It's in the Journey...

It was two years ago today, after having waited through an excruciatingly long Labor Day weekend, that we stepped into Children's Mercy Hospital for the very first time to subject Otis to the series of examinations and tests that would result in his diagnosis of Infantile Spasms.

I remember that first week in the hospital as being a whirlwind of sadness and fear and anger and just plain bewilderment. Almost everything we read about Infantile Spasms online seemed to use the words devastating or catastrophic. We had no idea what was in store for us, what that awful diagnosis was going to mean for our sweet little boy's future. We were the ones who were devastated.

As scary and rocky as it has been at times, I am so grateful for the way this journey has transformed us and shown us our strength. Our hearts have been broken wide open through all of this, and we have discovered a greater sense of purpose. Over and over again, we have been picked up, dusted off, and carried by the love and prayers of our amazing village of friends, family, medical professionals, and even complete strangers.

We are certainly not out of the woods yet, and we are learning to accept that maybe we never will be. Despite all of the many anti-seizure drugs that have been prescribed, tried and failed, nearly two years on the Ketogenic Diet, and the VNS, Otis's seizures persist at about 300 per day. While this is of course very discouraging to us, as Aaron's mom says, we are not without hope. There are still treatment options out there for us to explore--we are becoming master researchers--and while the Big Surgery is not off the table, we would like to exhaust everything we can before going that route.

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Without more ado, here is a really disorganized summary of what Otis has been up to this summer!

Ryan is now staying home with Otis, and has been able to work really intensively with Otis on therapy stuff like:

• putting weight on his hands (which he hates!)
• getting down on all fours in crawling position
• using both hands to hold toys
• sitting up
• scooting across floor on tummy toward a toy (="goal") with him pushing his feet against our hands
• choices between 2 toys, 2 food options, or more food or more drink at mealtime
• moving from sitting to tummy by leaning to side and putting weight on hands
• Joint compression
• Bringing knee in toward tummy when on his tummy

Earlier this summer, Otis had gotten really good at bringing his spoon to mouth during meals and handing it back to us for more. Lately, however, he has been exercising his 2-year-old's will and is less than cooperative at meals. Sometimes it takes up to an hour and a half to get a meal into him--and because he's on the Ketogenic Diet, he has to eat every bite of his meals to ensure that he's getting the full ratio. Thankfully, at our request to Dr. A, we are now weaning down to just below a 2:1 ratio, at which time it becomes the Modified Atkins Diet. We are taking the wean very slowly, dropping the ratio by .25 every two weeks or so to make sure the decrease isn't causing an increase in seizures. We have just dropped to 2.75:1 right now, and so far have not seen any big changes in seizure activity. Although it will still be high fat/low carb, the MAD will be much less restrictive than Keto in that we won't have to carefully weigh and measure his food anymore. We'll just have to start counting carbs to make sure those numbers stay below a certain level. We are VERY excited about this!

Otis got new glasses earlier this spring, as a routine follow-up with the ophthalmologist showed that he has become a little less farsighted. He had stopped keeping his old glasses on, so he didn't wear any glasses for a number of weeks. We were excited for the new ones to arrive, but when they did, Otis wasn't excited about keeping those on either. Like his mama, even though they help him see better, he just doesn't like the feeling of having glasses on his head. I can't say that I blame him, but we keep trying to keep them on him as much as we can.

Otis has been able to drink from his sippy cup all by himself for quite some time, which is awesome. When he first figured it out, it was really cool to see how proud he was of himself! He just uses his left hand for this, so we're trying to encourage him to use his right hand to assist, which he will do if we support that elbow for him. Now we're just trying to teach him to set the cup down nicely when he's done with it, as his current preferred method is to toss it violently to the side...which is kind of funny, but still a habit that would probably be a good idea to break early!

Otis is still signing for "more", and we are now trying to teach him how to distinguish between more "food" and more "drink". We've not been very successful with this, especially since Otis has decided that he's not very interested in meals right now, but we keep trying!

We have been trying to wean him off of his plug, which has also not been very successful. We try to only let him have it during nap time, bed time, and when he is in his stander. It didn't take him long to figure this out, and if you put him in bed or in his stander and don't IMMEDIATELY give him his plug, he absolutely loses it! 

Other stuff...

• Otis has been smiling more than ever! We see smiles now pretty much daily, which has been such a gift. He'll smile when he hears us laughing, or when we smooch his face and announce "kisses!" or just anytime he's feeling good and having a good time. He's even developed this sweet little smirk that he brings out at times when he's being feisty--like when he's avoiding a spoonful of breakfast.
• tiny-K has provided "versaform" chair and stander on loan to help Otis work on sitting posture, trunk and neck strength, and getting weight/pressure on his joints and feet.
• When on his knees on the floor with his upper body supported by a couch cushion, Otis has begun to make a little bouncing motion with his weight on his knees. Yay!
• Otis and Mommy both love to listen to Daddy sing and play guitar. Otis will sometimes sing along.
• He is chatting a lot, especially with his plug or fingers are in his mouth. Lately, he has been exploring the higher pitches (some of them ear-piercing!) of his vocal range. He also likes to move the plug to the side of his mouth as he shouts AYIYIYIYIYIYI!
• Otis is VERY interested in exploring our mouths (and nostrils) with his hand while we talk, putting his hand on and in our mouths and then bringing his hand back to his own mouth, sometimes making sounds, sometimes not, but it is very clear that he is trying to figure this talking thing out. Early in the summer, he discovered his own nostrils with his fingers! For awhile, he looked really puzzled/surprised when his finger ends up in his nose, which was really funny to watch. He still seems to really enjoy shoving whole fingers up OUR nostrils.
• Daddy gave Otis his first summer haircut with the clippers earlier this summer. We had let it get pretty shaggy as summer progressed, and at a recent back to school potluck hosted by Ryan's SFT teacher friends, he got an awesome impromptu cut from Heather, for which we are not able to thank her enough. (Thanks, Heather!)
• Otis is STILL cutting his 2nd year molar, which are taking FOREVER to come in. 
• We eliminated dairy from his diet on June 9 to see if the chronic rash on cheeks would go away. It does still make an occasional appearance, which we think is probably due to the Onfi, but for the most part the rash has cleared up.
• He still loves bath time and does his very best sitting in the bath. We had hoped to take him swimming for the first time this summer, but never managed to make it to a pool. We would still REALLY like to make this happen soon.
• His sleep is still not so great. He usually wakes up with a cluster of seizures within 1 hour after going to sleep, then about every 3 hours after that. His worst/hardest clusters occur first thing in the morning. For awhile, he was on a really good nap schedule with long nap after breakfast and sometimes another short nap late afternoon. Now we're lucky to get him down for any nap at all at any time during the day.
• We had a great first Feldenkrais visit and a couple of other so-so ones after that, but we would really like to get started with the Anat Baniel Method instead. ABM is much more intensive, with "lessons" occurring twice a day for a week at a time every 8 weeks or so. The closest ABM practitioners to us are in Tulsa and St. Charles, MO. 
• We are also interested in pursuing craniosacral therapy and scheduling a visit with the naturopaths here in Lawrence to learn their perspective on O's condition and treatment.
• We are working on getting our house ready to sell so that we can find a one-level house that is safer for Otis and can be made wheelchair accessible. We really love our house, but we love our Otis more.

We have had some GREAT visits:

Otis saw a developmental pediatrician and psychologist in late May, who referred him to OT. The developmental ped, Dr. N, will continue to follow Otis. We will have a visit with her every 6 months going forward. Our next visit is set for November. From this first visit, we learned that it is too early to tell whether Otis is on autism spectrum, especially since so many other factors  (seizures, meds, low muscle tone, etc.) could be contributing to his social quirks.

O has been seeing his Children's Mercy OT, Kelly, every two weeks. He will soon be shifted over to PT instead to work on getting him stronger before moving back to OT to work on more fine motor stuff. Kelly gave him some new cushioned arm braces to work on straightening his arms and bearing weight on his hands.

Dr. N also referred Otis to the CM Rehab Clinic, where we learned that Otis has very high muscle tone on his left side (the side he uses the most) and very low tone on right side. He was prescribed braces for his feet and ankles to use when working on standing to keep ankles from turning in and to get Otis to keep his heels down. The orthotics that were made for him kind of resemble Rainbow Brite boots!
The rehab NP referred Otis to the CM seating clinic to begin getting him outfitted for custom wheelchair based on his needs. That visit will take place on October 8. After that, could take about 6 months of back and forth with insurance company to see what they will cover. Otis will need wheelchair before he can start preschool at age 3. We will follow up with the rehab clinic in December.