The OT (occupational therapist) came yesterday afternoon and was clear about one thing- Grant must learn to drink from his bottle again. Using the syringe or some other method will not teach him the skills necessary to eat food in the long run. Plus, she said he has a good breath-suck-swallow. Basically, he has potential. But, when she tried to feed him by bottle, she saw the problem that we are having. She still wants us to try the bottle every time dispite his protests.
At this point she said we could finish the bottle any way necessary (syringe), but she said when we are ready for "tough love" (only the bottle) then we should get him hooked up to an IV and just do the bottle. This involves nursing care, possibly hospitals, and a lot of screaming. I'm still hoping he catches on and we don't have to go that route. She had one other possibility- a special, really expensive bottle. So, my sweet mom drove all over southeast Michigan last night to find this rare bottle. We're going to try it this morning.
Grant is still a little dehydrated. (He falls asleep by the end of the syringe game so we can't always get his full feeding in.) He has lost some weight and he's still off two of his meds that he needs to get back on ASAP. Please pray for endurance for Jim and me as we enter this new phase. And continue to pray that Grant would like his bottle once again.
He's still doing great off the oxygen during the day. (We have to keep some tape on his head to attach the oxygen canula at night.) I'll post some pictures later of our child without tubes for the first time!
5 comments:
Tough love is hard! I hate it, but it's so necessary. You struggle with the bottle and I remember struggling with teaching our kids to sleep through the night! It was no fun listening to the screams for an hour! But, now they slepp. Thank God. Grant will learn. Stay strong and know that prayers are being said for you by so many.
Bleassings,
Julie W.
You guys are amazing parents!!! Such patience and determination. Grant is one lucky little guy!!
danielle
kevinanddanielle.blogspot.com
Hi Shannon,
I E-mail your Mother-in-law a suggestion I used in a similar situation. I do not know if she forwarded it to you. It might work.
He's a smart boy...he's going to figure it out...I know this is frustrating....but learning is usually one step forward and two steps backward....for all of us..
He's a proclaimer!!
Love,
Sheila and Rog
Shannon and Jim,
Yes, tough love is very tough---for Grant and for you guys. As a parent, I think it is tougher on the parents many times, than the child!
Shannon, your Mom is so wonderful in her support for you, but that is what Mom's do instinctively---drive all over, are available, do whatever needs to be done.
At the risk of sounding redundant, you guys are the best and we are still praying, praying, praying.
Love,
Janet and Mike
Hi Shannon and jim,
I really hope the new bottle does the trick! I also wonder if the OT mentioned a cross-cut nipple for Grant? The opening is bigger than a small hole, and sucking doesn't have to be as hard. However, Grant does suck well, and wouldn't want him to get used to not sucking hard. I used these nipples when my son had several surgeries for his cleft lip and palate some 20 yrs. ago. So, I don't know if they are still used, or if it would be beneficial to Grant or not. Maybe the OT could answer that.
praying with you,
chris, rn
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