[tri-med] Re: tri-med Digest V8 #156

I was using the Pampers size 7 for my daughter until she grew out of them.  She 
is 41 pounds now and we ended up getting some diapers through a medical supply 
company.  They are Tena youth diapers, and she has the medical card and they 
are covered.  They work good for us.  

 

Julie mom to Camryn T18, 9 years old
 
> Date: Wed, 20 May 2009 13:47:58 -0400
> From: ecartis@xxxxxxxxxxxxx
> To: ecartis@xxxxxxxxxxxxx
> Subject: tri-med Digest V8 #156
> 
> tri-med Digest Wed, 20 May 2009 Volume: 08 Issue: 156
> 
> In This Issue:
> [tri-med] Re: (no subject)
> [tri-med] Re: video
> [tri-med] New arrival, Large size diapers
> [tri-med] Re: New arrival, Large size diapers
> [tri-med] Re: New arrival, Large size diapers
> [tri-med] Re: New arrival, Large size diapers
> [tri-med] Re: New arrival, Large size diapers
> [tri-med] Re: New arrival, Large size diapers
> [tri-med] Interesting Article Linking Chromosome 17 to Autis
> [tri-med] Re: (no subject)
> [tri-med] Re: New arrival, Large size diapers
> 
> ----------------------------------------------------------------------
> 
> From: "jwaite" <jwaite@xxxxxxxxxxxxx>
> Subject: [tri-med] Re: (no subject)
> Date: Wed, 20 May 2009 06:08:59 -0400
> 
> 
> ----- Original Message ----- 
> From: "DENISE DEVLIN" <denisedevlin@xxxxxxxxxxxxxx>
> I have already been to my nearest hospital and the main hospital in Belfast 
> but they both had the same attitude that their policy is to "let nature take 
> its course" as the doctors have all said there is no hope for my baby and it 
> is not their poliy to interveine which I am finding hard to accept.
> 
> {{{{Denise}}}}
> 
> There is always hope.
> 
> Unfortunately the medical profession works off of old and inaccurate 
> information on the rare trisomies. There's not much new and updated out 
> there for them.
> There is a group, TRIS, trying to put together info to help change that so 
> that doctors/med professionals have a more accurate view of our special 
> kids. Some of us here on these lists have actually helped by filling out 
> survey/info on our kids. They may be able to help hook you up with some info 
> for your doctor.
> http://web.coehs.siu.edu/Grants/TRIS/
> Other folks have suggested SOFT and that's a good way to go as well.
> 
> While it's not their policy to 'intervene, do they offer comfort care?
> If so, how far does their comfort care extend?
> 
> Are these hospital rules or drs rules?
> If you found a doctor who is more sympathetic to your wishes and willing to 
> be more proactive for your son, could they do that in a hospital setting?
> 
> Michelle mom to Alex (21, partial trisomy 14 mosaic) and Molly (18)
> MichiganUSA 
> 
> 
> ------------------------------
> 
> From: Sheila Helleson <hellesos@xxxxxx>
> Subject: [tri-med] Re: video
> Date: Wed, 20 May 2009 06:37:31 -0500
> 
> May,
> That was a very good video/website. Nicely done. Thank you very much.
> This topic has brought out lots more people that I have never met, 
> and I've been on the lists for about 8 years. Nice to have you here 
> for help.
> 
> On May 19, 2009, at 11:40 AM, Yin May Tham wrote:
> 
> Hi Denise,
> I'd like to share a blog by a mother who just went through a 
> pregnancy with
> T18. I believe her journey will help.
> 
> http://iseeloveblog.blogspot.com
> 
> Hugs,
> Sheila Helleson
> 
> Minnesota Grandma to:
> Hope (T-18 ^i^ 11-1-1) & Alison, AKA Ali (4 and a HALF!); Cadence,
> AKA Cade (8) and Bridge (5)
> Mom to Cheryl (& Denny); Wade (& Charity)
> Wife to Richard for a long time
> 
> "Shared joy is double joy, and shared sorrow is half-sorrow."--
> Swedish Proverb
> 
> Laughter and tears are the healing medicines of God.
> 
> 
> 
> 
> 
> 
> 
> ------------------------------
> 
> Date: Wed, 20 May 2009 04:55:34 -0700 (PDT)
> From: Mohammed Taha <abuhamzeh@xxxxxxx>
> Subject: [tri-med] New arrival, Large size diapers
> 
> Hi everyone,
> We have a new addition to our family, a healthy baby girl SAJA, born on May 
> 3rd. at 6lbs and 1 oz, 20-inches tall and very beautiful. We are very blessed 
> and grateful to have her. Mom and baby are doing just fine.
>  
> On a second note, My daughter Nejoud is now more than 35 pounds and the 
> largest size diaper #6 does not fit her any more. I need to get the large 
> size ones but no supermarket carry them. If your child uses the large ones 
> can you send me the link for the company that supply them to you? Is this 
> covered by insurance or Medicaid? Thank you all and God bless....
>  
> Mohammed (dad), Rana (mom), Hamzeh (Big brother), Nejoud (T-18 and big 
> sister, 3-yrs old) and Saja (New born)  
> 
> ------------------------------
> 
> From: Sheila Helleson <hellesos@xxxxxx>
> Subject: [tri-med] Re: New arrival, Large size diapers
> Date: Wed, 20 May 2009 07:09:26 -0500
> 
> Congratulations!!!
> I don't have any info on the diapers tho.
> 
> On May 20, 2009, at 6:55 AM, Mohammed Taha wrote:
> 
> Hi everyone,
> We have a new addition to our family, a healthy baby girl SAJA, born 
> on May 3rd. at 6lbs and 1 oz, 20-inches tall and very beautiful. We 
> are very blessed and grateful to have her. Mom and baby are doing 
> just fine.
> 
> On a second note, My daughter Nejoud is now more than 35 pounds and 
> the largest size diaper #6 does not fit her any more. I need to get 
> the large size ones but no supermarket carry them.
> 
> 
> 
> 
> Hugs,
> Sheila Helleson
> 
> Minnesota Grandma to:
> Hope (T-18 ^i^ 11-1-1) & Alison, AKA Ali (4 and a HALF!); Cadence,
> AKA Cade (8) and Bridge (5)
> Mom to Cheryl (& Denny); Wade (& Charity)
> Wife to Richard for a long time
> 
> "Shared joy is double joy, and shared sorrow is half-sorrow."--
> Swedish Proverb
> 
> Laughter and tears are the healing medicines of God.
> 
> 
> 
> 
> 
> 
> 
> ------------------------------
> 
> Date: Wed, 20 May 2009 05:11:34 -0700 (PDT)
> From: Wendi <wendijo24@xxxxxxxxx>
> Subject: [tri-med] Re: New arrival, Large size diapers
> 
> Congratulations on the new baby!  How wonderful!
>  
> We've been getting Jackson's diapers through Medicaid since he turned 4.  We 
> get them through the same medical supply company that brings his g-tube 
> supplies.
>  
> Wendi, mom to Jackson, trisomy 4p, inverted duplication, 4 years and Jameson, 
> 16 months
>  
> 
> --- On Wed, 5/20/09, Mohammed Taha <abuhamzeh@xxxxxxx> wrote:
> 
> 
> From: Mohammed Taha <abuhamzeh@xxxxxxx>
> Subject: [tri-med] New arrival, Large size diapers
> To: tri-med@xxxxxxxxxxxxx
> Date: Wednesday, May 20, 2009, 6:55 AM
> 
> 
> Hi everyone,
> We have a new addition to our family, a healthy baby girl SAJA, born on May 
> 3rd. at 6lbs and 1 oz, 20-inches tall and very beautiful. We are very blessed 
> and grateful to have her. Mom and baby are doing just fine.
>  
> On a second note, My daughter Nejoud is now more than 35 pounds and the 
> largest size diaper #6 does not fit her any more. I need to get the large 
> size ones but no supermarket carry them. If your child uses the large ones 
> can you send me the link for the company that supply them to you? Is this 
> covered by insurance or Medicaid? Thank you all and God bless....
>  
> Mohammed (dad), Rana (mom), Hamzeh (Big brother), Nejoud (T-18 and big 
> sister, 3-yrs old) and Saja (New born)  
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
> 
> 
> 
> 
> 
> ------------------------------
> 
> Date: Wed, 20 May 2009 12:16:48 +0000 (UTC)
> From: verheyen@xxxxxxxxxxx
> Subject: [tri-med] Re: New arrival, Large size diapers
> 
> 
> Well funny you should ask....Cody spent last week in the hospital and I 
> talked to one of the nurses about diapers.  In a few hours she had some 
> ordered and we love them.  So I was on a mission to get some but can not get 
> them in any store.  So on line I go....they should be here today or 
> tomorrow.  T 
> 
> 
> 
> They are ATTENDS diapers and here is the website 
> 
> 
> 
> http://www.attends.us/attendsWTB/where.aspx 
> 
> 
> â?¢ These briefs are made for smaller, petite individuals or adolescents 
> â?¢ Packaged in discreet cases 
> 
> Size (hips) Catalog Number Case Count Inner Packaging 
> Youth (20'-28") BRCL1000 96 96/bulk 
> 
> They are latex free and super absorbant.  I am so excited....as of right now 
> our insurance does not cover them.  But I would look into it maybe yours 
> will.  Good luck and congratulations on your beautiful little Saja.  You 
> are very blessed!!! 
> 
> 
> 
> Tracy mom to Cody (Trisomy 9p) 
> 
> 
> ----- Original Message ----- 
> From: "Mohammed Taha" <abuhamzeh@xxxxxxx> 
> To: tri-med@xxxxxxxxxxxxx 
> Sent: Wednesday, May 20, 2009 7:55:34 AM GMT -05:00 US/Canada Eastern 
> Subject: [tri-med] New arrival, Large size diapers 
> 
> Hi everyone, 
> We have a new addition to our family, a healthy baby girl SAJA, born on May 
> 3rd. at 6lbs and 1 oz, 20-inches tall and very beautiful. We are very blessed 
> and grateful�to have her. Mom and baby are doing just fine. 
> � 
> On a second note, My daughter Nejoud is now more�than 35 pounds and the 
> largest size diaper #6 does not fit her any more. I need to get the large 
> size ones but no supermarket carry them. If your child uses the large ones 
> can you send me the link for the company that supply them to you? Is this 
> covered by insurance or Medicaid? Thank you all and God bless.... 
> � 
> Mohammed (dad), Rana (mom), Hamzeh (Big brother), Nejoud (T-18 and big 
> sister, 3-yrs old) and Saja (New born) � 
> Â Â  Â  Â  Â  Â  Â  Â  Â  Â Building ___ooOOoo__ Rainbows 
> Â Â  Â  Â  Â  Â  Â  Â  Â  Â  Â  Â  www.trisomyonline.org 
> Â Â  Â  Â  Â  Â  Â  Â  Â  Â Families Helping Families On-line 
> 
> 
> 
> ------------------------------
> 
> Date: Wed, 20 May 2009 06:07:16 -0700 (PDT)
> From: Nanci Grimes <nancii@xxxxxxxxxx>
> Subject: [tri-med] Re: New arrival, Large size diapers
> 
> We use "select" brand diapers with come in youth sizes - we ordered them from 
> Arctic Originals until Soleah got the waiver which now pays for them.  She 
> wears a youth small but had been in youth x-small which is a move up from 
> toddler sizes.  I really like them.
> --- On Wed, 5/20/09, Mohammed Taha <abuhamzeh@xxxxxxx> wrote:
> From: Mohammed Taha <abuhamzeh@xxxxxxx>
> Subject: [tri-med] New arrival, Large size diapers
> To: tri-med@xxxxxxxxxxxxx
> Date: Wednesday, May 20, 2009, 6:55 AM
> 
> Hi everyone,
> We have a new addition to our family, a healthy baby girl SAJA, born on May
> 3rd. at 6lbs and 1 oz, 20-inches tall and very beautiful. We are very blessed
> and grateful to have her. Mom and baby are doing just fine.
>  
> On a second note, My daughter Nejoud is now more than 35 pounds and the
> largest size diaper #6 does not fit her any more. I need to get the large size
> ones but no supermarket carry them. If your child uses the large ones can you
> send me the link for the company that supply them to you? Is this covered by
> insurance or Medicaid? Thank you all and God bless....
>  
> Mohammed (dad), Rana (mom), Hamzeh (Big brother), Nejoud (T-18 and big sister,
> 3-yrs old) and Saja (New born)  
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families On-line
> 
> 
> 
> ------------------------------
> 
> Date: Wed, 20 May 2009 06:08:27 -0700 (PDT)
> From: Nanci Grimes <nancii@xxxxxxxxxx>
> Subject: [tri-med] Re: New arrival, Large size diapers
> 
> So sorry  . . . congrats on the new baby!!!  Having a sibling after Soleah 
> was the best thing ever for us and her!
> --- On Wed, 5/20/09, Mohammed Taha <abuhamzeh@xxxxxxx> wrote:
> From: Mohammed Taha <abuhamzeh@xxxxxxx>
> Subject: [tri-med] New arrival, Large size diapers
> To: tri-med@xxxxxxxxxxxxx
> Date: Wednesday, May 20, 2009, 6:55 AM
> 
> Hi everyone,
> We have a new addition to our family, a healthy baby girl SAJA, born on May
> 3rd. at 6lbs and 1 oz, 20-inches tall and very beautiful. We are very blessed
> and grateful to have her. Mom and baby are doing just fine.
>  
> On a second note, My daughter Nejoud is now more than 35 pounds and the
> largest size diaper #6 does not fit her any more. I need to get the large size
> ones but no supermarket carry them. If your child uses the large ones can you
> send me the link for the company that supply them to you? Is this covered by
> insurance or Medicaid? Thank you all and God bless....
>  
> Mohammed (dad), Rana (mom), Hamzeh (Big brother), Nejoud (T-18 and big sister,
> 3-yrs old) and Saja (New born)  
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families On-line
> 
> 
> 
> ------------------------------
> 
> Date: Wed, 20 May 2009 08:40:07 -0700 (PDT)
> From: Nanci Grimes <nancii@xxxxxxxxxx>
> Subject: [tri-med] Interesting Article Linking Chromosome 17 to Autism
> 
> http://news.yahoo.com/s/time/20090520/hl_time/08599189975600
> 
> ------------------------------
> 
> Date: Wed, 20 May 2009 08:51:07 -0700 (PDT)
> From: Kathleen Hards <kathleen.hards@xxxxxxxxxxxxx>
> Subject: [tri-med] Re: (no subject)
> 
> Denise:
> My heart goes out to you.  Really.  I just completed a battle with 
> non-compassionate doctors myself, so I think I can feel some of your pain.  
> I'd like to share my story with you, and hope I can offer you whatever peace 
> I can.
> 
> Our baby girl was diagnoses with T18 when I was about 24 weeks pregnant, and 
> even though I had made the decision to carry to term, they repeatedly urged 
> me to terminate the pregnancy.  Even though I had made my wishes clear, I 
> feel like they were disappointed and from that point on, I feel as if they 
> wanted to wash their hands of the whole thing.  They wouldn't answer my 
> questions, and kept telling me to ask the other doctor.  He would tell me the 
> same thing.  As time went by, I talked to everyone I could possibly think of. 
>  My genetic counselor was not giving me the answers I wanted, and the 
> perinatologist sonographer was not answering any of my questions either.  I 
> was getting the run around from the beginning, and I was furious.   Isn't it 
> my right as a patient, as a mother, to know exactly what is going on?  If I 
> didn't ask the question, they wouldn't tell me.  They were monitoring my 
> blood pressure and amniotic fluid levels, but they
> wouldn't tell me what they were unless I asked.  At one point, the levels 
> were so high, my OB freaked out and decided that maybe she should start 
> reading the progress reports.  She didn't have a clue, and as a the patient, 
> I wound up catching a lot of the problems and high risk factors.  Funny, that 
> the doctors weren't catching that.  I finally made the decision that the one 
> thing I could have control over, was my knowledge and education.  I started 
> researching T18 and other doctors in the surrounding area that could possibly 
> help me.  For starters, I found a genetic doctor who actually took the time 
> to explain to me exactly what T18 is, and what kind we were dealing with.  
> Come to find out, we had full T18, and it was not something I could 
> genetically pass on to my other children.  What a relief, but I wondered why 
> the first set of doctors didn't explain this.  Nobody told me there were 
> different kinds (full, partial, mosaic) and I wanted to
> know what we were dealing with.  Then, I decided to get a second opinion from 
> another perinatologist.  He told me things about our baby girl that the first 
> doctors refused to discuss with us.  The more I followed down the road of 
> finding new doctors, the more I learned and began to understand what we were 
> facing and the severity of our particular problem.  Although my new doctors 
> told me that the possibility of our baby girl living and having a chance at 
> life was grim, at least they took the time to explain things thoroughly, and 
> gave us a really good picture of best case and worse case scenario.  Although 
> the new doctors couldn't guarantee anything, they did explain to me what 
> might be able to be done if she were to be born alive and breathing.
> 
> Our baby girl had a diaphragmatic hernia as well, along with a heart defect 
> that is pretty common in trisomy babies.  First we were told that it was on 
> the left side, and that it could be fixed, but that no surgeon would touch 
> her because of her T18 diagnosis.  That infuriated me.  No one was willing to 
> give her a chance?  I spent weeks tracking down doctors who performed this 
> surgery.  I researched for weeks, trying to find a doctor that would help us. 
>  Finally, I found a neonatologist at a different hospital who would look over 
> my records and give me her opinion.  Come to find out, the hernia was on the 
> right side, and was worse than originally thought.  She did explain to me how 
> they treat and operate on "healthy" children who are born with this defect.  
> She  explained to me that there would be a lot of factors that came into play 
> before they could even operate, such as the baby's size and weight.  Certain 
> things had to be in order if the
> baby were to have surgery and survive.  At this point, I felt a little 
> better, that at least someone was giving me a full explanation.  
> 
> In the end, we switched doctors and our delivering hospital.  I delivered 
> next door to a children's hospital that had better specialists and surgeons 
> that could possibly help our daughter should she be born alive and breathing. 
>  I also got the hospital neonatologist to promise me a full exam once our 
> baby girl was physically here, not just rely on what the sonogram was telling 
> us.  (The previous doctor had promised us a warm blanket and a box of 
> tissues, stating that an exam would not be necessary or conducted.)  By this 
> time, we had explored all our options, including comfort care.  We talked 
> about warmth, nutrition, pain meds, the pros and cons to a ventilator, 
> possible surgical options, etc.  I had no idea what was to come next, but I 
> thought that at least we were surrounded by people who cared enough to look 
> at me as a human, a pregnant mother who still had to go through the delivery 
> process and still had to recover and continue
> on living.  I was still a person, with a living baby in my belly, and NO BODY 
> could guarantee me how this would come out in the end.  I wanted to be 
> surrounded by caring people who still saw me for me, not just a diagnosis. In 
> a potentially negative situation, I wanted to be surrounded by the most 
> positive people I could find.
> 
> YOU are your baby's best advocate.  Only YOU can fight for your baby, to love 
> him and protect him in whatever way you can find.  My answer to process and 
> cope with this was to keep trying and keep asking until I found out the 
> answers.  
> 
> At this point, I turned everything over to God.  I know we are supposed to be 
> careful about religious emotions here, and probably technically not supposed 
> to use this word, but I am just telling you my story, not preaching it.  I 
> came to a point where I felt like I did everything humanly possible to hep my 
> baby girl, and I would just have to wait until she was actually physically 
> here, before we could assess her condition and take it from there.  I knew I 
> had surrounded myself with better caring doctors, and I felt like there were 
> more positive people surrounding me in a time of uncertainty and fear.  I 
> don't think I could have done any better.
> 
> In the end, however, Bethany Kate passed away in utero at 35 weeks.  It just 
> wasn't her time, and my decision was made for me.  That's a whole other story 
> in itself, but I feel like my journey was one of hope and knowledge.  I NEVER 
> gave up on my baby, struggling every step of the way to try and find care for 
> her.  At least in my situation, there was nothing they could do for her in 
> utero.  We had to wait until she was born.  I fought for her through the end, 
> did everything humanly possible, and I can honestly look back with no 
> regrets.  I can understand your fear and frustration, and my heart truly does 
> go out to you.  If you should ever want to talk, I'd be more than happy to.  
> There are a lot of great people on this forum, and I gained a lot of strength 
> and support from these people, which is what actually got me through my 
> journey.  Although it wasn't meant to be in my case, I never gave up hope, 
> because there are children who live and
> survive this diagnosis.  Each child is different, each with their own 
> problems and severity.  Each child needs to be treated on an individual 
> basis, and I think most of the parents here will agree with me on that 
> statement.  Miracles do happen and there are children who defy all odds.  
> 
> I know it can be a struggle, but don't give up.  This is your baby, and I 
> know you already love him like only a mother could.  
> 
> Big hugs,
> 
> Kathleen
> 
> 
> 
> 
> ________________________________
> From: DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx>
> To: Tri-Med@xxxxxxxxxxxxx
> Sent: Tuesday, May 19, 2009 4:09:35 AM
> Subject: (no subject)
> 
> My unborn son has been diagnosed with trisomy 18 and a congenital 
> diaphragmatic hernia and I have been told nothing can be done, he will not be 
> incubated to keep him alive and there is no hope. I can find no details of 
> similar cases and wondered if anyone could give me any information. 
> Many Thanks
> Denise 
>                   Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                   Families Helping Families On-line
> 
> ------------------------------
> 
> Date: Wed, 20 May 2009 12:47:49 -0500
> Subject: [tri-med] Re: New arrival, Large size diapers
> From: Katie Cragg <kmcragg@xxxxxxxxxxxx>
> 
> Congratulations!! 
> 
> Diapers-we are starting to use Pampers cruisers size 7. You can buy them on
> a number of sites-I just bought them on diapers.com
> They are a little bigger than the 6s, but they are more flexable. They
> should fit for a little longer than 6s.
> Katie 
> 
> 
> 
> On 5/20/09 6:55 AM, "Mohammed Taha" <abuhamzeh@xxxxxxx> wrote:
> 
> > Hi everyone,
> > We have a new addition to our family, a healthy baby girl SAJA, born on May
> > 3rd. at 6lbs and 1 oz, 20-inches tall and very beautiful. We are very 
> > blessed
> > and grateful to have her. Mom and baby are doing just fine.
> >  
> > On a second note, My daughter Nejoud is now more than 35 pounds and the
> > largest size diaper #6 does not fit her any more. I need to get the large 
> > size
> > ones but no supermarket carry them. If your child uses the large ones can 
> > you
> > send me the link for the company that supply them to you? Is this covered by
> > insurance or Medicaid? Thank you all and God bless....
> >  
> > Mohammed (dad), Rana (mom), Hamzeh (Big brother), Nejoud (T-18 and big 
> > sister,
> > 3-yrs old) and Saja (New born)  
> > Building ___ooOOoo__ Rainbows
> > www.trisomyonline.org
> > Families Helping Families On-line
> > 
> 
> 
> 
> ------------------------------
> 
> End of tri-med Digest V8 #156
> *****************************
> 

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                       www.trisomyonline.org
                  Families Helping Families On-line

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