Thursday, May 19, 2011

Glimmers and Updates

I was just feeling thankful this morning that no matter how hard things are, there are always at least glimmers of hope and beauty in the midst of things and I wanted to share a few of ours:

Collin felt good enough one afternoon last week to do some finger painting. He painted one for his Grandad and one for Heather, who has helped us four days a week since September and is going to be working out of state over the summer.

In all of the retching stress, I forgot to mention that we had our four-month appointment with Dr. Awesome and it was overall very encouraging. He confirmed the minimal seizure activity on Collin's last EEG, noted Collin's 'quite remarkable' improvement in awareness and interaction, and that we are 'moving along, and obviously in the right direction.'

Somehow last week, we got the idea to try something like Prevacid to see if it might possibly help Collin's worsening symptoms. It seemed like an easy thing to try before our appointment in Cincinnati to eliminate one more treatment option and also give us something to do so that we didn't lose our minds. We discussed it with a few trusted therapists and then called the Cincinnati team, who agreed and called in the prescription for us on Tuesday (a particularly bad retching day). It's still a little early to tell for sure - we've had lots of false starts over the past months - but he hasn't retched a single time since his first dose on Tuesday and has been much more himself (happy, talkative, active) ever since. Even if it doesn't last, every break from the stress makes us better able to handle the next episode.

Yesterday, Collin had his fancy-pants two-hour hearing test. This test measures the brain's reaction to sounds since Collin doesn't have good enough motor control to look toward sounds and no language to tell us what he hears. His last test was back in the fall of 2009 when he had just stopped having spasms and had been on heavy medicines for six months, so it isn't really surprising that it was a little unclear as to how well he could hear at that point. This time, Collin had so many giggle fits at the sounds they were playing in his ears that they were afraid they were going to have to stop the test, since he needed to be quiet for it. Eventually, the novelty wore off and he fell asleep and passed all areas of the test with flying colors. We knew he could hear, but every time Collin passes a test that allows us to officially cross something off of our worry list, it's a good, good feeling.

Our sleep study second opinion in Cincinnati was scheduled for July, but we got a call this week saying that it has been moved up to Tuesday. We will see the aerodigestive pulmonologist Tueday afternoon to discuss Collin's history and options and conduct the sleep study that night. Then our GI/nutritionist appointment is first thing Thursday morning. It will be a busy, tiring week, but we're cautiously excited about the possible suggestions and answers we might get to make things better and better for our little champ.


  1. YAY! So happy that Collin passed his BAER! And all your other appointments sound exciting! Prevacid worked wonders for B, so I hope it helps Collin. :) Hugs!

    PS - We'll be in Lou-a-ville 6/7-6/15 for the wedding. Are you free 6/13?

  2. I'll be thinking of you three next week! I hope that there are more glimmers and hopefully some sunbursts.