[tri-med] Re: Help needed & a longer than expected response to our little guy

Janina,

Thank you for this latest post about Anthony. I have felt in my heart 
and known from the beginning of Tess's life that she was here to 
teach us all something. There is something profoundly moving about 
our kids, as your email illustrates. I've seen the same thing in 
action in Tess's early days, when eg: a group of medical students 
came around to see Tess, and when she (in response to her Mum saying 
"stand up", and holding under her arms,) she helped herself rise, 
bore her weight and smiled, the 3 three female students all clapped 
and laughed. We too were given the  "take her home to die", but here 
she is 9 years old. Never give up on him, unless you are sure it is 
what he wants and is best for him. It is unbearable to think of any 
of our kids suffering. I think about him a lot, and pray for his 
comfort, one way or the other.

At 01:50 AM 1/07/2006, you wrote:
>Hi Laurie,
>
>Yes, Shannon e-mailed me to let me know she is tying to adopt Chloe and
>I wrote her back.  It does seem that Chloe (t9 mosaic) has almost the
>identical growth issues and eating schedule (including amounts and
>frequencies) as our Anthony (t13).  It's tough for me to see how our
>path is almost the same and see where we are now.  I hope she calls me
>today ... I really feel a need to listen to her.
>
>Regarding your comments about sepsis - Little Anthony had cultures drawn
>when he spiked the fever and antibiotics started immediately, like
>Kayla.  But the cultures came back to confirm Gram Negative Sepsis.  We
>were hoping this was just an exercise in caution but Gram Negative
>Cultures are not a good sign.
>
>That said, he doesn't look like a child with Sepsis.  Several of his
>doctors have said the same.  He actually looks like he is managing it
>well which is getting the medical community all choked up.  He is
>peaceful and calm and many of his docs, while examining him, spend 20+/-
>minutes with him in silence - in awe - speechless.  I sit and ponder
>what they are feeling but I try not to interrupt their 'moment'.  I can
>see their emotions tugging them and they try to stay well composed.  HE
>is working on them too.  I spoke to his infectious disease specialist
>last night and we had a very interesting personal conversation (for an
>hour and a half).  She confessed a personal moment with him and said I
>probably thought she was crazy for thinking these things.  Little did
>she know I have seen what she is talking about with Anthony's other
>doctors.  I can see how Anthony is doing Gods work and is working on the
>hearts of the medical community.  He gets them to an emotional place
>where they cannot deny their life questions and are faced to cope with
>there own personal feelings outside of medicine.  IT is truly a
>spiritual experience.
>
>I'll let you guys know more as I learn more.  Right now the medical
>literature on Gram Negative appears to be as dreary as the medical
>literature on T13.  So I guess I'm not surprised.  HE looks great though
>but he did have another respiratory arrest last night.  It lasted 4-5
>minutes and he had one gasp at 2 minutes but the nurses were all
>thinking he had passed then at 4.5 minutes, his respiratory rate went
>from 0 to 12 and then up.  His heart rate had dropped to 48 during the
>incident but went back up to 140 after about 4 minutes ... His alertness
>went from unconscious to being awake and looking around.  I think he got
>their attention just after their shift change!
>
>Am I numb to this now?  He is simply a miracle child surviving to pull
>all the heart strings of his caregivers (me not being the least of
>them).  He has the most beautiful smile and knows exactly when to flash
>one.  Just as I see how apparent the situation can get and I feel I am
>finally coping with his death - he does so much better medically and
>turns around - then when I re-adjust to focus on getting well - he goes
>into arrest again - then when he comes out, he smiles as if to say,
>"it's OK mom, God is holding my hand" and am humbled by what this little
>guy is enduring.  How can I be mad?  I'm not, I just want to be with him
>while he goes through this.  This is where I just need TO BE.  TO BE A
>HUMAN that is BEING a HUMAN BEING!
>
>OK Back to the purpose of this post:  I hope that all goes well with
>Shannon and her invitation to bring bio mom to visit her home for a
>smooth transition for adoption.  I pray all things go smoothly and once
>again, if I can help, I am available.  Sorry for taking so much paper to
>talk about little Anthony.  My heart pours out love and good things for
>Shannon and her family taking on the responsibility of this littlest
>Chloe.  Shannon proves blessings come to others through those willing to
>step up and say 'yes'.
>
>With warmest Love,
>
>Janina Arritola
>http://gregoryarritola.tripod.com
>
>-----Original Message-----
>From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
>On Behalf Of TRIER9@xxxxxxx
>Sent: Friday, June 30, 2006 10:40 AM
>To: tri-med@xxxxxxxxxxxxx
>Subject: [tri-med] Re: Help needed
>
>Hi Janina!
>Hope little Anthony had a good night. How is his fever now?  When the
>doctors
>suspected sepsis with Kayla, she was treated with  antibiotics before
>they
>got the results back. Then found out she didn't have it.  Hope this is
>the same
>with sweet Anthony!
>
>Shannon (the nurse that is bringing baby home of her days off), is going
>to
>email you. She is working 12 hr shifts right now....but is going to be
>bringing  the baby home again over the 4th weekend! She is going to
>invite bio Mom
>over as  well. With all the info everyone has sent, I think she is more
>confident!! YES!!  This list is great for advise!
>
>Kisses to Anthony,
>
>
>Take Care
>Laurie
>Mom to Brianna w/t9, Brandon, Marissa and Kayla  too
>
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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