Going Tubing

Oliver will be the lucky recipient of a lovely pair of tubes for his ears in the near future. After his 15 month checkup with our pediatrician we all agreed that 5 ear infections in 4 months is just too many...and they'll keep coming if we don't take some action. We have the name of an ENT and will be trying to get Oliver in to see him as soon as possible so we can schedule the surgery. I have heard it's a minor thing and takes about 15 minutes to get the tubes in once he's out so it should just be a one day stop at the hospital.

The 15 month checkup went pretty well, we will return on Friday this week to get a shot for Oliver. We are going to try and get him caught up on some of his vaccinations. The doctor recommended prevnar or pentacel. The pentacel has pertussis vax in it and I'm scared of that one as it's contraindicated for seizures. Since Oliver's seizures are still uncontrolled I don't feel comfortable administering the one shot that might cause a seizure reaction. Oliver is growing well and is now 25 lbs and 31.5 inches tall. head circumference is up a bit from last time but not too much, or too little so we're feeling comfortable with that.

He continues to suffer from his GI issues and is very uncomfortable most days. We are at a loss with what to do about it but are going to try probiotics and then speak with his GI doctor again if that doesn't help.

Tobin had his 4 year checkup and is doing very well. He's now 43.5 inches tall and 45 lbs! He had a great birthday party this past weekend:

Tobin's Birthday Cake!

Oliver has also been having what we suspect to be tonic seizures and absence seizures. We're not sure of either but they look a lot like seizures to us. We'll bring them up with the neuro at our next meeting in February. After a tough week long fever and ear infection filled with seizures and miserable-ness, Oliver appears to be feeling better and we've resumed our Clonazepam wean. On Monday morning we dropped his 1/4 pill in the am and now he is only taking 1/4 pill at night. In a couple weeks we'll discuss his progress with the neuro and see if we're ready to drop the last bit of the pill. Then hopefully we'd be on the path to drop the Sabril/Vigab. I am so ready to see what he can do without this med. He has been on it for so long I want to know what he is like off of it. I just hope he's different, and in a good way.

In between screaming fits, Oliver found some time to play the piano:

Oliver's Concert Debut

We were very happy to have family visiting this past weekend. We spent a night out with friends and coworkers, slept in a hotel and spent the morning sleeping and eating room service and watching stupid movies on tv. Heaven!

Happy New Year!

It's been awhile since we've posted, but not much to report. We had a lovely Christmas with family and everyone was fairly healthy and home so that was great for us. Tobin and Oliver both enjoyed the time with mom and dad and grandparents. Oliver is still very cranky most days. We are sort of at our wit's end and not really able to figure out what is causing him to be so miserable. We think most of the time it's gas pain and pain from his body trying to process all the fat in his diet. There might also be some reflux going on and we're going to investigate with the GI doc again to see if we should try a different reflux med or increase the dose of the one he's on. We are just trying very hard to get through each day without breaking down in complete exhaustion and frustration. When he's happy he talks and coos and laughs and it makes us feel so hopeful again.

Oliver's seizures have been getting worse. I've honestly just about given up hope on the diet. Despite a few 10 day stretches without seizures while he is sick we are still seeing 7-8 clusters of spasms per month and now we suspect he is having at least 2 other seizures types as we see a ton of staring episodes and some episodes of generalized shaking behavior. While the clusters used to be shorter (under 5 minutes 90% of the time since starting the diet), the last few he has had are back up to the hour long really awful ones. Since starting the diet he's been miserable on the GI front as he screams/arches/passes gas about 4 hours per day now. His body just cannot process the fat without lots of pain.We're not sure if he would have the same amount of seizures off the diet and if they are back to lasting an hour while on the diet, I just don't know what the diet is actually doing for him.

We tried to move to the next phase in our Clonazepam wean this weekend, by dropping his morning1/4 of a pill. He had two awful hour long seizures on Thursday and Friday and we decided to go back to the 1/4 pill in the morning and hold there for awhile before actually making the next drop. We will check in with his neuro on Monday to see what he advises but after seeing those nasty seizures we are just nervous to make that change. the 1/4 pill in the morning might not be doing anything and the seizures could be from something else like teething or an ear infection but we just don't feel comfortable dropping right now.

Thank you to everyone for all of the amazing holiday cards, they were so great to receive. We also really appreciate the generosity of our friends, family and readers of the blog who have taken the time to send us money for equipment for Oliver. We received an ipad from family for Christmas and we are looking forward to buying some educational apps for Oliver to use in his development.