The past two weeks have been somewhat mellow (thank goodness) and pretty much have been all about Victor’s TEETHING! Those darn two front teeth (and the two on either side) have caused all of us havoc; Victor’s sleep pattern has been somewhat erratic as we’re still having to get up for 2 hours in the middle of the night. In fact, the day his teeth finally erupted through his gums, he became slightly nauseous which led us to the decision to wait on increasing his diet ratio and give him ample time to feel better.
We will attempt bumping him up this week in a much smaller increment and now that his two teeth have surfaced, he’s been feeling much better. Victor’s seizure activity has slightly decreased. He now averages about 23 small myoclonic seizures/day and recovers from them quickly. Unfortunately, he also has a different seizure type, which we’re not clear as to what type they are. Possibly they are tonic-clonics, they average about 4/week, and last anywhere from 45 seconds up to 2 minutes each. Following this type, he gets a bit sleepy and may take a quick snooze to recover.
**For seizure type information click this link: http://nyneurosurgery.org/ep_types.htm.
All in all the past two weeks have allowed us to enjoy Victor more. We’ve felt more comfortable taking him out 
into the world again (these past few months of hibernation have made us stir crazy). I was able to bring Victor to a friend’s home for an afternoon visit and also met up with Cousin Michelle downtown at Westlake Center, for lunch. Both weekends we enjoyed the beautiful sunshine and landscape of Seattle: one weekend we took Victor to the beach near our home and met up with friends. Afterwards, we all hung out on our front porch, had lunch and enjoyed having company over again. This past weekend we took Victor to a local park and walked part of the Burke Gilman Trail. He really enjoyed being in the car, as he was very alert looking at everything and vocalized a lot! We were even able to finally bring Victor to a friend’s home for dinner. All of these small activities may not seem much to the average person, but they are HUGE milestones for Victor and us—it is so nice to feel somewhat normal again!
Victor is still doing well with his therapies. He’s gaining better head control and able to fixate on objects better. In the photo to the left is Victor checking out his toys in his “Little Room”. The Little Room is a therapy tool, which allows him to see objects close up. The chimes that he hits bounce off of the walls and he clearly makes reactions to them. He loves his Little Room and so do we…there’s no need for TV, we just watch Victor have fun! He’s still not grasping at objects, unless we place items in his hands nor is he yet sitting up alone. However, he continues to make small improvements by showing us how much more alert he is each day. We are so glad that spring is finally here and that we have more sunny days ahead to share with Victor as he continues to improve. Keep your fingers crossed that this next increase doesn’t make Victor sick and all things get better!
Next update: April 3rd
It’s been two weeks since I last wrote and we’ve certainly had some ups and downs. The week following my last update, Victor was stable on the 3:1 ratio. He was more alert, focusing on objects more than he had been and gaining better head control. We had two clinic appointments the week of Feb. 20th. Both our nurse practitioner and dietician were ready for us to increase Victor’s ratio, as he wasn’t showing the seizure control that we were all hoping for: he was still averaging 30-40 small seizures/day.
Into the weekend of Feb. 25th, Victor really started to show improvement. While he was still having a high number of seizures/day, he was lasting longer periods of time without having a seizure until he’d start to get sleepy. Apparently, as his brain shifts from one state to the next his little connectors aren’t as able to control this shift; hence seizure activity nearing sleep.
Monday, Feb. 27th, Victor (and I) had a wonderful day…probably the best in several months! His seizure activity really started to show a difference. He actually went close to 2 ½ hours without having a seizure and during his physical therapy session! It was the first time he had a therapy session with not a single seizure…he was willing to do just about anything and with a smile. The car ride home was also great…he made noises like any other kid and looked around in either direction, he really had a great time back there. I felt more encouraged and couldn’t wait to get home to tell Gary about his progress.
Seeing Victor doing so well, we decided it was time to bump him up a notch in his ratio. We went from 3:1 ratio to 3.25:1 (fats: carbohydrates), last Tuesday. Potentially, some kids can go as high as 4.5:1 to help gain seizure control. For Victor, this little bump proved to be more than he was ready for.
He quickly started to vomit. We spent all of Wednesday doing what we could to help him get over the nausea. We then took him back down to the 3:1 ratio but he was still having a hard time keeping things down. Thursday, we took him the ER as he was still a bit urpy and we thought his feeding tube had shifted. Several hours in the ER and a few x-rays later, determined that his tube was ok and he wasn’t showing urpiness. We were then discharged.
This last point may not seem like a big deal, however, for us…it was a huge accomplishment! We were not admitted for the first time ever of having to go to the ER. We, like any other family, were able to leave through the same doors that we had entered. We saw a doctor who’d treated Victor in the past as we were leaving and gladly updated him on Victor’s progress.
Sure enough, upon returning home he vomited a little more. The next day, Friday, he was still feeling miserable. We then added more water to his regular 3:1 ratio formula and continued this tactic over the weekend (same weekend as Aunt Noellyn's visit). 
As of today, Monday, March 06, 2006, Victor is improving but not at his best. He’s not vomited in a few days. Did I mention he is teething? Looks like his 4 uppers want to come in—YIKES!
Interestingly, during the time he was too ketotic and vomiting, his seizures really decreased in number. He even had a day of only 12! We are very encouraged by this and feel that one day, as his body will tolerate the increased ratios that he WILL gain better control.
Sorry for this long update but thanks for reading and keeping Victor in your thoughts!
Victor is weighing in at 19.8 oz. He’s now shy of 30 inches.
Next update: March 19th
into the world again (these past few months of hibernation have made us stir crazy). I was able to bring Victor to a friend’s home for an afternoon visit and also met up with Cousin Michelle downtown at Westlake Center, for lunch. Both weekends we enjoyed the beautiful sunshine and landscape of Seattle: one weekend we took Victor to the beach near our home and met up with friends. Afterwards, we all hung out on our front porch, had lunch and enjoyed having company over again. This past weekend we took Victor to a local park and walked part of the Burke Gilman Trail. He really enjoyed being in the car, as he was very alert looking at everything and vocalized a lot! We were even able to finally bring Victor to a friend’s home for dinner. All of these small activities may not seem much to the average person, but they are HUGE milestones for Victor and us—it is so nice to feel somewhat normal again!
Victor is still doing well with his therapies. He’s gaining better head control and able to fixate on objects better. In the photo to the left is Victor checking out his toys in his “Little Room”. The Little Room is a therapy tool, which allows him to see objects close up. The chimes that he hits bounce off of the walls and he clearly makes reactions to them. He loves his Little Room and so do we…there’s no need for TV, we just watch Victor have fun! He’s still not grasping at objects, unless we place items in his hands nor is he yet sitting up alone. However, he continues to make small improvements by showing us how much more alert he is each day. We are so glad that spring is finally here and that we have more sunny days ahead to share with Victor as he continues to improve. Keep your fingers crossed that this next increase doesn’t make Victor sick and all things get better!
