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Aiden update.. Posted Pictures! Must end the Aiden thread. Aiden is doing excellent. THANK YOU COTH!!! (137) 1/23

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  • Aiden update.. Posted Pictures! Must end the Aiden thread. Aiden is doing excellent. THANK YOU COTH!!! (137) 1/23

    Today, Tuesday, Jennifer, Joey and I will be traveling to Georgia. Jennifer's testing for living donor is scheduled for tomorrow and Thursday. Her first test is the CT scan. This test will be the one that determines size. As we all remember no one has made it past this test. Through out this process there are many disqualifying steps and procedures. We ask for you to pray for us as we travel, and for Jennifer while she undergoes the living donor work up.

    Late yesterday we had our first bit of good news that we have had honestly since Aiden was born. Unfortunately on Friday the UNOS (united network of organ sharing) replied with a denial to our apeal to put Aiden at the top of the list. We were devested. I mean ablsoutley crushed. This meant that Aiden had lost his hope to get an organ. His only hope was to get a living donor match. You see the board has a maximum of 21 days to reply to an appeal. If the board cannot make a decision during that time, then the points requested automatically are applied. Last Thursday was the end to the 21 days. On FRIDAY we received a note that Aiden was denied.

    Everyone was shocked and angry. The transplant team, and our transplant manager worked to fight this ruling. Immediately Aiden went to the hospital for lab work. They wrote a grievance about the delay on the reply. We were looking at another 21 days to hear anything.

    As a wonderful and beautiful Christmas gift, the UNOS board gave Aiden the 40 after acknowledging hat they did indeed take longer than their 21 days. Automatically Aiden received his 40 PELD score! The 40 is only temporary. Another board at UNOS has been sent the request. They have the power to deny or keep the number given to us. Please pray that Aiden continues at the top of the list. And during this time we receive the call for a liver while he is at the top.

    We know that God sent us this set back, to remind us that what we face will not be easy sailing. We have been floating on fumes thinking that once we just get his liver we will all be okay. Well, it is time to recharge. We have a long road ahead of us. Aiden must be able to not only get the liver, but survive and recover. With help from you, prayers, and strength, we will overcome these obstacles.

    We are leaving this morning to head to Atlanta. Please pray for Jennifer, and us while we travel. Pray that Aiden stay strong. We had to print out hospitals that are on the way to ATlanta in case of another bleed.

    We also wanted to thank everyone for the support. I did get an oppertunity to get online last week and see everyone stand by us. It helped so much. We are very lucky to have friends like you. Thank you for the amazing auction. We are blown away by the giving and selflessness.

    I will have someone update for us. PLease keep checking in! XOXOXO

    ~~Lisa~~
    Save a life, be an organ donor

    [This message was edited by Weatherford on Dec. 31, 2002 at 12:59 PM.]

    [This message was edited by RolexH on Dec. 31, 2002 at 02:40 PM.]

    [This message was edited by RolexH on Dec. 31, 2002 at 11:23 PM.]

    [This message was edited by RolexH on Jan. 01, 2003 at 08:16 PM.]

    [This message was edited by RolexH on Jan. 02, 2003 at 01:03 PM.]

    [This message was edited by RolexH on Jan. 02, 2003 at 04:50 PM.]

    [This message was edited by RolexH on Jan. 03, 2003 at 10:38 AM.]

    [This message was edited by RolexH on Jan. 03, 2003 at 01:54 PM.]

    [This message was edited by RolexH on Jan. 03, 2003 at 11:51 PM.]

    [This message was edited by RolexH on Jan. 05, 2003 at 05:58 PM.]

    [This message was edited by RolexH on Jan. 06, 2003 at 12:47 PM.]

    [This message was edited by RolexH on Jan. 06, 2003 at 09:27 PM.]

    [This message was edited by RolexH on Jan. 07, 2003 at 09:55 PM.]

    [This message was edited by RolexH on Jan. 08, 2003 at 07:21 PM.]

    [This message was edited by RolexH on Jan. 12, 2003 at 04:50 PM.]

    [This message was edited by RolexH on Jan. 13, 2003 at 11:12 AM.]

    [This message was edited by RolexH on Jan. 14, 2003 at 06:08 PM.]

    [This message was edited by RolexH on Jan. 15, 2003 at 11:34 AM.]

    [This message was edited by RolexH on Jan. 16, 2003 at 01:24 PM.]

    [This message was edited by RolexH on Jan. 18, 2003 at 02:36 PM.]

    [This message was edited by RolexH on Jan. 22, 2003 at 11:39 AM.]

    [This message was edited by RolexH on Jan. 23, 2003 at 12:09 AM.]
    ~~Lisa~~

    www.caringbridge.org/fl/aiden
  • Original Poster

    #2
    Today, Tuesday, Jennifer, Joey and I will be traveling to Georgia. Jennifer's testing for living donor is scheduled for tomorrow and Thursday. Her first test is the CT scan. This test will be the one that determines size. As we all remember no one has made it past this test. Through out this process there are many disqualifying steps and procedures. We ask for you to pray for us as we travel, and for Jennifer while she undergoes the living donor work up.

    Late yesterday we had our first bit of good news that we have had honestly since Aiden was born. Unfortunately on Friday the UNOS (united network of organ sharing) replied with a denial to our apeal to put Aiden at the top of the list. We were devested. I mean ablsoutley crushed. This meant that Aiden had lost his hope to get an organ. His only hope was to get a living donor match. You see the board has a maximum of 21 days to reply to an appeal. If the board cannot make a decision during that time, then the points requested automatically are applied. Last Thursday was the end to the 21 days. On FRIDAY we received a note that Aiden was denied.

    Everyone was shocked and angry. The transplant team, and our transplant manager worked to fight this ruling. Immediately Aiden went to the hospital for lab work. They wrote a grievance about the delay on the reply. We were looking at another 21 days to hear anything.

    As a wonderful and beautiful Christmas gift, the UNOS board gave Aiden the 40 after acknowledging hat they did indeed take longer than their 21 days. Automatically Aiden received his 40 PELD score! The 40 is only temporary. Another board at UNOS has been sent the request. They have the power to deny or keep the number given to us. Please pray that Aiden continues at the top of the list. And during this time we receive the call for a liver while he is at the top.

    We know that God sent us this set back, to remind us that what we face will not be easy sailing. We have been floating on fumes thinking that once we just get his liver we will all be okay. Well, it is time to recharge. We have a long road ahead of us. Aiden must be able to not only get the liver, but survive and recover. With help from you, prayers, and strength, we will overcome these obstacles.

    We are leaving this morning to head to Atlanta. Please pray for Jennifer, and us while we travel. Pray that Aiden stay strong. We had to print out hospitals that are on the way to ATlanta in case of another bleed.

    We also wanted to thank everyone for the support. I did get an oppertunity to get online last week and see everyone stand by us. It helped so much. We are very lucky to have friends like you. Thank you for the amazing auction. We are blown away by the giving and selflessness.

    I will have someone update for us. PLease keep checking in! XOXOXO

    ~~Lisa~~
    Save a life, be an organ donor

    [This message was edited by Weatherford on Dec. 31, 2002 at 12:59 PM.]

    [This message was edited by RolexH on Dec. 31, 2002 at 02:40 PM.]

    [This message was edited by RolexH on Dec. 31, 2002 at 11:23 PM.]

    [This message was edited by RolexH on Jan. 01, 2003 at 08:16 PM.]

    [This message was edited by RolexH on Jan. 02, 2003 at 01:03 PM.]

    [This message was edited by RolexH on Jan. 02, 2003 at 04:50 PM.]

    [This message was edited by RolexH on Jan. 03, 2003 at 10:38 AM.]

    [This message was edited by RolexH on Jan. 03, 2003 at 01:54 PM.]

    [This message was edited by RolexH on Jan. 03, 2003 at 11:51 PM.]

    [This message was edited by RolexH on Jan. 05, 2003 at 05:58 PM.]

    [This message was edited by RolexH on Jan. 06, 2003 at 12:47 PM.]

    [This message was edited by RolexH on Jan. 06, 2003 at 09:27 PM.]

    [This message was edited by RolexH on Jan. 07, 2003 at 09:55 PM.]

    [This message was edited by RolexH on Jan. 08, 2003 at 07:21 PM.]

    [This message was edited by RolexH on Jan. 12, 2003 at 04:50 PM.]

    [This message was edited by RolexH on Jan. 13, 2003 at 11:12 AM.]

    [This message was edited by RolexH on Jan. 14, 2003 at 06:08 PM.]

    [This message was edited by RolexH on Jan. 15, 2003 at 11:34 AM.]

    [This message was edited by RolexH on Jan. 16, 2003 at 01:24 PM.]

    [This message was edited by RolexH on Jan. 18, 2003 at 02:36 PM.]

    [This message was edited by RolexH on Jan. 22, 2003 at 11:39 AM.]

    [This message was edited by RolexH on Jan. 23, 2003 at 12:09 AM.]
    ~~Lisa~~

    www.caringbridge.org/fl/aiden

    Comment


    • #3
      Lots of hope and Prayers coming your way!

      BarbaraG
      Great Warrior Volunteer [img]/infopop/emoticons/icon_biggrin.gif[/img]

      Comment


      • #4
        Hopes and prayers for even better news, and will be sending *vibes* to help you re-charge!

        Thanks for the update Lisa - you know how we all feel. [img]/infopop/emoticons/icon_smile.gif[/img]

        Comment


        • #5
          Everything I have that is crossable is crossed for you guys. Hopes and prayers are with you too.

          "Lord, make me sober . . . but not yet."
          -St. Augustine (sort of)

          Member: We Loffed Willem First Clique
          ___________________________
          Age is a very high price to pay for maturity.

          Comment


          • #6
            and surely this Season of Miracles will be one for your family.

            ~Kryswyn~
            "Always look on the bright side of life, de doo, de doo de doo de doo"
            ~Kryswyn~ Always look on the bright side of life, de doo, de doo de doo de doo
            Check out my Kryswyn JRTs on Facebook

            "Life is merrier with a terrier!"

            Comment


            • #7
              Prayers that everything works out and <<<HUGS>>> for you all!

              Comment


              • #8
                & special COTH jingles for you all.

                God speed.

                (And thank you for the update).

                Comment


                • #9
                  I'm keeping my fingers crossed that everything works out in Atlanta. Have a safe trip and keep us updated when you can! [img]/infopop/emoticons/icon_smile.gif[/img]

                  Comment


                  • #10
                    I'll be praying and jingling curb chains for all of you. Good luck in Atlanta!

                    .:Erin B #2:.
                    ********************
                    How's he gonna read that magazine rolled up like that? What the ... - a fly.
                    -Erin B-
                    ********************
                    \"I am fairly agile, I can bend and not break. Or I can break and take it with a smile. I am so resilient. I recover quickly. I\'ll convince you soon that I am fine.\" (\'Bend and Not Break\', DC)

                    Comment


                    • #11
                      [img]/infopop/emoticons/icon_biggrin.gif[/img]

                      If the grass is greener on the other side of the fence, you can bet they don't have horses...
                      If the grass is greener on the other side of the fence, you can bet they don\'t have horses...

                      Comment


                      • #12
                        Best of everything to all of you.

                        Member of the Baby Greenie Support Group
                        Finally down to a manageable number!

                        Comment


                        • #13
                          In our thoughts and prayers everyday.

                          JINGLE * JINGLE * JINGLE

                          It's all in the details!!
                          It's all in the details!!

                          Comment


                          • #14
                            Good luck to Jennifer - and stay strong, Hawk family. Jingling and thinking of you all!
                            "These are my principles. If you do not like them, I have others." --Groucho Marx

                            Comment


                            • #15
                              and hopeful. You are in my thoughts daily, and will be praying that the tests go well for Jennifer. All our best from here...jingle jingle!

                              Don't misunderestimate me. I am a pitbull on the pantleg of opportunity.
                              Ellipses users clique ...
                              TGFPT,HYOOTGP

                              Comment


                              • #16
                                Good luck, Jennifer!

                                Hang on Lisa, Joey and Aiden, there WILL be a match.

                                Friendship is Love without his wings
                                -Lord Byron
                                "If you would have only one day to live, you should spend at least half of it in the saddle."

                                Comment


                                • #17
                                  Jingles, prayers, pleadings, whatever it takes! [img]/infopop/emoticons/icon_biggrin.gif[/img]

                                  Proud Member of Wood Hill Farm who's motto is "I'm not going sober!"
                                  Proud Member of Wood Hill Farm who's motto is "I'm not going sober!"

                                  Comment


                                  • #18
                                    Lisa, Joey, Aiden and Jennifer -

                                    You are still at the top of my prayer list, I do hope and pray for a Miracle for you all this Blessed Season.

                                    Cheers and jingles,

                                    Brenda & Murphy

                                    Comment


                                    • #19
                                      Safe journeys. You all are in my daily prayers.

                                      "I am not afraid of storms, for I am learning to sail my ship."
                                      -Louisa May Alcott
                                      "My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world." ~ Jack Layton

                                      Comment


                                      • #20
                                        Thoughts and prayers for all of you! Best wishes for a safe trip and a very happy ending.

                                        Good luck Jennifer and bless you for going through this process.

                                        Comment

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