We have updated Marconi's photo album and will be updating Regans soon

Hope you are all well

Moz, Rachel & Boys

Hi our son Adam is now 13 years old and has the x-linked form of MTM,
he is doing great physically but we are having problems with headaches
especially in the mornings, I have a feeling that this could be his
oxygen levels at night does anybody have any others ideas?  I know
that it is not his eyes! Next problem is that adam is leaving all of
his food and I dont know if I should have his swallowing assessed
again?  I am a bit confused about this because he seems to be able to
eat sweets and crisps ok although he takes ages.  We have had to put a
lock on the door where all the choc bars and crisps are kept because
he was leaving all of his food and then we found a stash of wrappers
under his bed.  Even though we have done this he is still leaving his
food - if I give him a dish of spaghetti he is happy and he will eat
it but that is not a very good diet when he needs to gain weight.  Is
anybody else having this problem?  Any advice would be appreciated.
Thanks

Hi Serena

Adam is now 13 and that is an awkward age for any young man, I
remember I was the same with eating at his age, is he loosing a lot
of weight? It is a good idea to try and keep his weight up as much
as possible at this time as sudden growth spurts around the age of
puberty can cause other problems such as scoliosis of the spine
which can lead to breathing difficulties, it is well worth having an
over night oximetry done, is he drowsy in the day time? His head
aches could be caused by his oxygen levels falling in the night, or
it could just be all the chocolate and junk food he's been eating
lately.

I cant really give any advise from first hand experience as my boys
are only 1 year and 3 years old, there are some other parents on
this site with boys around the same age, hopefully they will have
some ideas.

Hope you and Adam are well

Moz, Rachel & Boys

--- In Myotubular_Myopathy@yahoogroups.com, "serenabirtwistle"
<serena.birtwistle@...> wrote:
>
> Hi our son Adam is now 13 years old and has the x-linked form of
MTM,
> he is doing great physically but we are having problems with
headaches
> especially in the mornings, I have a feeling that this could be
his
> oxygen levels at night does anybody have any others ideas?  I know
> that it is not his eyes! Next problem is that adam is leaving all
of
> his food and I dont know if I should have his swallowing assessed
> again?  I am a bit confused about this because he seems to be able
to
> eat sweets and crisps ok although he takes ages.  We have had to
put a
> lock on the door where all the choc bars and crisps are kept
because
> he was leaving all of his food and then we found a stash of
wrappers
> under his bed.  Even though we have done this he is still leaving
his
> food - if I give him a dish of spaghetti he is happy and he will
eat
> it but that is not a very good diet when he needs to gain weight.
Is
> anybody else having this problem?  Any advice would be
appreciated.
> Thanks
>

Archie died peacefully yesterday at 5.30pm

After 5 months of being strong our little man suffer a brady cardia and
his heart didn't recover after 45mins cardiac massage he slipped away.

We had had a really good day at the hospital with lots of smiles and
fun and was a shock to us and all the staff.

We held him in our arms for the first time without fear and no
moniters, ironically he had just got over a g-tube and nissens
operation and we thought we were over the worst.

We are remembering the good times.

Emma, Jon and Eve x

Archie died peacefully yesterday at 5.30pm

After 5 months of being strong our little man suffer a brady cardia and
his heart didn't recover after 45mins cardiac massage he slipped away.

We had had a really good day at the hospital with lots of smiles and
fun and was a shock to us and all the staff.

We held him in our arms for the first time without fear and no
moniters, ironically he had just got over a g-tube and nissens
operation and we thought we were over the worst.

We are remembering the good times.

Emma, Jon and Eve x

Dear Emma and Jon

What a terrible terrible shock.  I don't know what to say, - we feel very
attached to Archie and are absolutely heartbroken that you've lost him. If
there's anything at all we can do... If it would help to come see us again
at any time now or in the future, or want us to come to see you, we'd be
delighted to.  Equally we understand if it's not helpful.  And while Sophie
would be no help to Eve now, do keep our details for her in the future.
Goodbye darling Archie
With all our love and heartfelt sympathy
Anne, Andrew, Sophie and Tom
xxxx



-----Original Message-----
From: Myotubular_Myopathy@yahoogroups.com
[mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of emmaderbs
Sent: 05 February 2006 15:27
To: Myotubular_Myopathy@yahoogroups.com
Subject: [Myotubular_Myopathy] Another Angel

Archie died peacefully yesterday at 5.30pm

After 5 months of being strong our little man suffer a brady cardia and
his heart didn't recover after 45mins cardiac massage he slipped away.

We had had a really good day at the hospital with lots of smiles and
fun and was a shock to us and all the staff.

We held him in our arms for the first time without fear and no
moniters, ironically he had just got over a g-tube and nissens
operation and we thought we were over the worst.

We are remembering the good times.

Emma, Jon and Eve x






Yahoo! Groups Links

dear emma and family,

i am so sorry to hear of archie's passing. i dont even
know what to say. may you find comfort and love during
this most difficult time. peace to all of you,

kim

--- emmaderbs <emmaderbs@...> wrote:

> Archie died peacefully yesterday at 5.30pm
>
> After 5 months of being strong our little man suffer
> a brady cardia and
> his heart didn't recover after 45mins cardiac
> massage he slipped away.
>
> We had had a really good day at the hospital with
> lots of smiles and
> fun and was a shock to us and all the staff.
>
> We held him in our arms for the first time without
> fear and no
> moniters, ironically he had just got over a g-tube
> and nissens
> operation and we thought we were over the worst.
>
> We are remembering the good times.
>
> Emma, Jon and Eve x
>
>
>
>


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Dear Jon, Emma, and Eve,

I am so sorry to hear about the loss of Archie. There is never enough
to say for the loss of a child. Archie has joined the other angels in
heaven...

David, Shannon, Javad, Adam, Stesha, Simon

May Archie's spirit transition masterfully and may you
find peace.

Kiera




--- Shannon <smashintwo66@...> wrote:


---------------------------------
Dear Jon, Emma, and Eve,

I am so sorry to hear about the loss of Archie. There
is never enough
to say for the loss of a child. Archie has joined the
other angels in
heaven...

David, Shannon, Javad, Adam, Stesha, Simon





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Hi everyone,

Now this is going to seem a little weird, but here goes. One night
last summmer when Javad was in the hospital, I met this man whose son
had been diagnosed with AML (leukemia). He wasn't even a year old and
this had been one of those "take him in for a suspected ear infection
and he has leukemia" kind of visits. They were in shock, were scared.
I feel like it was meant to be.

Oliver had a stem cell transplant (which was successful) and then in
late December, he contracted viral meningitis which sent him into
relapse (except this time it was in his central nervous system).
Tomorrow (wednesday) Oliver has a bone marroe aspirate. His family is
feeling beaten, battered, and a bit hopeless. (okay...more than a bit.)

I know, that many of us have flet this same way. I am asking that you
go by Oliver's site and leave a note. I am not sure why this family is
weighing so heavily on my heart, but for some reason they are. You are
who I turn to for support and I am asking that you give this same
support to David, Robyn, and Oliver (and his brother Jacob who at 5
gave the stem cells...) His site is www.caringbridge.org/or/oliver.


Thanks,

Shannon

any tips ??? i seem to suction marconi and not less then 3 mins hes
back to being ruttly again its frusting me am i doing anything wrong?
what can i do better?is there a limit to how many times to use sution ?
moz tells me not to do it often as it pools more secrations last night
was a bad night he has having trouble with his sections while asleep
hi sats kept dropping till low 80s and came up once we change postion
we holding out on the hospital we going to see how he goes has hes
still playful and talking its just the nosies he making.please ill
welcome any advice
rachel&moz and boys

I wonder if you use CPT (chest percussion therapy) and
nebulizer treatments. Also do you use any medication
to dry up secretions.  For Stephanie when she gets ill
and needing more frequent suctioning her regime is:
Nebulizer treatment of 3ml normal saline every 3 hours
followed by CPT. Also she take Crantex to keep
secretions down (she takes this everyday though).
HOpe this helps.
Tina (sister of Stephanie)

--- rachel_wrigley <rachel_wrigley@...> wrote:

> any tips ??? i seem to suction marconi and not less
> then 3 mins hes
> back to being ruttly again its frusting me am i
> doing anything wrong?
> what can i do better?is there a limit to how many
> times to use sution ?
> moz tells me not to do it often as it pools more
> secrations last night
> was a bad night he has having trouble with his
> sections while asleep
> hi sats kept dropping till low 80s and came up once
> we change postion
> we holding out on the hospital we going to see how
> he goes has hes
> still playful and talking its just the nosies he
> making.please ill
> welcome any advice
> rachel&moz and boys
>
>
>
>
>


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

My heart goes out to you in this moment in hopes you
find peace.
Archie is on a new journey with wings...fly free!

Alex

--- emmaderbs <emmaderbs@...> wrote:

> Archie died peacefully yesterday at 5.30pm
>
> After 5 months of being strong our little man suffer
> a brady cardia and
> his heart didn't recover after 45mins cardiac
> massage he slipped away.
>
> We had had a really good day at the hospital with
> lots of smiles and
> fun and was a shock to us and all the staff.
>
> We held him in our arms for the first time without
> fear and no
> moniters, ironically he had just got over a g-tube
> and nissens
> operation and we thought we were over the worst.
>
> We are remembering the good times.
>
> Emma, Jon and Eve x
>
>
>
>


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

any tips ??? i seem to suction marconi and not less then 3 mins hes
back to being ruttly again its frusting me am i doing anything wrong?
what can i do better?is there a limit to how many times to use sution ?
moz tells me not to do it often as it pools more secrations last night
was a bad night he has having trouble with his sections while asleep
hi sats kept dropping till low 80s and came up once we change postion
we holding out on the hospital we going to see how he goes has hes
still playful and talking its just the nosies he making.please ill
welcome any advice
rachel&moz and boys

Hi Angie

Marconi has never had Robinul, we did ask the Dr's if they thought
that Marconi would benefit from having something to dry up his
secretions, his respiratory Dr said that this would only make
matters worse for Marconi because at the moment his secretions are
thin and runny and he still had quite a lot in his lungs so it was
best to keep them loose, but if things don't improve it may be worth
considering, as it turned out things got better when he recovered
from his virus and nothing more was said on the issue, we do have an
appointment to see this respiratory Dr on March 29th so that would
be a good chance for us to raise any concerns.

We do not have a cough assist machine, however Marconi did use one
when he was in hospital last time, (the same one as in the link you
posted) we feel that he really benefited from using it, although the
physiotherapist only used the positive pressure to give him a deep
breath and did not use the negative pressure as they were unsure
whether it was safe for a 1 year old as they had never used it on
anyone so young.

Marconi seems a little better today then he was the last couple of
days, we have only needed to suction him once today, he has been
smiling and playing and seems to be getting back to his usual happy
self.

Thank you for you helpful advice and concerns

Moz Rachel & boys


--- In Myotubular_Myopathy@yahoogroups.com, angela huss
<blueeyesofblue2001@...> wrote:
>
> Hello Rachel,
>
>   Hi! How are you? Have you tried asking your son's doctor to but
him on Robinul? Do you have a coffelator? It is a machine that hooks
to a trach or uses a mask to expel the excessive secretions. It
helps keep the lungs clear of secretions so there is less
infections. Here is the machine I am talking about heres the
website: www.coughassist.com. I hope this info. is helpful. Hugs to
your child(ren)
>
>   Sincerely,
>
>   Angie
>
>
>
>
>
>
>
>
>
>
>
>
>
> rachel_wrigley <rachel_wrigley@...> wrote:
>   any tips ??? i seem to suction marconi and not less then 3 mins
hes
> back to being ruttly again its frusting me am i doing anything
wrong?
> what can i do better?is there a limit to how many times to use
sution ?
> moz tells me not to do it often as it pools more secrations last
night
> was a bad night he has having trouble with his sections while
asleep
> hi sats kept dropping till low 80s and came up once we change
postion
> we holding out on the hospital we going to see how he goes has hes
> still playful and talking its just the nosies he making.please ill
> welcome any advice
> rachel&moz and boys
>
>
>
>
>
>
>   SPONSORED LINKS
>         Article health wellness   Center for health and wellness
Health and wellness     Health and wellness program   Health
wellness product   Health and wellness job
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "Myotubular_Myopathy" on the web.
>
>     To unsubscribe from this group, send an email to:
>  Myotubular_Myopathy-unsubscribe@yahoogroups.com
>
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
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> ---------------------------------
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>  Use Photomail to share photos without annoying attachments.
>

Hi Tina

We do use CPT on Marconi, followed by vibs and then suction, it all
seems to work for a very short time and then 5 minutes later it all
pools up again, we have asked Marconi's Dr's if they could give him
anything to help with his secretions, they basically said that we
should just see how he goes on his own with PT and suctioning, and
sure enough once he was over his virus he was able to manage his
secretions by him self, our problem is that lately Marconi has been
unwell more then he has been well, we put this down to the fact that
we are in winter and hope that once this winter is over we will see
some big improvement, he has had 5 or 6 bugs this winter and most of
them were virus's, so it stands to reason.

Marconi has used a nebulizer in hospital with good effect, our
problem is they wont give us one for home use, we have had a year
long battle just to get a suction machine.

All things said and done Marconi is a little better today and is
showing signs of him getting back to his happy self again, so we are
hoping that he will not need to go back into hospital this time.

Thanks for you helpful advice

Moz Rachel & boys


--- In Myotubular_Myopathy@yahoogroups.com, Tina Hopkins
<tinabeana24@...> wrote:
>
> I wonder if you use CPT (chest percussion therapy) and
> nebulizer treatments. Also do you use any medication
> to dry up secretions.  For Stephanie when she gets ill
> and needing more frequent suctioning her regime is:
> Nebulizer treatment of 3ml normal saline every 3 hours
> followed by CPT. Also she take Crantex to keep
> secretions down (she takes this everyday though).
> HOpe this helps.
> Tina (sister of Stephanie)
>
> --- rachel_wrigley <rachel_wrigley@...> wrote:
>
> > any tips ??? i seem to suction marconi and not less
> > then 3 mins hes
> > back to being ruttly again its frusting me am i
> > doing anything wrong?
> > what can i do better?is there a limit to how many
> > times to use sution ?
> > moz tells me not to do it often as it pools more
> > secrations last night
> > was a bad night he has having trouble with his
> > sections while asleep
> > hi sats kept dropping till low 80s and came up once
> > we change postion
> > we holding out on the hospital we going to see how
> > he goes has hes
> > still playful and talking its just the nosies he
> > making.please ill
> > welcome any advice
> > rachel&moz and boys
> >
> >
> >
> >
> >
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>

Hi Rachel and Moz,

I remember when this was a big problem with Javad. First you might
check on getting a low dose of Robinul. It might be enough to help so
you don't have constant suctioning. At nighttime, definitly look at
positioning. We used to put Javad on his side all the time when he was
little so that the secretions could run out of his mouth and not
inhibit his breathing.

I had asked you before if you guys have oxygen at home so I could send
you what we talked about. I could also send you  a nebulizer
attachment if you can get the medicine. Albuterol is usually the best
to start.

Please email me directly and let me know, then I can get your address,
etc.

Shannon

Okay, after I posted I thought of something else. When Javad gets
sick, our doctor prescribes tobramyacin (the kind that normally is IV,
but we draw it up and use it as a nebulizer.) It kills pseudomonas and
is totally effective at drying him up. It is amazing medicine. That
might be something else to look into!

Shannon

Marconi is in hospital yet again

This is his 5th admission in as many months, he took ill on Sunday
night and we took him in on Monday afternoon, even though we had
open access to the ward we ended up having to wait in A&E for 3 hrs
as the ward was full!!!

On the plus side we (and the Dr's) don't think he is anywhere near
as ill as he was last time, he is now doing well in air through the
day and just needing a little oxygen in the night, his neurologist
came to see him today and she said that it may be a good idea to
have a cpap machine at home for night time use to prevent
infections, I'm like HELLO THIS IS WHAT I'VE BEEN TELLING YOU FOR
THE PAST 6 MONTHS!!!

I don't think it will stop him getting infections, but it should
make it possible for us to treat Marconi from home much better when
he dose get ill.

I know a couple of you would have had experience of overnight cpap,
and I'm eager to find out how effective you found it?

Hope you are all well

Moz, Rachel & boys

Hi All

Kyle has been doing good since his surgery.  He started back to
school yesterday.  He did great.  Today was another story.  He tried
everyone, placing jokes on his therapist and new nurse.  Would not
do what his teacher wanted him too.  He wanted them to do what he
wanted.  Hopefully tomorrow will be a better day.  We now have 2 new
nurses.  He really likes one, but the other one he likes to play
jokes on.  Hopefully they will both work out.

Connor is back in the hospital today.  He was having trouble
breathing and coughing alot.  He has a partial colapsed lung and
white batches on his lung.  He should only be there a few days if
everything goes well.  He's been having trouble gaining weight.  He
weighs 8 pounds now.

Hope all is well with everyone.

Take care
Darlene

Moz and Rachael,

I am so sorry that Marconi is in the hospital again. It brings back
memories of when Javad was young. We were in the hospital every
month as well for a long time. It was frustrating as the doctors
tried to figure out what was going on.

Javad was on bipap before he ahd his trach placed last summer. On of
the advantages of bipap over cpap is that is can give bi-level
pressure. It also can have patient breaths rather than just a set
rate. This coule be true for cpap too, I have only had bipap
experience.

I think what you will find is that by keeping marconi's lungs open,
it will help a lot. I would really lobby for the nasal mask and a
nebulizer too. By having bipap, if you give him a neb the medicine
can go deeper into his lungs and be more effective.

I will continue to think about you guys.

Shannon

sorry about Marconi
Charlie was in the hospital every 3months (like clockwork) - for the
1st 2yrs - and his treatments in the hospital were 2hr nebs,2hr
coughalators,full time bipap
we have all of that at home now and it makes a huge difference - he
has not been back to the hospital in almost a year
the bipap gives them a chance to relax at night and get sufficient
oxygen - he uses it every night and asks for it at bedtime
i know the doctors did not feel cpap was appropriate - he needed the
bilevel pressure so check with your doctor
your right, it won't stop the infections completely but it
definitely decreases the severity and as soon as we think he is
being compromised we increase the use of the bipap to give him more
breaks -
since we started the bibap - Charlie is more alert and active during
the day (co2 levels don't build up at night)
another life saver is the coughalator - again charlie asks for that
when he needs it - he does not mind it
good luck - hang in there
Leah

--- In Myotubular_Myopathy@yahoogroups.com, "Maurizio"
<badboymoz2004@...> wrote:
>
> Marconi is in hospital yet again
>
> This is his 5th admission in as many months, he took ill on Sunday
> night and we took him in on Monday afternoon, even though we had
> open access to the ward we ended up having to wait in A&E for 3
hrs
> as the ward was full!!!
>
> On the plus side we (and the Dr's) don't think he is anywhere near
> as ill as he was last time, he is now doing well in air through
the
> day and just needing a little oxygen in the night, his neurologist
> came to see him today and she said that it may be a good idea to
> have a cpap machine at home for night time use to prevent
> infections, I'm like HELLO THIS IS WHAT I'VE BEEN TELLING YOU FOR
> THE PAST 6 MONTHS!!!
>
> I don't think it will stop him getting infections, but it should
> make it possible for us to treat Marconi from home much better
when
> he dose get ill.
>
> I know a couple of you would have had experience of overnight
cpap,
> and I'm eager to find out how effective you found it?
>
> Hope you are all well
>
> Moz, Rachel & boys
>

Dear Moz and Rachel
So sorry to hear Marconi is back in - it's so tough to see them out of their
own beds isn't it?  My heart goes out to you all

We have talked to the Brompton (who have looked after a number of MTM
children from a lung and breathing perspective) and discussed bi-pap and
c-pap (like the experience of the other families, they thought bi-pap would
be more appropriate), and everytime it comes back to CO2 levels from a sleep
study.  As Tom has just slightly elevated CO2 overnight it seems not
appropriate - but what they said was, UNLESS he gets lots of chest
infections.

We talked to a consultant there - Dr Anita Simonds - who has done a lot of
research into bi-pap and c-pap on children with neuromuscular conditions. If
you google her with words like c-pap, bi-pap, NIPPV (non invasive positive
pressure ventilation) you should get to some of her articles.  In the
meantime I'll try to dig out the ones we found at the time.  They really
really helped us to understand what would these interventions do for Tom,
and most importantly what they might not do.  In fact as it happens we
talked ourselves out of bi-pap and c-pap based on interpreting these
articles and Anita Simonds and Professor Andy Bush the other consultant with
specific MTM experience ended up agreeing with us in Tom's case (for one
thing, he never gets chest infections).

The one thing that Dr Simonds said is that a child can become dependant on
c-pap or bi-pap and become psychologically insecure about going to sleep
without them.  We worried about that from the perspective of life quality in
the long term but really don't know much about it - the other families may
have a different view.

Sorry not to be much help
Anne and Tom


-----Original Message-----
From: Myotubular_Myopathy@yahoogroups.com
[mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Maurizio
Sent: 15 February 2006 19:49
To: Myotubular_Myopathy@yahoogroups.com
Subject: [Myotubular_Myopathy] Marconi is in hospital yet again!!!

Marconi is in hospital yet again

This is his 5th admission in as many months, he took ill on Sunday
night and we took him in on Monday afternoon, even though we had
open access to the ward we ended up having to wait in A&E for 3 hrs
as the ward was full!!!

On the plus side we (and the Dr's) don't think he is anywhere near
as ill as he was last time, he is now doing well in air through the
day and just needing a little oxygen in the night, his neurologist
came to see him today and she said that it may be a good idea to
have a cpap machine at home for night time use to prevent
infections, I'm like HELLO THIS IS WHAT I'VE BEEN TELLING YOU FOR
THE PAST 6 MONTHS!!!

I don't think it will stop him getting infections, but it should
make it possible for us to treat Marconi from home much better when
he dose get ill.

I know a couple of you would have had experience of overnight cpap,
and I'm eager to find out how effective you found it?

Hope you are all well

Moz, Rachel & boys






Yahoo! Groups Links

Marconi home

Marconi came home yesterday afternoon, it was only a short stay in
hospital, 4days/nights, his respiratory consultant decided not to go
ahead with the overnight CPAP/BIPAP as Marconi keeps good O2 and CO2
levels while asleep when he is well, so not a lot has changed in
terms of the level of care he gets at home, the same Dr said that a
gastrostomi is a must, me and Rachel are not so sure, its not that
we don't want him to have the G-tube op, its just that we are all to
aware of the risks for these boys after having this op, I know that
most boys are fine with it, but there are a few cases where boys
have died shortly after having this procedure performed, and it is
that that is our biggest concern.

On a positive note Marconi is doing well at home, he has put on
quite a lot of weight and is now 7.9kg (17lb 6oz) he is now in the
weight band that the Dr's want him at, he has put on nearly 2kg in 6
weeks.

Thanks again for your advice and kind thoughts

Moz, Rachel & boys

moz
i am glad to hear that marconi is home and doing
well...chubbin up as we say around here!
kim

--- Maurizio <badboymoz2004@...> wrote:

> Marconi home
>
> Marconi came home yesterday afternoon, it was only a
> short stay in
> hospital, 4days/nights, his respiratory consultant
> decided not to go
> ahead with the overnight CPAP/BIPAP as Marconi keeps
> good O2 and CO2
> levels while asleep when he is well, so not a lot
> has changed in
> terms of the level of care he gets at home, the same
> Dr said that a
> gastrostomi is a must, me and Rachel are not so
> sure, its not that
> we don't want him to have the G-tube op, its just
> that we are all to
> aware of the risks for these boys after having this
> op, I know that
> most boys are fine with it, but there are a few
> cases where boys
> have died shortly after having this procedure
> performed, and it is
> that that is our biggest concern.
>
> On a positive note Marconi is doing well at home, he
> has put on
> quite a lot of weight and is now 7.9kg (17lb 6oz) he
> is now in the
> weight band that the Dr's want him at, he has put on
> nearly 2kg in 6
> weeks.
>
> Thanks again for your advice and kind thoughts
>
> Moz, Rachel & boys
>
>
>
>


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darlene,
thanks for the updates and i hope connor's stay in the
hospital is a short one. it's good news that you have
nursing again..kyle sounds like he keeps them on their
toes. hopefully these two new ones will work out for
you.

kim

--- Darlene <dm4462@...> wrote:

> Hi All
>
> Kyle has been doing good since his surgery.  He
> started back to
> school yesterday.  He did great.  Today was another
> story.  He tried
> everyone, placing jokes on his therapist and new
> nurse.  Would not
> do what his teacher wanted him too.  He wanted them
> to do what he
> wanted.  Hopefully tomorrow will be a better day.
> We now have 2 new
> nurses.  He really likes one, but the other one he
> likes to play
> jokes on.  Hopefully they will both work out.
>
> Connor is back in the hospital today.  He was having
> trouble
> breathing and coughing alot.  He has a partial
> colapsed lung and
> white batches on his lung.  He should only be there
> a few days if
> everything goes well.  He's been having trouble
> gaining weight.  He
> weighs 8 pounds now.
>
> Hope all is well with everyone.
>
> Take care
> Darlene
>
>
>
>
>


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sam is almost 6 months now and i am starting to wonder what happens
once we stop giving him breastmilk thru the gtube? hopefully i can
continue with the breast milk thru early summer but it's getting
tiring at this point and is starting to feel like 'just one more thing
to do'. what do you give your boys for nourishment? we are starting to
work with the nutritionist at the hospital but we havent had this
conversation yet..she did mention formulas or pediasure...? do you
make your own? or add anything to these formulas? he is doing okay
weight wise, gaining, but below 5% on the height to weight chart; he
is 15 lbs and 28 inches. i know they want to monitor his weight gain
closely to make sure he gets up higher inbetween the 10-15% bracket.

sam also has these things on his gums. they are like small white cyst
like pockets. the drs call them pearls but no one can recall what the
actual name of them is. he has them throughout his mouth. they said
its nothing to be alarmed about, babies get them but when you arent
taking anything by mouth they arent broken down. has anyone else had
these? they told me to clean his gums a few times a day with a warm
wash cloth or a bit of saline and they will eventually break down?

thank you and hope all is well,
kim

a