5 months

Mr. Otis turned 5 months old yesterday!

Over the past month, he has been working really really hard. With a little help, he is able to roll from his back to his tummy, and then again from his tummy onto his back. Grandma and Grandpa Reed have actually seen him roll from his tummy to his back all by himself a few times. Go, Otis!!!

Tummy time is getting better and better, with Otis holding his head, and sometimes shoulders, up for longer and longer periods. Since he's gone off the ACTH he's lost most of that extra puffiness in his cheeks (and everywhere else!). Without that extra weight, it's becoming much easier for Mr. O to lift his head. No worries, though--even though the extra puffiness has gone down, he's still got those signature Otis cheeks. We actually don't know Otis's weight and length right now, but he's definitely looking taller and feeling a bit lighter to us these days. Maybe it's just that we've gotten so much stronger from carrying our big little guy around?

Otis has been spending some time in his Bumbo chair (thanks, Jen and Nick!) to give him some practice sitting up. Mama and Daddy have to help support his head, but sitting in the chair really gives him a feel for sitting upright without arching his back and craning his neck back. It also gives him some extra practice holding that head upright, which he can do for a few seconds at a time, but still flops forward or to one side when he gets tired. He's getting stronger and stronger every day, though, and we know it won't be long before he's able to stay upright and hold that head up all by himself.

Over the past couple of weeks, we have been working with Otis on his visual development. His Tiny-K coach is teaching us to notice things that may catch Otis's eye--lights, specific colors, things that are shiny or may have movement, etc. We play around with toys and different solid/bold-colored items from around the house to see if Otis is interested enough to focus on and follow those items when moved around his field of vision. This will help us to discover which colors Otis may see better at this point, so we can have a really good starting point for helping him develop visually. We didn't know this until we started working with Tiny-K and Otis's opththalmologist (Dr. Hug--what a great name for a pediatric doc!), but visual skills are learned, much like walking and talking.

Otis has been doing a GREAT job of making and holding eye contact. I've noticed that sometimes when I'm reading him a story, he'll stare at my face as I read, instead of at the pictures in the book. Daddy has discovered just how much Otis loves dancing and being bounced and sang to, and spends a lot of time doing all 3 of those things at once, which almost guarantees smiles and giggles (and a LOT of exercise for Daddy). Actually, Otis has been smiling quite a bit, especially over the past week--and not just in his sleep. I can't even begin to express what a huge gift those smiles and laughs are to us, and how much hope they give us. We cherish every single one.

About 2 weeks ago, we started feeding Otis a little bit of rice cereal in the evenings before bed. He can't hold his head up on his own yet, but we have one of those little high chairs that you strap to a kitchen chair, and it supports him very well. He actually fits in it so snugly that we may end up having to get him something in a bigger size soon! Sometimes putting him in his high chair just makes him sleepy, but most of the time, he seems to be really interested in the cereal, although he still prefers the more immediate gratification/tummy-filling that his bottle provides!

Otis has been on Vigabatrin for his Infantile Spasms for about a month now, with a significant dose increase after the second week. Unfortunately, even with the big dose increase, the Vigabatrin has not worked to control the spasms. He's actually having much larger clusters of spasms, ranging from about 20 to sometimes over 100 at a time, pretty much every time he wakes up. The spasms continue to be fairly weak and don't upset him, but the numbers alarm us. We discussed this with Otis's neurologist on Friday and yesterday, and decided that it is time to move onto the next thing—the ketogenic diet.

The keto diet derives 80% of its calories from fat—so, high fat, low carb, low protein. It’s highly supplemented, since a diet like that contains almost no vital vitamins and minerals. The diet does something to the body that makes it mimic a state of starvation, which causes ketones to build up. The buildup of ketones is what works with the brain to control seizures. Very weird, and I’m not even sure doctors quite understand how it works (much like ACTH), but some kiddos are very successful on it—especially kiddos who haven’t responded well to drugs. Before he can start on the keto diet, Otis will have to be hospitalized and monitored very closely while he is put into a 24-hour fasting state to make his body burn up its remaining glucose stores. From what we know right now, he would have to remain inpatient for at least a few days so the docs can monitor him closely and make sure he is stable on the diet before we take him home. We're expecting a call to confirm this today, but we think Otis will probaby be admitted next Monday, the 21st, and will probably be discharged on Friday the 25th, if all goes well.

I’m really torn about this diet. It horrifies me to read about it, since it’s just nutritionally AWFUL (so eloquent, I know, but I can’t think of any smarter word to describe it). It's no secret that I suffered from eating disorders for many years and had to work very hard to educate myself and develop a healthy attitude toward and relationship with food. As a result, good nutrition is something that has become very important to me over the years--for me, AND for my family.

If this diet can work for Otis to get rid of these seizures, which if left uncontrolled could end up devastating his development and morph into a very scary and nearly unmanageable form of epilepsy, then we know it will be worth it….but the thought of depriving our growing boy of so many vital nutrients just breaks my heart, as does the thought of making him fast for those first 24 hours. It will be so hard to be in that hospital room with him knowing how hungry he is and not being able to do anything about it! It may, however, be a bit of a blessing to start him on it this young, since he we will be able to feed him a special ketogenic formula, as opposed to having to feed him keto "foods". As with the other treatments, the decision to put Otis on this diet will be a result of weighing the potential benefits against the risks, and in the end, we will educate ourselves to the teeth, look at the bigger picture, and do what will end up being the best thing for Otis's health in the long run.

If you're interested in reading up on the ketogenic diet, there is some really good info here:
http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet

We are ever grateful for all of the continued love and support we've received from our wonderful friends and family over these past difficult months, and we ask that everyone please just continue to pray pray pray and send out positive, healing thoughts for our Baby O.

We'll post some 5 month photos as soon as we can manage to get our stuff together and get them off of the camera and onto the computer!

p.s. Otis is keeping his good friend Grace in his prayers for speedy healing from her recent surgery, and is very excited to meet his brand new friend Zach, born November 4.