Re: sma type 2 - pregnancy, babys experiences etc

[Guest guest]

Hi Jenn,

 

i read your comment to jess and i was curious, do u have sma and if so what

type? me and my fiance are thinking of having a baby, he is going for a blood

test 2 c if he has the sma gene, if you could give me some details it would be

gr8.

 

also any 1 else with any info that cud help wud b gr8 x x

 

Thanks

 

natz

> For those of you who have had sex, what was your first time like?

> did it

> hurt? for how long?what helped with pain?

>

> Thanks,

>

[Guest guest]

I have type 2. I actually think we might've IM'ed about my

experiences before. I have a pretty detailed account on my website:

nekrosys.net

Jenn

On Nov 23, 2008, at 2:09 PM, natalie salisbury wrote:

> Hi Jenn,

>

> i read your comment to jess and i was curious, do u have sma and if

> so what type? me and my fiance are thinking of having a baby, he is

> going for a blood test 2 c if he has the sma gene, if you could

> give me some details it would be gr8.

>

> also any 1 else with any info that cud help wud b gr8 x x

>

> Thanks

>

> natz

[Guest guest]

This statement really bothers me for some reason.

Anyway, I have sma 1 or 2, depending on who you ask. I have two kids,

ages 5 & 3. The pregnancies were extraordinarily uncomplicated

considering I only weigh 43 lbs, and have an impossible time gaining

weight. I had to be intubated for my c-section deliveries which is

very dangerous for me (and most people with SMA). I'd say the most

challenging part, aside from surviving, is raising the kids. I hope

you have a support system in place before you even try conceiving.

On Nov 23, 2008, at 2:09 PM, natalie salisbury wrote:

>

> also any 1 else with any info that cud help wud b gr8 x x

[Guest guest]

Which statement?

L

Sent from my Verizon BlackBerry

Re: sma type 2 - pregnancy, babys experiences etc

This statement really bothers me for some reason.

Anyway, I have sma 1 or 2, depending on who you ask. I have two kids,

ages 5 & 3. The pregnancies were extraordinarily uncomplicated

considering I only weigh 43 lbs, and have an impossible time gaining

weight. I had to be intubated for my c-section deliveries which is

very dangerous for me (and most people with SMA). I'd say the most

challenging part, aside from surviving, is raising the kids. I hope

you have a support system in place before you even try conceiving.

On Nov 23, 2008, at 2:09 PM, natalie salisbury wrote:

>

> also any 1 else with any info that cud help wud b gr8 x x

[Guest guest]

This statement, Lori...

On Nov 23, 2008, at 5:43 PM, Lori wrote:

> >

> > also any 1 else with any info that cud help wud b gr8 x x

>

[Guest guest]

To and other moms, How exactly did you guys function while being

pregnant? How did your husbands lift you without squishing the baby? and how did

you do the whole toileting thing?

When I need to be transferred from one place to another I'd have to use a hoyer

lift. When I'm in the sling my legs are pressed against my stomach, so I wonder

if I was to ever become pregnant would I have to find another way to be

transferred. As for toileting, I use the regular toilet. When it's time to

remove my undies, I would have to lean forward, with my stomach pressed against

my legs, and when it's time to pull them back up, I'd have to do the samething.

So How did you guys do things?

»-(¯`v´¯)-»†åMmÌå ÄlÈxÄñÐêR»-(¯`v´¯)-»

________________________________

From: Malatesta <nekrosys@...>

Sent: Sunday, November 23, 2008 4:05:06 PM

Subject: Re: sma type 2 - pregnancy, babys experiences etc

I have type 2. I actually think we might've IM'ed about my

experiences before. I have a pretty detailed account on my website:

nekrosys.net

Jenn

On Nov 23, 2008, at 2:09 PM, natalie salisbury wrote:

> Hi Jenn,

>

> i read your comment to jess and i was curious, do u have sma and if

> so what type? me and my fiance are thinking of having a baby, he is

> going for a blood test 2 c if he has the sma gene, if you could

> give me some details it would be gr8.

>

> also any 1 else with any info that cud help wud b gr8 x x

>

> Thanks

>

> natz

[Guest guest]

It was really difficult, especially as the babies grew. He had to hold

me way out because it was very painful if my legs pressed too hard on

my belly. Somewhere around 28 weeks, I started laying down to pee

because it was just too uncomfortable to get on the toilet ten times a

day. My balance got weird as I grew, but nothing else changed too

drastically, other than the severe weakness with number two. And the

craziest part? I'd love another. =X I knew my body shouldn't/couldn't

handle another pregnancy, so I had a tubal. It wouldn't be fair the

risk my life yet again when my two kiddos that are already here need

me, either.

On Nov 23, 2008, at 6:31 PM, Tammia wrote:

> To and other moms, How exactly did you guys function while

> being pregnant? How did your husbands lift you without squishing the

> baby? and how did you do the whole toileting thing?

>

> When I need to be transferred from one place to another I'd have to

> use a hoyer lift. When I'm in the sling my legs are pressed against

> my stomach, so I wonder if I was to ever become pregnant would I

> have to find another way to be transferred. As for toileting, I use

> the regular toilet. When it's time to remove my undies, I would have

> to lean forward, with my stomach pressed against my legs, and when

> it's time to pull them back up, I'd have to do the samething. So How

> did you guys do things?

>

[Guest guest]

I pretty much did things the same way. Yes, my legs would press

against my stomach when I was getting moved and such, but it didn't

seem to hurt me or my kids. I was just heavier and " rounder. "

Jenn

On Nov 23, 2008, at 6:31 PM, Tammia wrote:

> How exactly did you guys function while being pregnant? How did

> your husbands lift you without squishing the baby? and how did you

> do the whole toileting thing?

[Guest guest]

Hello

Not to but in......

I have SMA Type I and I have a 19 month old daughter.  She was very much planned

and wanted though I got pregnant way quicker than I thought!  I had only been

off the pill for a month and we were getting ready to have checked for the

SMA gene when I found out I was already pregnant.  At that point, it didn't

matter to me because I never would have terminated if he was a carrier.

Luckily, my daughter is SMA though she's a carrier so she'll have to think about

that when she finds a SO.

Having a baby was the best thing I've ever done though one of the hardest.  I'd

like to do it again but we are leaning towards adopting a little boy

internationally.  I'm sure I'd get through a second pregnancy fine but, in the

off chance that I didn't, I'd never want to leave without a Mommy if it

was in my control.

 

Milinovich, SMA Type I

Wife to , Mommy to - 19 Months Old!

http://www.myspace.com/kindrana 

http://s174.photobucket.com/albums/w107/boramir/?start=0

 

________________________________

From: natalie salisbury <angeldelight1989@...>

Sent: Sunday, November 23, 2008 2:09:56 PM

Subject: Re: sma type 2 - pregnancy, babys experiences etc

Hi Jenn,

 

i read your comment to jess and i was curious, do u have sma and if so what

type? me and my fiance are thinking of having a baby, he is going for a blood

test 2 c if he has the sma gene, if you could give me some details it would be

gr8.

 

also any 1 else with any info that cud help wud b gr8 x x

 

Thanks

 

natz

> For those of you who have had sex, what was your first time like?

> did it

> hurt? for how long?what helped with pain?

>

> Thanks,

>

[Guest guest]

Those were such horrible thoughts that I had when I was pregnant with

Phin. Olivia was just about 's age when we found out.

I'd LOVE to hear more about your possible adoption. My heart tells me

our family just isn't done yet.

On Nov 23, 2008, at 10:14 PM, Milinovich wrote:

>

> Having a baby was the best thing I've ever done though one of the

> hardest. I'd like to do it again but we are leaning towards

> adopting a little boy internationally. I'm sure I'd get through a

> second pregnancy fine but, in the off chance that I didn't, I'd

> never want to leave without a Mommy if it was in my control.

[Guest guest]

Tammia,

One of the very first things I considered about having a baby was the weight I

would gain and the care I would need while I was pregnant.  I had very open

and brutal conversations with my husbands and my personal assistants about

this.  I'm not a big eater but I knew that I would need to eat much better when

I was pregnant to have a healthy baby.  I had never weighed more than 100lbs

before I got pregnant.  For me, the use of a hoyer is very painful on my

back.  I have lukie rods fused around my spin and the 'sling' of a hoyer

always makes my legs go into spasms and I get shooting pains in my back.  With

this being the case, I've always preferred the one person cradle-hold

lift (like a baby).  By the end of my pregnancy, I weighed about 124 and she

was born 9 weeks early (totally unrelated to my SMA, all women in my family

have pre-term labor they just couldn't stop mine b/c she was DETERMINED to come

out).  Due to the way my torso is

shaped, she squished everything around in there and came out mostly to my right

side instead of out the middle like typical.  We always joke that she 'fungshei

(sp?)' my insides but forgot to put everything back when she came out  

Anyhow, much like Amy, my husband did a lot of my transfers to make sure not to

squish me.  My assistant at the time was very strong though and she was also

able to keep me pretty stretched out.  One thing my OB was good about

reminding me though was that babies are VERY protected in there and, although it

may seem like your squishing it or something, in all actuallity, they are

usually fine .

As far as toileting goes, I used to do it the same way you do but I started

having balance problems in college.  Since then, I'm transferred onto a bed,

undressed, transferred onto the toilet (or bedside commode), I do my thing, I'm

transferred back to bed onto a CHUX, cleaned up, redressed, and transferred

back into my wheelchair.

Since I've had , I've had trouble getting my weight back down to 100lb, I

hover between 110-115 but my doctors keep telling me that I am finally at a

healthy weight for my height.  I just keep feeling like a cow LOL.

 

Milinovich, SMA Type I

Wife to , Mommy to - 19 Months Old!

http://www.myspace.com/kindrana 

http://s174.photobucket.com/albums/w107/boramir/?start=0

Re: sma type 2 - pregnancy, babys experiences etc

I have type 2.  I actually think we might've IM'ed about my

experiences before.  I have a pretty detailed account on my website:

nekrosys.net

Jenn

On Nov 23, 2008, at 2:09 PM, natalie salisbury wrote:

> Hi Jenn,

>

> i read your comment to jess and i was curious, do u have sma and if

> so what type? me and my fiance are thinking of having a baby, he is

> going for a blood test 2 c if he has the sma gene, if you could

> give me some details it would be gr8.

>

> also any 1 else with any info that cud help wud b gr8 x x

>

> Thanks

>

> natz

[Guest guest]

Thank you all so much. Those questions and concerns have been on my mind for a

while. I'm not trying to get pregnant or anything now, just was thinking about

the future

»-(¯`v´¯)-»†åMmÌå ÄlÈxÄñÐêR»-(¯`v´¯)-»

________________________________

From: Milinovich <dvlwksp@...>

Sent: Sunday, November 23, 2008 9:29:00 PM

Subject: Re: sma type 2 - pregnancy, babys experiences etc

Tammia,

One of the very first things I considered about having a baby was the weight I

would gain and the care I would need while I was pregnant. I had very open and

brutal conversations with my husbands and my personal assistants about this.

I'm not a big eater but I knew that I would need to eat much better when I was

pregnant to have a healthy baby. I had never weighed more than 100lbs before I

got pregnant. For me, the use of a hoyer is very painful on my back. I have

lukie rods fused around my spin and the 'sling' of a hoyer always makes my legs

go into spasms and I get shooting pains in my back. With this being the case,

I've always preferred the one person cradle-hold lift (like a baby). By the end

of my pregnancy, I weighed about 124 and she was born 9 weeks early (totally

unrelated to my SMA, all women in my family have pre-term labor they just

couldn't stop mine b/c she was DETERMINED to come out). Due to the way my torso

is

shaped, she squished everything around in there and came out mostly to my right

side instead of out the middle like typical. We always joke that she 'fungshei

(sp?)' my insides but forgot to put everything back when she came out

Anyhow, much like Amy, my husband did a lot of my transfers to make sure not to

squish me. My assistant at the time was very strong though and she was also

able to keep me pretty stretched out. One thing my OB was good about reminding

me though was that babies are VERY protected in there and, although it may seem

like your squishing it or something, in all actuallity, they are usually fine

.

As far as toileting goes, I used to do it the same way you do but I started

having balance problems in college. Since then, I'm transferred onto a bed,

undressed, transferred onto the toilet (or bedside commode), I do my thing, I'm

transferred back to bed onto a CHUX, cleaned up, redressed, and transferred back

into my wheelchair.

Since I've had , I've had trouble getting my weight back down to 100lb, I

hover between 110-115 but my doctors keep telling me that I am finally at a

healthy weight for my height. I just keep feeling like a cow LOL.

Milinovich, SMA Type I

Wife to , Mommy to - 19 Months Old!

http://www.myspace. com/kindrana

http://s174. photobucket. com/albums/ w107/boramir/ ?start=0

Re: sma type 2 - pregnancy, babys experiences etc

I have type 2. I actually think we might've IM'ed about my

experiences before. I have a pretty detailed account on my website:

nekrosys.net

Jenn

On Nov 23, 2008, at 2:09 PM, natalie salisbury wrote:

> Hi Jenn,

>

> i read your comment to jess and i was curious, do u have sma and if

> so what type? me and my fiance are thinking of having a baby, he is

> going for a blood test 2 c if he has the sma gene, if you could

> give me some details it would be gr8.

>

> also any 1 else with any info that cud help wud b gr8 x x

>

> Thanks

>

> natz

[Guest guest]

hi i have spoken on here before about pregnancies, previously read jenn

malatesta's web page on her experiences but i have gone back to it today and the

page is unavailable, if you could please resend me the link jenn i would

appreciate it??

i have sma 2 and got the all clear from drs to have a baby with help of course,

which i am very pleased about. of course there is a level of risk involved. me

and my partener have been trying for 3 months now and had no luck but keeping

our hopes high.

we would really appreciate any previouse experience stories thanks you x x x

natalie x

________________________________

From: Malatesta <nekrosys@...>

Sent: Sun, 23 November, 2008 22:05:06

Subject: Re: sma type 2 - pregnancy, babys experiences etc

I have type 2. I actually think we might've IM'ed about my

experiences before. I have a pretty detailed account on my website:

nekrosys.net

Jenn

On Nov 23, 2008, at 2:09 PM, natalie salisbury wrote:

> Hi Jenn,

>

> i read your comment to jess and i was curious, do u have sma and if

> so what type? me and my fiance are thinking of having a baby, he is

> going for a blood test 2 c if he has the sma gene, if you could

> give me some details it would be gr8.

>

> also any 1 else with any info that cud help wud b gr8 x x

>

> Thanks

>

> natz

[Guest guest]

Hi ,

I have a five year old son and I have type 2. Do you have any specific

questions

about pregnancy or managing a new born baby? I'd be happy to answer specific

questions, either here or you can email me individually on

mulberry1104@....

Be great to hear from you..

x

From: [mailto: ] On Behalf

Of

natalie salisbury

Sent: 08 February 2011 22:32

Subject: Re: sma type 2 - pregnancy, babys experiences etc

hi i have spoken on here before about pregnancies, previously read jenn

malatesta's web page on her experiences but i have gone back to it today and the

page is unavailable, if you could please resend me the link jenn i would

appreciate it??

i have sma 2 and got the all clear from drs to have a baby with help of course,

which i am very pleased about. of course there is a level of risk involved. me

and my partener have been trying for 3 months now and had no luck but keeping

our hopes high.

we would really appreciate any previouse experience stories thanks you x x x

natalie x

________________________________

From: Malatesta <nekrosys@... <mailto:nekrosys%40comcast.net> >

<mailto:%40>

Sent: Sun, 23 November, 2008 22:05:06

Subject: Re: sma type 2 - pregnancy, babys experiences etc

I have type 2. I actually think we might've IM'ed about my

experiences before. I have a pretty detailed account on my website:

nekrosys.net

Jenn

On Nov 23, 2008, at 2:09 PM, natalie salisbury wrote:

> Hi Jenn,

>

> i read your comment to jess and i was curious, do u have sma and if

> so what type? me and my fiance are thinking of having a baby, he is

> going for a blood test 2 c if he has the sma gene, if you could

> give me some details it would be gr8.

>

> also any 1 else with any info that cud help wud b gr8 x x

>

> Thanks

>

> natz

[Guest guest]

Speaking of babies...

My hubby just got his genetic testing back and is NOT a carrier for SMA!!!! We

are thrilled, as this will mean we can continue with getting pregnant the

natural way. We will start trying in September this year (to line up with my

current athletic commitments which end in November). I've already been on a Vit

B complex and folic acid. Any other supplements women with SMA would recommend

to get my body ready for a little one?

<3Kendra

[Guest guest]

You could check with your OB, if you haven't already, to see if he/she would

recommend prenatal vitamins to prepare. I do know of women who start these years

before planning to become pregnant.

Suzanne

On Feb 10, 2011, at 2:32 AM, kendrascalia wrote:

> Speaking of babies...

>

> My hubby just got his genetic testing back and is NOT a carrier for SMA!!!! We

are thrilled, as this will mean we can continue with getting pregnant the

natural way. We will start trying in September this year (to line up with my

current athletic commitments which end in November). I've already been on a Vit

B complex and folic acid. Any other supplements women with SMA would recommend

to get my body ready for a little one?

>

> <3Kendra

>

>

[Guest guest]

Hi Kendra

Good luck - it took me 5 cycles and I was 39, and even then I was surprised J

I started to change my lifestyle - working out what I was eating that was

unhealthy

and cutting out on high fat food. My diet became really healthy and I gave up

smoking and cut out alcohol completely. I was a bit overweight (to be honest I

am

now) but in my first trimester I lost about 1.5 stone (21 pounds) because I felt

constantly nauseous and couldn't eat much - so if you slimmer than me to start

with

it's something to look out for. My obs was fine about me losing the weight but

I

know for some SMAers it would be a real issue.

I took up meditation and did a lot of visualizations - imagining swimmers

desperately

seeking a gold medal! Lol. Swear that's what clinched it!

I reduced my pain medication (mainly non-steroidals) and had early nights and

tried

hard to reduce my working hours (that was the thing I did least well)

Good luck with it all, it's worth more than you can imagine J

x

From: [mailto: ] On Behalf

Of

kendrascalia

Sent: 10 February 2011 07:33

Subject: Re: sma type 2 - pregnancy, babys experiences etc

Speaking of babies...

My hubby just got his genetic testing back and is NOT a carrier for SMA!!!! We

are

thrilled, as this will mean we can continue with getting pregnant the natural

way. We

will start trying in September this year (to line up with my current athletic

commitments which end in November). I've already been on a Vit B complex and

folic

acid. Any other supplements women with SMA would recommend to get my body ready

for a

little one?

<3Kendra