How are you coping?

[Can I?]

It's easy to talk about our kids and to find out how they are coping with each new situation, but what about the families and parents? How are you going? Physically? Emotionally? Financially?

[Nowhere]

Its funny thats never a question us special nees mums seem to ask each other, apart from when things are REALLY bad, what a good idea for a thread

The past two weeks have been hard for our family as mikenzee has picked up another 3 diagnosisis and more medication, which i know isnt a big deal but Im just over it at the moment, we was also told that she ivery likely to have her feeding tube forever and likely never eat or drink:thumbsdown: so i was sad for her, we also getting ready for hr next procedure next week she is having a tube put into her intestines which is what she wil be fed thruough as G tube feeds are not working, those of you that know about tube feeding she is getting J port added to her G tube and then after a few months she wil have a seperate J tube which means yet another operation, Im dreading the operation as nothing is symple with Monkey and she always has cardiac and respiratory issues after surgery which isnt nice, and we always end up staying in longer then usualy expected

We are seeing genetics next week wich im looking forward to as i would love to know WHY kenzee has so many isses and her peadiatrician is the same he thinks there is definately some sort of underling problems we just dont know yet, So i m both looking forward to and dreading it at the same time

What im finding hard at the moment is parents of totaly healthy kids, telling me oh well there others out there worse of then her, I total y realise that and i feel for those kids and parents i really do, and if it came from another SNM i would totaly welcome that it as they actualy know what they are talking about, but from mums of healthy children its really starting to get to me, Is thats bad, is it just me or are you over hearing that as well, I do know there are worse kids out but it doesnt make Mikenzees situation any easier

Mikenzees diagnosis to date are
Hypertonia
hypermobile joints
Laryngotraceomalacia (operated twice) stil having airway issues
reactive airways
Apnea
heart murma, enlarged heart
enlarged liver but functioning well
nutrapenia
Gasrto oesophical reflux disease
alergic Gastritus
alergic oesophagitus
alergic Colitus
malabsorption syndome
protien intolerace to all food protein
curently investigating seizures


Wouldnt change her for the world but as she is the most beautiful girl ever

Hope everyone is doing well, look forward to reading everyone elses storys

:hugs:

[kiwibird27]

How do I cope????? Don't really know,I'm lucky, My daughter has a diagnosis and all her teams in place and she is at home and not still in hospital, however the healthier she gets the sadier I become, I realise somewhere between living in hospital and dealing with specialists I have lost myself and the world just seems a little black...I guess it's time to heal myself now, don't really know how to do that??!!

I tell lots of people my DD's story , have learn't only to tell half of it now, and I watch their faces drop and their lips quivver and they tell me how strong I am and how lucky Megan is to have such a wonderful mother, They usually look at their kids then thanking god they are healthy and then often apologise and look at DD with a sad, no hope kind of look..... Relatives ask if she is lifting her head up yet and why not when i say no.....don't know what part of "probably never walk" They didn't get, I have become very clinical about life and view things so differently to once before, Having a child thats alive and happy is more important than anything, If I have to tube feed her and carry her till the day she dies (whenever that is) I don't care, I am forever changed and I thank her for that. Only other mums with serious illnesses get that.
Sometimes I am drowning in sadness then I see her and get what life is all about, Financially, we will be broke forever i think cause only 1 of us can work, We can't just go away on holiday like most people ... everything needs to b planned

But I have an alive happy child with a rare genetic condition, she is here for a reason, I may figure it out one day!!!!!

Mikenzees mum, has she been tested for CDG ??? Transferrin Isoforms tests??? I think I asked u before can't remember

DD.............

Liver Disease
GORD...resulting in a fundo
Abnormal kidneys... leaks protein
Pericardial effusions resulting in a window
Global developmental delay
Hypoglycemia
Delayed gastric empting...we think???
Moderate hearing loss
short sighted

Gastrostomy.... starting to lick solids!!!

[punkbaby]

Honestly some days i feel like going and killing the guy that did what he did to us but i have to remember that ds is here and his alive and his problems by far are nothing compared to others out there! I dont know how i would cope and i guess i dont know how i have coped to get where i am but all i can do is stay positive and hope for the best :)

[Can I?]

I guess it's time to heal myself now, don't really know how to do that??!!

That's a hard one hey? As you said, you are forever changed - so its not like you can go back to being who you were. I have moments of drowning in sadness too - when something that is so simple for everyone else is so hard for my little guy - but there are moments of pure radiant sunshine too.



What im finding hard at the moment is parents of totaly healthy kids, telling me oh well there others out there worse of then her

I guess it's just another case of not knowing what else to say. People want to say something positive that will make you feel better (regardless of whether or not it actually does make you feel better, or even whether you want to feel better) and that's the best they can come up with at the time.

I'll write about how we are going since I asked you about yourselves.

Physically - we are exhausted. DS doesn't sleep through the night (he is 5) and is often awake for up to 2 hours in the wee hours of the morning. But aside from that we are well.

Emtionally - pretty good at the moment. We have had some worries with the possiblity of there being a physical cause for DS autsim, but generally ok. My older son is having a trouble with his brother atm. It is hard for him to accept that his brother gets special treatment even though he understands why.

Financially - we are broke and really I need to go back to work, but I should be able to get into some stuff next year when DS is in school full time. I know he will find the transition difficult, so I need to be home at least for the first few weeks until we see how he will go.

I'm so glad to see that everyone is coping, even if they don't know how. Part of it is a simply a matter of having to I'm sure. :yelclap: for all the special mums and families of special kids.

[Duchessa]

:hugs: To all of you.

Can I? you have such a wonderful attitude. Truly inspirational.

[Can I?]

Can I? you have such a wonderful attitude

Nah....mostly I'm grumpy and whiney. I will have to think up a new excuse for that once I can't claim to be sleep deprived anymore. Any suggestions anyone? I would hate to have to admit that that is just how I am :cool::p

[forbetoel]

While I don't have a special needs child, I would like to send you all big:hugs: Two of my friends have children with downs syndrome and they are the most gorgeous little boys on earth, both absolute gifts to their parents, one of them has had quite a few operations on his heart, and both of my friends do wonderful jobs. TTheir boys may have special needs, but are more special because of it. In a world that is increasingly only willing to accept societies warped version of "normal" it is so lovely to see mums around who are loud and proud of their gorgeous children with special needs, it is these children in all honesty that help make the world a more colorful and loving place to live in. Well done to all of you, I can not even begin to understand the hard work you all put in, but I do know that as a parent, we do what ever we can for our children.

[kiwibird27]

I went back to my old job for 6 months and now realise it's not my career anymore, that sounds weird but everything is different now, not for the worst just different. You just kinda have to feel around in the dark for awhile i guess until u hit a light sitch?????

[flyawayfree]

I'm not coping all that well, but just do my best and solider on. I find it really hard because despite the tests there has been no actual diagnosis of a condition. All of my friends say things like, 'he'll get there when he's ready', or 'there doesn't seem to really be anything wrong with him', and they just don't seem to understand. I love my friends though and it's not their fault, they just don't understand...

Where I am living, there are no support groups around, and I feel like asking for help is admitting that I'm a failure. My partner tries to help, but he cops all my frustrations, and sometimes I am ashamed to say it, but my DS does too. I don't yell or scream or anything like that, I just become detatched, and that can't be a good thing...

My DS has a development delay, 15 months but not walking or crawling. Has been able to sit up since 8 months, but just l;earnt to do it himself two days ago.
We have been told his brain is 4 months smaller than it should be. And he has also been diagnosed with seizures. We are meant to be going to physio and ealry intervention, but EI always rings up and cancels, and the physio has just quit. So we really don't get the help we need....

Despite all that, I know I am lucky to have a gorgeous son, even if he has special needs...

[MamaRabbit]

Hi supa_star323 - I just replied to another message you left but have just seen this one and you answered my question about early intervention. I can relate to alot of what you are saying and will drop you a separate note soon.

Re: coping....it's swings and roundabouts, ups and downs, pure sunshine and dark clouds. It's been a long, lonely and difficult 2.5 years and I suspect it will be many more years before we really find our feet.

But on the flipside, my DS is amazing and just adorable. I have learned so much from him and he makes me a better more patient and understanding person. He will be 3 in January - still undiagnosed and undergoing tests, clinics, assessments, poking and prodding but he takes it in his stride. He is a soldier. He does not yet crawl, walk or talk but he is bright, alert, motivated, happy and learning every day. Somehow through it all we find a way of communicating, playing, moving. I have had to educate myself and learn how to navigate my way around the system. And I am very proactive in getting equipment when we need it, rather than joining a long waitlist. Same with therapy....I am no longer just a mum, I am a carer, a teacher, a therapist, a doctor, and a clown.....which at first seemed daunting, but now I think it is pretty cool having all these careers rolled into one - talk about job satisfaction! I'm teaching myself to be his therapist because I can't afford to sit idle on a waitlist. Our time is precious.

Speaking of therapy, we are waiting for assessments and are on waitlists, people keep turning us away because we are undiagnosed but I just get on with it. I keep teaching him as best I can, I've enrolled into preschool. Just last week DS kind of found his balance - this is what we have struggled the most with. He just started kneeling and this has opened up a whole new world, he can now freely use his hands to play whereas before he had to use them to balance (which in turn affected his fine motor skills). Of course he stills falls unexpectedly but you can also see him really try hard to correct his balance. It's very exciting to physically see how the lightbulb just clicked on....he worked something out and is now working at mastering it! He also started copying me and sticking his tongue out, that was a nice surprise and has turned into a nice game which no doubt we can turn into another action soon.

So all in all I am very positive but I also get sad, lonely and frustrated. At times I feel my life is now dictated by the world of disability, medicine etc. It's not so easy to just stick the kids in childcare so I can work or get a babysitter if hubby and I want to go out, things need alot more planning. We don't have any family in Sydney so no grandparents on hand to provide relief. Friends don't tend to see us as much as they used to, purely because they don't want to impose or bother us....they think we are too busy even though we would welcome being social with open arms. It is certainly a character building journey that we are on. Thankfully I am blessed with my hubby, DS is a true soldier and DD is a great personality - and together we are a strong unit.

I've made some fantastic friends worldwide via the internet, lifelong buddies, who I've found via bubhub and other sites. They pick me up when I am down.

I also made use of the 4 counselling sessions Carers NSW provide. This was fantastic - it was time for me. To talk about my hopes and dreams, she helped me remember who I am, who I want to be. Apparently Medicare also subsidise up to 12 sessions if your GP is happy to vouch for it and put a plan together for you. I haven't done this but may do because I enjoyed the other sessions so much.

Big thumbs up to Can I? for starting this interesting thread :thumbsup:

And bravo to all you special mums & dads. You are not alone.

[Nowhere]

Hugs t all of the other mums in this thread you are al doing such a great job, maybe it is true about special babies born to special people

[amyt878]

I think this is a terrific thread.

I have told my story before, but, I'll share it with you.
I had a healthy boy in 2003 and fell pregnant in 2005 with my second child. We found out it was a girl and I was so stoked. I went out and bought lots of pink and my mom in the US sent me heaps of stuff, it was all so exciting and new as I had had a boy first.
I was induced and had slight issues with her wanting to come out. 2 days later she was born. As soon as she entered the world, she stopped breathing. They rushed her to the table and resusitated her. I kind of remember not being that worried, I think it was just adrenaline of just having pushed her out and I was kind of oblivious.
They took her to the Newborn Care Centre and she was to stay there for a night for observation. It lasted 3 months in the end and she almost died in the meantime. Her body was failing her and they could not find a reason for her malfunctions. It turned out she had a very rare disorder and that is why it was not picked up. While this was being found, we were called several times to be told she had stopped breathing, had seizures etc and it was just SO HARD.
She has something called Panhypopituitarism. Basically, she was born without a Pit Gland at ALL! It just is not there, so she relies on synthetic hormones (Thyroid, Growth Hormone and Cortisol). This was all managable and I felt positive about it, as it was treatable. Things were quite easy and we felt blessed we made it through and she was OK. After a few months, we started to notice she was just not acting her age, or stage and in the end, we just don't know what her potential will ever be. She is 2, but functions at a 9 month level approx. Doesn't stand or walk or crawl yet. So, it feels as if she is a baby still. She eats puree and drinks bottles. Although, she tends to not eat for days at times and is VERY underweight at 9 kgs and 2 yrs old. But, since she is so petite, she just looks like she is 10 months or something.
She also has Septo Optic Dysplasia and she cannot see all that well. She has a eye turn and is now wearing glasses, which she hates and never wears more than the 30 seconds while I try and occupy and distract her from noticing they are on her.
All that being said, I love her unconditionally and I do wish she was "normal", but not for my benefit, for hers! I adore her and we have a strong support of dad and brother to assist.
I used to break down about it, but now I just accept her as Maddy. She is Maddy and not anyone else. She is technically one in a million and to me she is as well.
I have to admit, having to quit work adn stay home has been a hard year. I find I hide a lot more, do not have many friends and I feel isolated. Joining mothers groups can be too hard as I cannot relate to a "typical" 2 yr old.
Thanks for letting me vent.
Amy

:)

[kiwibird27]

Hi, Just replied to the Oatley learning links thread
Pretty sure your in my area too, There are a few of us out this way, we should all have coffee one day??????

[amyt878]

I have my moments. Times where I feel really strong and can take it all on, and other times I feel helpless, lost and alone.
It is really hard to balance finances, special needs, relationships and time for yourself. There just isn't any time I get to myself for more than an hour while Madison is asleep.
I guess sometimes I feel like I have lost a sense of who I am.
All the pain and struggle of the early days of Madison's sickness and diagnosis made me into a different person.

[immy]

This is a great thread.
Okay sorry but I going to have a whinge and let it all out. I have my moments alot, I hate the not knowing of what's ahead I want answers that they won't give us just yet.
I have been a single mum since my little one came home from hospital 4mths after she was born.
I struggled with money as some doctors we are private for various reasons others we are public so I had to go back to work fulltime and not to mention some medications are not available under concession and are expensive.

I am lucky I have the help of family. I find it hard dealing with a special needs baby working fulltime and having an agressive ex husband.
I get tired of all the hospital visits and doctors appointments.
But I love my daughter dearly and I am glad to have come on this site to realise I am not alone.

[amyt878]

HI Immy,

I can imagine how hard it must be not having a partner to help out, but you are lucky to have family support.
Do you get any Support Payments from Centrelink/ Carer Allowance etc?
The doctor appts, not knowing potential are very hard to take sometimes, I SO know where you are coming from. We were told Maddy was moderately affected and that was all we were told. Also, Madison does not have a condition as such where we can see what her potential is by talking to other parents, etc. Because there aren't any with the same issues.
I am looking forward to meeting up and I know how hard it is for others to understand your position.

Amy

[immy]

Hi Amy, I do get carers allowance and of course Family Assistance etc. My little ones dad is no help at all and hasn't seen her in 4 months now but the way he is it's probably for the best.
I so glad to have come across people on here who are in the same situations with the little ones. It will be great to catch up.

[Loopy Linda]

hi,

I was one of those mums..you know the ones that feel sorry and try to sympathise with your situation....but secretly thanking god for their healthy kids...i was

now i am learning my beautiful baby is heading towards being one of those special kids...no one can tell me yet how he is going to affected...i have a long list of possibilties...he is only 7 weeks old though and i am scared....and i hate part of myself.

apart from the feelings that i was the one carrying him and growing him and i must have done something, eaten something, somehow i must have...something..

i realised the other day i have had his baby photos from the hospital for a month almost now...and it still isn't on the wall with his big brothers'. his abnormality is very prominent in his baby photo...i couldn't see it before...i nevcer saw it, then they operated and you can't see anymore, then the photos arrived and it is soooo clear...and i haven't put his picture up yet...and i feel guilty for something else, but i don't think i want to hear anyone comment on it..not that i think they would, but what if i caught their face repulse a little the first time they saw it?

do others feel this way?

Linda

[Nowhere]

hugs to you Linda

Its totaly normal how you are feeling, so please dont feel bad for it, Even thought your baby is perfect in many ways its totaly niormal to greave the perfectly normal baby you pictured during pregnancy, You wil but hs baby photo up when you feel ready, yes people may sair for a second but they get over it its just human nature oh HE/SHE looks difernt lets stair KWIM, most part they dont mean to be rude but it stil hurts


Do you know what condition or syndrome your beautiful boy has, how is he health wise is he breathing, feeding etc on his own or needed medical assistance

Hey Immy and other Amy lol, did you guys get your 1000 dolar bonus from careers alowance, its come in handy doesnt it, I know we would all rather have health kids then 1000 dollars but that not about to hapen anytime soon

[Loopy Linda]

Thank you,

i needed to hear i am not horrible, at the moent he looks beautiful, he only has a little scar that will soon be covered in red hair to show for his troubles. But when he was born his head was huge, he had a arachnoid cyst in his brain and his head had grown to accomodate it. and his eyes..i can't expain to well but you can see the white above his coloured part ( i am sorry i never needed to know what these were called before, but i wish i did now). The drs say that is from the pressure that was inside his brain.

He also has agensis of the corpus callosom which is part of his brain, the part that links the two halves is either partially or completely missing. this (from what i have found on the internet) will lead to development delays, maybe seizures spasticity and similar.

I have to wait till tuesday to speak to paediatrician again to find out more, but i don't think they can say what will be wrong, just have to wait till he is aolder and go from there.

the cyst was near the part of the brain which processes what you are seeing and controls the eyes so he is likely to have sight problems...

i just wish i didn't have to wait to find out what problems he may have, i want to know now so i can adjust myself, our other kids and see what we need to do to help him. i feel a little lost with now, the only thing i can do for him is breastfeed at the moment, so i am hoping i can do this for as long as possible.

if anyone reading this knows more on these, or has similar situation i would love to hear from you

Linda

[sunshyne]

Hi all, im new to Bub Hub and i am loving this section, the supportive words i have read and some of the stories are so inspirational.

I have a 8 month old girl who has Down Syndrome, luckily she doesnt have the typical heart problems but she has bad hypotonia, reflux for which she is on Losec for, she has only just started to use her arms and hands and is a wonderful feeling seeing her finally moving the arm and slowly grab a toy - the things we take for granted hey! I am aiming to have her sitting by herself for Christmas or New Year. She has Physio and speech therapy every second week. We just had a hearing test done and have been told that she has severe hearing loss in both ears, she has glue ear and sees a ENT at the end of this month for Grommets, the audiologist said she "should" gain some of her hearing back with the grommets. I know that she is just a touch of what some of you other mums have to deal with but some days it is all very over whelming.
The worry about her getting bullyed in school or traveling public transport (i know it is early days now) plays on my mind daily. Having a intellectual disability and trying to fit into every day life to me sounds like one of the hardest things to do.
But today i am good and hopefully i will be better tomorrow, as i believe for me i have wasted too many months on analysing my beautiful daughter instead of enjoying her. I seriously would not change her for the world, i have grown to love and accept her for who she is and if someone said to me hand her back and we will give you another perfect healthy normal baby i wouldnt do it, as much as i am not happy she has down syndrome i am happy that i have her and she has changed me in a way that no one else could have, i am a better person because of her.
Sorry to have rammbled on, i think i had some feelings that needed to come out and this was just the perfect place to say them and i know i will not be judged.
And Mikenzees Mum - you are an inspiration!!! reading your posts makes me feel like i am complaining about nothing (please dont take that the wrong way) You keep pushing on for a diagnosis for your bewdiful wee princess BIG BIG hugs to you both :hugs:
And for all the other mum and dads :hugs:

[Nowhere]

Hugs to you sunshyne ( dont know your real name lol) i love how you talk about your DD she sounds beautifull, she is as lucky to have you as you are to have her, We also wory about how kenz wil go at school as kids are cruel but with speaking with other mums with with childrne with "hurdles" as we call them it seems that kids these days are more excepting than when we was at school

Im glad to here you baby girl doesnt have the heart problems that alot of Down syndome bubs seem to get, how is her reflux going is it undercontrol.

Kenz as im not sure if you have read has the low muscle tone and hyoermobile joints as well like you DD, she was late to start rolling and sitting etc but is doing wel now she sat up at around 10 months crawled at one ( although never did the typical crawl they like them to) and at 16 months she started walking she stil fals alot and is unbalance due to her mucles issues but stil she is mobile, she is in corective shoes now and we think moving into AFOs at her nextr orthapedic appt, lol i have point to my rambling lol just that maybe you DD will be like her with her developement there was a time we thought kenz would never move but she does and it great to see :hugs: there is definately hope ther

Linda

Hugs to you, sounds like you really been though the mil with you little man, i hope the paed can give you some answers and some idea as to what is going on, I dont kwow anything ablut your sons condition so cant shair any advice or info, but i can understand about the not knowing and searching for answers

Just remembetr what ever they diagnios your DS with it wont change him Its just a medical name it wont change him, its just a name and often comes with a plan on how to deal with it
BIG HUGS to you

Im sure your son is beautifull, he sounds it

[Loopy Linda]

Again thanks,

i can honestly say i don't know anyone that has a child with difficulties...so i have no one to talk to...

i spoke with my husbands aunty, she is very caring, she also got on the internet to see what she could find, but she has had a rough time herself lately and when she tried to talk to me after finding what she could i could hear her tears, but it was nice to have someone understand my worries.

i keep trying to talk about it with my husband and he tells me i am reading too much into it and if the time comes and he has a problem with something we will deal with it then, and also that i am worrying myself about things that may or may not happen at sometime in the future.

in some ways what he says is so true...but i will still worry today about when he is 6 months, 2 yrs, 7 yrs, and 21yrs...that is me. but also i want to know what problems he may be facing so i can do what i can to help him overcome it. i put it to my husband that if we know that by time he is 2 he still won't be walking but if he had of had a walker from9 months he may have started already then we do it.

i guess this is the same for every parent in a similar situation.

how did your partners handle it in early days, and how are they now?

[Nowhere]

My husband has only just now started to be open out how he feels about mikenzees hurdles, he has always loved her and cuddled her but he was very distant from her care for along time and has been very quiet and withdrawn kenz is 19 months old now and for the last 2 months he has really started to pen up and talk to me and the drs moer which is really helping, he has also started to help out more with her care, it wasnt that he didnt want to before but was scared of doing something wrong or making her pain worse, she is very funny about how she is held etc

[Loopy Linda]

My baby is Gordy and my husband just doesn't want to know about possibilities, there will be a problem when there is one and don't create a problem worrying about what may happen.
he will hold gordy but as soon as he screws up his face he is handing him back " he is hungry"...good excuse

Linda

[immy]

Hi mikenzees mum, yep got the $1000 bonus and it was gone the day I received it, bills bills bills. It's a help though. I'd hand it back plus more for having a normal healthy baby anyday.

[sunshyne]

HI, sorry my name is Stacey. I totally understand what you mean about the developmental stages, up till about 4 weeks ago i didnt think DD would ever play with a toy and last night she has started to clap (its a funny one handed clap but its a clap). DD is 8 months and 1 week and can roll one way but not back again, she can sit with the help of us and as i said i hope to have her sitting by herself for chrissy (yay for christmass :xmas: )- which will make her about 10 and a bit months old. There is a place here in perth that does hydotherapy (thru Disability Services) so im going to get DD into that next term to try and help her tone, i feel she is starting to get frustrated in not being able to move or do things. She better start moving soon, she is berry berry heavy!!!:laughing:

DD takes Losec for the reflux and some days its better than others. The constant spewing really gets to me some days, i know that there are worse things to be complaining about but come on can a kid that small have that much to spew... got to make it funny somewhere :p

Did i read somewhere that your DD is on losec too?? How do you find it?

[Nowhere]

Hi sunshine i didnt realise you was in perth as well, are you doing the hydrotherapy at PMH if so we might see you there kenzees physio is trying to get her in there too if not we wil be looking for another place to do it,

Kenzee is on losec to, i find it better then the other meds available in the same class such as zoton and nexium, but stil doesnt cut the pain out completly and dosnt help the vomiting at all just the pain, kenzee is also on domperadone to help the gastric emptying to reduce the amount of reflux, she has also had fundoplication surgery which is an operation to stop reflux, how ever it wasnt 100 percent afective on kenz hense whe she is fed on a continuos feed, and as of the 29 of november her feeds will be bypassing her tummy al togther so we should get NO reflux at all, but we will see fingers crossed

And yer lol I agree how can a tiny baby seem to puke 100 mls from a 20 ml feed it fountain of puke comeing from a tiny baby is just not right lol


Where in perth are you, do you guys spend alot of time at PMH, we seem to be there most weeks

[sunshyne]

We are south - Maddington, and we probably dont spend near the time you spend at PMH. DD has only had a couple of stays there, the last one only 4 weeks ago for a week with RSV Bronchiolitis and then 7 days at home with oxygen. We see the paed once every couple of months and was seeing the speech people every couple of weeks but now we see them thru disability services and they come to our house - same as the physio.

The Hydro wasnt at PMH - cant remember i have the flyer somewhere around here, will have to find it... probably under the bills pile.

I feel for Mikenzee, she must be a little star!! No more pain (reflux pain anyway) would be wonderful for her.

Where abouts are you??

[Nowhere]

We are at the other end of perth we are in mindarie, wel caramar as of next week I cant wait lol

Thats good that you can now get most of you DD medical treatment done at home, we are able to brach out a bit from PMH now and do some at home or nearer to home but stil have alot to do with PMH

Where did you guys stay last time use was in was it 5D infants, or 8A respiratory, we used to always go to 5D but now my DD is to old LOL so we go to either 5c surgery when she has her ops or 8A all the nurses are lovely, we very rarely get not nice ones there

[MamaRabbit]

Hi everyone, it's great that so many people have found an outlet on this thread. Coping with so much uncertainty is a very lonely experience. At almost 3 years of age we are still undiagnosed - the never ending tests and hospital visits are difficult. As are mothers groups. I also tend to hide, not from embarassment, just wanting to escape the questions or looks of sympathy, hearing "everything will be okay, everyone develops different" when clearly everything will not be okay.

On the plus side though, my counsellor...or should I say positive psychologist....says that the average grieving cycle for situations like ours is close to 3 years. And I can see how I have changed over the years, from the fear, the guilt, the depression, so many questions unanswered, and still unanswered.... but I am travelling on a much more even keel now. I'm coming to the end of my cycle and now it is about integrating everything, and finding our groove, remembering who I am which in turn has made our entire family that much more balanced.

A little project she gave me was to every night before I go to bed I was to write down 3 things that I enjoyed or made me happy that day. It could be something wonderful DS did, the fact that I found the time to sit and enjoy a cup of tea, it could even be the same thing I wrote for 3 days running. And you know what, I find that now I have more than 3 things to write about...it's really hard to narrow it down. I'm even more proactive in making myself happy. I don't hide quite so much, I've made the effort to make new friends - mums I've met on the internet who are going through the same thing - I'm happy to drive and see them because we can simply be friends. I feel much more in control of both my destiny but also us as a family. Sounds a bit silly getting all this from 3 little things I wrote down on a piece of paper but it has been a really nice ritual for me.

[Loopy Linda]

Hi,

i put gordy's photo up yesterday...my husband told me to stop it and just put it up (a little harsh but needed) and after staring and comparing with his brothers' pics ( i know i shouldn't but...) hubby and i both decided he looks fine in pic, 11yr old's baby pic had a really long head from forceps still...and 4yr old's baby pic .... well...unfortunately he was not very photogenic!!!...lmao i am a horrible mum , he was beautiful to look at and actually all 3 of my boys are identical looking at same ages...just middle one did not photograph very well...

even hubby stated if they are going to stare at any they will be staring at kieran ( 4yr old) and wondering what happened?

i am a horrible mum i know

linda

[Loopy Linda]

Sorry i am still laughing at myself...11yr old ( jarrod) is identical to baby ( gordy) ecept jarrod's head is a little narrow where gordy's is a little wide...but both have same nose, eyes, hair, colouring....kieran has real chubby cheeks and pink blotchy skin with dark hair...i will blame the camera operator, he didn't look like that!!

linda

[Loopy Linda]

mamma rabbit,

i like your '3 good things' everyone should do the same,not just special hurdle jumper mothers....i know with my older boys they are a real PIA...but they are loving and sensitive and helpful( on occasion, if i bribe enough)...and sometimes i have to remind myself , that they are good ( mostly) and wonderful kids, ( just like EVERY MUM)

Linda

[Nowhere]

mama rabit

what a great idea that you counciler has you doing thats great, iknow what you mean about avoiding mothers group im the same i hate syperthy and the walking on egg shels

Good on you linda thats great step you enjoy that photo im sure it looks great

[kiwibird27]

mama rabbit, I like your idea!!!! 3 things will have to do that!!!

[MamaRabbit]

The trick is to do it just before you go to bed so then you are left pondering lovely thoughts before you fall asleep...I even feel like I wake up smiling these days.

So 3 things you are thankful for, that make you happy or that you enjoy....give it a go.

[sunshyne]

Mikenzees Mum, sorry for the late reply i have been a bit under the weather lately :rain: but am ok now.

The first stay at PMH was on 8A and she was only 8 weeks old, they had no beds on 5D. The nurses loved having a baby on the floor. And then the last stay which was about 4 weeks ago or so was on 5D and yes the nurses are lovely, we had one nurse called Penny, older lady and she was just lovely.

MamaRabbit, what a wonderful idea. I am terrible when i go to bed i lay there and worry about everything and then if im really tired i lay there and think about how tired i am, so i am going to try the three things idea and see how i go... thank you :thumbsup:

[sunshyne]

:wave: Linda, i was the same as you with the photos. Abbie is Down Syndrome and has the "typical" looks. I always worried that people would look at her "down syndrome" looks and not her but it turned out it was me looking at the "down syndrome" looks and not other people. It took a lot for me to get over the worry about Abbie not looking normal but now i look at her and i honestly cant see anything other than Abbie and to me she is perfect.

Other mums will probably be able to relate to this... It has just started but when i take Abbie to the shops or what ever we have started to get looks, not really bad looks just people looking at Abbie and you can tell that they are thinking "now i know there is something not right with that baby" and then i am reminded about her looks, but other than that she is just Abbie. Gees does that make sense??? Sorry :confused:

Anyways Linda, good on you for getting those pics up of your bewdiful boy :)

[amyt878]

I think we are so protective of our kids and we just want to look out for them.
So, if someone stares, I know I can sometimes get a little defensive, but I have to remind myself that maybe they just think she is cute???!! :)
Maddy is 2 and looks maybe more like just over 1 and everyone looks at me a little funny after I say her age.

[Loopy Linda]

Maddy is 2 and looks maybe more like just over 1 and everyone looks at me a little funny after I say her age.

I am always hearing that gordy looks like a newborn ( he is only 7 weeks) and how much did he weigh, he must have been tiny!...he was born 3.56kgs and just reached 4.6kgs. he was born at and is growing at a healthy rate and i am always hearing he is tiny! ( and half the mothers saying this have very fat babies only a few months older..yuck..)


Some people are just stupid!!!!

Linda

[kiwibird27]

When i tell people Megans age they say "Oh look how tired u are right now, you need to go to bed" I agree and smile, I used to say no she's developmentally delayed and explain but it's easier to agree than to make people sad!!!! Even if she looks good and happy people who haven't been through it just can't process the information some how........and just get really upset.........Maybe the mummies with (excuse the term) Normal kids can explain????

I guess she is normal to me...............I forget how unusual our situation is and probably freak people out!!!

[babeebellee]

Hi Everyone,

Sorry to drag up an old thread, but I found it while looking around the forum. It looked like a good place to rant...and share my feelings...

Firstly let me just say, I don't know how you all do it. I applaud all of you for your love and dedication to your children.

I'm so tired. So very very tired. Physically, emotionally, mentally. And this has only just started.

My DD was born 4 months ago and she's only been home for just over a month. Twelve long weeks in hospital, eleven weeks in NICU. After 2 major surgeries, she's finally home. The future is scary and very uncertain. The surgeries did not cure her, but it's made her condition more manageable. If you can call 3 hourly feeds and living with the constant fear of hypoglycaemia manageable.

Her condition is so rare that doctors have been unable to tell us what will happen next, let alone what the future will be like.

My husband and I, exhausted as we are, do everything we can to prevent the hypos in an effort to protect her brain. And so far we've been successful. But the hypos that she experience whilst in hospital may or may not have made a lasting impact...only time will tell.

We've noticed some delays in her motor skills, but we pray (everyday) that it was a result of the long stay in hospital and not because of brain damage. Milestones...when does it become less important??!

How am I coping? I'm not sure I am. I have days where I am positive things will work fine and DD will have a near "normal" life and that we'll be able to manage her with her diet. And then there are days, where it's all doom and gloom. Would life be easier if I knew what the future held? Dunno.

We've had DD home for a month now, but we haven't had any friends over. They've asked to visit, but I keep making excuses. What is wrong with me??! Besides being extremely tired, am I embarrassed? No, I don't think that's it. I'm just sad for her... I don't think I should be though. I don't know what it is. Looking at her you wouldn't really guess anything was wrong. Besides being overweight... and the NG tube. I guess I don't want to hear false reassurances... which I may or may not get. I'm pre-empting what people will do and say... really need to stop doing that.

What do you say to people who give you advice when they don't know what they are talking about? They might mean well... perhaps... Being as stressed and tired as I am, I am ready to give my MIL a stern talking to. She makes sly comments about me being impatient and not offering DD the bottle for long enough before feeding her through the tube. If I had the luxury of time, I would! DD goes hypo if not fed on time... I am so angry with MIL that I don't want her visiting anymore. Can you hear my frustration? :laughing: She's in the best position to help me, and instead of offering to help... she comes over to criticise.

OK, enough rambling. :ecomcity: What I've said is all over the place. Hope I made sense. Maybe more complaining tomorrow. :wave:


PS. Sorry for the long post!

[Loopy Linda]

come back and complain anytime you need to, what else would a SN section be if not a place to rant. doesn't need to even be about anything, jsut come in here and try to find as many ways of swearing without actually getting **** up, it is stress relief itself.

ok i didn't take in too much about your daughter, she is 4 months old, but has spent 3 months in hospy, she might be delayed, and has a tube. sounds like a lot of work. and if you and your husband have prevented a hypo you are doing a great job.

but we are nosy in sn section so now you have to answer our questions.

what is your name

what is your dd name

waht is dd conditon ( if known)

what state are you in?

which hospy you been using?

what did you do today?

good luck, and we have a sn chat thread, feel free to come talk in there, and don't worry about not making sense, most of us rarely makes sense! big hugs

[Nowhere]

hugs

we have kind of met in the feeding pump section,

this is what i say to most SN mums the first year is the hardest, and Im not saying your DDs condition will change after the first year but I do know that it gets easier youlearn to roll with the punches, and ignorent coments that people make seem to be like water of a ducks back, and if there not and you get hurt by it then come on to SN chat and ***** about it

As for the MIL she wil learn, its taken almost three years and for her to here some prety scary words from the dr for her to get it, Hopefuly yours wont take as long


please come and chat with us in SN chat thread we have a great little group there with a variety of issue, When i first came on this forum My DD and kiwibirds DD was the only tube feeders but now ther are a few more

IF you are feeling down and want to winge go ahead if you are excited about what seems to be a small mile stone to others is huge to you then come and share it with us
:hugs::hugs:

[kiwibird27]

I know how hard it is... the first year (esp first 6 months) is HELL... I can honestly say it will get better with time, I turned into a total recluse the first year....It is Perfectly normal... if u don't want visitors tell them to bugger off... nothing worse than trying to shove an NG down your childs throat (cause they ripped it out again) with 10min till they turn hypo, to put u off having guests!!

What operations did she have????

[babeebellee]

Thank you for your warm welcome! I was going to join the SN chat, but I couldn't follow what anyone was talking about. :) Sounds like you all know each other well. I'll pop in later to say hello.

Kiwibird, she had a pancreatectomy to remove parts of her pancreas. She wasn't responding the meds. The only thing keeping her stable was the glucose drip. She couldn't go home on a drip so our only option was surgery. It took two attempts to make any difference.

MIL just came by again today. Oh boy. DH gets so angry when she's around. She really knows how to push his buttons. I don't know why she can't be more understanding. It's not a happy place when she's around.

[Loopy Linda]

yay for mils! mine is wonderful..well she was ok all 5 times i met her! she lives 30 mins away so must be too far for her to travel, but her mother is in next suburb!

[embryonichappyperson]

My son's problems aren't anywhere as bad as some of the kids on this thread and *hugs* to all the mum's.

I cope as bet I can with Rohan's problems. I have been running on empty for a long time and I'm worn down and tired. (Though the extra tiredness is from being pregnant lol).

Rohan is a great kid and smart but I have to remember it's his problems not him and not to get too mad and grumpy.

He has ADHD, OCD and anxiety.