hi everyone! my name is Kaylin and i am mom to Karly 22 month old with WHS. and mom to joseph 4 year old typical trouble maker. 🙂 sounds like my daughter has a lot of similar reflux issues and it is very common after a bolus feeding for her to want to vomit. she is on prevacid and seems to do fine on her night feeding on the pump as well and jar baby food too. only her pediasure makes her wanna reflux, also has anyone noticed when you try and vent the g tube a lot of stomach acid comes out first? that happeneds in Karlys case. i see a lot of yellow stomach acid come out first… she also has been diagnosed to have a sub-mucosa cleft palate resulting in a g tube when she was 3 months old after getting aspiration pneumonia. she started having seizures at 4 months and just recently has been having a lot of break through seizures and it can be very scary cause she stops breathing and turns blue and winds up having a 2 week stay at the hospital. she has learned to crawl now and were very excited. shes not verbal at all, were lucky if she humms a little, but we just started speech therapy and were hoping to teach her to communicate in other ways. i took a baby sign language class and now were just making a bunch of signs all the time for her and she thinks were so funny doing it. it makes her laugh. also she has just started grinding her teeth… does anyone’s child do this? she is very happy and loves to play and chase after her big brother. she has a hemangioma on her head and was born with clubbed feet that have been treated, she is getting PE tubes placed on the 20th cause she has pressure behind her ears, we hope that will go well. she was born with 2 holes in her heart, a PDA and a ASD, both healed on their own by the time she was 1. they also found with her 4th chromosome her 11th chromosome filled in the deletion on the short arm, so somehow it replaced in a way her fourth chromosome to make it as long as it should be… were still learning about this. anywho, i would love to chat with some of you and hear your stories. any advice would be greatly appreciated.

thanks Kaylin & Karly

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4 Responses to Karly

  1. Anonymous says:

    Hey Kaylin, Riley doesn’t have stomach acid come up when I vent her, but she does have a lot of mucus right now. I am hoping at some point our kiddos grow out of this reflux business. I feel so bad for them to deal with this for so long. I think I saw on the yahoo group page that you live in Hemet, CA. My husband is from Hemet, this family still lives there. It’s a small world. So glad to hear how well Karly is doing. I can’t wait for Riley to crawl.
    Hannah

  2. Kaylin says:

    Hi Hannah, wow it is a small world, usually no one has ever heard of hemet. its ok to live here, were buying our first house in the next few months and looks like were gonna stay here. I really hope her acid reflux goes away too, I feel so bad when shes having an episode and i dont know why her meds arnt taking care of it better. it doesnt seem that it changed anything at all, she still has the same amount of reflux being on prevacid. shes such a happy baby for everyhting shes gone through, shes my hero.im so happy we have the Loma Linda Childrens Hospital so close. they have helped us so much with all of Karlys early intervention programs. and she loves all her therapists. hope to hear from you soon. how old is Riley? does she have seizures?

    Kaylin & Karly

  3. cordillh says:

    Riley is 13 months. She does not have any seizures and we are praying it stays that way. Riley’s reflux is horrible also, but like Karly, it doesn’t seem to bother her, she is quite content all the time. Hoping she grows out of it soon.

  4. Theresa Miller says:

    Hi Kaylin,

    As far as the teeth grinding, Ty does it too but only when a new tooth is emerging. It usuallly stops within a week or so. Lots of the mom’s on the listserve have posted questions about teeth grinding. You may want to ask the Dr about a myomunchie (sp?). I have heard that it helps.

    Good luck,
    Theresa

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