I'm worried Joseph's improvements have been short-lived...his GI system is starting to act up again. He did so well for the first couple weeks of the new formula but now his poops have become more diarrhea than not and recently more mucous is showing up. His breath is starting to take on that fermented odor again, he's starting to choke on his reflux, and he's pooping 7-8 times a day. I'm praying it's something simple like teething, but it just doesn't explain away all these resurfacing symptoms. The skin of his bottom is so raw, there's patches where there is no skin left and it bleeds. I've started using wound care dressings that his visiting nurse provided when we had to deal with this after bringing him home from the hospital. They're helping to the point where he is not screaming in pain with each diaper change.
Joseph has his appt with the GI specialist on the 11th. I really doubt she'll want us to start food with him, especially with this recent turn. I imagine she may want to do another stool study to see if there's still blood in his stool and then, depending on that, she has mentioned doing an endoscopy and colonoscopy and doing biopsies of his intestines. She may just skip to that, or she may suggest a different formula for starters. You know you have a special-needs baby when you look forward to doctors appointments and specialist appointments. The stress of not having a handle on how to help my son is very wearing. I find my strength through my husband and the prayers of family and friends. Thank you everyone, for giving us the continued prayers from which we draw our strength and perseverance. Even though our journey has been two steps forward, one step back, in the end, we're one step ahead of the last.
On a brighter note, Joseph is 8 months old today! What an amazing gift he continues to be! He's getting so good at sitting on his own (for 30 seconds, until he gets excited and forgets to balance!) and he can roll side to side. His newest achievement is the baby sit-up: if I hold down his legs, sometimes he can pull himself right up to a sitting position without grabbing onto anything - his abs are definetly doing better and getting stronger. He's almost rolling from his back to his tummy but his arm keeps getting in the way. We can tell he wants to crawl so badly! We're still working with OT and PT every week to help with his hypertonicity and development. He's still pretty stiff and still having a lot of trouble grabbing and holding things and sometimes he forgets to use his right arm.
Weight check on Wednesday!
Happy New Year!
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