Infantreflux.org | Carter’s Possible diagnosis

This topic has 85 replies, 1 voice, and was last updated 19 years, 2 months ago by Anonymous.

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June 6, 2007 at 8:05 pm #35809

Anonymous
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Ann Marie, I can’t even begin to imagine how you and your family are feeling right now. I will keep you in my thoughts and prayers.

June 6, 2007 at 8:23 pm #35812

Anonymous
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Thanks Kim.. It’s feels so funny that we were all pregnant a year ago together, and now this….

Hope the girls are doing well….

And Happy Belated Birthday to Alexandera!!!!

Ann Marie

monty1232007-6-6 20:24:8

June 6, 2007 at 9:18 pm #35826

Anonymous
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Ann Marie, I’m so so sorry to hear about this, and I will pray for you and your family. I can’t even begin to imagine what you must be feeling right now, but I am sending prayers and hugs your way.

June 6, 2007 at 9:34 pm #35831

Anonymous
Inactive

Ann Marie

I am so sorry to hear about this… I will be praying for strength and a false negative… i am crying for you too… I don;t have too many words right now. Just wanted to let you know that I am here if you want to PM me/talk to me…. we just got a diagnosis/prognosis for Matthew;s issues (and i am in NO WAY comparing) but i went through a phase of crying, guilt, acceptance etc… so if you need a shoulder, i am right here HUGS

June 6, 2007 at 9:39 pm #35834

Anonymous
Inactive

Oh, Ann Marie, I have tears and a horrible feeling in my stomach. To love and nurture our children and then to think they won’t be with us until we are old is a hard thing to swallow. I will keep your family in my prayers. Seven weeks is a very long time to wait. I like your positive thinking – that there are different severities – and we don’t even know if that is exactly what he has. Ann Marie, enjoy the summer with your boys and we will find out in 7 weeks and take it one day at a time then. Big hugs to you. Tears are ok. Big hugs to you.

June 7, 2007 at 5:59 am #35849

Anonymous
Inactive

Ann Marie, I am so sorry that you and your family are going through this incredibly heartwrenching and difficult time. We are here everytime you need us.

June 7, 2007 at 6:42 am #35852

Anonymous
Inactive

Thank you Naomi, Thais, Brenda, and Therese. All well wishes are appreciated. I got up with Carter this morning, and I feel so awful that when I look at him I start to cry. I know he can’t see me like that…..

I need to figure out how to deal and still be here for him……

June 7, 2007 at 7:19 am #35853

hellbennt
Keymaster

Ann Marie, I’m tearing up along with everyone…

I asked another mom on TBW who’s baby has (an entirey different) enzyme disorder & she asked me if you have been in touch with NORD? I have absolutely no idea what that means…

June 7, 2007 at 7:47 am #35855

Anonymous
Inactive

Thanks Laura. It is the National Organization of Rare Diseases. I have not contacted them yet as we are waiting on confirmation that this is really it. I did contact the MPS Society in Maine and in speaking with them, they agree Carter’s symptoms are probably not coincidental.

Here is a link if anyone is interested. We think it is MPS I, so click on that link and the brochure is attached.

http://www.mpssociety.org/content/4064/MPS__ML_Booklets/

The girl on page 8, Edith, could be Carter’s twin. He looks just like her…

Thank you, again, everyone! It is awful, but I have posted it here and not even told any friends or many family yet. I think I want confirmation first. Everyone in my non cyber life “means” well, but we all know how that goes……

monty1232007-6-7 7:49:4

June 7, 2007 at 9:07 am #35860

Anonymous
Inactive

!!!! I am praying that the results are false and that this is not the case. I will be praying for you until we hear the results.

June 7, 2007 at 9:09 am #35861

Anonymous
Inactive

Ann Marie,

I just saw this post. My heart is breaking for you and your family. I pray this is a false positive, but I know whatever the results are, you will find strength from within and of course we will all be here for you! Sending you prayers and hugs!!!!

June 7, 2007 at 9:14 am #35862

Anonymous
Inactive

Ann Marie, I don’t know what to say either but please know that your family will be in my daily prayers and that we are all here for you.

June 7, 2007 at 9:27 am #35863

Anonymous
Inactive

Ann Marie,

I’m in tears for you! Please know we are all thinking of you and praying for the best outcome! As for MIL and thinking nothing of it, I experienced this too with my MIL, (a much different situation) she though all of my trips to the doc with Owen were unwarrented and made sure I knew it!

It brought me down even more! You need to surround yourself with people who will support you 100%! People who will listen to you go on and on even if it is about the same thing over and over!

We are here for you and praying for the best!

June 7, 2007 at 11:54 am #35879

Anonymous
Inactive

Ann Marie:

Just to let you know that I am thinking of you guys and praying for you each day. God will give you the strength to get through this – you are an amazing person and Mom. Praying for strength for you and a false positive test result. I just don’t have the words that I want to say. We are all here for you!!

Robin

June 7, 2007 at 1:35 pm #35900

Anonymous
Inactive

Thank you, ladies! I love the support here!

I showed the information to our Birth to three person this morning and she had tears in her eyes as she saw Carter in them as well….. I was hoping she would prove me wrong…..
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