all clear

No hypsarrythmia, no seizures, EEG clear during his head drops.

What drove us to have another look at this was the drastic increase the frequency of him doing these head drops (he was doing it nearly constantly on the day after Christmas).  We did the EEG at the recommendation of a neurologist who first looked at a video of his current head drops.  These drops are likely a result of his cerebral palsy, possibly combined with an extremely eventful Christmas Day.  It could also be linked with our rigorous physical therapy regimen that we’ve been keeping him on (lots and lots of mandated tummy time, though a 9mo old w/o cerebral palsy wouldn’t have a problem with it).

I wish we had an EEG hat for him with two big lights on top, green for ‘clear’ and red for ‘hypsarrythmic’.  Some day…


Worried again

Kaleb has been having nearly constant head drops over the last 24 hours.

He also had a few bouts of screaming while sleeping at night, where he wasn’t really awake.

We recorded a few of the head drops and sent it to the on-call neurologist.  They were concerned and wanted a 24hr EEG, so mommy and K will be up in SF for that from this afternoon on.

B and I will wait at home and pray for the best.

Still doing well!

Things have been so busy, but I just wanted to give everyone a long overdue update, with lots of pictures too =)

I finally downloaded all the pictures off my camera. Here are some moments from our 24hr EEG.

Getting Ready (yes, we asked already and they only had pink gowns)

Getting Ready (yup, we asked, but they only had pink gowns)

Mommy & Kaleb Moment during 24hr EEG

A Mommy & Kaleb Moment

Thrilled that EEG is going well!

EEG is going well!

EEG Normal & Complete!

EEG Complete & Normal!

Kaleb's Own Little Teacher

Kaleb’s Own Little Teacher

Kaleb is still doing well. The seizures seem to be controlled by the latest dosage of Sabril. We started the Early Start program and he works with his teachers weekly on all areas of development. He’s still going to PT every week as well. We’re also out of quarantine and have been able to take him out, so we’ve been going back to church, which is great as well. We still try to stay away from restaurants or smaller, enclosed areas to keep him as healthy as possible during flu season.

Our Dogs Would Never Sit This Still

Our Dogs Would Never Stay This Still

Last week was the Christmas party at the Early Start school. They have a strict sick policy to protect the kids with compromised immune systems, so it was a safe place for us to go and have the kids play/interact with other kids with special needs, as well as for the siblings to play together. It was a great experience to come together with all these families who are going through similar journeys and everyone was very nice. There was a Santa and a gorgeous service dog and lots of wonderful kids. Like usual, B was playing well with all the various kids there, but became especially close to this 3 year-old girl who also had a younger sibling with special needs. They were inseparable until the end of the night (when we had to tear them apart to take them home) and kept waving to each other until we drove away. He does tend to gravitate towards older girls =P

Our First Santa Experience Ever

Our First Santa Experience Ever

Yesterday was Kaleb’s 9-month checkup. He’s growing very well, still off the charts for height, around 75th percentile for weight, and 98th percentile for head circumference.  He’s improved a lot since the last time the pediatrician saw him, but we did get a referral for occupational therapy, as he needs more help with strengthening his oral motor skills, as well as learning the pincer grasp, etc. We were asked when we’d like to start immunizations again, but given that the DTaP (in particular) is contraindicated by CDC for Infantile Spasms, we’re still very uneasy about vaccinating even with his seizures currently controlled. It’s still a very difficult decision for us to make.

Who cares about picking out a tree when you can chase girls instead?

Who cares about picking out a tree when you can chase girls instead?

Our First Real & Live Tree (B: "Hmm, where did that little girl go?")

Our First Real & Live Tree (B: “Hmm, where did the girl go?”)

We also got our very first real, live (still in the pot) Christmas tree! We’re hoping to plant it afterwards and maybe even reuse it. We chose to get the live tree to plant this year to represent the hope we have going forward, especially after Kaleb’s excellent EEG results just in time for the holidays.

Thank you everyone for your continued thoughts & prayers! Kaleb is doing well and we’re grateful for all your love and support! Wishing you all a wonderful holiday season!

Decorating the Felt Christmas Tree

Decorating the Felt Christmas Tree