Devoted to Dominic: Last Hospital Visit!

So, I haven't written a blog post in awhile - things have been nuts around here. But, I wanted to share that this week Dominic and a couple days at DeVos for his extended EEG. Things went great and we were actually released a little early! The Neuro on call said that he saw absolutely nothing abnormal and there was no need to stay the full 48 hours! Amazing! So, at this point the last med he's on is Keppra. Now that the EEG is done, we'll discuss with our Neuro here and Dr. Chugani to come up with a plan to wean him off the Keppra. For those of you who have followed Dominic's story from the beginning - this is absolutely a miracle! When he was diagnosed with Infantile Spasms, I thought our world was coming to an end. Even while we were in the hospital this week, our nurse (who has been a nurse for 30 years) told us that 20 years ago the head of Neuro told her that Infantile Spasms was one of the worse diagnoses you could give. Science has come a long way since then, but still, most children are not as lucky as Dominic. It's really an incredible feeling when a neurology nurse looks at your little boy and gets goosebumps watching him walk around and talk. Still can't believe how fortunate we are.

Always our happy boy!

Now we're getting restless...

Lunch date!

Reading with Grammy

See ya DeVos!!!!

This was a very different hospital experience. It brought back a lot of horrible memories that I haven't thought about it a long time. But it was so great that my biggest worry was keeping my 2 1/2 year old entertained in a small room. There were so many hospital stays where we just waited and waited and waited for news - usually bad. From seizures to viruses, to strokes, to mitochondrial disorders to brain surgery and just about everything in between. It's pretty incredible that all of that happened in the span of 10 months! And that being the first 10 months of Dominic's life. He sure has come a long way!

In other news, we are taking a small break from OT and PT. He had his gait pretty much corrected and a new AFO ordered, so Robin doesn't think he needs PT at this point. He's getting a new AFO made of carbon fiber that is more flexible and has been shown to significantly improve the limp and gait of a child with Hemiplegia - he will be the first kiddo in GR (at least through DeVos, that will be getting one!). Check out the video below of him wearing it! As he gets stronger he may have some growth spurts that will throw off his gait or cause tightness. She said most kids with Hemiplegia at some point go through serial casting because of tightness in the weaker foot/leg. But we'll cross that bridge when it comes. He's also at a point in OT that he's not making much progress. Currently, he wears his glove at night to keep his hand open and loose, but needs to work more on using his right hand during the day. I'm looking forward to this break, just to give us a little more down time. It won't last forever, so I'll take it now. We are also preparing to write his IEP (individual education plan) for preschool next year. I STILL can't believe he'll be hopping on a bus and heading off to school. But I think it will be such a good thing for him!

While I know Dominic still has a long road ahead, writing this post feels like we're coming to the end of this crazy journey we've been on the past 2 1/2 years. To think that Dominic would be seizure-free and off all meds at two years old seemed utterly impossible. Every single day he amazes me. He is the happiest and most joyful kid I have ever seen. We are incredibly grateful and humbled by the prayers and support of friends, family and strangers over the past couple years. We have learned that God works in mysterious ways and can use even a 2 month-old baby plagued by intractable seizures to touch so many people. We have experienced incredible sorrow and loss as well as moments of happiness and joy. While it would never be a cross we would have chosen to bear, we have seen the way God has repeatedly blessed us through this trial. Thank you all for sharing in this journey with us - for crying with us, praying with us, holding us, supporting us and rejoicing with us. We are eternally grateful!