Erin, what part of Missouri are you in ? I am 30 miles form the Missouri border in  North Central Arkansas. Did the storm cause you any trouble last night?Sure tired of the rain here. Yes it is so hard to be the only caregiver for a child like ours. I was lucky to have my family and my husband to help. Now we spend lots of time at the dr and hospital. I am a nurse so I now do alot of her stuff here at home.I have acomapny bring me the IV stuff.This helps alot as I am here to do the normal stuff  instead of setting in the hospital. She gets very depressed being in the hospital and gets where she  won't eat or nothing. . Well better get busy , Grace is home today she refuses to go out if it rains. Have a wonderful day Peggy --- On Wed, 4/23/08, erin bross <erinrebecca2002@yahoo.com> wrote: From: erin bross <erinrebecca2002@yahoo.com> Subject: Re: [11q_disorders] Re: The 2008 conference To: 11q_disorders@yahoogroups.com Date: Wednesday, April 23, 2008, 10:22 AM Laura and Linzee, I definently understand about not being able to attend the conference. My daughter and I are also unable to attend the conference due to lack of funds. We live here in Missouri. I have contacted every agency I can think of and no one helps funds these types of trips. My daughters First Steps Coordinator  and her facility have no funds. I then contacted her Regional Center Coordinator who did type up a report to try to get funding to at least cover the confrence fees but the report was denied. Both coordinators did give me other offices, etc. to contact but none of those had the funding to help. So sadly we are "stuck here".  Being that I am a single mom and unemployeed (we're living off my daughters SSI for now...which is barely enough as it is) I personally don't have the money. It's also very hard for me to have fundraisers of any kind. Part of this is due to no day care/extra hands to watch my daughter, partially because I have to vehicle of my own, and partially because I do not own a computer (I have to try to get to the library or like today use a computer at the hospital while my daughter is admitted in....this time for seizures). I did happen though to find another Jacobsen's Syndrome child in my area and met with her and her mother. This child is almost 3 and really the only 2 things you can tell that are "wrong" with her are her heart condition (she has the sunken, dark circled eyes of someone with a heart disorder) and she doesn't speak (although she does understand everything you tell her and does do a lot of sign language.... and her "normal" 5 yr. old sister didn't talk till she was 3 anyway...).  It was good to know there are other families out there but at the same time it was kind of depressing meeting this mom. My daughter is severely affected by the disorder so the other mom and I really didn't know how to relate to eachother very well. I mean we're connected by the disorder but at the same time we each have a child at the other extreme...if that makes sense. Anyway...guess that's all for now. More from me later. Erin Bross linzee_carroll <linzee_carroll@ yahoo.com> wrote: Laura, We'll definately miss you and Cody! Have you tried contacting the Florida Developmental Disabilities Council? They may have Grants to send families to conferences like this. We have gotten funding in the past from our state's council. They are giving a minimal amount this year because their budget was cut, but it might be worth a try to contact the Florida one and see if they have any programs like that. Our council also gave us suggestions of other agencies that offer funding for to attend conferences. It may be a long shot, but you might want to give it a try if you still really want to come. I just looked up the site and it is www.fddc.org. Anyone who is looking for funding to come to the conference should try their state's council. I know a few other families have received similar funding in the past for the 11q conferences. Each state is different in what they offer, but a lot of times there is funding hidden somewhere out there, if you can just find it! Thanks, Linzee --- In 11q_disorders@ yahoogroups. com, "Laura" <lccw@...> wrote: > > Hello all, > It is with deep regret that Cody and I will not be attending the > conference. With all the budget cuts and people locking their pocket > books up so that they can continue to eat and buy gas, I have not had > much luck raising money :( > For everyone that will be able to attend the conference know that each > of you will be in our thoughts. I hope that maybe during the course of > the conference maybe someone could post a summary of each days events?! > Maybe the next time the conference comes around the budget crisis will > be over with :) > > Laura > Looking for that perfect or unique gift? I have over 3000 items for sale and catalogs available. Just visit my web group: http://finance. groups.yahoo. com/group/ Fanciful_ Figures/ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

---

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Hi Sandy,
For some reason the hotel gave us the banquet manager's phone number
for reservations by mistake.  The actual reservations number is 800-
676-6567.

Thanks,
Linzee
--- In 11q_disorders@yahoogroups.com, SANDYCST1@... wrote:
>
> LINZEE,
>   HI.
>   THE NUMBER YOU GAVE US TO CALL FOR RESERVATIONS AT THE  HANDERLY--
   I CAN'T
> SEEM TO GET THEM TO CALL ME BACK. I HAVE CALLED 3  TIMES ALREADY.
DO YOU HAVE
> ANOATHER NUMBER?
>   THANKS,
>   SANDY
>
>
>
> **************Need a new ride? Check out the largest site for U.S.
used car
> listings at AOL Autos.
> (http://autos.aol.com/used?NCID=aolcmp00300000002851)
>

Hi Peggy,
It's good to hear from you, and WOW; Grace is 33!!!!
It was just yesterday we came to San Diego for the first time and met
you guys. How time flies!!! I can certainly say though, I definitely
feel 10 yrs. older,!!
I'm sorry to hear that Grace is still have heart and liver issues, but
as you said she is a fighter!!
Sorry to hear you won't be at the conference, you've always been a
wealth of information for everyone.
Well, take care.
Tell Grace Lily and I say hello, and we'll miss her.
Lisa
--- In 11q_disorders@yahoogroups.com, "Peggy StClair" <thesqaw@...> wrote:
>
> Well we turned 33 today. Yes we have some health issues that may be
> due to her spina bifida too. But as always she is a fighter. I was so
> pleased to find this web page today. We will not be a at the
> conferance in June but our prayers are with you all.
> I just found an article that said our kids are more prone to breast
> cancer. What next?
>  Grace continues to struggle with kidney failure and heart issues.But
> for the most part does well. She goes to an adult center during the
> day if she feels good and other than that she plays with the kids that
> live with us now(5 of them) and loves to go next door to her brothers.
> We will be grandparents again in Dec. I had to give  the dr  all the
> good stuff so they can watch this baby. So far we have been lucky with
> the grandkids. Craniostenosis  is the most that has shown up in the
> oldest grandon. But it  als o had showed up on the father's side.
> I pray everyone is doing well. Grace's dad still has health problems
> that make him house bound at times. On a good day he is off and
> running. I am not able to work right now due to a full house. But it
> is working out ok.
> Take  are everyone Peggy
>

Laura,
We'll definately miss you and Cody! Have you tried contacting the
Florida Developmental Disabilities Council? They may have Grants to
send families to conferences like this. We have gotten funding in the
past from our state's council. They are giving a minimal amount this
year because their budget was cut, but it might be worth a try to
contact the Florida one and see if they have any programs like that.
Our council also gave us suggestions of other agencies that offer
funding for to attend conferences. It may be a long shot, but you
might want to give it a try if you still really want to come. I just
looked up the site and it is www.fddc.org.

Anyone who is looking for funding to come to the conference should try
their state's council. I know a few other families have received
similar funding in the past for the 11q conferences. Each state is
different in what they offer, but a lot of times there is funding
hidden somewhere out there, if you can just find it!

Thanks,
Linzee
--- In 11q_disorders@yahoogroups.com, "Laura" <lccw@...> wrote:
>
> Hello all,
> It is with deep regret that Cody and I will not be attending the
> conference. With all the budget cuts and people locking their pocket
> books up so that they can continue to eat and buy gas, I have not had
> much luck raising money :(
> For everyone that will be able to attend the conference know that
each
> of you will be in our thoughts. I hope that maybe during the course
of
> the conference maybe someone could post a summary of each days
events?!
> Maybe the next time the conference comes around the budget crisis
will
> be over with :)
>
> Laura
>

Laura,
We'll definately miss you and Cody!  Have you tried contacting the
Florida Developmental Disabilities Council?  They may have Grants to
send families to conferences like this.  We have gotten funding in the
past from our state's council.  They are giving a minimal amount this
year because their budget was cut, but it might be worth a try to
contact the Florida one and see if they have any programs like that.
Our council also gave us suggestions of other agencies that offer
funding for to attend conferences.  It may be a long shot, but you
might want to give it a try if you still really want to come.  I just
looked up the site and it is www.fddc.org.

Anyone who is looking for funding to come to the conference should try
their state's council.  I know a few other families have received
similar funding in the past for the 11q conferences.  Each state is
different in what they offer, but a lot of times there is funding
hidden somewhere out there, if you can just find it!

Thanks,
Linzee
--- In 11q_disorders@yahoogroups.com, "Laura" <lccw@...> wrote:
>
> Hello all,
> It is with deep regret that Cody and I will not be attending the
> conference. With all the budget cuts and people locking their pocket
> books up so that they can continue to eat and buy gas, I have not had
> much luck raising money :(
> For everyone that will be able to attend the conference know that
each
> of you will be in our thoughts. I hope that maybe during the course
of
> the conference maybe someone could post a summary of each days
events?!
> Maybe the next time the conference comes around the budget crisis
will
> be over with :)
>
> Laura
>

Hello all,
It is with deep regret that Cody and I will not be attending the
conference. With all the budget cuts and people locking their pocket
books up so that they can continue to eat and buy gas, I have not had
much luck raising money :(
For everyone that will be able to attend the conference know that each
of you will be in our thoughts. I hope that maybe during the course of
the conference maybe someone could post a summary of each days events?!
Maybe the next time the conference comes around the budget crisis will
be over with :)

Laura

Well we turned 33 today. Yes we have some health issues that may be
due to her spina bifida too. But as always she is a fighter. I was so
pleased to find this web page today. We will not be a at the
conferance in June but our prayers are with you all.
I just found an article that said our kids are more prone to breast
cancer. What next?
  Grace continues to struggle with kidney failure and heart issues.But
for the most part does well. She goes to an adult center during the
day if she feels good and other than that she plays with the kids that
live with us now(5 of them) and loves to go next door to her brothers.
We will be grandparents again in Dec. I had to give  the dr  all the
good stuff so they can watch this baby. So far we have been lucky with
the grandkids. Craniostenosis  is the most that has shown up in the
oldest grandon. But it  als o had showed up on the father's side.
I pray everyone is doing well. Grace's dad still has health problems
that make him house bound at times. On a good day he is off and
running. I am not able to work right now due to a full house. But it
is working out ok.
Take  are everyone Peggy

Hey Annette,
How are you doing????
Happy Birthday to Joshua!!!!!
Hope things are going well with you both,
Love & Kisses,
Lisa & Lily

Hey Annette,
How are you doing????
Happy Birthday to Joshua!!!!!
Hope things are going well with you both,
Love & Kisses,
Lisa & Lily

Hi Darlene,
Welcome!!! We have a daughter, Lillian, who is 10. She has an
interstitial deletion (11q-). Where do you live??? I'm an overly
aggressive Mo when it comes to therapy- Lily has had OT, & Pt since
she was 5mo. old. She started speech therapy when she was 7mo. old. If
you have ins. that will cover therapy have your Dr. write a
prescription for you, and get the ot,pt and speech outside of school.
You can get all those services in school, you have the right as the
parent and Dr.s script to get those services.You can get services
outside of school at the same time as you receive services in school-
they just can't work on the same goals. We live in Wisconsin, and our
school districts have to provide the services, or transport you to a
school where you can get therapy. Read, read read up on the laws in
your state!! You have to be an informed advocate for your son, so that
he can get all the services he will need. Things will be much easier
in the future if you get this stuff going now.
We found out Lily was 11q- 3 days after birth. She has cleft lip and
palate, as well as gross motor delays and her fine motor delays are
still an issue. When Lily started early ed she got speech 4days/wk, OT
3x/wk, and Pt3x/wk in school and OT,PT & Speech outside of school
2days/wk for 45 min( speech 3days/wk for 45 min.). She still has
speech 2days/wk out of school and 3days in school, OT 2days/wk and
specially designed phy-ed 2days/wk. She's a busy girl!!!
We're going to San Diego this summer also, it will be good to meet all
the new families.
Write anytime,
Lisa

--- In 11q_disorders@yahoogroups.com, Darlene McDonald
<darlenemcdonald777@...> wrote:
>
> Gretchen,
> Thank you so much for the advise and thanks to all off the wonderful
parents that have been e mailing me.  I am so touched and grateful.
Jack is finally verbal but about 2 years delayed.  He had speech when
he was 2 but once he turned 3 they took it away and said he did not
qulify.  It is so frustrating.  He needs OT for sure but what they
have is minimal.  I have an IEP in a couple of weeks so I will do more
research and see what our state/county is responsible for and our
doctor is writting a letter that should help us get Jack more
services.  He goes to special day classed 5 days a week for 2.5 hrs a
day but he needs more.  I can not tell you how much you're input means
to me and I was wondering if you minded telling me more about you're
child?  How is he/her doing and how about the rest of you're family.
What sort of activities does you're child enjoy?  I hope we can talk
more soon.  Are you going to the conference in San Diego? We booked it and
>  are going.  Anyone with 11q can e mail me at darlenemc777@...
> Darlene
>
>
>
> ----- Original Message ----
> From: "Gretchenwarren@..." <Gretchenwarren@...>
> To: 11q_disorders@yahoogroups.com
> Sent: Saturday, April 12, 2008 11:12:52 PM
> Subject: Re: [11q_disorders] Re: My son was just diagnosed with 11 q
terminal deletion disorder (Jacobsens)
>
> Darlene,
>
> I have a 13- year-old with 11Q-.  I was given early advice by
another parent of a Jacobsen child to seek Speech therapy early.  We
started around age 2- ask for one to one (is your child verbal? -- if
so you can site the need for oral/motor attention).  Sensory
Integration issues are common with most of  the kids so I would
definitely ask for O.T. and eventually P.T. if not both.  My daughter
still continues with an OT consult as it relates to behavior --ie;
anxiety, self-monitoring, etc.  Good luck.
>
> Gretchen Warren
>
>
> -----Original Message-----
> From: Darlene McDonald <darlenemcdonald777@ yahoo.com>
> To: 11q_disorders@ yahoogroups. com
> Sent: Sat, 12 Apr 2008 3:20 pm
> Subject: Re: [11q_disorders] Re: My son was just diagnosed with 11 q
terminal deletion disorder (Jacobsens)
>
>
> Happy Birhtday to Joshue!  Thank you for welcoming us.  You may be
mixing us up with another family just because we are coming to the
conference for sure and not being funded this year.  I am so happy
that you're son is doing so well and it gives me much hope.  Jack
looks like an average child but is about 2.5 developmentaly instead of
4.  Sometimes it can be hard for people that do not know us and do not
understand how he looks so "normal" yet acts so young.  I am really
looking forward to being with a buch of familys that all understand
and may be able to get some tips from.
> I have an older boy James who is 5 abnd 1/2.  He will not be coming
to the confence this year but he will come to the next one for sure.
I can not wait to meet you.  What sort of therapy does Joshue get if
you do not mind me asking?  I am still trying to get Jack all that he
needs.  Now he goes to special day class M-F 8-10:30.  A doctor we say
yeaterday (behavior specialist) said he should get more but it is up
to the state.  I have an IEP coming up and I hope that with this new
diagnosis we will be able to get more therapy for him.  At least some
1 on 1 speech and some OT or physical thearapy.  Take care and I hope
to talk again soon.
> Darlene
>
>
> ----- Original Message ----
> From: Nette M <halfcompletepkg@ yahoo.com>
> To: 11q_disorders@ yahoogroups. com
> Sent: Friday, April 11, 2008 7:43:06 PM
> Subject: Re: [11q_disorders] Re: My son was just diagnosed with 11 q
terminal deletion disorder (Jacobsens)
>
>
> Hello Darlene - welcome to the group!  I am the mom of Joshua.  He
just turned 8 yesterday!  He is Partial Trisomy 11q duplication on the
#14.  I know that the JS and the 11q duplications vary in lots of
ways.  Josh is multiply physically and mentally impaired.  He shows us
great things every day that prove "practicing medicine" is exactly
that PRACTICING! Josh has gone above and beyond what ANY doctor said
when he was born.  I am going to the conference and look forward to
meeting your family.  Hope the funding comes through for you!
> Take care -
> Annette
>
> linzee_carroll <linzee_carroll@ yahoo.com> wrote:
> Darlene,
> Welcome to the group. I have 2 boys (ages 9 and 6) who both have 11q
> deletions (and also 12p duplications- -they are 11q-, 12p+). They have
> fairly significant developmental delays in many areas and we are also
> dealing with some behavior problems. I'm excited to meet you in person
> at the conference in June!
>
> Linzee
>
> --- In 11q_disorders@ yahoogroups. com, "darlenemcdonald777 "
> <darlenemcdonald777 @...> wrote:
> >
> > Hi everyone,
> > I just found out the my beautiful son Jack (turning 4 May 5th) has
> > JS. I wanted to join this group for support and whatever else. We
> > are going to the conference in San Diego in June and would love to
> > make some connections with people before that we could meet in person
> > later. Our son has a speech delay as well as fine and gross motor
> and
> > some behavior issues. We are happy to finally have an answer to what
> > is going on with him but seeing how it is so rare, our doctors do not
> > know much.
> > Just wanted to get connected. I have never joined a message board
> > before so I hope I am doing this the correct way.
> > Thank you.
> > Darlene
> >
>
>
>
>
>
>
> TTFN - Ta Ta For Now
> Nette
> ____________ _________ _________ _________ _________ __
> Do You Yahoo!?
> Tired of spam? Yahoo! Mail has the best spam protection around
> http://mail. yahoo.com
>
>
>
> ____________ _________ _________ _________ _________ __
> Do You Yahoo!?
> Tired of spam? Yahoo! Mail has the best spam protection around
> http://mail. yahoo.com
>
>
> Get the MapQuest Toolbar, Maps, Traffic, Directions More!
>
>
>
>
________________________________________________________________________________\
____
> Be a better friend, newshound, and
> know-it-all with Yahoo! Mobile.  Try it now.
http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
>

Darlene,
Welcome to the group. I have 2 boys (ages 9 and 6) who both have 11q
deletions (and also 12p duplications--they are 11q-, 12p+). They have
fairly significant developmental delays in many areas and we are also
dealing with some behavior problems. I'm excited to meet you in person
at the conference in June!

Linzee

--- In 11q_disorders@yahoogroups.com, "darlenemcdonald777"
<darlenemcdonald777@...> wrote:
>
> Hi everyone,
> I just found out the my beautiful son Jack (turning 4 May 5th) has
> JS. I wanted to join this group for support and whatever else. We
> are going to the conference in San Diego in June and would love to
> make some connections with people before that we could meet in person
> later. Our son has a speech delay as well as fine and gross motor
and
> some behavior issues. We are happy to finally have an answer to what
> is going on with him but seeing how it is so rare, our doctors do not
> know much.
> Just wanted to get connected. I have never joined a message board
> before so I hope I am doing this the correct way.
> Thank you.
> Darlene
>

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

Darlene,
Welcome to the group.  I have 2 boys (ages 9 and 6) who both have 11q
deletions (and also 12p duplications--they are 11q-, 12p+).  They have
fairly significant developmental delays in many areas and we are also
dealing with some behavior problems.  I'm excited to meet you in person
at the conference in June!

Linzee

--- In 11q_disorders@yahoogroups.com, "darlenemcdonald777"
<darlenemcdonald777@...> wrote:
>
> Hi everyone,
> I just found out the my beautiful son Jack (turning 4 May 5th) has
> JS.  I wanted to join this group for support and whatever else.  We
> are going to the conference in San Diego in June and would love to
> make some connections with people before that we could meet in person
> later.  Our son has a speech delay as well as fine and gross motor
and
> some behavior issues.  We are happy to finally have an answer to what
> is going on with him but seeing how it is so rare, our doctors do not
> know much.
> Just wanted to get connected.  I have never joined a message board
> before so I hope I am doing this the correct way.
> Thank you.
> Darlene
>

Hi Darlene
My Name is Marie and my son Dylan is 6 and has JS we are also going to
the conference in San Diego (providing fundraising goes well as we are
coming from australia) looking forward to catching up with you and the
other families as well!!!
Drop me a line anytime mariehardey@... (offer open to any in
this group)
Cheers
Marie





--- In 11q_disorders@yahoogroups.com, "darlenemcdonald777"
<darlenemcdonald777@...> wrote:
>
> Hi everyone,
> I just found out the my beautiful son Jack (turning 4 May 5th) has
> JS.  I wanted to join this group for support and whatever else.  We
> are going to the conference in San Diego in June and would love to
> make some connections with people before that we could meet in person
> later.  Our son has a speech delay as well as fine and gross motor
and
> some behavior issues.  We are happy to finally have an answer to what
> is going on with him but seeing how it is so rare, our doctors do not
> know much.
> Just wanted to get connected.  I have never joined a message board
> before so I hope I am doing this the correct way.
> Thank you.
> Darlene
>

Hi Darlene,
My son Daniel is going to be 5 in May. Danny also has fine motor
skill issues and a speech delay in addition to some feeding issues.
Welcome to the group. Let me know if you have any questions and I
will
do my best to answer them.

Good luck!

Rick

--- In 11q_disorders@yahoogroups.com, "darlenemcdonald777"
<darlenemcdonald777@...> wrote:
>
> Hi everyone,
> I just found out the my beautiful son Jack (turning 4 May 5th) has
> JS. I wanted to join this group for support and whatever else. We
> are going to the conference in San Diego in June and would love to
> make some connections with people before that we could meet in
person
> later. Our son has a speech delay as well as fine and gross motor
and
> some behavior issues. We are happy to finally have an answer to
what
> is going on with him but seeing how it is so rare, our doctors do
not
> know much.
> Just wanted to get connected. I have never joined a message board
> before so I hope I am doing this the correct way.
> Thank you.
> Darlene
>

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

Welcome Darlene.  I have a daughter Faith who will be 4 in September.
We were diagnosed in utero as she also has Hypoplastic Left Heart.  She
also has a speech delay and is currently only take a few steps on her
own. Her motor skills, both fine and gross, are behind but she
continues to make great strides.  It is great you are attending the
conference as it is wonderful to meet the other kids.  It is still up
in the air as to our arrangements for the conference as Faith has a
cardiology appointment on June 6th at which we will probably start
planning her final heart surgery to correct the heart condition.  If we
go it will be great to meet you and your son.  This is a great resource
to ask questions and get others input on possibilities and struggles we
have with our very special children.

take care,
Jeremy
Father, Faith 3 1/2
Orlando, FL

Hi Darlene,
My son Daniel is going to be 5 in May. Danny also has fine motor
skill issues and a speech delay in addition to some feeding issues.
Welcome to the group. Let me know if you have any questions and I
will
do my best to answer them.

Good luck!

Rick


--- In 11q_disorders@yahoogroups.com, "darlenemcdonald777"
<darlenemcdonald777@...> wrote:
>
> Hi everyone,
> I just found out the my beautiful son Jack (turning 4 May 5th) has
> JS.  I wanted to join this group for support and whatever else.  We
> are going to the conference in San Diego in June and would love to
> make some connections with people before that we could meet in
person
> later.  Our son has a speech delay as well as fine and gross motor
and
> some behavior issues.  We are happy to finally have an answer to
what
> is going on with him but seeing how it is so rare, our doctors do
not
> know much.
> Just wanted to get connected.  I have never joined a message board
> before so I hope I am doing this the correct way.
> Thank you.
> Darlene
>

Hi everyone,
I just found out the my beautiful son Jack (turning 4 May 5th) has
JS.  I wanted to join this group for support and whatever else.  We
are going to the conference in San Diego in June and would love to
make some connections with people before that we could meet in person
later.  Our son has a speech delay as well as fine and gross motor and
some behavior issues.  We are happy to finally have an answer to what
is going on with him but seeing how it is so rare, our doctors do not
know much.
Just wanted to get connected.  I have never joined a message board
before so I hope I am doing this the correct way.
Thank you.
Darlene

  Hi, Nette.

          I hope everything is fine with you and your family. We are going to the conference, i wish see you there...God bless you....Alessandra.

Nette M <halfcompletepkg@yahoo.com> wrote:

HI all.  My mom took the time to type out the email below.  I dont have the energy right now,but wanted to be sure you were updated.  If i missed/dup any emails sorry.  forward them on to the correct ones please.  Take care and xoxo to all!

Annette

 

 

 

 

 

 

 

Today was Annette's "Gamma Knife" (Cyber Knife) laser surgery. We had to be at Beaumont at 6am. Upon our arrival we were met by some of the most awesome nurses and techs. They did everything they could to help us to understand the procedures that would be done, what to expect with each phase of the treatment and their assurance that whatever they could do to make things as easy as possible for all of us they would be there for us.

 

Seeing Annette with the head piece screwed on was most difficult but the realization that this tremendous procedure could be done to remove the brain tumors rather than opening the skull for brain surgery made the whole process more tolerable. The laser surgery was complete by 11:00am. We were on our way home, with Annette walking out of the hospital, by 1:00pm. It's so remarkable!! With an open brain surgery not only would the hospital stay be a number of days, and recovery time very lengthy, the risks are so much greater for infection, swelling, etc.  You can go to the Beaumont website here and click on the Patient link on the left side then scroll down to the left bottom and click the Presentation to watch the 8 minute procedure they did to her.   www.beaumontgammaknife.com

 

Annette will go back for a follow-up exam in two weeks and another MRI in 6 to 8 weeks. The MRI will be to see if the tumors were able to be removed with the laser procedure. There are a number of things that can occur from the procedure. The best case scenario would be for the tumors to be gone. Acceptable scenarios would be for the tumors being smaller or the same size. In which case continued monitoring of the brain be done. Only increase in size or new tumors would be a bad result. On Monday, Mar. 17, Annette is expected to begin the maintenance treatment pill that they hope will keep the cancer from showing up elsewhere.

 

That word "hope" is such an awesome word. Add to it the word "faith" and it becomes very powerful. Hebrews 11:1 says "Now faith is being sure of what we hope for and certain of what we do not see." We have faith that God will be with us through all of this and hope that He will bring healing. Please continue to hold Annette in your prayers as she battles this "giant" cancer, one day at a time (Matthew 6:25 - 34). God has certainly given us many miracles and has brought us a peace that passes understanding through the many ups and downs. We know, without a doubt, that your prayers have made and will continue to make a difference.

 

Love & Prayers - Sue & Sherman

TTFN - Ta Ta For Now

Nette

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My daughter has partial trisomy 11q...what type of information are you looking for?

 

stefanie

-----Original Message-----
From: 11q_disorders@yahoogroups.com [mailto:11q_disorders@yahoogroups.com]On Behalf Of Jenna
Sent: Thursday, April 03, 2008 2:15 PM
To: 11q_disorders@yahoogroups.com
Subject: [11q_disorders] hi

Hello. My name is Jenna and I am doing a presentation for Midland High
School on Partial Trisomy 11q duplication. My cousin Joshua Mucker has
this diagnoisis and I would appreciate any information you could give
me on this topic. Thank you.
Jenna

HI all.  My mom took the time to type out the email below.  I dont have the energy right now,but wanted to be sure you were updated.  If i missed/dup any emails sorry.  forward them on to the correct ones please.  Take care and xoxo to all!

Annette

 

 

 

 

 

 

 

Today was Annette's "Gamma Knife" (Cyber Knife) laser surgery. We had to be at Beaumont at 6am. Upon our arrival we were met by some of the most awesome nurses and techs. They did everything they could to help us to understand the procedures that would be done, what to expect with each phase of the treatment and their assurance that whatever they could do to make things as easy as possible for all of us they would be there for us.

 

Seeing Annette with the head piece screwed on was most difficult but the realization that this tremendous procedure could be done to remove the brain tumors rather than opening the skull for brain surgery made the whole process more tolerable. The laser surgery was complete by 11:00am. We were on our way home, with Annette walking out of the hospital, by 1:00pm. It's so remarkable!! With an open brain surgery not only would the hospital stay be a number of days, and recovery time very lengthy, the risks are so much greater for infection, swelling, etc.  You can go to the Beaumont website here and click on the Patient link on the left side then scroll down to the left bottom and click the Presentation to watch the 8 minute procedure they did to her.   www.beaumontgammaknife.com

 

Annette will go back for a follow-up exam in two weeks and another MRI in 6 to 8 weeks. The MRI will be to see if the tumors were able to be removed with the laser procedure. There are a number of things that can occur from the procedure. The best case scenario would be for the tumors to be gone. Acceptable scenarios would be for the tumors being smaller or the same size. In which case continued monitoring of the brain be done. Only increase in size or new tumors would be a bad result. On Monday, Mar. 17, Annette is expected to begin the maintenance treatment pill that they hope will keep the cancer from showing up elsewhere.

 

That word "hope" is such an awesome word. Add to it the word "faith" and it becomes very powerful. Hebrews 11:1 says "Now faith is being sure of what we hope for and certain of what we do not see." We have faith that God will be with us through all of this and hope that He will bring healing. Please continue to hold Annette in your prayers as she battles this "giant" cancer, one day at a time (Matthew 6:25 - 34). God has certainly given us many miracles and has brought us a peace that passes understanding through the many ups and downs. We know, without a doubt, that your prayers have made and will continue to make a difference.

 

Love & Prayers - Sue & Sherman

TTFN - Ta Ta For Now

Nette

---

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

-----Original Message-----
From: 11q_disorders@yahoogroups.com [mailto:11q_disorders@yahoogroups.com]On Behalf Of Jenna
Sent: Thursday, April 03, 2008 2:15 PM
To: 11q_disorders@yahoogroups.com
Subject: [11q_disorders] hi

Hello. My name is Jenna and I am doing a presentation for Midland High
School on Partial Trisomy 11q duplication. My cousin Joshua Mucker has
this diagnoisis and I would appreciate any information you could give
me on this topic. Thank you.
Jenna