, too. THANK YOU. From the bottom on our hearts, thank you. That is really the only explanation for Ryan's development.

I don't want to be a downer or be overly dramatic, but I do want to be realistic about how serious and grave Ryan's initial diagnosis was. There was a time that we didn't know if Ryan would ever be able to gain head control, ever be able to support his own weight, whether he would ever be able to do anything without the use of a wheelchair and other equipment for disabilities. We, of course, still don't have a crystal ball to know what his future is going to look like, but Ryan is proving to us each and every day that he's a fighter and we should not count him out of anything. We are going to stay the course and continue with each and every therapy we can get and definitely pray with our whole hearts, all the time.

Next steps include another MRI, which is scheduled for a few weeks from now. He will have to be sedated for the MRI, so I'll request some prayers from y'all again before that appointment. Dr. Taft said he would be surprised if we don't see some major improvements from what the last MRI showed us in terms of brain development and abnormalities. We will also come back for another check up with Dr. Taft in about 4 months, just to continue checking in and making sure Ryan's on a good path and we're doing everything we are supposed to be doing. As long as Ryan stays on the same path and continues to do as well as he's currently doing, Dr. Taft will probably take him off Topamax, which is the only medicine he's currently taking. Topamax is anti-seizure medicine. Dr. Taft is not ready to take him off yet, but it may be in our future plans for Ryan. I am almost scared to say all of this stuff aloud and to type it up here in the blog, almost like I am going to jinx all this great news and sabotage the continued improvements and development we hope for Ryan. Knock on wood!!!

Needless to say, it was a GREAT appointment, and that's putting it mildly. Our other Neurologist, Dr. Hunnicutt, came in to see Ryan for herself and then as we were leaving, we saw our EEG techs in the hallway. Ryan and I got to know the EEG techs fairly well last summer and fall when we were going for EEGs on a weekly basis. I'm not trying to brag, but anyone that is around Ryan just falls in love with him. So the techs love Ryan and wanted to come see him and check in on how he's doing. We were standing there in the hallway with 2 EEG techs and a few of the nurses that we've also gotten to know and we announced to our small group, with huge smiles on our faces, that Ryan had his first ever normal EEG and I kid you not, they all started cheering for us! What a moment of complete joy. I will probably never forget that.

As always, continued prayers for our sweet boy are requested and appreciated. I will keep you up to date for future appointments, developments and test results. Thanks be to God.

*One of the very best gifts I have ever received, print outs of two of Ryan's EEGs:

This is a printout of Ryan's EEG from July 2014, when he had an infantile spasms recurrence and right before we started his second round of ACTH steroid medication - you can read about that more in this post, A recurrence. It is just a snippet of the overall EEG and shows a 10 second reading of his brain waves. Notice all the spikes - that is NOT good. His brain was firing all over the place and was very disorganized at this time. Side note: this was being recorded while he was asleep, this was not even during a spasm. 

This is a printout of a 10 second reading of his brain waves from his last EEG on 2/9/15. This is what a normal EEG looks like. He was asleep during this one as well. His brain waves were nice and even with no spikes. Can you tell the difference between the two EEGs? This gives you a visual of what huge strides have been made over the last 7 months or so. Dr. Taft said he whole report pretty much looked like this. How beautiful is this?!?! It's a miracle.