Caleigh getting a bath at the hospital, tiny locks of hair stick up with shampoo and we took her oxygen off so you can see her pretty face!
Lets see where to begin...... Ok so we took Caleigh for her second EEG on Thursday morning and then saw our neurologist right after. Caleigh did really great during the test and we were able to hold her this time which made it easier for her to stay still. She did not appreciate the probes being put on her head and she wasn't a big fan of the complimentary shampoo to get the goo off after the test. The tech was a little rough for a spa version of shampooing anyways! This is the first time we have actually made it to the neurologist's office. Every time before we ended up in the hospital and he would come see us. Convenient for us, but it comes with the hospital environment. So I got to see Caleigh's EEG and she is still having seizures in one section of her brain. They aren't hurting her and her development isn't being hindered by them. "It's not the seizures that are the problem...it's the brain"......this is what we were told. We have to watch her to make sure they don't develop into grand mal seizures. Caleigh's last EEG showed indications that they might be going in that direction, but this time around the EEG looked ok and didn't show those previous signs. We're doing great as far as what we can physically and emotionally do for Caleigh to help her development. Her head circumference is below the 5th percentile, which isn't ideal, but it is still growing everytime we see our neuro. So far we are staying on the Phenobarb for seizures and not upping the dose. We are planning to go back for another EEG in about 2 mths.
Physical Therapy and Occupational Therapy have started coming to our house. Early Childhood Intervention, a government program, is slow and overloaded with children and not enough therapists. ECI was so overloaded that they contracted out to Therapy 2000, a private company, to do Caleigh's OT & PT. We will have two visits of OT a week and one visit of PT a week. Eric and I are also looking into alternative therapies as well, but as of now we are so overloaded with appointments that we might wait till things settle down. When the OT & PT came for evaluations, they told us that Caleigh was below the 5th percentile in height and weight, but that her proportions are in the 70% percentile. They also told us that she is developmentally at 2 months old, something we already knew.
Sitting in her decorated stroller, in the hospital, after the March for Babies Walk
On to the fabulous news...... We had an eye doctor appointment today......and.......drum roll please........ 'bang, bang, bang'........
Caleigh's eye's are developing normally! What, our baby has something....gulp..normal! The eye doc said that she has normal baby farsightedness and that it should get better and go away. Most children with this don't even need glasses. Eric and I were worried about CVI, cerebral vision impairment (due to her PVL), but the doc said that everything looks great inside the eyes and it shows no signs of it. The only thing we really need to watch for is if her eyes start to cross a lot, which would be a sign of overly tight eye muscles. It's so weird to hear good news from a doctor. All of our docs give nothing but bad news with the hint of optimism. We really questioned him about our 'abnormal' baby with normal eyes! It's really sad when all I expect out of doctors is some kind of hurdle or hoop to jump through. It goes without saying that we were so excited and the good news really made our day.
And finally, Has everyone seen this? We were on our way to the eye doc and I spotted this mound of metal. Yes, it's a bad drive by pic of the new Dallas Cowboys stadium, aka monstrosity! It's huge...enough said. Plus, I don't get out much anymore!
We're headed to Pitt again......tentatively, May 4th.....we'll see what Caleigh thinks about the new plans.