Hi everyone. I was contacted by a family that has a child with Marshall and
they looking for a doctor to help there family with Marshall Syndrome. I
don't know of anyone but wondered if any of you did.

Tony Sizemore

www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently, but
life itself would come to be different. Life would undergo a change of
appearance because we ourselves had undergone a change of attitude."

Katherine Mansfield

1888-1923, Writer

Merry Christmas and a Happy New Year!
--- In MarshallSyndrome@yahoogroups.com, "Tony Sizemore"
<tsizemore@n...> wrote:
>
> I would like to wish everyone a belated Merry Xmas. I hope
everyone had as
> wonderful a day as my family did.
> There have been a few new members, and I would like to welcome you
all. I
> would like to apologize to everyone for not being more proactive
in starting
> conversation on the list. I had hope that it would kind of just
going on its
> own. I am going to try to do a better job in the future.
>
> Tony Sizemore
>
> http://www.tsizemore.dns2go.com/Mackenzie/index.htm
>
>
>
> "Could we change our attitude, we should not only see life
differently, but
> life itself would come to be different. Life would undergo a
change of
> appearance because we ourselves had undergone a change of
attitude."
>
> Katherine Mansfield
>
> 1888-1923, Writer
>

I would like to wish everyone a belated Merry Xmas. I hope everyone had as
wonderful a day as my family did.
There have been a few new members, and I would like to welcome you all. I
would like to apologize to everyone for not being more proactive in starting
conversation on the list. I had hope that it would kind of just going on its
own. I am going to try to do a better job in the future.

Tony Sizemore

http://www.tsizemore.dns2go.com/Mackenzie/index.htm



"Could we change our attitude, we should not only see life differently, but
life itself would come to be different. Life would undergo a change of
appearance because we ourselves had undergone a change of attitude."

Katherine Mansfield

1888-1923, Writer

Hi and thank you for your response, I couldnt see the picture, very
sorry. I also have a 6yr girl with PDD and SID. Autism is a very
difficult thing to go through.

--- In MarshallSyndrome@yahoogroups.com, Luz Garcia <luzbarrera@s...>
wrote:
>
>   Hi Jenna and Bryn:
>
>   I am a grandmother of a 4 year old grandson named Carlos.  Carlos
was diagnosed with Marshall Syndrome about 2 1/2 years ago. He does
not speak.  He has conductive hearing loss.  He also has very high
Myopia -14, a flat nasal bridge and knock knees.  He also hurts
himself by slapping his face and hitting his head.  We are now in the
process of getting him tested for Autism too.  I am attaching a photo
of him.
> jennamooney <mooney6@a...> wrote:
>
> Hi. I have a 19 month old named Bryn. SHe was dx'd with PRS,
> hypermobility syndrome, OSA and CSA, Kyphosis & Lordosis, flat
nasal
> bridge, epicathical folds, conductive hearing loss, Myopia, thin
> hair, submucus cleft palate, VPI and some other issues including
> Raynauds Disease.
>
> On Thursday Bryn was dx'd with Myopia of flat 0 and -2 (norm is
+5).
> Our opthamoligist said that she was showing signs of Sticklers, but
> since she was born deaf and had no hearing until 9 weeks, and still
> has high tone issues due to slow moving ear drums we are thinking
she
> has Marshalls.
>
> I would like to meet and gain info about this syndrome from people
> who are living with it. I was also lookking for pics b/c I read
that
> childrens with Marshalls had a simialiar facial features, so I
wanted
> to compare.
>
> We will not get genetic testing until the end of this month so we
> are a bit stressed out.
>
> What are the main symptoms that she should present with and how
> severe?
>
> thank you so much.
>
> Jenna & Bryn
>
>
>
>
>
>   SPONSORED LINKS
>         Illness   Critical illness   Mental illness     Terminal
illness   Chronic illness
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "MarshallSyndrome" on the web.
>
>     To unsubscribe from this group, send an email to:
>  MarshallSyndrome-unsubscribe@yahoogroups.com
>
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
>
>
> Luz
>

Hi. I have a 19 month old named Bryn. SHe was dx'd with PRS,
hypermobility syndrome, OSA and CSA, Kyphosis & Lordosis, flat nasal
bridge, epicathical folds, conductive hearing loss, Myopia, thin
hair, submucus cleft palate, VPI and some other issues including
Raynauds Disease.

  On Thursday Bryn was dx'd with Myopia of flat 0 and -2 (norm is +5).
Our opthamoligist said that she was showing signs of Sticklers, but
since she was born deaf and had no hearing until 9 weeks, and still
has high tone issues due to slow moving ear drums we are thinking she
has Marshalls.

  I would like to meet and gain info about this syndrome from people
who are living with it. I was also lookking for pics b/c I read that
childrens with Marshalls had a simialiar facial features, so I wanted
to compare.

  We will not get genetic testing until the end of this month so we
are a bit stressed out.

  What are the main symptoms that she should present with and how
severe?

  thank you so much.

  Jenna & Bryn

Hello, we are new here. We use ASL with my dd Bryn who is 19 months.
She has about 20 she understands and 7 that she does on her own. SHe
has fluctating hearing loss, so somedays are worse then others.

  SHe is just starting to speak, but b/c of VPI she is nasally sounding
and harsh.


--- In MarshallSyndrome@yahoogroups.com, "mac08052003" <tsizemore@n...>
wrote:
>
>
> Ok have any of you out there thought of teaching your child Sign
> language? We have been working with Mackenzie for a couple of months
> now and she is starting to pick up what is going on, and sign back.
> We are doing this more so because of her Trach the anything. She is
> going to be getting close to 2 before the Trach is even possibly
> going to come out and I can already see the frustration in her face
> when she can not tell me what she wants. I am trying the to find the
> best avenue to take, I.E. ASL (American Sign Language) V.S Sign Exact
> English or SEE.  Just thought I would but it out to you and see what
> comes of it.
>

Thank you Tony for signing me up for this group!  I see that not
many have responded to your recent message but hopefully others
will.
I am Denise mother of Sammi who is now 12 1/2 (if I forget the 1/2
she always corrects me!)  She was also diagnosed at birth w/ Pierre
Robin, at age 2 with Sticklers and a few years ago changed it to
Marshalls Syndrome.  Sammi has most of the classis symptoms (from
what I'm told) she has moderate/severe hearing loss but is very
verbal.  She does not do sign - we got her first hearing aids at
seven months, early intervention at four months and she has been
doing great.  She wants to meet other that are "like her"  (her
words)  I've not had much luck with finding others but maybe here I
will be able too.  If anyone cares to chat - please feel free so we
can all share our experiences.

Thank you!

Denise Vallier





--- In MarshallSyndrome@yahoogroups.com, "Tony Sizemore"
<tsizemore@n...> wrote:
>
> Hi this Tony
>
> I have in the past few days received a number of requests to join
the list.
> I don't even know how many of you are still out here but I think
maybe we
> should just drop a short note here to say who we are.
>
> I am the father of little girl (now 2) that was born with Marshall
and
> Pierre Robin Sequenced. She was Trached at birth and had a G-Tube
(feeding
> tube) place soon after because of the size of her jaw. She has
lost her left
> eye to glaucoma and is very near sighted in the right but she is
doing great
> with it.
>
> I started this to try to help others with Marshall talk and help
each other
> with the day to day this you may have to deal with.
>
>
>
> Tony Sizemore
>
> www.tsizemore.dns2go.com
>
>
>
> "As a parent one has to be committed towards the path taken in
life in order
> to
> justify the choice of direction in our later years without
regrets."
>
>     Linda Camarillo 8/5/2005
>

Hi Tony-

I have some journal articles on Marshall syndrome... I can make
copies of them tonight and send them to you... then you can scan them
and put them on the website if you would like... or just have them
for your own reference... Let me know if you would like copies and
email me your mailing address.
Melanie :)

I am defiantly working the information for that, but like you said it is
Very rare and hard to find data that links the two of the together. Anything
that you have that links to two would help me. I plan on cover all the
symptoms, I just have to finish gathering that data.

-----Original Message-----
From: Melanie [mailto:Meljbodin@...]
Sent: Tuesday, January 11, 2005 11:51 PM
To: MarshallSyndrome@yahoogroups.com
Subject: [MarshallSyndrome] Website




Tony,

I think the website looks good so far... it will always be a work in
progress....

One thing I think you should add, is that Marshall syndrome involves
ectodermal dysplasia...

When I saw Dr. Shanske, he told me that the only difference between
sticklers and marshalls was ectodermal dysplasia, which is why I was
diagnosed with Marshalls... He also said it is very very rare... only
about 10 families affected... He has only seen a few cases..

I know for those that have younger kids, their skin and hair may look
great.. and I really hope it stays that way... for me.. I didnt start
having problems until I was a teenager (13)...

Melanie







Yahoo! Groups Links

Tony,

I think the website looks good so far... it will always be a work in
progress....

One thing I think you should add, is that Marshall syndrome involves
ectodermal dysplasia...

When I saw Dr. Shanske, he told me that the only difference between
sticklers and marshalls was ectodermal dysplasia, which is why I was
diagnosed with Marshalls... He also said it is very very rare... only
about 10 families affected... He has only seen a few cases..

I know for those that have younger kids, their skin and hair may look
great.. and I really hope it stays that way... for me.. I didnt start
having problems until I was a teenager (13)...

Melanie

Hi everybody. I want to give all the link to the TEST site. I have not
finished proofing it, and style have information to get up there but I am
pretty close to putting it out for general consumption.
http://www.tsizemore.dns2go.com/test/

Take a look around let me know if you have any ideas or suggestions.

Something you can do for me. I have a place in the site call Dealing with
it. I just want to post some support type notes form people that could help
someone else get over a tuff time. I know I have couple of adults here and
that is really one that I am looking for, but for you Mom's, Dad's and
Grandparents do not hesitate to send me you thoughts. Send them to me
directly if you like. (tsizemore@...)

Thanks for your help and I want to say I am very happy to be part of all
this. I know it has been a little slow but we all are in the position to
help each other and anyone new that may come all.

  Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                                Katherine Mansfield
                                1888-1923, Writer

Tony-
Here are some websites with info about Marshall Syndrome.  I also
have some medical journal articles....let me know if you need/want
copies of those, or if you already have them.
Melanie



http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=560

http://www.orpha.net/static/GB/marshall_syndrome.html

http://www.journals.uchicago.edu/AJHG/journal/issues/v63n5/980513/9805
13.html

http://herkules.oulu.fi/isbn9514254139/isbn9514254139.pdf

http://home.wit.no/SkarpReklame/Kunder/Bedrifter/Theodor/Glossary.htm

First things first. We have an Eye Doctor appointment Duke University today.
Mac had her second eye test and she did great. Her first test showed her
have 20/ 900 vision. Today she test at 20/ 400 !!!!!!!!! and both Kathy and
I and the Doctor think it better then that. YEAH Mac!!!!!!

Ok now down to the glasses. Solo has added a few new frames since the last
time I looked and they look kind of ok. Here is a small bit of information
for you about frames. The size of the frame is in Millimeters. The 36, 38,40
ect refers to the with of the glasses from the center of the nose piece to
outside edge of the Len. (not the frame). The 16, 18, 20 ect refers to the
height of the lenses. I believe it inside the frame. So as you look for
Frames you well at least know what you are looking at.
Lenses, something to think about. When you get new glasses, if they are a
high negative see if its possible to role and polish the outer edge of the
frame. This will keep the thickest part of the lenses from being as sharp
and lower the chance of the little getting a cut or scrape like mine has. As
far as I can tell most frames will take very high negative. The optometrist
the we see at Duke said that it "should not" be a problem fill a high
negative RX with the frames that are available today. I know for a fact Solo
can.
Luz I need you to call me if can. (919) 303-1361 I have a few hours free
today and then tomorrow after 3 p.m.


Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                               Katherine Mansfield
                               1888-1923, Writer

First things first. We have an Eye Doctor appointment Duke University today.
Mac had her second eye test and she did great. Her first test showed her
have 20/ 900 vision. Today she test at 20/ 400 !!!!!!!!! and both Kathy and
I and the Doctor think it better then that. YEAH Mac!!!!!!

Ok now down to the glasses. Solo has added a few new frames since the last
time I looked and they look kind of ok. Here is a small bit of information
for you about frames. The size of the frame is in Millimeters. The 36, 38,40
ect refers to the with of the glasses from the center of the nose piece to
outside edge of the Len. (not the frame). The 16, 18, 20 ect refers to the
height of the lenses. I believe it inside the frame. So as you look for
Frames you well at least know what you are looking at.
Lenses, something to think about. When you get new glasses, if they are a
high negative see if its possible to role and polish the outer edge of the
frame. This will keep the thickest part of the lenses from being as sharp
and lower the chance of the little getting a cut or scrape like mine has. As
far as I can tell most frames will take very high negative. The optometrist
the we see at Duke said that it "should not" be a problem fill a high
negative RX with the frames that are available today. I know for a fact Solo
can.
Luz I need you to call me if can. (919) 303-1361 I have a few hours free
today and then tomorrow after 3 p.m.


  Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                                Katherine Mansfield
                                1888-1923, Writer

If you looked at the Solo Bambini Frames they will take a VERY high
negative. These are the frames that wee have for Mackenzie and her RX
is -16.5. They only go up to Toddler, but they say that it will fit a child
up to 5 years old. I haven't found any other glasses for high negatives yet
but I am going to eye doctor in the morning and I have to stop in to see the
optometrist while we are there so I will talk to her about it and let you
know what I find out.
I am not a big fan of Solo. They do not work well for children with small on
no nasal bridge, that's why I made the attachment I did for Mac, But at this
time they are the only one's for children under 2.

  Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                                Katherine Mansfield
                                1888-1923, Writer

Hi Melanie
Welcome to the group. When I first started this I was thinking of the
parents that have to go threw not knowing or being able to find information
about Marshall but I have coming to see that it is as much for adults as it
is for Parents. I am very glade to see we are getting some adults that have
Marshall as well as parents of children with this syndrome.
I have not found much in the way of information about how ectodermal
dysplasia effects people with Marshall syndrome so if you have some
documentation on that I would like to see it. You can send it to me directly
at tsizemore@... if you don't mind.
I have read a lot of Dr Shamske papers but have not spoken with him yet. I
am going to try to contact him soon to see if he has anything newer then
what I have about Marshall.
Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                               Katherine Mansfield
                               1888-1923, Writer

-----Original Message-----
From: Melanie [mailto:Meljbodin@...]
Sent: Monday, December 27, 2004 3:16 AM
To: MarshallSyndrome@yahoogroups.com
Subject: [MarshallSyndrome] New to group




Hello everyone!

I wanted to take a minute to say hi.  Thanks to Macenzies dad for
making this group and even starting a website on Marshall Syndrome,
there isn't much information out there on it. (Please let me know if
you need any more info or any copies of journal articles about
Marshall syndrome).

A little about me... Im 24 and was diagnosed with Marshall Syndrome
in March...I went through so many years with no answers and hope that
no one else will have to have that same experience.

At first, we thought I just had sticklers syndrome (as everyone knows
there isnt much difference).  But... since the age of 13 or so I have
been loosing my hair... and we couldnt figure out why.  All my test
came back "normal".  A few years after that, during college I started
volunteering at a camp for kids and teens with skin conditions and
through the dermatologist there found out about ectodermal dysplasia,
a skin condition that is part of marshall syndrome.

In March of this year, I flew out to NYC and went to see Dr. Shanske
(one of the experts on Marshall Syndrome) who confirmed the
diagnosis.  He told me that the only real difference between
Sticklers and Marshall Syndrome is that Marshall Syndrome consist of
skin problems- ectodermal dysplasia.

Anyways, thats my story in a nutshell.. Im glad to be a part of this
group.

Melanie
24/MN/Marshall Syndrome







Yahoo! Groups Links

Hello everyone! 

I wanted to take a minute to say hi.  Thanks to Macenzies dad for
making this group and even starting a website on Marshall Syndrome,
there isn't much information out there on it. (Please let me know if
you need any more info or any copies of journal articles about
Marshall syndrome).

A little about me... Im 24 and was diagnosed with Marshall Syndrome
in March...I went through so many years with no answers and hope that
no one else will have to have that same experience.

At first, we thought I just had sticklers syndrome (as everyone knows
there isnt much difference).  But... since the age of 13 or so I have
been loosing my hair... and we couldnt figure out why.  All my test
came back "normal".  A few years after that, during college I started
volunteering at a camp for kids and teens with skin conditions and
through the dermatologist there found out about ectodermal dysplasia,
a skin condition that is part of marshall syndrome.

In March of this year, I flew out to NYC and went to see Dr. Shanske
(one of the experts on Marshall Syndrome) who confirmed the
diagnosis.  He told me that the only real difference between
Sticklers and Marshall Syndrome is that Marshall Syndrome consist of
skin problems- ectodermal dysplasia.

Anyways, thats my story in a nutshell.. Im glad to be a part of this
group.

Melanie
24/MN/Marshall Syndrome

Hi Melanie
Welcome to the group. When I first started this I was thinking of the
parents that have to go threw not knowing or being able to find information
about Marshall but I have coming to see that it is as much for adults as it
is for Parents. I am very glade to see we are getting some adults that have
Marshall as well as parents of children with this syndrome.
I have not found much in the way of information about how ectodermal
dysplasia effects people with Marshall syndrome so if you have some
documentation on that I would like to see it. You can send it to me directly
at tsizemore@... if you don't mind.
I have read a lot of Dr Shamske papers but have not spoken with him yet. I
am going to try to contact him soon to see if he has anything newer then
what I have about Marshall.
  Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                                Katherine Mansfield
                                1888-1923, Writer

-----Original Message-----
From: Melanie [mailto:Meljbodin@...]
Sent: Monday, December 27, 2004 3:16 AM
To: MarshallSyndrome@yahoogroups.com
Subject: [MarshallSyndrome] New to group




Hello everyone!

I wanted to take a minute to say hi.  Thanks to Macenzies dad for
making this group and even starting a website on Marshall Syndrome,
there isn't much information out there on it. (Please let me know if
you need any more info or any copies of journal articles about
Marshall syndrome).

A little about me... Im 24 and was diagnosed with Marshall Syndrome
in March...I went through so many years with no answers and hope that
no one else will have to have that same experience.

At first, we thought I just had sticklers syndrome (as everyone knows
there isnt much difference).  But... since the age of 13 or so I have
been loosing my hair... and we couldnt figure out why.  All my test
came back "normal".  A few years after that, during college I started
volunteering at a camp for kids and teens with skin conditions and
through the dermatologist there found out about ectodermal dysplasia,
a skin condition that is part of marshall syndrome.

In March of this year, I flew out to NYC and went to see Dr. Shanske
(one of the experts on Marshall Syndrome) who confirmed the
diagnosis.  He told me that the only real difference between
Sticklers and Marshall Syndrome is that Marshall Syndrome consist of
skin problems- ectodermal dysplasia.

Anyways, thats my story in a nutshell.. Im glad to be a part of this
group.

Melanie
24/MN/Marshall Syndrome







Yahoo! Groups Links

Hello everyone!

I wanted to take a minute to say hi.  Thanks to Macenzies dad for
making this group and even starting a website on Marshall Syndrome,
there isn't much information out there on it. (Please let me know if
you need any more info or any copies of journal articles about
Marshall syndrome).

A little about me... Im 24 and was diagnosed with Marshall Syndrome
in March...I went through so many years with no answers and hope that
no one else will have to have that same experience.

At first, we thought I just had sticklers syndrome (as everyone knows
there isnt much difference).  But... since the age of 13 or so I have
been loosing my hair... and we couldnt figure out why.  All my test
came back "normal".  A few years after that, during college I started
volunteering at a camp for kids and teens with skin conditions and
through the dermatologist there found out about ectodermal dysplasia,
a skin condition that is part of marshall syndrome.

In March of this year, I flew out to NYC and went to see Dr. Shanske
(one of the experts on Marshall Syndrome) who confirmed the
diagnosis.  He told me that the only real difference between
Sticklers and Marshall Syndrome is that Marshall Syndrome consist of
skin problems- ectodermal dysplasia.

Anyways, thats my story in a nutshell.. Im glad to be a part of this
group.

Melanie
24/MN/Marshall Syndrome

Hello everyone
I just want to take a couple of minutes and wish every a happy
holiday. I hope you have had a great holiday to this point and the
New Year is coming. I hope this year is better then last year for you
all. As I look back at our year and see how much things have change I
get very excited about this year. I am also excited about his list
and the Marshall Syndrome Page. I have found a lot od information,
and spoke with some pretty knowledgeable people in past few weeks,
but I will tell you all about it later. Enjoy your Holiday!!!!!!!!!!
With much love Tony Mac's Dad.

-----Original Message-----
From: Vickie L. Specht [mailto:vickie.specht@...]
Sent: Wednesday, December 15, 2004 9:43 AM
To: MarshallSyndrome@yahoogroups.com
Subject: RE: [MarshallSyndrome] ENT appointment today

Wow.  Did they sedate her for each one? 

 

Nathan had the initial hearing screening in the hospital (which he failed) and two other hearing tests (one of these included the dr who told us he was completely deaf) before his ABR in Iowa City where they sedated him.  Since the ABR I have not even kept track of all his hearing tests he has had.  We try to do one every other month just to be sure the settings for his hearing aids stay accurate.  It was scary to sedate him so young for the Iowa City test . . . but with all you have been through, I am sure you understand.

 

All the tests are worth it (and necessary) in the long run . . .

 

---

From: Tony Sizemore [mailto:tsizemore@...]
Sent: Wednesday, December 15, 2004 8:32 AM
To: MarshallSyndrome@yahoogroups.com
Subject: RE: [MarshallSyndrome] ENT appointment today

 

Mac had 3 ABR's now. The first was in the NICU and was normal for a new born. Then they did one with her Palate repair and showed a 50 DB deficit, so the put in tube. (we also had a second on that and got them thing) The third showed a slight improvement from 50 to 25 DB. That is why they are trying so hard to get a test, but she is not world with them at all. It just doesn't fit into her plan of the day.

-----Original Message-----
From: Vickie L. Specht [mailto:vickie.specht@...]
Sent: Wednesday, December 15, 2004 9:19 AM
To: MarshallSyndrome@yahoogroups.com
Subject: RE: [MarshallSyndrome] ENT appointment today

That is wonderful news.  It is nice to come away from appointments with something so positive!

 

When Nathan was about less than 2 months old, we did do an ABR to try and get a more accurate hearing test result.  Mackenzie’s first few months we a lot different than Nathan’s . . . . he was not premature and basically healthy.  At that point we did not know what Nathan’s diagnosis/prognosis was.  Anyway, I am glad everything went so well.

 

---

From: Tony Sizemore [mailto:tsizemore@...]
Sent: Tuesday, December 14, 2004 6:30 PM
To: Pierrerobin@Yahoogroups. Com; Marshall Sydrome
Subject: [MarshallSyndrome] ENT appointment today

 

We had a hearing test and ENT appointment today and got so pretty good news
I guess. They want to look at Mackenzie in March to see if we can start
trying to get the Trach out... O.M.G.!!!! I am trying not to get my hopes up
because it is all up to how much her chin grows, but I have to hope in back
of my mine. Her hearing test was ok. At this point with her so young they
all they can say is that she can hear with in some degree of normal but at
16 months she will not set still.
I hope everyone is getting ready to have a great holiday.

Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                               Katherine Mansfield
                               1888-1923, Writer

 

-----Original Message-----
From: Vickie L. Specht [mailto:vickie.specht@...]
Sent: Wednesday, December 15, 2004 9:19 AM
To: MarshallSyndrome@yahoogroups.com
Subject: RE: [MarshallSyndrome] ENT appointment today

That is wonderful news.  It is nice to come away from appointments with something so positive!

 

When Nathan was about less than 2 months old, we did do an ABR to try and get a more accurate hearing test result.  Mackenzie’s first few months we a lot different than Nathan’s . . . . he was not premature and basically healthy.  At that point we did not know what Nathan’s diagnosis/prognosis was.  Anyway, I am glad everything went so well.

 

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From: Tony Sizemore [mailto:tsizemore@...]
Sent: Tuesday, December 14, 2004 6:30 PM
To: Pierrerobin@Yahoogroups. Com; Marshall Sydrome
Subject: [MarshallSyndrome] ENT appointment today

 

We had a hearing test and ENT appointment today and got so pretty good news
I guess. They want to look at Mackenzie in March to see if we can start
trying to get the Trach out... O.M.G.!!!! I am trying not to get my hopes up
because it is all up to how much her chin grows, but I have to hope in back
of my mine. Her hearing test was ok. At this point with her so young they
all they can say is that she can hear with in some degree of normal but at
16 months she will not set still.
I hope everyone is getting ready to have a great holiday.

Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                               Katherine Mansfield
                               1888-1923, Writer

We had a hearing test and ENT appointment today and got so pretty good news
I guess. They want to look at Mackenzie in March to see if we can start
trying to get the Trach out... O.M.G.!!!! I am trying not to get my hopes up
because it is all up to how much her chin grows, but I have to hope in back
of my mine. Her hearing test was ok. At this point with her so young they
all they can say is that she can hear with in some degree of normal but at
16 months she will not set still.
I hope everyone is getting ready to have a great holiday.

  Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                                Katherine Mansfield
                                1888-1923, Writer

Hi everybody
The list is start to pick up a few more members. I hope we can gather a few
more but for now I have a question for you. I am putting the final touches
on the Marshall Syndrome website and I am going to post a couple of pickers
of my little girl. One of the things that I want to see in the beginning was
picks of children and adult with Marshall. If any one would like to send me
a picture or two that I could post I would love it. Send them to me directly
tsizemore@... along with a little description of the picture.


  Tony Sizemore
www.tsizemore.dns2go.com

"Could we change our attitude, we should not only see life differently,
but life itself would come to be different. Life would undergo a change
of appearance because we ourselves had undergone a change of attitude."

                                Katherine Mansfield
                                1888-1923, Writer