That would be me...the one with the issues.
So, now that I've had some time to process all of the information from the Feeding Team/Swallowing Center, I'm not totally sold on the idea of the lots-o-oscopies. The more I have thought about it, the more I am wondering if maybe this is one of those things that may require just a bit more time and perseverance? A bit more patience on my part? Maybe I haven't been giving Dylan enough opportunities to learn how to chew and to learn how to swallow? Maybe it's me with the problems, not him. Bah. Who knows.
I just got off the telephone with Dylan's pediatrician to ask her thoughts on it all. Naturally, wouldn't you know that Cassidy decided that the minute I called her, would be the perfect time to scream, yell and cry? The perfect time to demand "More puffs!" over and over again? And while I must admit, I did attempt that whole silent mean face thing in a desperate attempt to scare her into being quiet, it didn't work. I had to resort to closing myself in the bathroom with Dylan in my arms while Cass continued to pound on the door yelling, "Mommy! Get out here!". Ah, nice. So, what I think the pediatrician was trying to tell me was to go ahead with the swallow study on Friday (even though we are still not quite catching on to the whole sippy cup thing...ahem...), see what the results are from that and go from there. If they still suggest we continue on with the scopes, then I suppose that's what we'll do. They are scheduled for Monday, so we shall see. While his pediatrician does recommend the scopes, she also understands my hesitancy. I guess I just don't know if the benefits outweigh the risks here...and how, may I ask, am I to know for sure without actually doing it?
Good grief. Where in the world is my parenting manual? Because today, my friends, is one of those days that I desperately need it.
12 comments:
You're doing great, Laurie. We all write the manual as we go -- that's what no one tells you.
I feel you on the demands of the 2 year old when you are on the phone. Always seems to be when they need you the most. You are doing great, go with you gut on the scopes. Good luck with the swallow study.
Ugh. I was on the phone with the hospital to get B preregistered for his swallow study on Friday (copycat...LOL), and Andrew proceeded to yell from the other room, "I NEED TO PEE PEE AND POO POO!" Lovely.
I understand your hesitancy. It is a lot for Dylan to have to go through. I think you've been plenty patient and have tried as much as a mom can. He probably needs something else, hence the lots-o-scopies. I'd just want to *know* if it were me. But go with your gut; the Mommy Intuition is rarely wrong.
re: the manual - if you find it, please send a copy to TX.
I asked Jackson the other day, "Can you tell me why it is that y'all are fine until Mommy gets on the phone?" And he said, "Well, Mom. That's when you're not paying any attention to us."
just an FYI - they should be able to do his swallow study with both a bottle and sippy and/or several types. Bring all the feeding items you've tried at home, so maybe he'll feel like there's something familiar. Please let me know if I can be of any more help. Good luck! Katie
I understand your feelings. We were contemplating having Lily's tear ducts probed the end of this month. I know after OHS, it's not that big of a deal, but I just can't bring myself to do it. I've been massaging the little ducts like crazy in order to prevent what might be inevitable. Our little ones are just subjected to so much...I just want to take one thing away!!!!
I had to laugh about the mean face- it works well with Ainsley but she is 4, forget it with Harper! I've had to remove myself many times with both of them screaming for me! Isn't motherhood fun??! I hope the swallow study goes well- we had one for Ainsley and unfortunately it got us no where- she just got better with time.
I would kill for the manual too, Laurie. Do you think they have one at the library?!
You are doing great! Hugs, mama!
Hi
I know how you feed. I need that manual too. I feel your frustration as I am dealing with a feedign team too. I am trying to wean my son from the ng and get him eating.
I have a two year old that constantly answers the phone when doctors and therapist call. And yes the mean silent face doesn't seem to work does it? Oh the joy and stress of it all.
Best of luck on friday.
ps one therapist told me the lids/caps from breast bottles make good cups to sip from(as they are small). Haven't tried it yet..but may
Wysdom's mom
4wysdom.blogspot.com/
Ahhh, I totally get it, on so many levels. The phone thing - oh. my. gosh. This is why I NEVER talk on the phone for enjoyment anymore - only to doctors and such when I HAVE to, and then I must lock myself away from the kids downstairs. And the hesitancy to do testings . . . yeah, I get it.
(((hugs)))
Good Luck!! I hope that you find clarity, or at least come to a decision that brings you peace.
It is so hard to be completely responsible for a little person with no real way to know for sure what's best!!
Follow your instinct!
Hi Laurie! I feel your frustration and pain. I have been working with Liliana on eating since she was born. She never took a bottle very well when she was first born, then she had to use an NG tube, and now we are on the G-tube. Lily had 2 swallow studies so far and I was able to be present at both. I agree with other postings that you should bring anything with you that would be familiar to Dylan. I think you will find that the swallow study will be informative because they will be able to see just exactly how he responds to various consistencies of liquids. After Lily's last study they decided that she couldn't handle thin liquids, but that if we added something called, "Simply Thick" to her formula and then gave it to her through the sippy cup that that would be ok. Has she caught on to the sippy cup yet? No way. Is it frustrating for me? Absolutely. She can eat Stage 2 baby foods but she still struggles with that. I know it is extremely hard to deal with a child that can't eat or drink but just know that you are not alone and don't beat yourself up over it. Just do what you can do and Dylan will get it some day and in his own time. No endoscope or any other test will make him go faster. It may ease your mind though to rule out any other health problems. Good luck and you are in my thoughts and prayers.
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