We have had a bit of a rough week here at the Stone house....Isaiah has clearly hit a growth spurt, which is a great thing, but it also means his medicines have to be tweaked. He started waking up again every hour at night and was wide awake for hours at a time. We spoke with Dr. Norman who had us up his evening dose of Clonazapam to see if that would help. The thought was that since he had been eating so much and growing that his dose of medicine was probably not strong enough for his weight now. Dr. Norman said that is what is hard about babies with epilepsy, they are constantly growing and you are constantly having to tweak the medicine to keep up with their growth. So, upping his evening dose didn't do the trick, so we then upped his afternoon dose and it "seems" to be doing better. :) Last night was a fairly good night. He was up 3 times and went back to sleep pretty easily each time. We have started Isaiah on his new medicine as well, but we have to slowly titrate this medicine and he will fully be at the correct dosage next week. Next week we can start to wean him off of the Clonazapam and hopefully the new medicine (Zonasamide) will work and this will be the medicine he will be on forever.
Other than the sleep issues, the boys are doing great. They both continue to grow and amaze us every day! Isaiah is now getting on all fours and rocking and doing an army crawl. He will also "scoot" from one end of the room to another! This is all new to us because Jackson never crawled....he just started walking when he turned one.
Jackson is being his hilarious self. That boy loves playing basketball day and night! I posted a video of him interviewing his dad about the All Star Game. He is such a sponge and he soaks up everything he sees and hears. I am really having to watch what I say these days. The other day Annabelle was barking and Jackson yelled out, "Annabelle SHUT UP!" Oops. That one is totally me. EEK!
All in all, we are still feeling so blessed and are thankful to God for every hour of sleep that we get. We know this season of life will pass by soon, and are still continuing to take every day as it comes and cherishing each great moment.
Love to you all and hope everyone has a fabulous week!
Lee Anne
1 comment:
Praying for correct dosing and for his sleep to regulate again. You are such an inspiration!
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