Wishin' and Hopin'....

We are long overdue for an update, but are pretty tired these days, so it's been kinda hard to get our brains to put together anything that made much sense....but here's our attempt:

Otis is still the most awesome kid ever. He's growing like crazy (the ACTH and his new increased appetite have helped with that!) and is now 16 pounds 10 ounces and 26.5 inches.

We gave him his 15th ACTH injection this morning, and took him back to Children's Mercy for his second EEG and a follow-up with his neurologist to discuss the results. Over the past two weeks, Otis has become so much more alert. He's been making all kinds of fun noises, squeaking, squawking, squealing and talking to us in little bursts here and there, and we've been seeing so many more smiles than we had in the month leading up to the ACTH therapy. Unfortunately, the spasms haven't gone away. Some days he has very few and it seems like they're going away, but other days, like today, he has many. 

Unfortunately, his EEG today read much like the first one. The neurologist is encouraged by the new smiling and alertness, though, and wants to continue on the ACTH treatment. As of tomorrow, we will be increasing the dose again, and will watch Otis closely for the next week and will call the neurologists on Monday with another report. If there has still not been much progress, the dose will be increased one last time. If THAT doesn't work for him, the neurologist will begin to talk to us about other options beyond the ACTH therapy.

Otis is scheduled for a 3rd EEG and follow-up appointment on October 10th. We have been so grateful for all of the encouragement, love, support, and prayers our family and friends have given us over this past very difficult month. Over the course of the next week, we ask that you please continue to pray, send good vibes and positive thoughts, petition the universe--whatEVER you're willing to offer up--because we continue to have faith that all of that positivity and hope is helping Otis to heal. It's been a long, hard journey, but we know in our hearts that he'll get there. We pray so hard every day for the patience and strength to help Otis through this.

We asked the neurologist today what WE could do, besides the daily injections, to help him. Sometimes it just feels like all we're doing is waiting and waiting for something to happen, and all that waiting makes us feel so helpless. The neurologist told us to just love him....and stimulate him like crazy--expose him to colors, sounds, lights, textures, talk to him, sing to him, etc. So if you happen to stop in for a visit sometime within the coming weeks, be prepared to walk into Obnoxious Toy Central. We're on it!

There is so much more to share here--it's been a busy month--but we'll have to save it for another time. It's bedtime! Until then, here are a few more photos to tide you over.

Love,

Kathy & Ryan

Otis and his new friend Rylan!

Being generous with smiles :)

With Grandma & Grandpa DuBois!

MUAH.

p.s. patience.