March Madness

March is full of many appointments for us. This morning Oliver went to the Rehabilitation Institute of Chicago (RIC) where we see a great physiatrist. He was fitted for AFOs (ankle braces), a hip helper (basically bike shorts that keep his hips in line) and a Benik Vest (it's a neoprene vest to help give more trunk support). We were waiting for all of this through early intervention but it was taking way too long to get going. The physiatrist said they could do it all through their office and had us scheduled for fittings within two weeks! Now we hold our breath praying insurance will cover all of this cool gear. It is very vital for Oliver to have the support that his body cannot provide to avoid risky surgeries in the future. No baby should have to go through hip surgery!

Next week we'll be having our first hearing test since Oliver was born and then we will follow up that same afternoon with the ENT to check out the tubes in his ears and make sure they look good. Later on in the week he has his next (and hopefully last) ERG to check his retinal function as a part of the Vigabatrin prescription. It's required by the company that makes the drug because there is a known issue of kids having permanent vision loss when they take the drug in high doses for long periods of time. On Friday we'll finish up our week with a meeting with our EI team. The coordinator, physical therapists, occupational therapists and feeding / speech therapists will all attend to make plans going forward for Oliver's therapy. We're hoping to get everyone to agree that he needs speech/feeding and OT more than he currently gets.

March also has us continuing our Vigabatrin wean. Oliver is now on 250mg in the morning and 500mg at night. This is step 3 of our 6 step wean plan so we're about halfway done with our wean. Knocking on wood as I say this but so far we've seen about 1 seizure on average during each 2 week stage of the wean! Pretty good!

Oliver's development is still at a bit of a standstill though he does seem to have more moments where he seems very strong as we continue on the wean. He is able to get some good head lifts in while on his tummy though he cannot hold his head up for very long. His vision is still pretty bad and that bothers me a bit as I had hoped to see improvement as he got older. I have to keep reminding myself that he has a lot of chaos in his brain and that maybe some day it will get better.

His GI issues are still there but he has some good days. I think the Carnitor supplement has helped a bit and we have not had to use suppositories in quite awhile. We have a prescription for Prevacid we picked up but we haven't started using it yet because we are nervous it will bring the seizures on (it contains aspartame, a known seizure trigger). Once we get settled into this current phase of the vigabatrin wean we will try the prevacid in the mornings with the zantac at night and see if that improves Oliver's reflux issues. They aren't too bad but he squirms a ton while eating and we can only think it's reflux or perhaps the infant high chair that he has outgrown (still waiting on a feeding chair from EI, hopefully that will come along soon!)

Everyone else in the family is doing pretty well. Tobin moved up to his Pre-K classroom at school and is really thriving there. He loves his friends and his teachers. We all took a one night trip up to Wisconsin to a hotel and water park while Oliver stayed behind with Grandma Patti. Tobin loved the attention and the fast waterslides. Jason and I really had a great time being able to just focus on Tobin and playing without worrying about meds, meals or bouncing the cranky baby around the house.

We are looking forward to spring and walks outside and the chance to get Tobin to the park to burn off some of that four year old energy.