More worries

Joseph had his appointment with his GI doctor on Wednesday and I shared my worries with her: for the first two weeks since switching Joseph to the new formula, he was golden. Then week 3 he started to have diarrhea, and then week 4, the mucus started up again. He would poop up to 8 times a day and it was all liquid and mucus. Joseph seemed to have developed an allergy to this hypoallergenic formula. My worry is that he is going to develop an allergy to any food item he is exposed to and she seemed to think along those same lines. He's still not on any solid foods. She had me switch him to a prescription formula called Elecare and we postponed his procedures and intestinal biopsy until January 31st. We started the Elecare on Wednesday and I have yet to see any improvement - when we had switched him to the previous formula, the improvement was almost instantaneous. He just seems to keep getting worse; the past couple days, his reflux has gotten so bad to the point where he chokes on it and it reeks of a very strong acid. I can tell it's burning him because he'll twitch and make faces. It's different from his normal spit-up. They all day today, his poop was dark green and sticky. This evening, he started having blood in his poop. I called the GI on-call and he seemed to think that he can't have a reaction to the Elecare and it was probably left over from the previous formula and that I should just keep an eye on him and he'll get Joseph's GI doctor a message for tomorrow. I'm not so sure I agree with him, but I'm just going to have to sit with it. Joseph's acting fine and doesn't seem to be in distress at all; I'm just worried because we haven't ever actually seen blood in his poop until the last two this evening. I really hate this awful feeling of worry that is just twisting my stomach into knots. There's nothing I can do to help my baby boy, I'm just watching him get worse and worse. I have to wait and see what his doctor thinks tomorrow. It's out of my hands and this is a difficult feeling to sit with. I keep trying to remind myself that it may be out of my hands but God still has his hands all over it. I just can't wrap my head around why my baby must suffer like this. Whenever I start to wonder why God allows this, I am reminded of the answer I received so many months ago: We had just brought Joseph home from the hospital and I was still having a difficult time processing through all the trauma of what we've been through with him. I was lying awake, just wondering why God would allow such horrible suffering to an innocent baby. I was reliving all the horrible pain he was in and I could recall offering up all of his surgeries and his suffering. I was overtaken with a sense of calm understanding and I just knew the answer, as though it had been whispered to my heart. God allowed this to happen to my son so that his suffering could save souls that would have otherwise not made it to Heaven. Now each of these souls who are rejoicing in Everlasting Life are devoted to praying for Joseph and guarding his soul for all his life. It's still so difficult to accept my child's suffering, but I do find peace in knowing that God has him cradled safely, regardless of what happens.

Two steps forward, one step back

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!