2013 has been a year of many blessings and we are so thankful for this year and for all of you for being a part of our lives. We wish you all the most wonderful holiday season and a happy new year! May the spirit of the season fill your hearts and may you and your loved ones always be blessed. Merry Christmas and Happy Holidays!
In just a little over a year since Kaleb’s diagnosis, we have more to be thankful for than we had ever imagined. We’re so grateful for God’s blessings upon us this past year, and we’re eternally grateful for all of you, our beloved family & friends for supporting us every step of the way. Happy Thanksgiving everyone!
This week, Kaleb started to point to things! He can positively ask and show us where things are now–not a lot of things so far, but it’s a skill that he will continue to progress in!
Then on Thursday, he made two huge strides. During our weekly visit to the library for their story time, where they also do songs with hand motions, Kaleb did his first motion on his own/without my prompting by opening and closing his right hand like twinkling stars when they sang “Twinkle Twinkle Little Star”. He has been doing the hand motions for Bumble Bee song for a while but haven’t picked up any other ones until he woke up that morning and it just clicked! Then we were playing “Itsy Bitsy Spider” in the house and he turned his right hand back and forth like the spider crawling up the water spout! Then, when I was making dinner that night, Daddy excitedly got my attention and I turned around just in time to see Kaleb get on his hands and knees and crawl about 4 steps!!
We’re so amazed by his progress and are so proud of him!
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.
The anniversary of our first trip to a neurologist with Kaleb is coming up on 9/5.
If you’d told us on 9/8/2012 that Kaleb would be doing as well as he is now, we would have been so absolutely relieved. It’s hard to even fathom those times and our feelings upon reading of the profound retardation which affects such a large portion of those who have suffered Infantile Spasms.
We are so thankful.
Since weaning, Kaleb’s development has really taken off!
In the past week, as we shared earlier, he started saying Mama (although he has stopped saying in front of me, people have told me that he says it when he’s looking for me). And he’s understood the word “no” for about a month now but in the last 3 days, he has successfully learned to clap and kick on demand! He tries to sing his favorite “I’m bringing home a baby bumblebee” song, complete with hand motions (aka folding his hands together while going, “buhbuhbuhbuh”). He is scooting very quickly now, can climb up on (low) things fairly well, and is starting to pull up to stand with our support/help. We’re very proud of the progress he’s made! We’re still working on sitting up on his own but he’s making some good strides there too.
“Aquatic therapy? I was born to do this!”
Coincidentally, his aquatic therapist (here in the pic with him) also has hemiplegic CP affecting his left side, so he really knows firsthand what works and helps amd swears by aquatic therapy, hence has dedicated himself to helping kids with their developmental goals.
He also started aquatic therapy last week and is loving it and doing very well! This little bub loves the water–like mother, like son 🙂
Kaleb appears to have a minor case of insomnia since finishing Vigabatrin. He reduced his naps pretty dramatically and had a few nights of “whee, it’s 4AM, what are you guys doing asleep when you can scoot around and have fun?”
It really seems like he’s using his left hand more, but he’s changing constantly so it’s hard to tell.