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Hi veryone!
June is here already! i hope things will be a bit better for everyone by the end of this month. Kendra just turned 10 months old. things are better for us and i hope for continue progress, even if just steady and slow.
Denise,
iam so glad her reflux is getting better
I don’t want to jinx iether,but it might be that she’ll outgrow by 9 months!! that would be wondeful . I hope your GI Appointment goes well. please keep us posted. i love to hear about the LO progress, ither for support or for joining the celebration.
Yay! Babies feeling better! I hope things continue to look up for both or your little sweeties.
Denise, Good luck with Dagney’s gi appointment today.
Leo, Is Kendra eating anything by mouth yet? Is she gaining lots of weight?
Christine,
she is drinking 1-2 ounces of neocate by mouth w/o flavoring
. She is also trying to feed herself (she would not put food in her mouth at all). Our ST has given us great ideas and advice and we had been folowing and practicing them. kendra has done good. she doesn’t turned her face away as much anymore. so iam content wit the progress. now bad news:
we have been trying new foods evry 3-5 days. kendra likes them, but has been getting sick with almost all of them
(rash on her face, terrible eczema that won’t go away for good no matter what we put on it and crying). We supect she might have something going on in her guts esohagitis(sP?), Allergic Eosinophilic or celiac. We did blood work for celiac and it was negative, we also did the skin testing and they were all negative. the next step will be an endoscopy to check for all these
. She will be put under again, but they will also put in her button and do evryhting at the same time. te only problem is we won’t see the GI sooner. our appointment is August 23. we supposibly are on the cancelation list.
Right now the only thing she can have is pears and neocate until we know there is nothing else going on. I feel good about having a plan to look foward too. Before the doctos weren’t being helpful. I hope it works out, for Kendra’s sake.She is gaining wt (17-12ounces now). the only problem is she can only tolerate 130-140cc at a time and she needs about 850 calories a day (or 7 feeedings a day every 3 hours). i have to give her feedings really late at night and we will have to add a 2a.m feeeding soon to kep up her wt. i really need to get a feeding pump, but they cost a lot and right now DH doesn’t have a steady job and our indurancde doesn’t cover it
. I knwow God will provide; in the meantime i try to focus on the good things. the only thing that really sucks is the lack of sleep. i hardly have energy to be with dh and MelanieOk enough of me
things are better. it could be worst. thanks for asking.Ann Marie,
You are so sweet
thanks so much!it looks like a reasonable price in deed. i’ll have to find the other things that would go with it. i have no idea what those are. i guess i should ask my ped. Thais, Heather any idea what else i would need to buy
.? I applied for a program called Child Rehabilitaion service in our County, but the lady said it might take a while before she finds out if we qualified and we might not qualified for a lot. well i take whatever. we’ll see.Leo,
I’m so glad to hear that Kendra is accepting some food by mouth. That’s great step forward for her. I’m sorry about all of her intolerances, though. That’s such a shame – that she will finally eat but the food makes her sick.
Thank God she can at least have pears for now. I hope the gi has some answers and that someone cancels so you can get in sooner. I’ll keep her in my prayers, and I’ll pray that you find a pump and whatever else you need at an affordable price so you can get some sleep.I think the parent2parent site has a selling forum where they sell used items – maybe they’d have something over there.
Have you tried Cortizone 1% ointment (not the cream) on her eczema? Two of my babies had the worse eczema on their faces that my doc had ever seen and this helped them both.
HUGS and PRAYERS!Ann Marie,
Thanks a lot. i sent them an e-mail. i hope they can help me out.
Christine,
Yes, i was very dissappointed (dishearten is teh word
)that my child is finally enjoying food and then she had all these intolerances to it. i had a very hard week b/c of it. it’s like “are we ever going to get a break, please God”?I visited the forum and there was a lady selling one, but the price was out of my reach at the moment
iam still on the look out. my brain is a bit overloaded right now. can think well (too tired). thanks to Ann Marie for researching something for meNow where do you get the ointment one?. My ped gave me a prescription for a new stronger creme to try, but iam so sick of steroid cream.it’s called VALISARE OINT.
i really ddin’t want this post to be about me. i just wanted to know the LO’s here were doing, but thanks for all the tips and support.
Thais, i am a bit embarrased to post about neeeding something at P2P b/c they alredy have been so helpful in some other ways and there are so many other moms in need there, KWIM. Yes i only need a pump for night feedings. i am watching that one on ebay, but it seems quite old and iam afraid it won’t work good or i won’t be able o find the bags that work with it. No, she did not have one at the hospital. Those people kept telling me she looked healthy and bla, bla
. Thanks goodness she is healthy, but she dosen’t eat well.Yes that’s what they told me. they will yank it out if she doesn’t go wonder. iam glad something will be done. iam hoping we’ll have anwers and will be able to help kendra better.
The issue with food was driving me insane. to be honest i am not 100% sure pears are ok either; she still had teh eczema and a persistent rash near her cheek. the nutritionist think they might be ok, but if she has something going on in there(like inflamation), any food will make her sick that’s why she recomended the Endo.
so far she had a reaction to carrots, sweet potatoes, applesauce, posible bananas, peaches, rice cereal, oatmel cereal. iam afraid to try anyhting else at this point as she is miserable with every reaction and doesn’t want to drink her milk at all, vomits, whines all day, doesn’t sleep good, eczema with lots of itching. once you stop giving her that food the rach stars to go away. anyways. Kendra is a mistery right now. The ST therapy is on hold
until we know for sure what’s going on with her.anyways, how’s your Matthew? and you? i think you are home now? i read your post on P2P and i am so excited to hear of Matthew progress. He is getting a big boy
Hi Leo,
Sorry, I’m just now reading this thread. I’m So sorry to hear about Kendra’s intolerances. These ups and downs are SO frustrating and hard to deal with. It seems like just when we start to see an improvement with our little ones something else happens.
I’m so sorry that your insurance won’t pay for a pump!! Have you looked into pricing for renting one? We rent ours, but our insurance pays for that and all the bags, syringes, tape, gauze, etc. I’ll be praying for you! I hope you will be able to find something. Are you fortifying her formula at all? (sorry, I can’t remember!) That might help her get more calories in so you don’t have to worry as much about how much she takes in. Bryce can only tolerate 150cc at a time, but we fortify to 30cal/oz, so that helps. Anyway, good luck with everything!!
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