We had an appointment with Kaleb’s neurologist two days ago. Being that Kaleb is stable without any medication, the neurologist declared we don’t have to see him again for a while–don’t get us wrong, we adore our neurologist and would love to see the guy, but not seeing him means that Kaleb is doing well =) In fact, if Kaleb continues to keep things up (which is our hope), we won’t have a clinical visit with him for another year (he will still have to follow-up yearly because of his brain injury).
But Kaleb’s neurologist is active in the local epilepsy foundation chapter, so we’ll probably see him at an event, like their upcoming gala and the epilepsy walk next spring. We’ve never attended any galas before, but seeing how all of the proceeds go to the foundation towards working a cure and supporting those with epilepsy, we’re considering attending for Daddy’s birthday (it’s officially on his wish list now, after our neurologist informed us of the event), as it is happens to be right around the same time.
As might be expected, we’re ecstatic with this wonderful news from his appointment!
Kaleb can say mama again! Some of you remember that he started saying mama two months ago in July. But after a week of saying it, he stopped completely and we didn’t hear it again until this week. I’m so happy to hear him start saying it again!
First time I’ve witnessed it… Kaleb transferred from the lego table to the couch without getting down and scooting over.
They’re within reach, but still a big moment. 🙂
It was the third night that we had observed little 5 month old Kaleb dropping his head and crying. After we discussed it briefly every night and passed it off as painful gas, I started to feel it–that sinking feeling that something might be terribly wrong. A quick Google search… and for the very first time in my life, I heard (read) of the illness “infantile spasms”. Little did I know that our worst fear would become reality, with Kaleb being diagnosed within 24 hours.
But September also signifies our faith, hope and our dreams as well, as we will celebrate our 5th wedding anniversary this month. And exactly one year ago was also when we potty trained B–how remarkable that he was successfully potty trained with the grandparents’ help despite all that was going on with us in the hospital with Kaleb. And as we are just hours away from the one-year mark of the day that Kaleb was diagnosed with catastrophic epilepsy, we also realize how far we have come.
We realize how blessed we have been and how, beyond our wildest dreams, with every passing day, our baby is so much closer to defeating IS. Our son was labeled to be in the “worst prognosis group” with symptomatic infantile spasms–even a Stanford pediatric neurologist advised us to start accepting the prognosis as Kaleb has bilateral brain injury, which usually fares poorly for the child’s development. Yet he responded remarkably well to his medication and never ceases to amaze us with his developmental progress every day.
God has answered our prayers and more. We are blown away by His grace, faithfulness, and healing. Many thanks to our loved ones, family and friends alike, who have supported us and been with us through it all. Many thanks to Kaleb’s therapists and teachers, who are truly God-sent–they help Kaleb so much with everything that he is learning. We still have a long road ahead of us but we have more hope and faith than ever.
All I hope is that in the end, we can say:
“I have fought the good fight, I have finished the race, I have kept the faith.” (2 Timothy 4:7 NIV)
And we will keep fighting, keep working, and keep believing, as we are making more progress than ever from IS to WAS.