hypoplastic left arm
- Forums
- Special needs
- hypoplastic left arm
3/9/08 19:33
2/9/08 20:46
hi jodie, sorry to hear you are having a bad time of it, i too had trouble with my first dd, i seemed to be bf all day and night it turned out that he was not feeding all the time he was using me for comfort ie a dummy, as soon as i stopped and put him on bottle he settled realy well, but as lisa says its totaly down to you what you decide to do and a happy mum realy makes a happy baby.
isabel has been a little sweetie all day today, apart from not wanting a nap, she has been helping me make cakes, putting washing in the machine, holding the pegs for me, she has just wanted to help me all day bless her, but i am glad she is in bed now lol.
im a bit peed off now cos channel 5 is playing up and im waiting to watch csi miami, fink i might give up and go to be got an early start tomorrow
Hope all goes well tomorrow Lisa, let me know how you get on hun xx
nite nite all take care xxx
2/9/08 18:54
hi joide you must do what you want to do, its not your hubby feeding him its you.plus you may find that niles is alot more settled on bottles. hes had the best start in life so you have done fantastic. if your hubby really wants you to keep bf why not just do the morning and bed time feed or something like that. just remenber your him mummy you know whats best for both of you. happy mummy equals happy baby xxx
harry has his appointment tomorrow so will let you know how we get on tomorrow night xx
2/9/08 10:26
Hi everyone hope you are doing ok?
Im so stressed out breastfeeding just is not out it is so much harder than i remeber with jordan.Nile has problems latching on then my milk comes out too fast & chokes him he then refuses to feed.And when he does feed ok he still seems hungry afterwards no matter how long he has been feeding for.He just never seems settled all i do is feed all day & night.
I really feel like giving up & just putting him on formula but i know my husband will be upset he really likes the idea of breastfeeding but i just dont know what to do i want to breastfeed him but it just doesnt seem to be working out.
sorry to go on just not sure what to do.x
1/9/08 13:24
poor abi xxx
well my two are a sleep after an active time at play group, then once they wake up we must go into town and do a nappy run.
its nice weather here today but a little windy, we took the boys to the beach yesterday and james loved it. it started to scream when it was time to go, which he is starting to do alot now.
had my hair cut on saturday and i love it!!!! so made another appointment for 6 weeks time to keep on top of it or it will be another 6 months before i go again. my email is lisa.c***ers@hotmail.co.uk
right must get on, catch you all soon xx
1/9/08 09:08
hi pam good to hear from you, bet you will be glad when kids back at school, i expect abs will have to have a new leg made freqeuently as she is growing so much, glad to hear her leg has healed, issy seems to be getting a lot of red spots on the end of her arm, thin k its just something to do with the heat, as her arm gets very hot at the end as the blood vessels that should have gone down to her hand are all gathered in one place.
hey Lisa i still cant get holiday pics on here, so you will have to give me your email and i will send some, hope you and the boys are well, im off round my friends to give him some computer lessons, he is not good with technology lol so i will catch you all later
take care all xxxx
31/8/08 16:09
HI ALL HOWS U ALL AND YOUR LITTLE ONES DOING YEAH ABS BACK TO SCHOOL ON WEDNESDAY YEAH YEAH I KNOW I SHOULDNT BE THAT PLEASED LOL, ABS STUMP ALOT BETTER THANKS GOD I SUPPOSE ITS THE START OF THINGS AS SHES GROWING THERES NOT MUCH U CAN REALLY DO JUST KEEP AN EYE ON THINGS
WHAT HAVE U ALL BEEN UP TOOXX
30/8/08 00:00
hi toc, hows teddie doing, hope all is well with your pregnancy too.
they are right little chatter boxes now lisa, love listning to their babbles when playing, tried to have a nap this afternoon but issy was having none of it, she kept saying up mum up mum then all of a sudden i felt somthing hit me when i looked she had taken her nappy off and thrown it at me lmao. she hasnt had a nap all week hope she dont keep that up as i need one at times lol
issy is feeding herself all the time now, i manage to get the odd spoonfull in now and then and she is getting less down herself and on the floor.
well think im gonna get off to me ickle bed as its almost midnight and ive been up since 4 am, hopefully get a layin tomorrow.
take care all xxxx
29/8/08 19:40
hi toc all really good here thanks how are you and hows teddy getting on? was it you or leanne thats pg or is it both i cant remember. if its you when are you due? and hows it all going?
iam just colouring my hair as going to get it cut tomorrow. not had it done since feb so badly needs doing.harry went from 4:30 yesterday afternoon till 1:30 this morning with out a feed, now if i can get him to go 9 hours again that would be great as long as its through the night lol. james is really chatting a way to himself now and like to shout at you lol. and when harry cries he goes and put his dummy in, it sosweet.
right off to wash this colour off before it burns my hair off lol.
catch you all soon xx
29/8/08 09:48
hiya ladys how r u all? and hows the little ones? all good i hope xxx
27/8/08 16:24
im crap a sewing, im gonna have a go though but not on her coat, i have a sewing machine but never used it, so im going to practice on some old clothes, mil makes all issys cardigans she is a fantastic knitter so all the left sleeves are shorter too./, it just looks nicer.
cant believe how many words she is comming out with now you only have to say something a few times and she repeats it, she had us all laughing earlier, she was in the front room playing and came toddling out to the kitchen with one slipper on one trainer both on wrong feet,her cardigan warpped round her neck saying gadin (garden) lol.
harry is doing well with his bottles, issys only ever managed 5oz and that was at 6 months, now she drinks milk till it comes outta her ears.
catch you all later take care all xxx
27/8/08 09:52
know what you mean about rolling up sleaves. harrys trousers are a nightmare cos his leg is so short i roll his up as hate the look of it just hanging over his leg, but is so bulky. may have to look into alturning his trousers at some point. he has some lovely jeans in the next size up so might ask mil to have a look and see what she can do. as iam rubbish at stuff like that.
hope you get a nap later.
catch you all soon xx
27/8/08 05:08
omg jodie think nile has his days and nights confused and as lisa says you must be knackard you poor thing hope he settles soon for you, it makes a hell of a difference if you can get a good nights sleep.
mil going home to day wooohooo, she made issy two lovely dresses yesteday and took the left arm up on her new coat for me as i hate having to roll her sleeves up as it gets too bulky.
still cant laughing about james and his carjacking lol that is so funny.
right better get going and get ready for work
at least its only till 10 this morning and im usually still half asleep by the time i get home so hopefully get a little nap hehehehetake care all xxxxxx
26/8/08 20:58
joide you must be shattered (((hug))) really hope he starts to settle soon. do you think that maybe his hip/leg may be causing him some pain? always worth asking the doctor if you already havent.
putting harry up to 7oz bottles tomorrow as he has been draining all his bottles the last two days. he is such a lump now. really need to get him weighed as sure he is over a stone now.
james hasnt eaten hardly anything all day. his gums are all sore and sollown with his teeth coming so know it down to that. hope he eats tomorrow as hate him not eating. right off to put my feet up
catch you all soon xx
26/8/08 13:47
Hi everyone
Hope you are all doing ok!
Nile still wont sleep at nights been giving him formula or expressed breast milk last feed at night so i know he has had plenty to eat.Also put him in our bed for a couple of nights as he wont sleep in his moses basket but that has not helped either.He slept from 12-2.30 then was awake the rest of the night!Come down stairs at 5 as he would not settle & he went quiet straight away just sat staring at me for a hour.Gave up on things to try guess he just dont like night times!
Lisa let me know how you get on at your appointment when you go!
Just been trying to tidy my house today its such as mess just cant seem to get anything done lately.Need to get in some kind of routine everything just seems a struggle.
Take care everyone Jodie xx
26/8/08 09:41
that is so funny lisa, hopefully he going to be a mechanic lol they are so funny hope they keep it up and forget about the terrible twos, iwent shopping with mil, got issy some trainers and some new pjs she finally grow out of the 6/9 months ones.
mil is making her 2 more dresses whilst she is here (going home tomorrow). she hasnt been too bad this time apart from keep saying she wished she lived closer.
well better go can hear her moving about upstairs lol
take care all xxxxx
25/8/08 13:00
just waiting for martin to finish work, hopefully wont to too long. hate it when he works bank holidays. hopefully if it doesnt rain might go for a walk along sea front for some freash air.
went for a really long walk yesterday and james walked most of it, which he loved. he is such a good walker and always holds your hand. it was really funny as he kept going up to cars and trying the door handles and pointing to the locks. hope hes not picking a cearer in nicking cars!!! lol.
well off to find some food
catch you all soon xx
24/8/08 11:17
gotta have a good housey day to day as mil is comming on monday and staying over
she is alright realy just cant keep her opinions to herself.we are now haveing to watch what we say in front of issy as she is now picking up words very easily, mind you its not the same when you stump ya toe and have to shout awwww flippy floppy lol when you so want to say something else.
hope all goes well on the 3rd Lisa, we wrote a list of things we wanted to know before we went so we got all the answers and understood her contiontion as your mind always goes blank when you get there. there are several names for her conditon hypoplastic and amelia and somnething else but i cant remember.
well better go get me bum in gear, take care all xxxxx
23/8/08 11:16
yes they mentions leg lenghening for harry but has his leg is over 50% shorter the said removeal may be the better option. but we will see what they say on the 3rd. they just told us his condtion was called hypoplastic femur.
lol at issy arent they turning into funny little people now
james likes to sweep the floor and ride the hoover lol.well got some friends coming over at 2:30 so think i might just have a quick clean
hope you all have a nice bank holiday xx
23/8/08 10:09
awww poor baby nile, it seems such a lot for a baby to have to go through so many operations, my friends daughter had to have a hip replacement at the age of 5 as the ball was too big for the socket and it kept comming out but it had also damaged her socket, it just dosent seem fair.
Lisa have they mentioned bone lenthing for Harry, i know you said his hip is as it should be which is good, have they said its the same condition as niles.
the mood swings havent arrived as yet thank god but i have been so hot and sweatty for the last 2 days last night i was sweating that much i thought id wet the bed lmao
but other than that all is well.issy has been a little angel for a few days, she helped me unload the washing and it was so funny she did the same as me gave it a little shake before putting it in the basket, she is also trying to put clothes on the wrong ones of course, she came tottering in with a pait of my knickers on, her head through one leg hole and arm through the other i almost pmsl, she also tries desperatly to put her cardigan on, she is almost there bless her,
well better go and get on with some housey stuff, my kitchen looks like a disaster area
take care all xxxxx
HARRY SLEPT ALL NIGHT LAST NIGHT 10 WHOLE HOURS
on a not so happy note, the surgeon told us harry will have to have his leg amputated at around the age of 2
they told us his condition is called proximal femoral focal deficiency (PFFD) his femur is around 55% shorter and theres no way can legthen the bone tthat much without causing harry years of distress and pain. they said the cut off point is around 40% so we are way over that.
we were kinda expecting this news but still so upsetting that little harry will lose his cute little foot
we go back in november to start planning what will happen next and will talk with the consultants for over an hour so every thing is made clear to us. the sergeon was really nice and made us feel at ease so know our little boy is in the best possible hands. he quicly went throught what would likly happen and said that they would fuse his knee togther to make his femur longer and then amputate the leg in line with his longer femur.we are gald about this as was really worried he would lose his whole leg.
well its been a long day, hope harry sleeps all night tonight
catch you soon xx