Hello Friends,
I thought you might like some cheery news for a change, as it seems like
everyone is feeling so defeated after dealing with this link between the
AAP and Ross. Just so that you know how much your work DOES make a
difference, I'm sending an update.
Quickly, for anyone new or doesn't know the story of Bobby in the PICU and
how we had to make skim breastmilk for him after he had a complication
after his open heart surgery, here's the whole, unabridged story of how we
came to skim the milk.
http://web3.foxinternet.com/lglessner/bobby.pdf
Here's the newest. Bobby and I attended a camp last week, sponsored by our
PT, for all the special needs kids he sees in his practice. I found out
that this PT actually does cranial sacral therapy. So during this last
week, he had CST treatments twice a day for 5 days.
I don't know if that's what made the difference, but I'm not going to
question it. Bobby is now drinking from a straw, sucking from a bottle
(took 3 ounces today), eating all kinds of things and not gagging or
choking. He didn't know what to do with the bottle nipple at first, but
now after a few days practice he is sucking without a problem and actually
yelling for me to give it to him.
And here's the clincher... he actually put his entire mouth around my
nipple today. Folks, I haven't seen that since the last day he nursed
after the surgery, 2 years ago. When he got on my nipple it was only for a
second and he didn't know what to do, but he actually opened his mouth for
it. He had been playing at it for a while, maybe a week, so that after he
had a turn licking it, he pointed to everyone in the room and they all had
a turn. (I hope no one ever sees this). Yesterday without prompting, he
actually pointed to my shirt, lifted it up himself, and took a few licks on
my nipple in row. To put it in perspective, this is the same child who a
year ago threw up when I brushed against his cheek, would take nothing PO,
and the mere sight of a bottle nipple or my breast would make him vomit.
So we are forging ahead, watching him get more confident and confortable
with all kinds of things in his mouth. I don't know how or if he'll make
the transition to nursing, but it doesn't really matter to me now, I really
am OK with whatever he decides. At times I entertain the thought of toying
with an SNS, or even tubing from my pump because theat's how he learned to
drink through a straw, but for now, I'm comfortable just watching it
unfold. One thing I've learned with him is that if I push too hard, set
the agenda, he only gets anxious and goes backwards.
Karleen, I thank you for your great post when I was grieving so much and
the pain was so deep...knowing what you did with your daughter at such a
late age gave me hope and helped lighten the pressure I was feeling. To
everyone else, as I've said it before, I feel honored to be in this "living
room" of lactnet with all of you.
Until the next update,
Trish and Bobby (LLL Leader, RN and MOM)
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