Jude's night
It was another hard night. I was up nine times with Jude when he would cry out or fuss. Mike was up a few times too. It took everything I had not to call into work today and trust that I laid there debating on calling in several times. I am certainly hoping that the care team talks to the doctors and comes up with a plan for sleep. In the meantime I am going to hunt liquid Melatonin. We used to crush the pill and give him that at night but despite our best efforts it would always clog the G button. Since the Felbatol eats the G button (scary thought) then the powder will just eventually clog it up.
I feel like I am losing it a bit lately. I am sure it's exhaustion that is causing me to feel this way. Anyway, let's hope for a better week. The good thing is I did get a few smiles last night from Jude in between his attacks. It was nice to hold him for a bit and to see his grin.
6 comments:
So sorry to hear of your struggles. We use Melatonin for our boy and it is in capsules, we just twist them open and pour the very light powder in a suringe and add water, it never clogs the button. Maybe you could ask for that? Take care of yourselves, Jude needs his parents to function and to be healthy.
Marie
We tried that. It clogged the button. I attribute that to the breakdown caused by the Felbatol. I had a family member find some liquid Melatonin
GNC carries liquid melatonin
Aha!!! Something I can actually help with. Try zarbees they have just straight up melatonin I believe it's a powder?
Amazon and Walmart both sell it !! Sending you wishes for a night of sleep filled with sweet dreams
Ok, good! Hope it works! ❤️
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