LinkedIn

That sounds like a nice idea. Wish we would have known we had our 2nd heart surgery in January.

PS I don't have a coordinator in our area (Kansas) so maybe there is a way to let people know who don't?

Blessings

Carrie

--- On Fri, 4/22/11, karincoulter <coulters@...> wrote:

From: karincoulter <coulters@...>
Subject: [mendedlittleheartsmembers] surgery care packages
To: mendedlittleheartsmembers@yahoogroups.com
Date: Friday, April 22, 2011, 3:57 AM

Do any of the MLH coordinators need surgery care packages? I currently have 10 boxes of 10 care packages each that are ready to ship if you need them. Please email me at karin.coulter@... and let me know how many boxes you need and where to ship them to. Thanks!

Hope everyone has a great Earth Day and wonderful weekend!

Karin Coulter
Saving Little Hearts

P.S. All of these care packages have the SLH logo on one side of the bag and the MLH logo on the other side. There are no charges for the bags.

Reply | Messages in this Topic (2)

#743

From: Amy Basken <amybasken@...>
Date: Wed May 11, 2011 1:14 pm
Subject: CHD Walks

amybasken

I've updated our blog to include the upcoming CHD Walks:
http://wp.me/pJIc8-3L

Check it out and please consider posting the following on your social media sites:
Mended Little Hearts is Walking For Our Littlest Hearts - Find a Walk near You!� Learn more: http://wp.me/pJIc8-3L

--
National Advocacy Chairperson
Mended Little Hearts
www.mendedlittlehearts.org
(608) 370-3739
amybasken@...

"Little Hearts Hold Big Hopes"

Mended Little Hearts provides hope and support to children, families, and caregivers impacted by congenital heart defects in order to extend and improve quality of life

#744

From: Erin Taylor <henrytheblog@...>
Date: Fri Jul 15, 2011 1:53 pm
Subject: New List of SS Compassionate Allowances; kid's heart conditions

andreaatbeach

http://www.socialsecurity.gov/compassionateallowances/conditions.htm: Visit here and see that HLHS, transplant conditions and several others have been added!

�

Erin @ HenrytheBlog.com

The Malley & Henry Fund: find us on Facebook!

#745

From: Amy Basken <amybasken@...>
Date: Fri Jul 15, 2011 2:25 pm
Subject: Re: New List of SS Compassionate Allowances; kid's heart conditions

amybasken

Yes!! �Many kudos to the efforts of Mended Little Hearts for their role in making this a reality!

On Fri, Jul 15, 2011 at 8:53 AM, Erin Taylor <henrytheblog@...> wrote:

�

http://www.socialsecurity.gov/compassionateallowances/conditions.htm: Visit here and see that HLHS, transplant conditions and several others have been added!

�

Erin @ HenrytheBlog.com

The Malley & Henry Fund: find us on Facebook!

--
National Advocacy Chairperson
Mended Little Hearts
www.mendedlittlehearts.org
(608) 370-3739
amybasken@...

advocacy@...

"Little Hearts Hold Big Hopes"

Mended Little Hearts provides hope and support to children, families, and caregivers impacted by congenital heart defects in order to extend and improve quality of life

#746

From: Tammy Sears <tcsears@...>
Date: Fri Jul 15, 2011 2:38 pm
Subject: Re: New List of SS Compassionate Allowances; kid's heart conditions

tylercurtiss...

Excuse my ignorance, but what does that mean? Can Tyler now get social security benefits without my income being considered?

Thanks,

Tammy (cp TylerCurtis)

From: Amy Basken <amybasken@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Fri, July 15, 2011 10:25:53 AM
Subject: Re: [mendedlittleheartsmembers] New List of SS Compassionate Allowances; kid's heart conditions

Yes!! Many kudos to the efforts of Mended Little Hearts for their role in making this a reality!

On Fri, Jul 15, 2011 at 8:53 AM, Erin Taylor <henrytheblog@...> wrote:

http://www.socialsecurity.gov/compassionateallowances/conditions.htm: Visit here and see that HLHS, transplant conditions and several others have been added!

Erin @ HenrytheBlog.com

The Malley & Henry Fund: find us on Facebook!

--
National Advocacy Chairperson
Mended Little Hearts
www.mendedlittlehearts.org
(608) 370-3739
amybasken@...

#747

From: Amy Basken <amybasken@...>
Date: Fri Jul 15, 2011 3:26 pm
Subject: Re: New List of SS Compassionate Allowances; kid's heart conditions

amybasken

Based on what I have read, I am not entirely certain. �I would say it is�definitely�worth looking into! �Here's the website:�http://www.ssa.gov/compassionateallowances/

On Fri, Jul 15, 2011 at 9:38 AM, Tammy Sears <tcsears@...> wrote:

�

Excuse my ignorance, but what does that mean?� Can Tyler now get social security benefits without my income being considered?

Thanks,

Tammy (cp TylerCurtis)

From: Amy Basken <amybasken@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Fri, July 15, 2011 10:25:53 AM
Subject: Re: [mendedlittleheartsmembers] New List of SS Compassionate Allowances; kid's heart conditions

�

Yes!! �Many kudos to the efforts of Mended Little Hearts for their role in making this a reality!

On Fri, Jul 15, 2011 at 8:53 AM, Erin Taylor <henrytheblog@...> wrote:

�

http://www.socialsecurity.gov/compassionateallowances/conditions.htm: Visit here and see that HLHS, transplant conditions and several others have been added!

�

Erin @ HenrytheBlog.com

The Malley & Henry Fund: find us on Facebook!

--
National Advocacy Chairperson
Mended Little Hearts
www.mendedlittlehearts.org
(608) 370-3739
amybasken@...
advocacy@...

"Little Hearts Hold Big Hopes"

Mended Little Hearts provides hope and support to children, families, and caregivers impacted by congenital heart defects in order to extend and improve quality of life

--
National Advocacy Chairperson
Mended Little Hearts
www.mendedlittlehearts.org
(608) 370-3739
amybasken@...

#748

From: Tammy Sears <tcsears@...>
Date: Fri Jul 15, 2011 3:37 pm
Subject: Re: New List of SS Compassionate Allowances; kid's heart conditions

tylercurtiss...

Thanks, after looking online and then calling the social security administration, I still make too much for Tyler to qualify currently. But from what I can gather, this means for those who are currently trying to file and who meet the finacial limits that the child will get their benefits sooner and with less digging into the family's background. It also means, that a child who is 18 or older with a condition on this list will automatically qualify...so that is kind of a relief also.

From: Amy Basken <amybasken@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Fri, July 15, 2011 11:26:14 AM
Subject: Re: [mendedlittleheartsmembers] New List of SS Compassionate Allowances; kid's heart conditions

Based on what I have read, I am not entirely certain. I would say it is definitely worth looking into! Here's the website: http://www.ssa.gov/compassionateallowances/

On Fri, Jul 15, 2011 at 9:38 AM, Tammy Sears <tcsears@...> wrote:

Excuse my ignorance, but what does that mean? Can Tyler now get social security benefits without my income being considered?

Thanks,

Tammy (cp TylerCurtis)

From: Amy Basken <amybasken@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Fri, July 15, 2011 10:25:53 AM
Subject: Re: [mendedlittleheartsmembers] New List of SS Compassionate Allowances; kid's heart conditions

Yes!! Many kudos to the efforts of Mended Little Hearts for their role in making this a reality!

On Fri, Jul 15, 2011 at 8:53 AM, Erin Taylor <henrytheblog@...> wrote:

http://www.socialsecurity.gov/compassionateallowances/conditions.htm: Visit here and see that HLHS, transplant conditions and several others have been added!

Erin @ HenrytheBlog.com

The Malley & Henry Fund: find us on Facebook!

--
National Advocacy Chairperson
Mended Little Hearts
www.mendedlittlehearts.org
(608) 370-3739
amybasken@...
advocacy@...

"Little Hearts Hold Big Hopes"

Mended Little Hearts provides hope and support to children, families, and caregivers impacted by congenital heart defects in order to extend and improve quality of life

--
National Advocacy Chairperson
Mended Little Hearts
www.mendedlittlehearts.org
(608) 370-3739
amybasken@...

#749

From: ter <tdv1994@...>
Date: Fri Jul 15, 2011 8:48 pm
Subject: Re: New List of SS Compassionate Allowances; kid's heart conditions

tdv1994

Thank you both for all the information!

Dixie Varns
Mended Little Hearts/Thumpers Coordinator
National Awareness Committee
www.mendedlittlehearts.org
Little hearts hold big hopes.
Mom to Steven 16 yr HH
Tucker 12 yr HLHS, Co-arc, pacemaker...
wife to Terry
--- On Fri, 7/15/11, Tammy Sears <tcsears@...> wrote:

From: Tammy Sears <tcsears@...>
Subject: Re: [mendedlittleheartsmembers] New List of SS Compassionate Allowances; kid's heart conditions
To: mendedlittleheartsmembers@yahoogroups.com
Date: Friday, July 15, 2011, 10:37 AM

Thanks, after looking online and then calling the social security administration, I still make too much for Tyler to qualify currently. But from what I can gather, this means for those who are currently trying to file and who meet the finacial limits that the child will get their benefits sooner and with less digging into the family's background. It also means, that a child who is 18 or older with a condition on this list will automatically qualify...so that is kind of a relief also.

From: Amy Basken <amybasken@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Fri, July 15, 2011 11:26:14 AM
Subject: Re: [mendedlittleheartsmembers] New List of SS Compassionate Allowances; kid's heart conditions

Based on what I have read, I am not entirely certain. I would say it is definitely worth looking into! Here's the website: http://www.ssa.gov/compassionateallowances/

On Fri, Jul 15, 2011 at 9:38 AM, Tammy Sears <tcsears@...> wrote:

Excuse my ignorance, but what does that mean? Can Tyler now get social security benefits without my income being considered?

Thanks,

Tammy (cp TylerCurtis)

From: Amy Basken <amybasken@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Fri, July 15, 2011 10:25:53 AM
Subject: Re: [mendedlittleheartsmembers] New List of SS Compassionate Allowances; kid's heart conditions

Yes!! Many kudos to the efforts of Mended Little Hearts for their role in making this a reality!

On Fri, Jul 15, 2011 at 8:53 AM, Erin Taylor <henrytheblog@...> wrote:

http://www.socialsecurity.gov/compassionateallowances/conditions.htm: Visit here and see that HLHS, transplant conditions and several others have been added!

Erin @ HenrytheBlog.com

The Malley & Henry Fund: find us on Facebook!

--
National Advocacy Chairperson
Mended Little Hearts
www.mendedlittlehearts.org
(608) 370-3739
amybasken@...
advocacy@...

"Little Hearts Hold Big Hopes"

Mended Little Hearts provides hope and support to children, families, and caregivers impacted by congenital heart defects in order to extend and improve quality of life

--
National Advocacy Chairperson
Mended Little Hearts
www.mendedlittlehearts.org
(608) 370-3739
amybasken@...
advocacy@...

"Little Hearts Hold Big Hopes"

Mended Little Hearts provides hope and support to children, families, and caregivers impacted by congenital heart defects in order to extend and improve quality of life

#750

From: "sasha" <tink09belle@...>
Date: Tue Aug 9, 2011 2:39 pm
Subject: Vascular ring

tink09belle

Anybody have or know anything about vascular ring? I have a cousin who was
diagnosed as an infant but nothing was done at the time. She has recently looked
into it and is concerned. I am sure she will be talking to a cardio but I
figured I would enquire here too.

Thanks,

Sasha

#751

From: kimberly lester <kimberly-lester@...>
Date: Tue Aug 9, 2011 3:53 pm
Subject: (No subject)

kimberly-les...

Hello all,

I have a question have any of you ever did FMLA when your child was having an angioplastic done.? PLease let me know.

Thanks

Kimberly Flowers mother of Karrington Flowers (Tetrology of Fallot)

#752

From: Joanna Ricketts <joannaricketts@...>
Date: Tue Aug 9, 2011 4:11 pm
Subject: Re: (unknown)

joannaricket...

I have used FMLA for a variety of heart related issues (but not that specific one). All I had to do was have his doctor fill out an initial request and mark that I would need leave on an intermittent basis. This allowed one paperwork process for all treatments relating to his heart condition. They can request updates I think on a monthly basis, but it helped with the paperwork process.

Sent from my iPhone

On Aug 9, 2011, at 10:53 AM, kimberly lester <kimberly-lester@...> wrote:

Hello all,

I have a question have any of you ever did FMLA when your child was having an angioplastic done.? PLease let me know.

Thanks

Kimberly Flowers mother of Karrington Flowers (Tetrology of Fallot)

#753

From: kimberly lester <kimberly-lester@...>
Date: Tue Aug 9, 2011 5:53 pm
Subject: Re: (unknown)

kimberly-les...

Okay, thank you

From: Joanna Ricketts <joannaricketts@...>
To: "mendedlittleheartsmembers@yahoogroups.com" <mendedlittleheartsmembers@yahoogroups.com>
Sent: Tue, August 9, 2011 11:11:15 AM
Subject: Re: [mendedlittleheartsmembers] (unknown)

On Aug 9, 2011, at 10:53 AM, kimberly lester <kimberly-lester@...> wrote:

Hello all,

I have a question have any of you ever did FMLA when your child was having an angioplastic done.? PLease let me know.

Thanks

Kimberly Flowers mother of Karrington Flowers (Tetrology of Fallot)

#754

From: Tammy Sears <tcsears@...>
Date: Tue Aug 9, 2011 6:13 pm
Subject: Re: (unknown)

tylercurtiss...

When Tyler was diagnosed in the womb, the cardiologist wrote up a letter explaining Tyler's condition and why it would be neccessary for me to take off extended periods of time before and particularly after his birth. This not only was all I needed to get approved for FMLA, but also to get on my work's donated leave program. To date, I've never had to go with out pay and have used nearly 2 years worth of donated leave from my coworkers and folks at the plants that I provide support for (I work for TVA which is an electric utility producer in the southeast). It has been a huge blessing! I have used it for doctors appointments (if I was out of leave from an extended hospital stay), for Tyler's heart caths, and for his surgeries. Hope it works out for you!

Hugs,

Tammy (cp TylerCurtis)

From: kimberly lester <kimberly-lester@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Tue, August 9, 2011 11:53:55 AM
Subject: [mendedlittleheartsmembers] (unknown)

Hello all,

I have a question have any of you ever did FMLA when your child was having an angioplastic done.? PLease let me know.

Thanks

Kimberly Flowers mother of Karrington Flowers (Tetrology of Fallot)

#755

From: kimberly lester <kimberly-lester@...>
Date: Tue Aug 9, 2011 7:54 pm
Subject: Re: (unknown)

kimberly-les...

Thanks Tammy

From: Tammy Sears <tcsears@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Tue, August 9, 2011 1:13:20 PM
Subject: Re: [mendedlittleheartsmembers] (unknown)

Hugs,

Tammy (cp TylerCurtis)

From: kimberly lester <kimberly-lester@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Tue, August 9, 2011 11:53:55 AM
Subject: [mendedlittleheartsmembers] (unknown)

Hello all,

I have a question have any of you ever did FMLA when your child was having an angioplastic done.? PLease let me know.

Thanks

Kimberly Flowers mother of Karrington Flowers (Tetrology of Fallot)

#756

From: Kim Baratz <berly15@...>
Date: Sat Aug 27, 2011 11:04 pm
Subject: Invitation to connect on LinkedIn

mjnkk

Confirm that you know Kim

I'd like to add you to my professional network on LinkedIn.

- Kim

Kim Baratz
Teacher at Edmond Public Schools
United States

Reply | Messages in this Topic (2)

#757

From: Cheyenne Gibbs via LinkedIn <cheycry21@...>
Date: Mon Aug 29, 2011 1:28 pm
Subject: Invitation to connect on LinkedIn

cheycry21

View invitation from Cheyenne Gibbs

Cheyenne Gibbs requested to add you as a connection on LinkedIn:

Kimberly,

I'd like to add you to my professional network on LinkedIn.

- Cheyenne

DID YOU KNOW you can showcase your professional knowledge on LinkedIn to receive job/consulting offers and enhance your professional reputation?
Posting replies to questions on LinkedIn Answers puts you in front of the world's professional community.

Reply | Messages in this Topic (2)

#758

From: "tszew2002" <tszew2002@...>
Date: Tue Sep 6, 2011 2:33 am
Subject: Any families in Oregon?

tszew2002

Hi Everyone,
We're contemplating relocating to Corvalis, OR and are wondering where families
out in that area are going for pediatric cardiologists.  Our daughter has
tricuspid atresia, one year post fontan and doing amazing.  We've been living
two miles away from her cardiologist for the last 9.5 years so we're a little
leary in making the move, but it is time... so, if anyone has any feedback (both
good and bad) about cardiologists, hospitals, or surgeons out in that area, we
would greatly appreciate it :)
Thanks so much!
Tammy Szewczynski
Mom to Alli
10 years old
Tricuspid Atresia, one year post-fontan

Reply | Messages in this Topic (3)

#759

From: Denise Shisler <deniseshisler@...>
Date: Tue Sep 6, 2011 2:42 am
Subject: Re: Any families in Oregon?

deniseshisler

Hi Tammy, my son Cody, is also 10, and also has tricuspid atresia. He has always gone up to Doernbecher Children's hospital, which we love! His doctor retired last summer, and his new doctor is Dr. Kelly. We were also very nervous about getting a new one, but he's great. But we have Kaiser, not sure what insurance you have. I must say, all the peds cardiologist up there are very good, but I've also heard good things about Emanual Children's hospital. I think we live in a very good area for peds cardiologist, but I can also understand how hard it must be to move from your old one! Anyway, good luck with finding the right doctor for your daughter, and welcome to the area!

--- On Mon, 9/5/11, tszew2002 <tszew2002@...> wrote:

From: tszew2002 <tszew2002@...>
Subject: [mendedlittleheartsmembers] Any families in Oregon?
To: mendedlittleheartsmembers@yahoogroups.com
Date: Monday, September 5, 2011, 7:33 PM

Hi Everyone,
We're contemplating relocating to Corvalis, OR and are wondering where families out in that area are going for pediatric cardiologists. Our daughter has tricuspid atresia, one year post fontan and doing amazing. We've been living two miles away from her cardiologist for the last 9.5 years so we're a little leary in making the move, but it is time... so, if anyone has any feedback (both good and bad) about cardiologists, hospitals, or surgeons out in that area, we would greatly appreciate it :)
Thanks so much!
Tammy Szewczynski
Mom to Alli
10 years old
Tricuspid Atresia, one year post-fontan

Reply | Messages in this Topic (3)

#760

From: Tammy Szewczynski <tszew2002@...>
Date: Tue Sep 6, 2011 3:03 am
Subject: Re: Any families in Oregon?

tszew2002

Hi Denise!

Thank you so much for your email! So great to hear about your son - are you in Corvalis? We have looked into Doernbecher and Alli's cardiologist spoke highly about the program as well as mentioned a colleague he went to school with (but is close to retirement). Alli's cardiologist here at the Mayo is likely to retire in the next couple of years and we will have to be making a switch anyways - so now seems to be the time.

How is Cody doing? Did he have the 'three' surgeries? Are there any CHD groups that meet for the kids out there? We've been lucky with Alli and have had her involved with a group called Camp Odayin (for kids with heart disease) so we'd like to get her involved with such a group out there as well. It's somewhat scary to think about moving away from her care here, but since her surgery last August, Allli's been doing the best ever and it finally feels right to move forward with life (away from cardiac care).

Sorry for all the questions, I'm just so curious and anxious to try and make a go of this in Corvalis :)

Have a great night - and thank you so much again for your email!

Tammy

--- On Mon, 9/5/11, Denise Shisler <deniseshisler@...> wrote:

From: Denise Shisler <deniseshisler@...>
Subject: Re: [mendedlittleheartsmembers] Any families in Oregon?
To: mendedlittleheartsmembers@yahoogroups.com
Date: Monday, September 5, 2011, 9:42 PM

Hi Tammy, my son Cody, is also 10, and also has tricuspid atresia. He has always gone up to Doernbecher Children's hospital, which we love! His doctor retired last summer, and his new doctor is Dr. Kelly. We were also very nervous about getting a new one, but he's great. But we have Kaiser, not sure what insurance you have. I must say, all the peds cardiologist up there are very good, but I've also heard good things about Emanual Children's hospital. I think we live in a very good area for peds cardiologist, but I can also understand how hard it must be to move from your old one! Anyway, good luck with finding the right doctor for your daughter, and welcome to the area!

--- On Mon, 9/5/11, tszew2002 <tszew2002@...> wrote:

From: tszew2002 <tszew2002@...>
Subject: [mendedlittleheartsmembers] Any families in Oregon?
To: mendedlittleheartsmembers@yahoogroups.com
Date: Monday, September 5, 2011, 7:33 PM

Hi Everyone,
We're contemplating relocating to Corvalis, OR and are wondering where families out in that area are going for pediatric cardiologists. Our daughter has tricuspid atresia, one year post fontan and doing amazing. We've been living two miles away from her cardiologist for the last 9.5 years so we're a little leary in making the move, but it is time... so, if anyone has any feedback (both good and bad) about cardiologists, hospitals, or surgeons out in that area, we would greatly appreciate it :)
Thanks so much!
Tammy Szewczynski
Mom to Alli
10 years old
Tricuspid Atresia, one year post-fontan

Reply | Messages in this Topic (3)

#761

From: "jodilemacks" <jlemacks@...>
Date: Tue Oct 11, 2011 5:20 pm
Subject: learning disabilities

jodilemacks

Joshua (hlhs 8 years, Fontan 2006) was discharged from speech in June of this
year.  He had really weird speech patterns that no one seemsed to be able to
explain, but now he is doing well with speech.

At the end of last school year, he failed his reading benchmark.  He failed it
again this fall, so he will have access to a reading specialist.  However, they
will not test him for a learning disability because he is not one grade level
behind.

Has anyone experienced this?  What did you do?

Jodi Lemacks
Mom to Joshua hlhs 8, Nicholas 13, Jacob 15

#762

From: "jodilemacks" <jlemacks@...>
Date: Tue Oct 11, 2011 5:22 pm
Subject: another question

jodilemacks

Does anyone know how many CHD folks end up needing a heart transplant or other
organ transplants.  I am speaking for an organ donation organization in a couple
of weeks.
Thanks,

Jodi Lemacks
Mom to Joshua hlhs 8, Nicholas 13, Jacob 15

#763

From: Riann Taylor <rianntaylor@...>
Date: Tue Oct 11, 2011 6:29 pm
Subject: RE: learning disabilities

momofmiles

i disagree completely.
my dtr, who is heart healthy has continued to struggle with reading. come to find out, she was having visual tracking issues and required vision therapy. That seemed to help somewhat but there was still a need. Her reading specialist at school was not much help and really at a certain point, recommended that we look into larger print reading for sophia because she did not know what else to do.

We completed vision therapy and also had her assessed by a psychologist. I think they can check for a learning disability or add/adhd. Sophia was diagnoses with adhd. We started her with a new reading tutor who specializes in Orton- Gillingham. I think this was truly our breakthrough. She needed to learn in a different way. I know that also with dyslexia, they will test in the 2-3 grade. I would continue to push with your school system. Most of everything we did was out of the school setting and out of pocket, but I consider it to be an investment.

so i would start with
1. a vision therapist consult. You will find that many opthomatrists do NOT believe in vision therapy, I disagree. I actually now have miles enrolled in vision therapy since he has a lazy eye.
2. consider an orton gillingham tutor- it really helped sophia to learn how to break down the words.
3. maybe get an evaluation

Sophia struggled to maintain a reading level of 18 by the end of 2nd grade. Most of the time she was in the 14's. She came into 3rd grade at a 24. So we were pretty excited that the amount of time and effort has helped. I find that she still reads really slow, but the adhd meds seem to help her stay focused.

ask Joshua if the words move around on the page, are split in 2 or jump. THat may be a clue that he is struggleing with vision issues

I think this could be a good topic for national.

Riann Taylor
Mended Little Hearts of Columbus Coordinator
www.mlhcolumbus.blogspot.com
www.mlhcolumbus@...

To: mendedlittleheartsmembers@yahoogroups.com
From: jlemacks@...
Date: Tue, 11 Oct 2011 17:20:57 +0000
Subject: [mendedlittleheartsmembers] learning disabilities

Joshua (hlhs 8 years, Fontan 2006) was discharged from speech in June of this year. He had really weird speech patterns that no one seemsed to be able to explain, but now he is doing well with speech.

At the end of last school year, he failed his reading benchmark. He failed it again this fall, so he will have access to a reading specialist. However, they will not test him for a learning disability because he is not one grade level behind.

Has anyone experienced this? What did you do?

Jodi Lemacks
Mom to Joshua hlhs 8, Nicholas 13, Jacob 15

#764

From: "Andrea and Brett Baer" <baer4548@...>
Date: Tue Oct 11, 2011 6:53 pm
Subject: Re: learning disabilities

baer4548

I can’t speak to the reading issue specifically. BUT.....The school district should provide a learning disability test. You could ask your ped to write a script for him to be tested for a learning disability. Here they have to provide the testing if you request in writing. It falls under an IEP evaluation. So request that they evaluate him for an IEP and ask for a meeting. That will force them to comply and set up the eval. They will send you home paperwork that you will fill out as to why you are requesting this. And you can put in there your concerns as to his learning progress.

Any parent at anytime can request that and they are required to comply by law. Once they complete the testing you will then have a meeting scheduled and go over the issues he may be having. Then you can design an IEP to help.

Good luck!

Andrea Baer
Mended Little Hearts
Local Coordinator for Southwestern, PA
National Growth and Development Coordinator
www.mendedlittlehearts.org
www.swpa.mendedlittlehearts.net

From: jodilemacks

Sent: Tuesday, October 11, 2011 1:20 PM

To: mendedlittleheartsmembers@yahoogroups.com

Subject: [mendedlittleheartsmembers] learning disabilities

#765

From: Kelli Carlson <carlsonkelli@...>
Date: Tue Oct 11, 2011 7:50 pm
Subject: RE: learning disabilities

momofwillaren

Jodi,

I am a special education teacher and do most of the testing in my building. I'm happy to plan a time to chat with you if you are interested.

Kelli Carlson
Co-Founder/Group Coordinator of Helping Hands, Healing Hearts: A Mended Little Hearts Chapter (www.riheartgroup.com)

Super proud mom to Will, my 5 year old heart survivor
Super proud mom to Anna, my sweet baby girl
Happily married to Derek since 2001

To: mendedlittleheartsmembers@yahoogroups.com
From: jlemacks@...
Date: Tue, 11 Oct 2011 17:20:57 +0000
Subject: [mendedlittleheartsmembers] learning disabilities

#766

From: Misty Swingle <pixydust614977@...>
Date: Tue Oct 11, 2011 8:55 pm
Subject: Re: learning disabilities

pixydust614977

when my son (TAPVR) was in third grade they tested him and put him on an IEP program. he has a learning dissability and Asperger's autism. the IEP helps him stay on strack of where he needs to be...his own speed. since they said he does have a learning dissability they advised to not hold him back. he is now 12 and still on an IEP but doing well:)

From: jodilemacks <jlemacks@...>
To: mendedlittleheartsmembers@yahoogroups.com
Sent: Tuesday, October 11, 2011 12:20 PM
Subject: [mendedlittleheartsmembers] learning disabilities

#767

From: "morans53@..." <morans53@...>
Date: Wed Oct 12, 2011 1:32 am
Subject: RE: learning disabilities

morans53

Hey Jodi,
I am also a special education teacher and complete the testing in my building.
If you put in writing a request for a child study the school system is required
to hold a meeting to address your concerns and determine if testing is needed.
There are a lot of steps in the IEP process. I would be happy to help. Let me
know. I am in your local chapter. Becca is my daughter, she has truncus
arteriosis.
Sabrina

Sent from my Verizon Wireless Phone

--- Original Message ---

From: jodilemacks <jlemacks@...>
Sent: October 11, 2011 10/11/11
To: mendedlittleheartsmembers@yahoogroups.com
Subject: [mendedlittleheartsmembers] learning disabilities

 

Joshua (hlhs 8 years, Fontan 2006) was discharged from speech in June of this
year. He had really weird speech patterns that no one seemsed to be able to
explain, but now he is doing well with speech.

At the end of last school year, he failed his reading benchmark. He failed it
again this fall, so he will have access to a reading specialist. However, they
will not test him for a learning disability because he is not one grade level
behind.

Has anyone experienced this? What did you do?

Jodi Lemacks
Mom to Joshua hlhs 8, Nicholas 13, Jacob 15

#768

From: Siobhan Pawelczyk <shivvypaw@...>
Date: Tue Oct 18, 2011 12:38 am
Subject: Re: learning disabilities

shivvypaw

www.mendedlittlehearts.org

I would second the vision therapy route too. Joseph (age 6, HLHS and Stroke) has some field of vision loss due to his stroke. He was assessed by a vision therapist and she is just doing a quarterly consult for right now but feels that the further into school he gets he will need more vision therapy assistance due to more text on the page. I think it is hard for him to keep focused on where he is on the page. As has already been stated ophthalmologists do not like to hear about vision therapy. When I mentioned it to the ophthalmologist (Joseph has great vision away from the field of vision loss) he went off and started talking about dyslexia and other things. He gave me a great paper (wish I knew where it was now) about reading problems in children that were unrelated to dyslexia.

Hope you get some help for Joshua.

Siobhan

Siobhan Pawelczyk

Group Coordinator

Mended Little Hearts of Western New York

H:716.774.1310 C:716.440.0974

www.caringbridge.org/josephpawelczyk

On Oct 11, 2011, at 1:20 PM, "jodilemacks" <jlemacks@...> wrote:

Joshua (hlhs 8 years, Fontan 2006) was discharged from speech in June of this year. He had really weird speech patterns that no one seemsed to be able to explain, but now he is doing well with speech.

At the end of last school year, he failed his reading benchmark. He failed it again this fall, so he will have access to a reading specialist. However, they will not test him for a learning disability because he is not one grade level behind.

Has anyone experienced this? What did you do?

Jodi Lemacks
Mom to Joshua hlhs 8, Nicholas 13, Jacob 15

#769

From: Tiffany Viscussi <jpmstiff@...>
Date: Tue Oct 18, 2011 1:45 pm
Subject: Re: learning disabilities

jpmstiff

www.mendedlittlehearts.org

my son is 3 and a half and he has HLHS. Physically and mentally he is up to par and his Cardio is happy. I just introduced him to preschool part time. I'm not sure if hes just a silly 3 yr old or if he has attention or comprehension issues. What advice do you guys have for us to be aware and catch an issue before it becomes a problem? What early signs can we look for? Also i was told by someone at a CHD Conference that our heart kids might need an IEP or extended time or someother plan.. not sure. I'm open to great advice <3

Finally, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Philippians 4:8

From: Siobhan Pawelczyk <shivvypaw@...>
To: "mendedlittleheartsmembers@yahoogroups.com" <mendedlittleheartsmembers@yahoogroups.com>
Sent: Monday, October 17, 2011 8:38 PM
Subject: Re: [mendedlittleheartsmembers] learning disabilities

Hope you get some help for Joshua.

Siobhan

Siobhan Pawelczyk

Group Coordinator

Mended Little Hearts of Western New York

H:716.774.1310 C:716.440.0974

www.caringbridge.org/josephpawelczyk

On Oct 11, 2011, at 1:20 PM, "jodilemacks" <jlemacks@...> wrote:

Joshua (hlhs 8 years, Fontan 2006) was discharged from speech in June of this year. He had really weird speech patterns that no one seemsed to be able to explain, but now he is doing well with speech.

At the end of last school year, he failed his reading benchmark. He failed it again this fall, so he will have access to a reading specialist. However, they will not test him for a learning disability because he is not one grade level behind.

Has anyone experienced this? What did you do?

Jodi Lemacks
Mom to Joshua hlhs 8, Nicholas 13, Jacob 15

#770

From: Erin Taylor <henrytheblog@...>
Date: Wed Dec 21, 2011 10:40 pm
Subject: Article publication by PICU heart families

andreaatbeach

The Journal of Nursing Education is printing an article I co-authored entitled:�

Parent�Nursing Student Communication Practice: Role-Play and Learning Outcomes

http://www.slackjournals.com/oar.aspx?pubid=jne

Mark J. Fisher, MS, RN; Erin A. Taylor, PhD; Patricia L. High, JD

This article discusses the program where our CHD heart foundation lectures to our university nursing and medical students and engage them in role-playing...which can get pretty intense for them.�

For those of you with university library privileges, you should be able to access it online.� Who knew that a kazillion years in college and raising a heart kid would wind up with me even remotely qualified to be journal published in a health field.

I attached the pdf.�

#771

From: "lemonska" <fairiequeensweetpea@...>
Date: Fri Jan 27, 2012 9:08 pm
Subject: Proclamation for Florida

fairiequeens...

Hi Everyone, I wanted to share the news... Proclamation for the state of Florida
received.

Tanya Sanders