Living with a chronically unwell child
Printed From: OHbaby!
Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=28404
Printed Date: 24 November 2024 at 5:57am
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Topic: Living with a chronically unwell child
Posted By: Maya
Subject: Living with a chronically unwell child
Date Posted: 28 August 2009 at 1:58pm
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I'm just putting this out there in the hope that some one else can relate coz at times life seems just a little overwhelming, especially when we have a really bad week like we've just had.
As some of you know, my youngest three have their "health issues", mainly to do with their ears, but they also have an unspecified non-syndromic immune deficiency which means they pick up pretty much any bug/virus that so much as looks at them, and they quite often develop secondary bacterial infections. Mercedes has had 4 sets of grommets and now has hearing loss that means she will probably need a hearing aid in the near future, and Sienna has had 3 sets of grommets and needs another surgery to reinsert one that has fallen out, causing glue ear. They both have learning delays because of it, and will need extra help when they start preschool in a month or so. Sienna has also had her kidney issues, but thankfully at the moment they aren't too much drama, she just has to take her prophylactic antibiotic every day. Chiara is 13 mths and has had five lots of bronchiolotis, pneumonia, 2 sets of grommets with ongoing ear infections, chicken pox and just this last week, measles. We have great medical support - a fantastic GP, a brilliant immunologist and an ENT specialist who is pretty much on speed dial and is happy for me to call him any time of the day or night if we need to, and we have financial support (health insurance and the Child Disability Allowance) which helps with the cost of stuff like hospital visits, parking, their unsubsidised ear drops etc. But none of that addresses the day to day difficulties of having a child (or in our case children) that has a chronic health problem or illness, and sometimes I find it really overwhelming. Monday we had a particularly bad appointment with the ENT doctor where the short term prognosis for all three was pretty poor, and then the gremlins both "failed" their hearing tests yesterday. The gremlins both sleep in our bed as we started letting them sleep there when they were first unwell at around 13-14 mths and 18 mths later they haven't been consistently well enough to try any form of sleep training with them. Chiara is fast headed in the same direction - altho I have been insistent that she won't sleep in our bed, she wakes 2-3 times a night for pamol and/or a breastfeed. We do CIO with her when she's well and get her sleeping thru again, and then a week or so later she's sick again and we're back at square one. It's meant a lot of time off work for me - thankfully we have a great nanny who comes even when the girls are sick, but when they are contagious I have to stay away from work to avoid passing on the bugs. Not to mention the emotional and physical cost of countless trips to doctors, Starship (at one stage we were going 2-3 times a week for outpatient treatment for their ears), the speech therapist, psychologist etc. etc. Don't get me wrong, I am incredibly, incredibly grateful that what they have isn't life threatening, and that for the most part it can be managed from home without needing the lengthy hospital admissions that some families have to go thru, but it's still exhausting! Sometimes I feel like we're desperately treading water to try and keep our heads above the surface, and that's all we can do because there is no medical miracle cure, it's just something we hope will improve with time and we just have to wait and see. Sorry, this has become a long, rambly vent, but I know there must be other people out there in similar situations with kids that have ongoing "special needs" and right now it would be really great to know we're not the only ones! -------------  Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Replies:
Posted By: Lexidore
Date Posted: 28 August 2009 at 2:08pm
I can't relate to your situation as such Emma but just wanted to send lots of big hugs to you and your girls!!  ------------- 
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Posted By: Surreal3
Date Posted: 28 August 2009 at 3:58pm
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Hi there
Just to let you know if you want to talk at all vent! Im new here and have found some lovely people to talk to about anything and everything. The one thing you learn is the children may have different special needs ranging from mild to severe but they all have special needs and there is alot of similar things we all have to cope with. I too have baby in the bed its "easier" right now as he wakes most nights every hour or two and i have to work as well. I know this would take a lot of effort right now with three little ones who are always unwell, but its so important you do something nice for yourself. Is there anyway you could take a break? Once every 6 weeks I try and take half a day off work just to do something-even if its for a walk on my own along the beach. Im on here most days inbetween work 
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Posted By: ElfsMum
Date Posted: 28 August 2009 at 6:23pm
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i can't offer advice but know you are a fantastic mother and it must be so hard to deal with these issues daily.. but you do a great job! ------------- Mum to two amazing boys! |
Posted By: lizzle
Date Posted: 28 August 2009 at 8:10pm
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not the same thing, bu when Taine was going through the low iron thing, everything was so tough. Emotionally, i felt really guilty for letting him cry. knowing he was unwell. and then i was creating a "monster' because i would let him get away with stuff, because he was unwell.
When we found out it was iron, then came the guilt ' Why didn't i pick it up earlier", "OMG, what if this means he has problems because i didn't pick it up earlier" and that was really tough, especially as Lewis was really blase about it, assuming it was nothing really to do with us, and all we should do is look to the future, not dwell on the "shoulda woulda coulda" - which is great, however, i needed to talk. (and think I did numerous times on here) he's another one who is often sick, and more often than not, asthma. And now he is being referred to the psychiatrist for developmental delays...makes you feel like you are a crap mum actually. What i find good to do, is imagine someone from ohbaby is writing my problem as theirs, and then i imagine the advice i would give. and i stop beating myself up. Anyway, thats my story - does not compare to yours emma, but i understand...on a much smaller basis Here for support emma. |
Posted By: Maya
Date Posted: 28 August 2009 at 8:33pm
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Ha ha, good idea! It's easy to give other people advice, but not so much when it's yourself!
I can totally relate to beating yourself up about it too, half the time the gremlins were screaming coz they had chronic ear infections but we had no way of knowing and so we'd think they were just testing the boundaries and leave them to it - and then the ENT specialist said to me one day that kids with chronic ear disease develop really high pain thresholds. I was like, thanks dude, way to make me feel even more guilty! ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: lizzle
Date Posted: 28 August 2009 at 9:12pm
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see, now imagine you are me, reading about you, giving you advice about your children and you (me) say to me (you) - It is stupid to beat myself(yourself) up about something that I(you) had no idea was going on, and that I(you) did what I(you) thought was best at the times and that we mums can't by psychic. And then you(me) would say that my(your) children won't remember anyone of this when they are older anyway.
see, easy huh! |
Posted By: Maya
Date Posted: 28 August 2009 at 9:16pm
 ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: james
Date Posted: 29 August 2009 at 6:47am
aawww emma it relly suxs aye james has asthma and has ongoning flus colds since he was 6 weeks old then he was dignossed with dsypraxia i still feel soo giluty over it big hugs sweets ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: lizzle
Date Posted: 29 August 2009 at 7:09pm
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just suddenly clicked on taine getting sick lots - when he had his first bloods done, they said that he had had glandular fever.....and that he would probably have low immuinity because of it....I can't believe i forgot.
hey, does anyone have their kid on vitamins? we bought some of those omega fishies - still have the box cause no one would eat them (including lewis - taste like chewing a flavoured condom - he reckoned) |
Posted By: Maya
Date Posted: 29 August 2009 at 7:31pm
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I haven't tried the gremlins on them Lizzle coz I bought them for Maya once and she said the same thing (well not quite the same thing, I'm not sure she's tried flavoured condoms ) but she sure wouldn't eat them.
I have thought about it heaps tho. They are on prophylactic antibiotics to try and keep the bacterial infections at bay (which does nothing for the viruses of course tho) and I've considered the idea of probiotics to counteract the negative aspects of the antibiotics, but TBH the cost is really prohibitive for us - we get 100% of doctors visits, surgeries and subsidised prescriptions back but their ear drops aren't subsidised and are $40 a pop and only last 4 weeks max, and when you add it all the other costs (petrol, parking etc) it gets really expensive and to have 3 of them on probiotics would cost a bloody fortune  I do wonder if it would make a difference tho, coz if I could guarantee it would I'd live on bread and water to make it happen (or stop shopping at Patch  ).
Hugs Lu, don't feel guilty! One of my favourite sayings is "you do what you know how to do, and when you know better, you do better" (Maya Angelou  ) and it is so true - we all do the best we can for our kids, sometimes life/fate/Murphy just deals them a sh*tty card or three.
------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: Maya
Date Posted: 29 August 2009 at 7:35pm
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And so true about the reduced immunity after GF Lizzle. Sucky . Mind you, the gremlins immunologist said even if they'd identified a specific cause for their deficiency, the prophylaxis is the only course of treatment as there's nothing they can really do to "fix" it. ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: fattartsrock
Date Posted: 29 August 2009 at 11:11pm
Liz Im a bit scared that Lew knows what a flavoured condom tastes like.... And Hugs, Emma it sucks!!! ------------- The Honest Un PC Parent of 2, usually stuck in the naughty corner! :P |
lizzle wrote:Posted By: Andie
Date Posted: 07 September 2009 at 3:50pm
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LOL about the flavored condom tastes!! Ha ha.
About vitamins for kids, I have Ella on Centrum multivits for children, and after the winter germs we've had in our house, she takes Healtheries immunity supplement for kids too. No probs with the flavors of either of those, and when Ella's off her food, as she does do, I want to know at least some nutrients are getting through! I'm on an all-out germ warfare now, making a natural antibacterial spray that I can spritz all about the house whenever I like, using hand sanitiser after leaving the supermarket, and I don't visit contagious people at all, nor have sick friends over, and have some friends whose kids are more vulnerable than most, who also don't risk the germs, so at least we have ourselves an understanding! I had a long-term chronic condition that seems to have reared it's ugly head again recently, and it means I catch whatever bugs are lurking about, and get sicker than I ought to from them, often with secondary infections... so I feel justified in being a germ-nazi for now. I'd say people ought to understand if you need to be as strict about germs and nasties around your family as well. But it's that sleep deprivation you're putting up with that sounds the worst - my gosh, woman, how long has it been since you got to sleep all night long?!? Poor things! Do whatever you gotta do to get through each week and don't for a moment let those mummy-guilts get the better of you. Chronic (especially unspecified) conditions take a BIG toll on a whole family - you've got to do whatever you can to be kind to yourself. ------------- Andie |
Posted By: Maya
Date Posted: 07 September 2009 at 9:32pm
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Aww thanks I must say, I slept from about midnight till 5am last night and it was awesome! They're all reasonably well atm.
I'll check out the immunity supplement, it certainly can't hurt I guess. I try not to isolate us too much (which I guess isn't a great thing as it does mean they pick up more bugs), coz I go mad stuck at home and I'm also desperately clinging to the theory that the more germs they are exposed to, the more chance there is they'll develop some sort of immunity. Having dramas with WINZ, they sent me a letter last week saying the girls Child Disability Allowances had all been renewed as the medical certificates hadn't expired, then on Saturday got a letter saying they've suspended Chiara's as hers HAS expired and when I called them, no one had any sort of sensible explanation. Gah, I do NOT need extra stress! ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: peanut butter
Date Posted: 08 September 2009 at 2:37am
| hugs emma! your post scares me as I sit here at 2.30am rocking a baby that has just stopped hysterical screaming for ??? reason. you have inspired (seems te wrong word LOL) me to take him to the docs tomorrow. |
Posted By: Andie
Date Posted: 08 September 2009 at 2:50pm
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Hope the Doc's goes well, Nikki!
Blardy WINZ, eh! Pffft. Good luck with that one, Emma - hope they sort it (and backpay) soon! Yeah, I totally get what you mean about avoiding the isolation - the socialising is just so good for their development, and so good for mummys sanity! I can really see where you're coming from 'cause that's the same stance I took with Ella and exposure to other kids eating allergens around her - the isolation would hurt her more than the allergy in the long run! I gave up that approach with this winters germs, but it's just for the one winter, honest! Surely your girls will develop more immunity as they go... what does the immunologist say? Tough road getting there through - you sure have my admiration! ------------- Andie |
Posted By: palomino
Date Posted: 08 September 2009 at 4:05pm
Just saying ups to everyone that has to deal with sick children. It sometimes feels like i have a constantly unwell child, so can only imagine how hard it must be to actually be always worrying about the next illness etc. 
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Posted By: Maya
Date Posted: 08 September 2009 at 7:35pm
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Hugs NZpiper, I hope James is OK. What did the doc say? ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: peanut butter
Date Posted: 09 September 2009 at 12:19pm
| Ear infection. I really feel for those of you that put up with this over and over again. We have had 2 years before our first so I think that is pretty good but James has had 2 in as many weeks (probably same infection). He screamed hysterically last night every 2 hours. We are all shattered. I hope the ABs have kicked in now.....and that they fix the problem. In the back of my head is a concern that this isnt the problem and we will still be having these shocking nights after the ABs finish. |
Posted By: Maya
Date Posted: 09 September 2009 at 6:42pm
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Hugs NZpiper (and James ). Fingers crossed the antibiotics have kicked in and you have a better night tonight. ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: Maya
Date Posted: 12 September 2009 at 9:00pm
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Hearing test reports arrived today. We already knew what they were going to say, but seeing it in black and white is still pretty depressing. Plus Mercedes ear is pouring gunk and she spent all afternoon asleep on the couch miserable ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: Andie
Date Posted: 13 September 2009 at 5:00pm
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Bummer. That stinks for you and for wee 'Cedes. ------------- Andie |
Posted By: NikkiB
Date Posted: 13 September 2009 at 7:18pm
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Maya, I can 'sort-of' relate, I've got one little boy who is chronically ill.....I don't know how you cope with 3 of them!
My son was born far too early and his main problems are that he's got a complex heart defect and chonic lung disease (he is on home oxygen). I call him my bubble boy. Whenever we go out, he MUST be in his pram with a storm cover covering him. We cannot have anyone near us who is ill, even a runny nose could lead to a chest infection or pneumonia for him. On our way up to Starship, we were out in the general public for the first time without a storm cover (for obvious reasons we couldn't take the pram on the plane). Right on cue, Jacob caught a bug and ended up with pneumococcal pneumonia, spending 5 days in PICU. I have certainly learnt from this, and the next time we HAVE to be out in the general public, my son will be wearing a mask! 'Normal' life for us is listening out for beeps from his monitor that is consistantly recording his saturation levels and heart rate. My son is a great sleeper, but unfortunately, his monitor is not! It is certainly a lot more difficult looking after a child who isn't healthy. I have meet some amazing people through the Ronald McDonald House who have been through much much worse than what my family is going through and who still manage to cope. They are really an inspiration and I try to think of them when I'm having a bad day. The other way I cope is by being thankful for having both sons at home together. My youngest son has spent 5 1/2 months out of 8 1/2 months in hospital. I didn't want to take over your post, but wanted to share my story to try and help you
Sorry to hear about the hearing test report. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Maya
Date Posted: 15 September 2009 at 9:04pm
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Hugs Nikki, it must be really difficult for you, and for your boys as well. A friend had a micropreemie (24 weeker) and it is definitely more than a full time job.
I got a letter from WINZ today, they want me to sign a consent for them to talk to our doctor about Chiara for the Child Disability Allowance. I'm undecided as yet whether I'm going to sign it, part of me wants to tell them to sod off as our doctor signed the forms initially and it's just more mucking around. But then part of me thinks it's not worth arguing about either. I guess I just don't think the goverment should have the right to access my baby's private medical records. Not that they're all that private - I have 13 sets of hospital/ED discharge papers, 2 sets of post-op notes from grommet surgery plus if I got a print out from the ENT doc it would show she has been there on a fortnightly basis at least since May... ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: drumstx
Date Posted: 21 September 2009 at 10:34pm
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nikki,
i really feel for u and hope that he is getting stronger every day. I have a sone 16mths with 'jackitis' thus named because no one knows wot is wrong, we do know he has neutropenia ( lack of neutrophils or kind of white cells) so he also cant fight bugs and he has ng tube because he has stopped eating since june this year and lost weight, he doesnt seem to be absorbing foods again unsure yet why... we are in the dark with most of the things with jack and it is very frustrating but the bubble line that u wrote struck a cord with me, as this is my life most of the time also. Lots of hugs and i hope that u are getting the support that u deserve caro h |
Posted By: NikkiB
Date Posted: 23 September 2009 at 10:40am
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Thanks Caro. to you too. Gosh, I can't even imagine how frustrating it is not knowing what is wrong with him (well, not been giving a medical term for what is wrong with him). My son is also ng feed, as he also stopped taking the bottle in June!
Do you have a good support network? It can a very lonely place, when you've got a very sick little one. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: drumstx
Date Posted: 23 September 2009 at 4:46pm
| we have not long been in hamilton so not really have the homecare workers that come but havent had a chance to really meet anyone yet but that ok i have my friends in dannevirke that call often and that is good. does your little one get infections from his tube , have been in hosp last week with one side infected and now the tube on the otha side and it is getting infected also? we use duradurm tape but he still getting them. wot do you use? |
Posted By: NikkiB
Date Posted: 25 September 2009 at 5:38pm
Oh dear, no I've never had his tube become infected  Something to be aware of. I use hypafix tape to secure it in place. Do you change his ng tube often? My DS seems to pull his out about once a week, so I always put a new one in.------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Shelt
Date Posted: 25 September 2009 at 9:20pm
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Just wanted to say big hugs to everyone out there with sick kiddies. I know how it feels, although in our case it is constant viruses that are the problem. Gabrielle was born 6 weeks early and seems to be susceptable to every bug that comes along. She's had 7 bouts of bronchiolitis since May - it seems that we get about 4 or 5 "well" days in between each bout. Even though the doc keeps telling me it should only last 3-5 days, the worst seems to take 7-10 days and then she has a terrible cough pretty much constantly. We have had 3 admissions to hospital and an ng tube (only briefly). Each time she gets sick she spends days just screaming and screaming. The last time we were in hospital we were in a 4 bed room and she kept all the other kids up all night which was terrible.
I've taken Gabrielle to a herbalist to try and find something to boost up her immune system and she's on cod liver oil (apparently its an anti-inflamatory) as well. She also has reflux so we've got slippery elm for that to see if it helps. Its so hard to see my smiley happy baby underneath all the screaming when she's not well. My work are starting to be rotten too - they were good the first couple of times she was sick but now I have run out of sick leave and used next year's sick leave too they are less sympathetic. I am having to work from home doing a full week's work round Gabrielle which mostly means working 5amish in the morning or after I get her to sleep at night round her waking up crying. Sorry - this wasn't meant to be a pity party for me. Just wanted to say I know how hard it is and that I hope everyone knows what super mummies they are. Its not easy being a mum, but its 10 times harder being the mum of a sick child. ------------- http://lilypie.com"> 
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Posted By: NikkiB
Date Posted: 26 September 2009 at 6:17am
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shelt. It just not fair sometimes, is it. Hope the herbalist is able to help Gabrielle. Have you thought about acupuncture for Gabrielle? I use to take my oldest son to acupuncture when he was unwell (just 'normal' colds when he was a baby) and it worked really really well. Food for thought.... ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Shelt
Date Posted: 26 September 2009 at 7:32pm
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I hadn't thought about an acupuncturist NikkiB but maybe I should try that. I am already taking her to the chiropractor but so far it doesn't seem to have had any impact. Thanks for that. ------------- http://lilypie.com">
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Posted By: NikkiB
Date Posted: 27 September 2009 at 7:18am
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Not a problem at all I'm a big believer in acupuncture and just love having it done. If only I had the time now........ ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Maya
Date Posted: 27 September 2009 at 8:51pm
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PMSL - I'm just trying to imagine what the gremlins would think of acupuncture - probably something best started when they are too young to complain about it
Hugs Drumstx, having a permanent NG tube must be tough There are support groups for tube fed babies online, not sure where exactly but one of the girls I work with had a little boy that was NG tube fed for several months and she mentioned it.
How is Jacob doing Nikki? Shelt - Gabrielle sounds a lot like my girls - virus after virus after virus (altho they tend to get the nasty bacterial infections in between viruses lol!), it gets exhausting after a while! Fortunately, I have a nanny so I can work even when the kids are sick, if they were in childcare they'd have more time off than there I'd say. Having the nanny also means we can minimise their exposure to bugs, altho the gremlins have just started preschool so will be interesting to see how that goes... ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: NikkiB
Date Posted: 28 September 2009 at 12:55pm
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Maya, they don't keep the acupuncture needles in children (unlike us adults), the needle goes in and then out again. My son (when he was about 8 months old), knew something had happened, but didn't know what. He didn't cry or anything, he just looked perplexed lol.
Thanks for asking about Jacob. *Touch Wood*, he's good at the mo. We found out on Friday that they are going to try a full heart repair in Feb
Are your gremlins enjoying preschool? ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Maya
Date Posted: 28 September 2009 at 2:38pm
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Wow exciting! And scary at the same time - but how awesome!
The girls are doing OK, not great - they screamed when I dropped them off, but they'll get the hang of it. ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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