Ugh. We talked with Marie's metabolic doctor last night.
She called because we had asked them some questions, namely about trying the Ketogenic Diet for Marie's seizures, and secondly, what about her funky GI issues.
Regarding the ketogenic diet, apparently it is not as bad for Marie as we had thought. There is a theoretical possibility that the diet could provide Marie with more energy, the ketones could "feed" her brain, allowing her to be more alert. It could possibly cause slight improvment. On the other hand, if her body doesn't take it well it could be very dangerous and we'd have to stop breastfeeding. Nursing is Marie's absolutely favorite thing in the entire world. I mean, Josie comes in a close second.
So, Luke and I talked. If you know us, you probably know what we decided. We know Marie's time is short. We want her to enjoy it and be as comfortable as possible. We will not try the ketogenic diet. In our opinion, the risks are too high and the possible gain not large enough to justify it. That, and I don't want to wean her. She likes nursing so much she squeeks and flails her arms at me when she wants to. I can't take that away from her.
The funky GI issues are another story. Marie only has BM's (bowel movements) every three days or so and she has to work really hard to make it happen. Apparently this is something the doctors see. The part of Marie's brain that controls the GI tract, heart rate and body temperature is being damaged, we are seeing the results.
We're going to try Miralax first, and then try Little Tummies stimulants to see if we can get her going every other day or so. Hopefully it helps. There's not a lot we can do, just try to treat it as best we can.
The doctor said something I've known but sort of ignored, and that is that "Marie's progression to this point has been rapid". Hard to hear out loud.
So, that was the doom and gloom. On another note, Marie has recently tried bacon, peanut butter, spagghetti O's, and steak. She liked all of them. She can only gum the solids, but really enjoys to, so that's happy. Also the last three days her seizures have been so much better. Small blessings. Shan
5 comments:
Love you Shannon. It is so courageous how you and Luke are honoring Marie's time here. Your love for her is so beautiful. Hang in there.
Shannon, I think that your decisions are always going to be the most beneficial for Marie. You know her better than anyone.
My Prayers are with you, everyday.
We've never met, but maybe someday I'll be lucky enough to "know" you.
Oh, I have to tell you thank you for the story about Josie and her sayings. The whole Mickey Mouse not answering his phone and then when he did answer she called him a dirty hippie and hung up...had my husband and I in tears we were laughing so hard!
Love & Prayers, Michaelene
Hi Shannon... I always go with mommy knows best. It isn't always the easy decision, but you know what your baby girl needs. This is your time! We did the keto diet... it was good for about 6 mths. and then Joey was LITERALLY in the hospital every other week for several months before they realized his body was rejecting the fat. It is scary. He did wonders on it and it helped him... but it isn't for every one! you do have to weigh that out. I will pray that God will let YOU know, what you are to do! Hugs from all of us! -Mindy
Shannon. You don't know me, but I
read your blog at least once a week. Your courage amazes and inspires me. You are an amazing
mother and seem to be wiser than
your years. You are so un-selfish,
and I'm sure there are times when you desperatly want to be. Please
stay strong, as I know you are.
I just want you to know that there are more people pulling for you than you know. Thank you for sharing your lives.
This post just got to me.
It is horrible to hear a doctor say anything remotely negative about your child. When he said "her progression has been rapid"...well I can only imagine what that must have felt like for you. I wish I could do something.
I would continue nursing her too. That child deserves EVERYTHING she enjoys and I am sure it's such a bonding time for you. YOU BOTH NEED it.
Praying and thinking of you
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