Updates

Kaleb has been fairly stable since his last EEG, but still continues to have those mysterious head drops. How do we know the difference if the drop seizures come back if they look exactly the same as these supposedly-normal head drops?

Developmentally, he has improved, even pointing (by copying me) yesterday! However, he’s still at a 3mo old level for tummy time and still does not push up onto his hands and knees, still not rolling over from back to front. However, his sitting is very strong and his assisted standing is fairly good too. He also uses his left hand a bit more and opens it more. He feeds himself puffs very well with his right hand (pincer grasp too!) and can grab the spoon from my hand into his mouth. However, he cannot/does not ever look at the food. Even when he misses while grabbing for the puffs and gets frustrated and cries, he is unable to look down to see where the puffs are. When observing him, he acts as if he is blind.

We have seen an opthamologist twice already with no answers (as per our research, we suspect cortical visual impairment, which is extremely difficult to diagnose) and have appointments with two other opthamologists in February and March, as their schedules are so backed up. We also have a feeding assessment on Wednesday and a referral for OT. We also saw an acupuncturist and contacted some stem cell researchers but are still weighing the pros and cons of alternative treatments, which is especially difficult right now since we’re afraid to do anything different since his EEG is normal and the seizures have stopped. We’re also waiting to see if we can get a speech therapist referral, as Kaleb is not babbling any consonant sounds.

So for now, the focus is on the various aspects of his development. He’s grown and improved very well at his own pace and we just want to continue to help and strengthen him as much as we can and we celebrate every inch-stone along the way.

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Clapping

This morning I woke up to someone clapping. It was Kaleb! He had his hands OPEN too! A real clap! He still reverts back to a fisted one but at least he did a open handed clap on his own today! He’s also slowly learning how to push up on his hands a bit on tummy time. Let’s continue to cheer and root on this strong little boy!

Happy New Year

I thought: “I hope this year will be better than last.”

Then I immediately thought: “Isn’t that setting a very low bar, considering Kaleb developed Infantile Spasms last year?”

But there was something tremendously awesome that happened last year which far outweighs Kaleb’s infantile spasms.  Kaleb was born last year.