Returning clothy-dad

[barefoot]

Hi nappycino girls and guys,

I was a regular here for a few months, about 2-2.5 years ago. Preparing for and following the birth of our first little girl, Sarah. There's still some familiar names floating around, which is good to see.

It seems there's been a cull of "dormant" members, so I've had to re-register.

Quite a bit has happened since I was here last. After a few months, we started to realise that Sarah was not doing the things that all the books said she should be doing. A few paediatrician visits started the cycle of testing... and testing. All negative. General agreement among medical types that something wasn't right. She wore the label "undiagnosed syndrome" for a few months, and we started seeing geneticists at the Childrens Hospital in Melbourne.

At 7 months, Sarah's cleft palate was repaired. While we were camping out at the RCH, the genetics department came and visited a few times, and eventually came up with another suggested diagnosis. A few days later it was confirmed - Sarah has Pallister-Killian Syndrome. It's a ridiculously rare chromosome defect - a proportion of her cells have an extra two copies of part of chromosome 12. There's about 300 known cases in the world, so there's limited medial knowledge. No known cause. It just happens. To other people. And us.

It's been ups and downs since then. Deciding to have a second baby was all of that. There's never been two cases of Pallister-Killian Syndrome in the same family, but once you have one special needs baby, the prospect of having anything go wrong with your second is a scary prospect. Hannah was born last October, and is now a perfect 7 month old (after a slightly dodgy first month of not putting on any weight... *sigh*).

Now Sarah's about 2 and a half. Developmentally, the two girls are similar. Sarah's still ahead in some ways, Hannah has overtaken in others. Sarah's small for her age, but she is - and will be for a long time - a very large baby.

And that's why I'm back talking nappies. If Sarah ever toilet trains, it won't be any time soon. She's currently in "Large" fuzzybunz (having passed her "mediums" on to Hannah), and we're extremely happy with them.

But overnight... Sarah wees a lot (she still gets most of her nutrition out of a bottle), so we have to boost in a big way. And with all that stuffing, the Large pockets are starting to look as though their nights are numbered. They're getting too short, and sometimes she's wetting through/around/out.

I'm having a hard time finding xtra-large Fuzzubunz.

So I'm keen to hear from anybody who has any ideas or pointers for big cloth nappies. The bigger the better. As I said, Sarah will be in nappies for a very long time, and she's not going to get any smaller.

I tried to post a "wanted" post in the trade area, but I'm too much of a newbie this time around and I'm not allowed. But if anybody has some leads... please let me know your thoughts.

Thanks for reading!

tim

[Nicole_M]

Hi Tim,
I can't help you specifically except to suggest there would be plenty of WHAM's out there who'd be more than happy to do some custom nappies for your precious Sarah.
Thank-you for sharing your story. I'm reminded how blessed I am to have two healthy children.

[Eilleen]

Welcome back Tim! What a parenting journey you are on. Congratulations on the birth of Hannah!

The Trading Room here is no longer a buying/selling room (for a whole heap of reasons -but mostly due to a few unpleasant experiences in that room). Its now a swap room. And yeah, we normally do not allow new members to post there and ask people to get to know each other first on the forums before swapping with each other.

Anyway, Welcome back!

[~Melissa~]

Welcome back to nc Tim

[johT]

hi tim, wb.

hth's

* Where can I buy larger sized cloth nappies?

People with more rapidly growing babies or older children sometimes have trouble finding XL and larger nappies. Some nappies available in larger sizes include Honeyboys, Happy Heinys, Very Baby, Pea pods, Fuzzibunz, Pookey Pockets, Bits for Bots, Keester Kovers, Bubblebubs, Baby Bloomers, Motherease bedwetter pants, Yoyo pocket trainers, and Naturally Mum hemp sleepers. All can be found in our Links section. In addition, many WAHPs who do custom nappy sewing will sew a larger size on request.

from
Oz Cloth Nappies Nappy FAQ: All Your Cloth Nappy Questions Answered: Information on Modern Cloth Nappies, Traditional Flat Nappies and Training Pants, Nappy Accessories, Washing Cloth Nappies, Buying, Making and Where to Chat About Cloth

[nangari]

Hi Tim

Welcome back I don't think I knew you when you were here last (probably wasn't here myself!) but glad you find NC a place to find support/suggestions/share your journey. Sounds like it's been interesting to say the least!

I have a daughter with Down Syndrome and although I'm confident she'll day-train by the time she's about 5, she may not and she'll most likely be in nappies at least at night for a lot longer....so we're on the cloth journey together in that respect. My girl's only just now starting to grow out of large nappies (she turns 2 in July) so I'm starting now to look around at what is available in XL etc....

I agree with the WAHM Customs, I know there's some who are more than happy to make something up if you ask. I know that Panda Baby would be more than happy to do a custom large

Let's keep in touch and share what works and what doesn't.

Oh, I have a happy hempy fitted pocket which I think is going to be great once my girl fits it. It's really huge (waist wise) and would only need a double layer trifold bamboo booster topped with some woollies to be super absorbent I think And the other thing I do is put wool on the bed if I think there's going to be any leaks (there's also "Slumber Dry" and the like for protecting sheets - makes bed changing heaps easier!).

Did you also know that there is a subsidy available for children who have not toilet trained by 3? I'm not sure what state you're in but if you look up "continence subsidy" or something like that, you might find something in your state that allows cheaper nappies. I can't say if it's for cloth or disposable but I say, if it's for disposable, they should make an exception if you say you want to use cloth.

Some councils also have incentives for using cloth nappies, so worth asking your local council what they do in regard to that!

Catch you round
Cas

[mummygeorgie]

Hi Tim, welcome back to Nappycino. Thanks for sharing your & your family's story.

Day training wasn't an issue for us but nights were as my daughter was always large for her age and wasn't night-trained until nearly 5. Have you looked on US sites for XL FuzziBunz? That's where I got some (and eventually an XXL!) - exchange rate is good atm and most will ship to Australia. Or it could be worth contacting FB retailers here, and asking if they can special order you some with their next shipment.

I don't suppose you or your wife/partner sew? I made a few of my own, too, to my own size requirements.

[Theresa]

Hi Tim,

I just wanted to say welcome back and thanks so much for sharing your story.....

My big girl has until recently been tube fed overnight resulting in some night nappy issues for us as well, but she is very petite (her 2 year old sister is almost as big) so sizing hasn't been an issue. So whilst I can relate to night nappy struggles, I'm not much help otherwise....

Hope you can find a solution for your beautiful girl though

[mum2henry]

Hi Tim.

We have been having nappy issues here and have recently been in consulation with some other WAHM for bigger sized nappies. Bits for Bots L night pocket is big enough for us and we need over 25 layers for nights atm. Pookey Pockets also do a very big pocket.

We have been using XL VBSN with an added hemp trifold on the outside and wool cover. That's only just getting us through atm.

i might add my little man is only 21 months (where did that go) and is a BIG oddly shaped boy. The only way we have been getting around the wee issue is the larger fitted nappy and boosting on the outside so the fit of the nappy isn't too compromised

Great to see you back again though

[Beanie]

Hi Tim,
Welcome back! I just looked up PKS from the link you gave - what an unexpected experience it must have been to find out Sarah has something so rare. It looks like you will have had a lot of hard times but also had your eyes opened in ways you could never imagine. Congrats on the birth of Hannah too!

I hope you find what you need with the large nappies. Others have given you some great advice