New Ideas...

Taylor's presentation to Dr. Dulac was this morning. I've never seen so many doctors in one room, all eyes on my little girl. Dr. Sarnat had given him her history beforehand, then Dr. Dulac took some time observing Taylor and examining her before he said anything. He came across very warm, very gentle.

Taylor's been on Topomax since August and based on the EEG from 2 days ago, it's not doing anything to control the seizures, so Dr. Dulac's recommendation...medication wise...was to wean her off it. We had already started to wean her off the Sabril, but his suggestion was to actually bring it back up and increase the dose slightly. All the information that we previously had about Sabril was that it was to be used short term because of the side effect of toxicity to the retina, causing peripheral vision loss. He indicated that those side effects were more to do with adult patients, not children. Further, it was beneficial to give it once a day, in the evening just before bed, rather than twice a day as we had been. Reasoning being that the drug would work its way through the bloodstream over the next several hours while it's dark and her eyes are closed, but it still acted as an anti-convulsant for up to 48 hours. If this change doesn't have any effect on the number of seizures over the next few weeks, his next suggestion is steroid treatment.

Dr. Dulac stressed that the most important thing is to get the seizures under control, because the next high risk period is 2-3 years of age, a time where there is such an incredible amount of cognitive development. Such frequent seizure activity is hindering Taylor's ability to develop, so seizure control has got to be the focus.

Unfortunate Confirmation :-(

Well today was the EEG. I sat there holding Taylor after all the wires were attached to her head and recording was under way. The technician was watching the screen, and asked if Taylor just had one of her jumps. I said "yes" and she responded "okay". A few seconds later I said "there's another one" and she responded "uh huh". So I asked her straight out if they were seizures. Her response was "I'm actually not allowed to say, let's just say this is a VERY productive recording". I felt sick as I sat there thinking of how many months we've been watching Taylor have these seizures and we had no idea.

Seizures???

We saw Dr. Sarnat today and addressed a concern that we suspect Taylor has been having seizures for quite some time, but we didn't realize it.

At therapy recently, Taylor's physiotherapist noticed one of them and said she thought that it looked like a seizure. She has these startle type jumps as if she heard a loud noise across the room, but she has them constantly even in complete silence. When she said that to us I got very nervous, because she has so many of these, constantly all day long, and we've been watching her do that for months. Gulp. Never for a second did we think those could be seizures.

So Dr. Sarnat is sending Taylor for an EEG...TOMORROW...now that's impressive. What's more is later this week she's also being presented to a visiting doctor from Paris. His name is Dr. Olivier Dulac, a leading Pediatric Neurologist and world expert in Infantile Spasms. What an incredible opportunity to get the input of another seasoned Neurologist.

Mommy Went Shopping...

So Francis said that if I ever bought shoes for Taylor I'd be toast (because Marissa has quite the collection of hand-me-downs).

HOWEVER, Taylor's physiotherapist said that it's important for her to have shoes with good support on when she's in the standing frame. AND Marissa's hand-me-downs don't include proper shoes in the right size, Taylor's feet are pretty tiny.

Clearly, under these circumstances, a shopping trip was necessary. Taylor is the proud new owner of her first real pair of shoes. And aren't they gorgeous! Daddy can't even complain because they were on clearance for JUST $16.25 (regular $65)! What a bargain, I should have bought more :-)

Bad Hair Day...

Have you noticed Taylor's crazy hair and wondered what the heck we were doing?!

Well let me clear up a couple of things. No, there is not product in her hair. No, we are not intentionally going for the "faux hawk" look. But YES, it has a mind of its own!!! It's quite long all through the middle and as much as I comb it down after she has her bath, it just springs back to life as soon as it's dry ... too funny! My friend Kim said that it kinda looks like Mt. Rundle!

Little Miss Rundle ... crazy hair or not ... you're beautiful to me!

Torture Device???

Does it look a little like poor Taylor is being punished?!?!

Not really! We were at Children's today for therapy and Jeanette brought in a standing frame for Taylor to try out. Taylor needs to work on standing and this is what she needs to help her since she can't do it on her own. It's time for her to start weight bearing through her legs and work on developing muscle strength. We're supposed to try it for 15 minutes twice a day and build up to an hour a day. We were able to take it home and we can hang onto it until we can get one of our own ordered. Our next appointment we'll be looking at the "Buffalo" and that's likely to be the one we'll get.

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Not the most attractive addition to my living room, but it sure is nice to see Taylor upright instead of lying on the floor! She seems so much bigger! Marissa thinks it's pretty cool, except she keeps referring to it as "the ugly thing" ... I think she heard me describing it as kind of ugly ... oops!

Just Keeps Getting Better

Another great day for Taylor. The Occupational Therapist from CNIB (Lara) was here this morning for a home visit. She did a contrast test on Taylor to see how much contrast Taylor needs to capture her visual attention. She did awesome!!! The test was simply showing her an assortment of faces on big white cards. The first one was a black and white face, which is 100% contrast. They went down from there and the faces looked like a lighter and lighter shade of grey on white down to the very lowest which was nearly white on white. Taylor managed to see all the way down to only 5% contrast!!!! The 10% one was better, but the 5% contrast did capture her attention. Way to go girl :-)

Lara said that we can start working on establishing object permanence so that when Taylor drops an object and it goes out of sight/sound, she will learn that it is still there and that she can find it again. By using objects with noise like bells or rattles or squeaky toys, when she drops it we can make its noise and see if she turns to look for it. If not we can guide her hand and or body towards it. In time she will be able to find the object again after dropping it, rather than just thinking it's gone.

Holding on Tight!

Look at my talented little girl, doing a NEW first. She's holding onto her sparkly wand with BOTH hands and holding it up high and she's totally focused on it. Taylor has been holding onto the right item (has to be small enough) in her left hand for short periods for a little while now and recently started doing the same with her right hand for even shorter periods. Last week she held onto the wand with both hands and today I managed to get it on camera. I'm a very proud mommy, these little milestones mean SOOO much.