Jenelle's Journey

Well it has been a tough 2 weeks for all of us, but yesterday we got some great news that really improved things. A few weeks ago, I toured the Blind Children's Learning Center in Tustin, which is a facility that offers therapy services to blind children, partially blind children and children with special needs. They offer an infant development program from 9 to 12:30 each day, as well as daycare before and after. I was amazed at how wonderful this facility was. In some of the classes, the ratio was one teacher to one student, and sometimes one teacher to two or three. Their volunteer support was amazing, and there were many people helping out. It is a wonderful environment for children like Jenelle, so I asked Regional Center to consider approving Jenelle for the program.

Yesterday, I spoke to Jenelle's case worker from Regional Center they have approved 2 days a week of the infant development program for Jenelle! I was hoping for at least a day, so 2 days is fantastic! Because Regional Center does not provide "duplicative" services, unfortunately this means Jenelle will no longer be seeing the Occupational Therapist we started with back in August. Her OT is wonderful and really loves Jenelle. I broke the news to her yesterday, and she was sad, but also very happy for Jenelle as this program will be of great benefit to her. In fact, Jenelle's occupational therapy will increase from only an hour a week to 7 hours a week! She will still keep the same Physical Therapist and will still get that therapy 2 hours a week. Also as I mentioned, the Blind Children's Learning Center has daycare before for before and after the program, and of course, this daycare is more specialized than the daycare Jenelle is currently at. We love our daycare, and they have really done so much to work with Jenelle and involve her in their activities. She will be staying there the other two days with her brother, and with Grandma on Tuesdays.

When I first met with the Blind Children's Center, I was worried that Jenelle wouldn't qualify because of her vision. Fortunately they have children with all types of special needs. Jenelle's vision is "delayed" and we still have not determined whether or not she will suffer Cortical Visual Impairment (where the brain does not compute what it sees) which is very common among children with seizures, so this is really the best place for her.

Since getting out of the hospital last week, Jenelle started to regress a little and show a "doped up" state. I spoke to her Neurologist at the beginning of this week, and he suggested it might be the new drug Topomax and we decreased her dose by half. Apparently that did the trick, and she has been her usual self ever since. At their follow up appointment with her pediatrician for the Roto Virus, the doctor noticed that both kids have ear infections. You wouldn't even notice it in Jack, but not that I realize her ear is infected, it explains why Jenelle has been a little cranky of late, and has been waking at night. As soon as she is healthy, we are going to meet with Dr. Phillips to start the Ketogenic diet.

One last good thing I think I forgot to mention in my last update is that Jenelle's last CT Scan showed improvement! On her original MRI and her CT scan back in October, Jenelle has some spaces in a certain part of her brain. They were noticeable, but apparently within normal limits - something they were watching. Her last CT scan showed that these spaces are smaller, which is definitely great news!