Eyes

I have been thinking about Oliver's eyes lately. I hate that he can't see. It might sound like one of the more minor issues considering everything Oliver has to deal with, but developmentally it really limits us.

When we first chose Vigabatrin for him as a medication we were told the risks would involve a decrease in retinal vision with long term/high dose use. I remember thinking "so what?". If it cures the spasms and gets rid of the IS, I can give up some vision. So what if he has to live in a city and ride public transportation instead of driving...so what if he needs a seeing eye dog? Those dogs are cute! I didn't quite grasp at the time that it wouldn't be his total vision but just his peripheral vision that was affected...I also didn't consider blindness to be that severe of a disability in general if he still had cognitive abilities and was physically able to walk, dress himself, etc.

Now as we're faced with accepting the fact that Oliver is going to be severely impaired both cognitively and physically, it seems rather unfair that he doesn't at least get the gift of vision. I think so many of his setbacks come from the fact that he can't see. Why should he roll over? what's tempting him on the other side, if he can't see a toy, a ball, mom, dad or brother? Why should he reach for a toy if he doesn't know it's there. How can he grab a cup and take a sip if he has no idea it's sitting in front of him? We asked for a vision evaluation from EI quite awhile ago. After months of hearing that they had no record of the paperwork we finally confirmed that our coordinator did submit the paperwork and that the vision therapists were going to contact us soon. It's been over a week since that promise. I , once again, have to pick up the phone and start bugging people. It's very frustrating. Hopefully we can get his vision eval sometime this month!

We received a referral from our developmental pediatrician to an organization called Lekotek. They have adaptable toys for impaired children and I'd love to know what they have that might help Oliver.

We did recently have another ERG to check retinal function. The results are similar to the ERG we had back in July 2010 and October 2010. They don't think his eyes are being affected negatively by the meds as of this point. That's good news and we hope that continues. In the doctor's note she mentioned nystagmus (which we knew about), IS (yup), CDG (yup) and exotropia (HUH?!?!?!). Apparently exotropia is a strabismus, or a turning of the eye. I have heard of CDG kids having this, but never Oliver. We'll have to ask her about it at our next appointment. In the meantime I've been researching the various diagnoses Oliver has been labeled with and found this great blog written by a young woman who has had nystagmus her whole life. It's interesting to hear about it from the perspective of someone who has grown up with it since birth. Click here to read more about it: The Shifty Eyes Blog

Seizure wise we were able to close out both February and March with 3 clusters each month. That's 6 clusters in the past 2 months. That's really low for Oliver, meaning we cut his seizures in half (at least) and the past 4 seizures haven't required any rescue meds. This is such great progress and is so encouraging to us to continue weaning his medications and plugging along with the keto diet.

So far for April our seizure cluster count is: ONE. we're only 4 days into the month so I'm hoping that he won't have many more but we are in the final stages of our Vigab wean and I know this could be the roughest part of it. This morning he was just off, and I could tell he'd be having a seizure at some point during the day. I was not surprised to hear my phone ringing 15 minutes after I left the daycare this morning with the report that Oliver was seizing. Today's seizure was a bit different. He had a ton of general whole body shaking throughout the 10 minute cluster of spasms. My poor boy. He goes through so much.

Tomorrow he has his 18 month checkup at the pediatrician. I assume our Dr will want to continue our efforts to catch Oliver up on the shots. I know he needs at least one more of the pentacel and the prevnar...I also know 18 months is generally the time our practice likes to give the MMR. So we'll likely do one shot per month for the next three months and then see what else we have left to give. I hope the shot does not derail our recent level of seizure control.

After the dr's appt we have a visit from a developmental therapist from EI. I'm not sure what developmental therapy entails but I'm excited to find out.

On Friday we go into RIC to pick up Oliver's AFOs, hip helpers and Benik vest. Then we'll be ready to do some shoe shopping to find REAL shoes that will fit over his ankle braces. I am so excited to get him standing a bit more now that he'll have the proper support. Fingers crossed there won't be any insurance hiccups that prevent us from getting the equipment!

I will try to get some updated pictures of Oliver with his new stuff and post them after the weekend.