View Full Version : So Scared and lost...
Oh, where to start??
My DD was born in July. When she was born the Dr's were concerned that she may have a genetic disorder (sorry if that is the the wrong terminology). I should explain a little more...
When she was born it was noted that there was something that just wasn't quite right about her. Her ears were really lowset, she had a double cleft in the left ear (2 dints in the top of the lobe instead of one) plus a few other signs of genetic disorder. It was also noted that she had a Sacral Dimple on her back. And that her feet were not positioned correctly, one Paed said Rocker Bottom Feet which is a VERY rare deformity that is usually only corrected by surgery if they get in young enough. The physio said it was Talipes, which is more so where bubba crosses it's legs in utero and the feet get squashed up into the shins and they have no stretch on their feet.
On day 1, the genetisits came and took some blood and did an extra check over of her and her features. It was thought that she had Edwards or something similar. The genetic tests came back clear.
On day 2, the Sacral Dimple was leaking fluid!! So she was immediately taken over to special care to be looked at more thoroughly. She ended up in special care for 5 days.
During the course of the next week no-one was really telling us anything apart from they don't know what's happening or what the HOLE in her BACK is or how it may effect her...
Amongst the confusing conversations with a non-english speaking Paed (no offence intended) we gathered that they weren't going to say anything much in case I got stressed out and lost my milk. She had been taken for an ultrasound and it came back showing that there was a cyst communicating between the hole and the spinal cord. To look further into it, they took her for an MRI on day 6, which they couldn't get results from as she moved too much - I don't see how... the noise freaked her out so much she passed out in the machine. But it showed that there is no cyst. She came home the next day.
on day 13 we had to go for another MRI to see if the results would be better and she was put under a general with life support and all.
when we saw the Neurosurgeon, he explained that they had a conflict between himself and the MRI guys as to what was up... Apparently she was too small to get accurate results and they couldn't tell for sure if she has an extremely rare situation where her spinal cord splits and re-joins or if the nerves are tangled.
He wanted her to go for another MRI at around 6 months. They didn't have any openings until May (9 months).
DF and I discussed things and we decided that it would be best to TTC#2 so that if she does have special needs, she won't be old enough to realise that some attention has been put towards the baby. And I feel that if she does have special needs I can't do it in a couple of years, that if I'm not pregnant by her MRI that I won't be having any more kiddos. You know, we started 3 months ago and so far no luck. This was okay until this morning.
The Children's Hospital rang me this morning and gave me a date for her MRI... NEXT THURSDAY.
I'm so scared that the results will be bad (twisted nerves) and that she's going to need an operation on her spinal cord. DF doesn't understand and always tells me to just get over it and deal with it.
I can handle serioal casting for 10 weeks, and plastic splints, and excercises, but I don't think I am strong enough for this...
I was going to stop TTC in May after her MRI regardless. Now I don't know what to do! If she has special needs I can't knowing take attention away from her!!
:hugs: :hugs: :hugs: it must be tough on you :fingerscrossed: that your bubs scan will be ok
I don't really know what to say. Exept :hugs: to tou and my fingers are crossed for you and your dd :fingerscrossed:
I am thinking of you!
mummade3
27-02-2007, 22:18
my gosh.. thats so sad for u n ur dd... i hope u find answers n i wish u lots of strength n hugs at this time!! fingers crossed all goes well!!
the_queen
27-02-2007, 22:39
:hugs: :hugs: :hugs: :hugs:
Special kids are only sent to the strongest mummies. You'll be fine. You'll amaze yourself with how strong you can be. And she'll teach you about resilience, definitely.
Don't let yourself be railroaded by the doctors - ask to see a different one if you don't completely understand what they're telling you. Ask to see a social worker, most hospital's will have someone in that capacity who can just listen to you vent about things, and who can possibly advocate on your behalf for the information you need.
SorenLorensen
27-02-2007, 22:52
:hugs: to you
it must be such a hard time for you and your hubby.
PunkyDiva
27-02-2007, 22:59
:hugs: :kiss: to you all and some great advice and support has been given already.
Easier said then done but take a deep breathe and forget about/push to the back of your mind "what might be", concentrate on the here and now, even if that's just getting a cup of tea or finishing that ironing. Don't try and deal with things until you know for sure and as Queenie said try and have someone on your side that can push for answers without that emotional attachment.
My heart really goes out to you. So sorry to hear that your little girl is having such a hard time.
As for having another baby, well that is a tough one, if you are meant to have another baby, another baby will be sent to you regardless of what is going on. There are many mothers out there, and on here that have a child/baby with special needs and also have other children. You sound like a very strong woman, and can do anything you put your mind to. Dont let doubt stop you from giving your daughter a chance to be a big sister.
:fingerscrossed: that everything goes well with your DDs test and all of this worry will have been for nothing. :hugs:
Mummaof2
28-02-2007, 13:44
Lots of :hugs: prayers and positive thoughts
being sent your way.
:fingerscrossed: fingers that everything is ok with your DD
Thanks for the kind words!
I guess I really only wrote it to get it out. I was feeling extremely vulnerable last night... I spent the day at my Mums and am feeling better now.
Still scared of next week, but I have to focus on the positives and take it one thing at a time...
our little treasures
28-02-2007, 23:35
:hugs: :hugs: :hugs: :hugs:
Special kids are only sent to the strongest mummies. You'll be fine. You'll amaze yourself with how strong you can be. And she'll teach you about resilience, definitely.
Don't let yourself be railroaded by the doctors - ask to see a different one if you don't completely understand what they're telling you. Ask to see a social worker, most hospital's will have someone in that capacity who can just listen to you vent about things, and who can possibly advocate on your behalf for the information you need.
I agree.. We are only given what we can handle!! While it seems a lot to deal with in a few years you will look back and realise how strong you are!!
MamaRabbit
01-03-2007, 20:59
Hi Widget, I wrote to you under another thread on the site but just came in here to read your original post. I know how terrifying the whole waiting game is, regardless of what the test says, you can do it! Your DD can too. Little ones are so tough, and if you find your daughter does have special needs, you will find your groove, get the help or services you need and adapt your life to suit your needs. Life is after all what you make of it. You'll do great.
Re: having another baby, my 2 y/o has special needs, he takes up alot of my time but I also have a 10 month old and she is proving to be a great little friend and helper. My son enjoys having her around and watches what she does, which in turn helps with his development. She is like my little shadow.
Most importantly, just remember that they grow so fast. My 10 month old is so active, before I know it she will be running rings around my 2 y/o, fussing and mothering him which will be great for both him and me. As for my son, although he is not like any other 2 y/o developmentally he too has come a really long way this past year with the help of physio and other services.
Trust me you will figure it out and get through it. It's mothers instinct.
Take care and let us know how you get on.
Cheers,
Ohhh, I can feel another break-down coming!
We recieved a letter from the Neurosurgeon yesterday...
He said it looks like her spinal cord is definitely split in a special way and it looks like she will need elective surgery :crying:
What does that mean?? Are they going to make us find $$ that doesn't exist for the operation??
I'll have to make an appointment to see him when I get home from Netball, I can't be a blubbering mess until she goes to bed tonight!!
Widget - I hope you don't mind but I had a look at your forum details and noticed that you live very close to me.
I'd like to talk to you more about doctors and things as I mght have some helpful suggestions, but I don't know a lot about your personal situation.
Please pm me if you would like to chat - I'll be around all day today.
Tam-I-Am
20-03-2007, 12:47
Elective surgery doesn't mean that you pay for it, if its done in the public system. All it means is that its not considered "emergency" surgery - so you have to go on a waiting list to have it done.
The way that elective surgery waiting lists basically work is that the case is assigned an urgency rating, and thus assigned a place in the waiting queue - but that place can change as new people are added to the waiting list.
I would ring the public hospital that your DD is having her surgery at for further information about the waiting list, and how long you might have to wait.
HTH :)
Elective surgery doesn't mean that you pay for it, if its done in the public system. All it means is that its not considered "emergency" surgery - so you have to go on a waiting list to have it done.
The way that elective surgery waiting lists basically work is that the case is assigned an urgency rating, and thus assigned a place in the waiting queue - but that place can change as new people are added to the waiting list.
I would ring the public hospital that your DD is having her surgery at for further information about the waiting list, and how long you might have to wait.
HTH :)
Thanks Tam!!
That takes some pressure off for now! I couldn't make an appointment today, seems his secretary is the only one who can do that and she isn't in today. I assume it would be at the Children's Hospital as thats where we go for everything so far.
Curious how long they'd make a baby wait for spinal cord surgery though... I guess I shouldn't worry so much, she is kicking brilliantly, shame they all want her to crawl already!!
I don't think I'll ever understand how her physio can want her to have so much movement when she strictly said that we can't get a bouncer or walker for her... How is she supposed to build her lower limb muscles if she's not allowed to excersise them? I mean, she was in foot casts for 10 weeks, they can't seriously expect her to progress as the same rate as MOST babies... And if a 10 month old has only JUST started craling and she doesn't have anything wrong with her spinal cord, why is it so darn important that my 8 month old isn't crawling yet? She will soon though I'm sure, she's starting to get onto her knees, it's quite cute to watch actually :D she's just got to learn to have her knees under her rather than to the side still and push up on her arms at the same time... She's just not ready to crawl yet and I'm loving every minute of it LOL
But if they're all telling she WILL walk and she is only in pain when pooing, why the surgery??
I guess I wait to see the Neurosurgeon for that!!
Thanks heaps!! Need to stress less, will never fall pregnant while I'm so stressed (but not showing my concerns to anyone)...
Thanks Tam!!
I don't think I'll ever understand how her physio can want her to have so much movement when she strictly said that we can't get a bouncer or walker for her... How is she supposed to build her lower limb muscles if she's not allowed to excersise them? I mean, she was in foot casts for 10 weeks, they can't seriously expect her to progress as the same rate as MOST babies... And if a 10 month old has only JUST started craling and she doesn't have anything wrong with her spinal cord, why is it so darn important that my 8 month old isn't crawling yet? She will soon though I'm sure, she's starting to get onto her knees, it's quite cute to watch actually :D she's just got to learn to have her knees under her rather than to the side still and push up on her arms at the same time... She's just not ready to crawl yet and I'm loving every minute of it LOL
But if they're all telling she WILL walk and she is only in pain when pooing, why the surgery??
I guess I wait to see the Neurosurgeon for that!!
Thanks heaps!! Need to stress less, will never fall pregnant while I'm so stressed (but not showing my concerns to anyone)...
Hi - Maybe you need to tell the physio's/drs how you feel about them pushing for DD to crawl, they may back off a little. Are you allowed to take DD swimming? We had to develop DD's muscles due to low tone and found this a really good way to exercise the lower limbs.
Hope you get the answers you need from the neurosurgeon.
I've been on a waiting list for elective surgery to have part of a disc removed. I was waiting roughly 7mnths but my surgery isn't considered urgent.
Do you know which hospital they would send her too? You could possibly ring and speak to someone there just to ease your mind while you wait for your next appointment.
I've been on a waiting list for elective surgery to have part of a disc removed. I was waiting roughly 7mnths but my surgery isn't considered urgent.
Do you know which hospital they would send her too? You could possibly ring and speak to someone there just to ease your mind while you wait for your next appointment.
It will be the Children's Hospital at Westmead, well, we've been going there since she was 2 weeks old...
The MRI's were all done there and her ultrasounds. Her Neurosurgeon is also based there too.
Hope I'm not just assuming, I don't think I'd be comfortable with someone else doing the surgery...
I can't believe a slipped disc took 7 months to get in.
I hope it doesn't take that long with DD I have to go back to work in 4 months...
The Neurosurgeons secretary rang me back this morning and we are booked in for next Tuesday to see him. She said he has a habit of being very "blunt" in his letters and that she may not actually need surgery... Let's hope thats the case...
Let you know what we find out on Tuesday!!
kiwibird27
21-03-2007, 14:46
Good luck. Ask lots of questions!!! Write questions down too and ask if u can e-mail further questions to your neurosurgeon, You always remember more after u leave.
My physio said that walkers etc don't help build the muscles they need, one muscle at a time??!! If there core muscles aren't strong enough then u can do more damage holding them up in a walker!!! Ask her lots of questions too!!
Like kiwibird27 said, ask as many questions as you want. Don't think it'll make you look dumb! Sometimes I wonder whether I sound ridiculous when I'm at dd2's geneticist appts but he just explains it a bit better. He also has a genetics councillor with him at every appt, and she is just as good.
Some specialists can be very blunt and it can make you feel terrible. Our first paediatrician was like this, I just wanted to cry every time I had to take dd2 to see him! We have a different paed now who is wonderful.
We're seeing a bone specialist at Westmead in May, who I've been told by both my geneticist and paediatrician is very blunt and has a straightforward way of saying things, but he is internationally renowned for his work. So we're going to be putting on our steel armour when we go to see him!!
Let yourself cry sometimes if you need to. It's really hard to cope to start with, especially with your hormones still raging after being pregnant!
You'll surprise yourself when you look back and realise just how strong you've been throughout your dd's life. It's hard to imagine how you'll cope, but you just do.
Come into the Special Needs section:) . We don't bite:p
I never wanted to belong in the special needs area, but the S.N. parents have given me the support I need and the understanding so many other people just don't have. It's hard to talk to people who don't have a S.N. child - they can sympathise and give comfort, but 1st hand experience is a different story (just imo anyway).
theycallmemum
22-03-2007, 10:20
Like kiwibird27 said, ask as many questions as you want. Don't think it'll make you look dumb! Sometimes I wonder whether I sound ridiculous when I'm at dd2's geneticist appts but he just explains it a bit better. He also has a genetics councillor with him at every appt, and she is just as good.
Some specialists can be very blunt and it can make you feel terrible. Our first paediatrician was like this, I just wanted to cry every time I had to take dd2 to see him! We have a different paed now who is wonderful.
We're seeing a bone specialist at Westmead in May, who I've been told by both my geneticist and paediatrician is very blunt and has a straightforward way of saying things, but he is internationally renowned for his work. So we're going to be putting on our steel armour when we go to see him!!
Let yourself cry sometimes if you need to. It's really hard to cope to start with, especially with your hormones still raging after being pregnant!
You'll surprise yourself when you look back and realise just how strong you've been throughout your dd's life. It's hard to imagine how you'll cope, but you just do.
Come into the Special Needs section:) . We don't bite:p
I never wanted to belong in the special needs area, but the S.N. parents have given me the support I need and the understanding so many other people just don't have. It's hard to talk to people who don't have a S.N. child - they can sympathise and give comfort, but 1st hand experience is a different story (just imo anyway).
Must be the same orthopaedic specialist (Prof someone) my son has seen at Westmead, no bed side matter at all but he is supposed to be the best. He wanted to operate on my son's legs if he isn't walking on his heels by 10 but the surgery sounds so awful and painful I'm holding off hoping he will magically stop doing it by May which will be his 11th birthday.
The phsyios and ot's at Westmead are fantastic, we went there for about 6 years.
damien's mum
22-03-2007, 10:24
Good luck. Ask lots of questions!!! Write questions down too and ask if u can e-mail further questions to your neurosurgeon, You always remember more after u leave.
That's a great idea!!!
Goodluck hun!! :fingerscrossed:
:hugs: :hugs: :hugs:
Had the Neurosurgeon appointment this morning...
She has "Split Cord Malformation Type 2" I haven't looked it up yet but will do sometime today...
They are going to operate to make sure there is nothing in the split that can cause damage or get in the way and "unsnag" her spinal cord - it is "stuck" to something low down and should be LOTS higher up...
Apparently this is the best result we could have had!
They usually operate around 12-13 months of age, but because of her size we may be able to get her in at 10-11 months!!
:yelclap:
Sorry to "dumb it down" but lots of fancy words and my brain is rather gooey right now...
damien's mum
27-03-2007, 13:14
I have never heard anything about it either, i hope that you can all that you need to!! I got my fingers crossed for you :fingerscrossed:
Thats great news hun. Its not "dumbed down" at all. If you'd bamboozled me with lots of big words, I'd have had no idea whether to congratulate you or hand you a tissue. :laughing:
So have they said when they're going to do it and how long it'll take to recover? Sorry, I really don't know much about it but it sounds pretty yucky.
Your poor little princess. Hopefully once she's had this done, that'll be the end of it.
I forgot to mention...
She'll be hospital for 5 days and on anti-biotics. The spinal cord fluid will certainly leak...
It's elective so I guess it depends when they can get her in...
Jen, if you see me on Friday - DON'T offer me a tissue - I'm always ok until someone asks me...
So have they said when they're going to do it and how long it'll take to recover? Sorry, I really don't know much about it but it sounds pretty yucky.
He's looking at May/June, which I know is closer, but I prefer that to July/August - I won't cope if it's after I go back to work!!
Not sure on recovery time, DF tells me she'll be sore for about 3 weeks, Dr didn't say anything, but I can email him to ask questions if I need to...
I'll do my research first though!
I wonder if it's similar to the surgery I'm about to have on my spine?
Did they tell you the name of the operation?
I have some info here about recovery etc which might be helpful..
I wonder if it's similar to the surgery I'm about to have on my spine?
Did they tell you the name of the operation?
I have some info here about recovery etc which might be helpful..
He MAY have put it in the letter thats to be written up and sent to us... I only heard the "big words" and was getting teary at some of them, so sorta tuned out, I knew MIL was listening and could answer Questions about what he said for me... Let you know when it gets here!
Righto, no mention of it will be made WHEN I see you on Friday (whats this IF business???) I can't wait to meet your little popsicle BTW.
I think its good if they do it May/June...at least then its over and done with and you're not getting stressed about it for another couple of months. And the recovery time sounds better than I had imagined...I guess children are just resilient.
:fingerscrossed: thats the end of it after this operation.
I thought I put this in, but I didn't... Since this is basically my journal about it, I should!
After the Neurosurgeon appointment on Tuesday Dad and I were dropping DD at MIL's for the night and she was explaining to Dad what the Neurosurgeon had said...
When she mentioned that the cord appears to be stuck on something (they think it's the crack/hole/jagged edge on one of her vertebrae, I can't remember 2 days later :o) Dad mentioned something I never even thought about...
Sometimes when you lay her down on her back, she SCREAMS her head off - he said she does seem to be in a lot of pain. But it's not all the time, so it's like it's not always stuck, just sometimes.
I thought she was just screaming because she didn't want to be put down.
Dad's theory fits better though - he got her out of the car for me when I got home from netball as she was asleep and I always wake her...
She was asleep on Dad's shoulder and he put her down on the floor on her back - she started screaming - so he turned her over onto her tummy and she was quiet - still asleep!!
I guess it didn't cross my mind as I never would have thought that the spnal cord could get stuck on anything!!
But it does make sense - it doesn't happen all the time and never when you put her down on her tummy.
Lets hope this op stops that!!
Got a date for her surgery... 7th of May - OMG that's less than a month away!!
I'm still spinning and not sure how I'm thinking/feeling...
oh wow that's quick! 3days before mine :p
Do you have to go to a pre-op appointment? They'll give you a heap of info then.
I have to fill out an admission form and get it back to them ASAP...
There were heaps of booklets on staying at the Childrens Hospital with the letter so not sure Nel...
hugs for annabelle...we can talk about it more tomorrow :hugs:
Had the pre-op appt yesterday... They didn't really give me too much info, we only saw the anethetist (sp?).
By gee the nerves are kicking in now - 4 days to go!!!
I won't mention everything else that is going on as I want this to only be about DD and her situation...
As for TTC#2 - Month 6 and I'm not expecting this month to be it... Not going to stop as whenever it happens will be an okay gap, regardless of everything else!! I was talking to someone who's daughter had the same surgery at 7 months... she crawled 2 weeks after the operation and now at 9 has no problems with anything!! That in itself is fantastic to hear about as you don't hear of spinal cords needing to be untethered (un-snagged) and it's good to know that this surgery can make the world of difference!!
Doesn't mean I'm not cr@pping myself though!!
Good luck for the opration I wil be thinking f you guys, please know that she wil be in the best of hands during her op only the best surgeans in the world operate on our special kids :hugs:
Harlequin
03-05-2007, 15:57
Good luck for the operation. :hugs:
Hi Widget
Hope Surgery went OK. Lots of prayers for your little one. My DD is also July '06 born. My heart goes out for you....:hugs: :hugs: :hugs:
your family and little girl are in my prayers I hope it all went well for her many :hugs: to you both
Ok, so the Neurosurgeon decided that "split cord malformation type 2" is incorrect... It's a Menigocele Manque...
So far I have this on it:
Meningocoele manqué is a congenital anomaly relating to the spinal cord, cauda equina and the filum terminale commonly found on exploration of the spinal cord in cases of spina bifida occulta. The anomalies consist of fibrous bands, aberrant nerve roots and adhesions within the theca which may tether or press on the neural structures so interfering with nerve conduction and causing increasing neurological deficit. Treatment is to free the neural structures from these bands and adhesions surgically. An account is given of 45 cases with a discussion of their similarity to cases of meningocoele, thus justifying the naming of a previously undescribed clinical entity. Meningocoele manqué demonstrates the relation of spina bifida occulta to spina bifida cystica as having a similar origin differing only in degree of severity. All the cases discussed are drawn from a personal series of 200 cases of spina bifida occulta which have had surgical exploration of the spinal cord.
He also mentioned Diastematomyelia which is this:
Diastematomyelia (di·a·stem·a·to·my·elia) is a congenital anomaly, often associated with spina bifida, in which the spinal cord is split into halves by a bony spicule or fibrous band, each half being surrounded by a dural sac.
So ultimately, by my reseach on the words he's given me, she does have Spina Bifida just no-one will officially tell me that...
But, since the surgery, she has a lot more movement and is getting ready to crawl but still not there yet - is going backwards which is a BIG step!! :D
***UPDATE***
On the 28th of August 2007 at 13 months and 8 days old - she is officially crawling!!! :D We had a few slight movements (one knee would move, on the 27th, 2 knee movements) but it wasn't a crawl.
The surgery was a success and it was all worth it!
She is standing, with assistance, but loves it. Has found the coffee table and is trying to pull herself up, but doesn't quite have the upper body strength yet, but she'll get there, it won't be long.
We have a major milestone!! I'm so ecstatic I end up in tears of joy that she is a "normal" bub now! Albeit behind a tad, but she is normal and can crawl!!!
I really do need to thank everyone who has offered me support over the last 7 months, there is no way I could have gone through it all without the support and strength shared by you. I can't believe the last 13 months and now I have an answer on whether or not she will be able to move like a normal kid - not sure on sports yet, will see how her back holds up when she's older. I know she will walk, but we need to work on straightening her ankles when she stands as they both roll inwards, but 12 months of not putting pressure on them would do that to anyone!
So, I thought I'd do an update before I forgot as this is kinda her journal.
Lastcenturymum
30-08-2007, 07:41
Wow, thats great to hear. Well done to her and to you guys for all you have been thru! She might even manage with some orthotics or braces for her feet.
No wonder you are so proud. there is so much help you can get these days with physio, exercises etc. Keep pushing till you get what works for her.
:yelclap:
We do see physio. Have been since she was 7 days old. I just read through and did fail to mention that. Physio will be so excited tomorrow!!
Shanaynay
30-08-2007, 08:54
That's fantastic to hear Widge! :yelclap:
BreakfastatTiffanys
30-08-2007, 09:10
CONGRATULATIONS
What a little trooper:smiliedance: :smiliedance: :smiliedance: :smiliedance:
Sarieslittlemen
30-08-2007, 09:27
Congratulations hon, I'm glad she's doing so well!
Awwwwwwwwwwwwwwwww YAY!!!!!!
:yelclap: WTG Miss A!!!!
Oh, oh, oh... She now says... Mum, Dad, gone, there and Teddy!! MIL said another one, but if I can't remember it it can't be often that she says it!
MIL was saying to her last night while I was out of view "where's mummy" she was looking for me. Anyways, after I while I poked my head around the corner after she said it... DD looked at me and said "dere"!!
At my appt this morning, she was a bit grumpy, very tired, so I was showing her the posters... One had 3 teddies in seatbelts in the car. I pointed at them and said teddy... she came back with "eddy" and she repeated it several times looking at the picture!!
THEN at lunch we had HJ's and I put a couple of chips in her bowl and she was playing and tipped the bowl out and was holding her hands like I do when she's finished a meal... I said "is it all gone?" and she said "all gone", but when asked again she just said "gone" and was repeating it!!
OMG she's so clever this week!! And that's not the end of it!! :D
While she still needs assistance on her feet... She was WALKING!!! She intentionally lifted her knees and moved her feet forward!! She hasn't learnt to distribute her weight yet so she really does need assistance but by geez she's done SO much this week!!
I'm so, so, so, so, SO proud of her!! :yes:
Physio won't know what hit her!!
TinyStar
30-08-2007, 20:05
I've only read the last few posts Widge but thats just AMAZING!
Way to Go Miss A, there's no stopping her now!
:smiliedance: <---- Miss A on her feet.
:smiliedance: Widge that's fantastic!! I'm so happy for you guys! :yes: :D
Thanks!!
Oh, TinyStar... In 2 days, she has started crawling, added 3 new words to her vocab and tonight has taken her first intentional steps!! :smiliedance:
Oh, and I forgot, that she does do that ^^^ on her feet, she normally only bounces on her bum, but has been bouncing on her feet as well in the last couple of days!!
TinyStar
30-08-2007, 20:22
Thats great Widge, we'll have to take her to the playcentre again.
KapowSchazam
30-08-2007, 20:27
YAY for Miss A!!! YAY for Widge!!!
Happy days!!! :smiliedance: :smiliedance:
Squeegee
30-08-2007, 20:57
What an incredible journey you have had...This is my first visit to this post and I am amazed at how courageous your DD and YOU have been throughout. Someone else in the post said special children are given to the strogest mummies and I think you have shown that to be true. Huge :hugs: for you and your DD. We hope to continue reading about your conquests.
Kat'smum
01-09-2007, 18:18
Hi
I have been though a somewhat simmilar thing with my DD#1 (she is now almost 4 )
We noticed at 5 weeks of age she had a pea sized lump on her taiblone - we had taken her to first my hubbys gp then our gp (both thought it was a general cyst and she was put on antibiotics) by 9 weeks of age the lump had grown to the size of a huge olive and was very red and angry looking.
We were told to take her up to the chlds hospital as they didnt know what was going on.
We realised things were bad when the hospital more and more doctors were brought in to look at dd - she had an u/s done and it showed that it was a tumor of some type.
They mentioned it was a tailgut cytst , menigocele or sacrococygeal teratoma.
We were supposed to be booked in the following week to see a specialest and have an MRI done.
We were called back that afternoon and told that DD was to bypass the mri and go straight for the operation the following monday.
She ended up having a teratoma (germ cell tumor) which is also classed as a type of neural tube defect.
We were just very lucky that her tumor was not classed as cancer (though there were a few tiny cancerous cells) and that her tumor did not grow like it should have inutero.
I know what it is like to have a bubs go though that sort of surgery - and the scares of if something will be wrong with the next bub.
FWIW - my next bub had some mild health problems but is going though some communication langage delays and is currently awaiting test results to see if he has a metaboic disorder.
And my DD#2's birth was a cord prolapse emergency c-section.
All of these things were just "luck of the draw" things that happen (well apart from the possible metabolic disorder that DS may have but that is yet to be found out)
My DD#1 didn't start walking untill she was 15 months old - I was very scared that they had cut a nerve during her operation (which was one of the things that could happen) and also she was not toilet trained untill after she was three years old - all due to the surgery but still apart from a nice scar and no bum cheeks she is fine.
There was also a wory about the tumor returning and high chances of cancer within the first three years - but she has had her all clear!!!
Just wanted to let you know that I know what you have gone though *huge hugs*
Amanda-Jane
ChubStar
01-09-2007, 22:16
Widget, I have just read all your posts and wanted to say a big congratulations to your DD for learning to crawl, talk and walk all in the same week!! :D
I have a friend who was born with spina bifida. The docs told his mum that he might die and if he survived he'd almost certainly never walk. This was 30 years ago, but he is now a semi-professional boxer. He is one of the fitest people I know. Anything is possible!!
Gee Amanda-Jane, you've been through more than me!!
Thankyou for sharing your story with me. It is appreciated. I know it can be hard to talk about sometimes.
I'm glad your DD1 is okay and has been cleared.
I was worried about nerve damage as well, seeing that an operation to the spinal cord guarantees spinal cord fluid leakage and there was a chance of nerve damage (especially when everything is so small). But her Neurosurgeon said he had to cut so high on her back to avoid nerve damage and the tether was higher than he originally thought.
At least now that she is on the move I KNOW that my fears of her not walking were for nothing and that the surgery was needed and it wasn't something we agreed to that had no result.
We've recently had our mid-term ultrasound for this bub and we had to go to the Fetal Welfare Lab to have it done. The sonographer said that as DD's problem was within her spine there is no way they would pick it up in utero, she also said that DD's talipes should have been picked up as it happens when the bub is developing in early pregnancy and that this bub's feet look perfect. I didn't ask about having this baby checked at birth at my appt 2 days ago because I didn't like the Dr I saw who insisted that 4 days in my dates doesn't make a difference (where I say it does if I happen to go over). So I have a few questions to ask when I see someone decent - hopefully at my next appt in 4 weeks.
I'm still so stoked that she has come so far! She's had a very big week this week!!
Thanks Chub. Only thing that concerns me now is if she'll be able to jump, like skipping and such. That's something to tackle later though and see how she feels about it, if her back hurts then I won't be pushing for her to be the next big thing in netball LOL her little sis can do that instead... Given that their Daddy is almost 7 foot, good chance they'll have great height!! hehehehe
It's been a while. Thought it was time for an update...
She is now cruising the furniture and starting to climb things, she can pull herself to standing as well!! Still not walking but that's okay, if you walk with her (holding on) she has a blast. She is learning to distribute her weight so I don't think it'll be too far off - I reckon 6 months MAX, depending on how she takes the new bub's arrival...
She is getting such a big girl now and I won't be able to say my baby soon as she'll be my TODDLER!!! :D
:smiliedance::yelclap: WTG Miss A!!!!!!!!!! :yelclap:
Pauline70
18-11-2007, 19:51
:hugs: to you
it must be such a hard time for you and your hubby. my daughter hannah has Talipes, and that to me can get upsetting at times, i could not even imagin what you are feeling.
if you ever need to talk feel free to pm me, i may not really know what you are going through but am happy to listen
:hugs: my thoughts are with you. My DD also has talipes in her right foot - was the most severe my Paed had ever seen. Wishing you all the best with the MRI - be strong, your baby needs all your love and support.
If you'd like to chat about talipes, PM me.
Wishing you all the best with the MRI - be strong, your baby needs all your love and support.
Thanks, but I think she's had all the MRI's she's going to need now, she's already had the surgery and has progressed so much in the last 6 months!
Talipes in one foot... That would be hard as both feet would always be noticeably different... I guess I was *sort of* lucky that she has/d it with both feet...
16 months on and she still has noticeably "funny" feet... she has a pouch over each of her heels around the ankle area which the Physio said we most likely won't be able to correct. When she stands, her ankles roll inwards and we have to find some extra cash to get some special shoes for her...
Apparently Talipes is from the beginnings of the pregnancy and it should be picked up in pregnancy at your scans - so the sonographer from the fetal welfare lab says...
Ok!! Been a while!!
Her little sis was born in December, week before xmas. No spina bifida, but has a heart condition, likely to be fine for now but may cause some dramas when she's older and more active...
She took her sister in well and loves her so much!!
Her walking is another story... I have a new video to show you all!! It's only been the last 2 days that she's been taking more than 5 steps on her own, likes the support and comfort of having someone/thing touching her...
So... new program as photobucket is playing up and I don't have a yahoo account... let see if we can get it on here!!!
WALKING!!!! (http://tinypic.com/usermedia.php?uo=O6WqPJdzpkbWH9XpthX%2F6Q%3D%3D)
I should add. She is almost 23 months now!!!
what a lovelt priceless video she is walking so so well thats just beutifull
sory to here your new born has a heart condition :hugs:
xlouxloux
14-06-2008, 22:32
thats so beautiful Widget, i must admit i got a lil chocked up watching it, she looks so happy and proud of herself as im sure u are too :)
:babydust2:GO ANNABELLE!!!:babydust2:
grass is always greener
14-06-2008, 23:39
That is such precious footage, thankyou so much for sharing it with us. She is a beautiful little girl.
Just got back from Neurosurgeon appointment for Annabelle...
We go back to see him YEARLY from now on!!! YAY!!
Also said that we won't need to do another MRI, maybe in a couple of YEARS just to make sure the spinal cord is still doing what it's supposed to!!
Good news all round! He was the first of her Drs to see her walk!! :D
:smiliedance: Glad everything is going well for you guys Widge :)
Me too Nel!! He's more than happy to do the MRI once she's old enough not to need the anesthetic!!
It's great! Now we just need to clear the developmental assessment in October, have another good clinic appointment in November and she should be on yearly to see the clinic after that!!
And, around the time we get the yearly clearance for Annabelle, I'm hoping to get another long clearance for Rebecca's heart!! :fingerscrossed:
That's great hun! :yes:
got my :fingerscrossed: all goes well with the upcoming appointments :)
Only thing that concerns me now is if she'll be able to jump, like skipping and such. That's something to tackle later though and see how she feels about it, if her back hurts then I won't be pushing for her to be the next big thing in netball LOL her little sis can do that instead... Given that their Daddy is almost 7 foot, good chance they'll have great height!! hehehehe
I was just having a gander through my threads on the iPhone app and came across this one lol
So it's been a VERY long time since I've updated in here and haven't read back over the whole thing...
Just an update on this post...
She jumps really well!!! Her physio was saying that with the lack of range in movement of her feet and ankles, she shouldn't be able to jump, she can't tippy toe as the skin that joins the underside of her toes is too tight.
She can jump a good 2-3 foot ground to ground and is building her confidence to jump from heights, she can jump down to the ground from a high jump mat height so she's pretty good!!!
Caught her trying to skip rope a few weeks ago too so cute!!!
Still having major issues with her bowels (don't know if that part's in here or another thread)... It's like she refuses to poo grrr she knows the consequences if she doesn't poo but it's not making a difference.
It's almost a certainty that she has nerve damage... Nearly 4 1/2 and still nowhere near being toilet trained, she doesn't know when it's coming... Has only asked prior a handful of times in 2 years to go to the toilet and she's proud of her wee but getting her to love doing #2's is proving very difficult...
She's talking fabulously! Still about 18 months behind, so severely speech delayed. Still severely delayed with her fine motor as well... Her social delay has however improved significantly! She willingly plays with other children now rather than cowering away from them...
She has "friends" that she always raves on about!!
She's almost finished a year of DET early intervention classes but is still nowhere school ready so she's lucky she's a July bub and we have the option to delay school for a year... We're applying for another year of DET EI... hopefully another year will see her ready to start school and not be teased for being different...
Ummm... Want an update on something I missed??? Let know lol
mummy2babyj&j
26-10-2010, 23:15
Just read thru your thread and just wanted to say you are a amazing mother and i bet your little girl is adorable how is dd2
I was just having a gander through my threads on the iPhone app and came across this one lol
So it's been a VERY long time since I've updated in here and haven't read back over the whole thing...
Just an update on this post...
She jumps really well!!! Her physio was saying that with the lack of range in movement of her feet and ankles, she shouldn't be able to jump, she can't tippy toe as the skin that joins the underside of her toes is too tight.
She can jump a good 2-3 foot ground to ground and is building her confidence to jump from heights, she can jump down to the ground from a high jump mat height so she's pretty good!!!
Caught her trying to skip rope a few weeks ago too so cute!!!
Still having major issues with her bowels (don't know if that part's in here or another thread)... It's like she refuses to poo grrr she knows the consequences if she doesn't poo but it's not making a difference.
It's almost a certainty that she has nerve damage... Nearly 4 1/2 and still nowhere near being toilet trained, she doesn't know when it's coming... Has only asked prior a handful of times in 2 years to go to the toilet and she's proud of her wee but getting her to love doing #2's is proving very difficult...
She's talking fabulously! Still about 18 months behind, so severely speech delayed. Still severely delayed with her fine motor as well... Her social delay has however improved significantly! She willingly plays with other children now rather than cowering away from them...
She has "friends" that she always raves on about!!
She's almost finished a year of DET early intervention classes but is still nowhere school ready so she's lucky she's a July bub and we have the option to delay school for a year... We're applying for another year of DET EI... hopefully another year will see her ready to start school and not be teased for being different...
Ummm... Want an update on something I missed??? Let know lol
thats great, sounds like she has had some improvement all around, Well apart form the bowel area.
well done
xxx
Just read thru your thread and just wanted to say you are a amazing mother and i bet your little girl is adorable how is dd2
She's good! Still thriving!! We did get a long break between appointments. 12 months the first time and 18 months the second time. Go back to her cardio in April... Might have to make it March though as she'll be a big sister too in either April or May lol
She's good! Still thriving!! We did get a long break between appointments. 12 months the first time and 18 months the second time. Go back to her cardio in April... Might have to make it March though as she'll be a big sister too in either April or May lol
thats awesome big gaps in between apointments. I didnt know you was having another one thats awesome congrats
thats great, sounds like she has had some improvement all around, Well apart form the bowel area.
well done
xxx
Thanks :D we see it as improvement! Her speechie is STOKED with her... But while she is improving, she's been 18 months behind for a couple of years that we know of... Still on par with her sister basically...
Have to try and get that next step going so she breaks that 18 months behind stage...
thats awesome big gaps in between apointments. I didnt know you was having another one thats awesome congrats
Yeah #3... OMG!!!
One with spina bifida, one with a rare heart condition, I've got something wrong, FH has something wrong... What's this bub gonna have?? Lol
I think I'd be lost if bub didn't have something wrong lol it's not normal for us!!
Great to hear miss A is doing so well :yelclap: I remember us talking about all this like it was yesterday :eek: If it's any consolation Kai still wont do number two's on the toilet and will hold it for days on end :hair:
I think I'd be lost if bub didn't have something wrong lol it's not normal for us!!
well I cross my fingers for you that this one is totaly healthy
becca022
27-10-2010, 08:19
I just found this thread. It sounds like your dd is doing really well. My ds also has Spina Bifida. He is in a wheelchair & is quite a few years developmentally delayed. We are expecting number 3 aswell, his 2 year old sister is fine & this one seems fine too. Good luck with number 3. I hope everythings fine for you.
I just found this thread. It sounds like your dd is doing really well. My ds also has Spina Bifida. He is in a wheelchair & is quite a few years developmentally delayed. We are expecting number 3 aswell, his 2 year old sister is fine & this one seems fine too. Good luck with number 3. I hope everythings fine for you.
Thanks! We did get lucky with her! Her SB is occulta (hidden) and mild. Pretty sure if she didn't have the surgery at 10 months she would be wheelchair bound as her cord would have snapped - that's a scary concept!!
So while she has the extra large dimple (saccogeceal or something like that) that her spinal cord fluid was leaking from (thankfully the hole has closed over now) everything was inside her spine, nothing protruded...
It was a devastating thing to find out after her birth, but I'll take her issues over what they originally thought was wrong with her!! Edwards syndrome is a very scary thought with it being rare bub lives to 2... I love that she has SB over Edwards!!
Doing all the tests again this time and if all comes back clear we just have to hope we get one that isn't taken from us at 2 days to SCN... Just want 1 to come home as planned!!
But... If this bub takes after big sisters we could be looking at a prem bubba and likely SCN again... Can't win lol
I'm rambling now!!
Took me a while but I found this from my phone...
#3 has arrived...
What can I say??
Right now I'm not sure if the blues have just kicked in or if I'm freaking out for a legitimate reason...
Ben was born 28/4. All was looking good...
I watched them check him over, concentrating on the "problem areas"...
Man did I jump out of my skin when I saw a sacral dimple! Made them check his feet - yep look like may have a slight case of DD1s feet problems too...
Dr said most brand newies have a murmur at birth so waiting for his heart to be listened to again...
Surely I'm just freaking out for no reason and he doesn't have both of their conditions...
I need a hug!! I'm not in a good place right now...
Sent from my iPhone as usual lol
HUGS and congrats on your little boy!!! Hope all is well with both of you! Must be scary expecting the worst but try to hang in there and enjoy your new little creation <3 fingers crossed he is a healthy little boy :)
A mothers love
30-04-2011, 09:30
Oh widget. I've just read through what you have been going through and wanted to send big hugs and tell you I think your the bravest. Let us know how the little man goes and how the girls are.
OurLittleBlessing
30-04-2011, 11:53
Oh Widget sweetheart, my heart just broke for you when I read about your worries with your little boy.
As hard as it is, please try not to let your mind run away with you just yet. Nothing is conclusive yet.
I wish there was something I could do. I really do. :hugs: :hugs: :hugs:
huge hugs hun :hugs: I wish there was something I could do to make this time less stressfull for you. I really hope your little bloke gets the all clear soon so you can breathe easier :hugs: Your an amazing mumma and have been through so much, as a pp said try not to let your mind run to wild just yet.
~*clairesmum*~
30-04-2011, 13:35
:hugs: Widget - I guess u found it sorry i took so long
I really hope everything turns out fine :hugs:
midwifemum
30-04-2011, 14:55
Widget, try not to worry yet, let the Drs look at everything. It could all be a coincidence. We are here for you whatever the outcome xx
OurLittleBlessing
02-05-2011, 12:43
How are you feeling today Widget?
Thinking of you :hugs: :hugs: and praying for good news for your son :hugs: :hugs:
Tired lol
Ultrasound booked for next Monday on his spine. His oxygen saturation levels were perfect!
Things are looking a lot better!
Sent from my iPhone as usual lol
im so happy things r looking ok widget. CONGRATS on the birth of ur son!!!!!!!!!!!!!!!!!!:cheerleader2:
OurLittleBlessing
05-05-2011, 09:19
So glad you are feeling better about it all.
Good luck for Monday!!
OurLittleBlessing
10-05-2011, 13:56
How did the ultrasound go Widget? Thinking of you...
The ultrasound was good. The nurse called the doctor in and they both looked at it and are both confident it's perfect!!
Still have to book the pead to get the actual results though...
Powered by vBulletin® Version 4.1.9 Copyright © 2012 vBulletin Solutions, Inc. All rights reserved.