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Update on Baby Aiden...Mr. RolexH's Birthday, 12/03/02

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  • what a bitter dissappointment. If that Editor approves the story, that might be an opportunity to shame insurance companies into at least reviewing their policy of only screening sequentially. Have you considered talking to your legislative reps, both on a state and national level? I know that all you wish for is to be a mom to a healthy baby boy. What more could you ask for in life! Only reason I ask goes back to your sentiment about what good things had been created as a result of this terrible disease...
    big hug, love, June
    \"The world\'s greatest achievements often happen on the edge of chaos\"

    Comment


    • <BLOCKQUOTE class="ip-ubbcode-quote"><font size="-1">quote:</font><HR>Originally posted by June:
      If that Editor approves the story, that might be an opportunity to shame insurance companies into at least reviewing their policy of only screening sequentially. <HR></BLOCKQUOTE>

      I had the same thought - here's hoping.

      So sorry for this disappointing news - keep you chin up!!

      Comment


      • Seeing those darling pictures of Aiden has made this cold, dark, sleety morning into one filled with the warm sunshine of his smile. [img]/infopop/emoticons/icon_smile.gif[/img]

        I just wish that I could take the whole Hawk Family into my arms a give them a big hug! Heck, I'd like to "group-hug" everyone [img]/infopop/emoticons/icon_biggrin.gif[/img] in thanks for all that they've done to boost my faith in the abounding goodness that still prevails in the world!

        That goodness is revealed with every "hit" to the Jingle Counter, every effort put in motion and with each offered prayer.

        Perhaps Aiden's story will be a catalyst to much needed reform within the health insurance industry.
        Coverage for testing aimed at optimum and timely treatment/testing options should never be meted out in agonizing inches. It should never be bogged down in "committee" the while time is of the essence.

        Maybe in the future, situations like this will be put on the fast track with the "Aiden" clause: if it is deemed medically prudent to optimize the donor pool, multiple donor testing should receive automatic pre-approval with the earliest diagnosis of the need for a donor.

        To all the Hawk family--may all of the love and heartfelt prayers coming your way bring your a bit of extra of strength and comfort until all of this is behind you. That happy day will coming soon--and when it does, our collective sigh of relief will be heard all through COTH-Land and around the world!

        {{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}

        Comment


        • Adorable pictures! I love the french outfit [img]/infopop/emoticons/icon_wink.gif[/img] I'm sorry to hear about the insurance company's decision. I'll keep my fingers crossed that another test won't be needed!

          Comment


          • Awww, is he not just soooooo cute? [img]/infopop/emoticons/icon_smile.gif[/img]

            The only thing that could be cuter will be to see pictures of him and Ti Amo together -- our two "COTH BB babies"! -- but we'll get those eventually. Good things come to those who wait, after all. [img]/infopop/emoticons/icon_smile.gif[/img]

            As for the insurance company, I'll hold my tongue -- [img]/infopop/emoticons/icon_rolleyes.gif[/img] -- and focus on the positive the way Lisa is so remarkable at doing.

            Happy Thankgiving Hawk Family! [img]/infopop/emoticons/icon_biggrin.gif[/img]
            "I don't want to sound like a broken record here, but why is it that a woman will forgive homicidal behavior in a horse, yet be highly critical of a man for leaving the toilet seat up?" Dave Barry

            Comment


            • I LOVE the little Frenchman outfit, he looks so cute!!! Only a baby could get away with that though. lol, He looks really well and so happy. Give him lots of kisses from me!!

              Comment

              • Original Poster

                Well, I spoke to Jill today.(our coordinator) It seems like everything is moving full speed ahead. I dso get frusterated at the system, but honestly the REAL problem is th lack of organ donors. So slowly we will tackel that issue, one organ donor card at a time. [img]/infopop/emoticons/icon_wink.gif[/img]

                SO for the good news. Jennifer's testing got bumped up a few days! We wil be going to ATlanta a week form today! SO I am happy for that. I love Jennifer, and I know that no matter what comes of it, she would do anything for my son. I get emotional speaking of it. SO I will stop. [img]/infopop/emoticons/icon_smile.gif[/img]

                Off to get his vaccines today! It stinks to see him cry, but I know every vaccine is a boost for that immune system so another little battle won today!! XOXOXOX

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

                www.caringbridge.org/fl/aiden

                Comment


                • Something more to be thankful for tomorrow!

                  And about those "organ donors one at a time"...I think you'll see that working, too. Like LordHelpus, I'm not sure who would want the organs that I still have (I've parted with a couple along the way [img]/infopop/emoticons/icon_wink.gif[/img] ) but I'm signing up, too!

                  Comment


                  • Great Christmas pictures Lisa!

                    I'm so glad to hear Jennifer's testing has been moved up. What a great holiday this will be if Aiden gets his liver! Sorry to hear about the insurance company isssue. I wonder, just how expensive are the blood tests alone? Maybe some of the proceeds from the Stallion auction or the other auction could be used to pay for them. Then at least you could go right to the more expensive testing of the next person if Jennifer is not a match. It just seems like such a ridiculously long time between one person being turned down and the next being tested. It must seem like an eternity to you.

                    Happy Happy Thanksgiving. Max has just discovered that sweet potatoes are the best food on earth, so we'll raise a rubber spoon to the Hawk family tomorrow.

                    Love
                    Jane and Max

                    Comment


                    • <BLOCKQUOTE class="ip-ubbcode-quote"><font size="-1">quote:</font><HR>Originally posted by Portia:
                      Awww, is he not just soooooo cute? [img]/infopop/emoticons/icon_smile.gif[/img]

                      The only thing that could be cuter will be to see pictures of him and Ti Amo together -- our two "COTH BB babies"! -- but we'll get those eventually. Good things come to those who wait, after all. [img]/infopop/emoticons/icon_smile.gif[/img]

                      As for the insurance company, I'll hold my tongue -- [img]/infopop/emoticons/icon_rolleyes.gif[/img] -- and focus on the positive the way Lisa is so remarkable at doing.

                      Happy Thankgiving Hawk Family! [img]/infopop/emoticons/icon_biggrin.gif[/img]<HR></BLOCKQUOTE>

                      as soon as Aiden is better!
                      we still have a really good medicare system here too.... until the conservatives totally erode it......
                      Happy Thanksgiving to you

                      [This message was edited by Fred on Nov. 27, 2002 at 03:41 PM.]
                      A Fine Romance. April 1991 - June 2016. Loved forever.

                      Comment


                      • Have a wonderful family day tomorrow!

                        "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

                        • Original Poster

                          Aiden was such a big boy and had such a wonderful holiday! I am so so so happ he was at HOME. No hospital food Thanks giving! After bing in the hospital for so long, all I kept craving was HOME cooked food. And yesterday was the feastI needed! AHHHH I am still stuffed!

                          Saus: Aiden's favorite thing in the who world is sweet potatoes too!! PLus there are double the calories in Sweet potaoted than most any veggie, so he can get nice and plump on them. [img]/infopop/emoticons/icon_biggrin.gif[/img]

                          Update: Aiden had his vaccines wednesday, OUCH! and so did I. I got my flu shot. We got his most recent weight and heigth. Aiden has gown a half of an inch! He is currently 26 1/2 inches, and weighs 17 lbs 14 ounces. Although he hasn't gained any in almost 3 months, he is still looking good. Our peditrician said that it is hard to tell what is fluid and liver, and what is his muscle. This time Aiden didn't have a lot of fluid, so the weight was pretty much HIM so we were all very happy.

                          I feel good about that. Today though I am going riding at My best friend, Jennifer's mom's house. (The same Jennifer that is being tested) I am so excited. She has a bunch of really sweet horses, and we are going to ride like crazy! I will get pics because we are bringing little Aiden with us. (her mom is babysitting)

                          Have a great day everyone. Now we are on to Christmas, I hope Santa brings us what we have on our list: A Liver! [img]/infopop/emoticons/icon_smile.gif[/img]

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

                          www.caringbridge.org/fl/aiden

                          Comment


                          • and have fun today. make sure you send us pictures!
                            and Equimom that was a beautiful message you wrote -
                            We never know what will be a catalyst for change.
                            Have a wonderful day.
                            A Fine Romance. April 1991 - June 2016. Loved forever.

                            Comment


                            • I bet homeade food never tasted better!! I think it's wonderful that you are going riding! Take a deeeeeeep breathe of that wonderful fresh air out there!
                              Give that beautiful boy hugs and kisses!!! Happy late Turkeyday!! {{{Positive Vibes}}} XOXO~~
                              Natalie

                              I RODE, I RODE...Well, if you can call it that....I RODE!!
                              www.kimballphotography.smugmug.com
                              ~*~Mom of the wonderful Nikolas aka \"Niko\"~*~
                              **Proud member of The Colorful blinb-bling helmet, SCgirls, BGSGand the EquinePhotog (do we have one yet?) cliques**

                              Comment


                              • Sorry to hear about the insurance company's decision. [img]/infopop/emoticons/icon_frown.gif[/img]

                                BUT! That is absolutely wonderful news about Jennifer's testing getting bumped up! Sure hope it all works out this time and Aiden gets the best xmas gift ever!

                                ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~
                                Show goals achieved & Sass is in foal! 6 months down... about 5 more to go.

                                We've got STANLEY! Wings Rock!
                                *bad shoulder clique * Member of "OMGiH, I loff my Mare" Clique! * Proud owner of a CANTER Cutie!
                                My Horses; COMH Page; My Blog

                                Comment


                                • ...it sounds like things are moving right along (except for the insurance company...they need a whack upside the head from Aunt Esther's purse), and in the meantime, I'm SO glad you had a wonderful Thanksgiving!

                                  I printed out one of Aiden's Christmas pictures, and it's now in a little frame on my bedside table to remind me to pray for him every night. And I love waking up in the morning and seeing his smiling face! [img]/infopop/emoticons/icon_smile.gif[/img] What a blessing he has been to so many people.

                                  We LOVE you, Aiden! [img]/infopop/emoticons/icon_smile.gif[/img]

                                  ~Sara
                                  *Charter member of the GM Fan Club*
                                  *Member of the Dirt Divers 78th Airborne Unit, ATH Squadron*

                                  Comment

                                  • Original Poster

                                    Gail, I think Jenn's mom is bidding on Mr. Fred!

                                    Bailey BFF, I took your advice I smelled the fresh air it was.. wonderful!

                                    I had the best time EVER riding!! I went to Jennifer's house and her mom had already tacked up her big Appendix mare (Cedar) for me. Cedar is so amazing you could fire a pistol off of her and she wouldn't even blink! Jenn, rode their little pleasure show QH mare. (Satin, not Satan, ... the silk like material [img]/infopop/emoticons/icon_biggrin.gif[/img] ) We had a blast! I rode western, but it was so much fun. OUCH! I am so sore already! (me bum be a-hurtin!) We really just walked around. I wasn't into trying to go and prove anything. [img]/infopop/emoticons/icon_rolleyes.gif[/img] We went on a 2 hour trail ride. It felt like all the world's problems just faded away. (I have to say honestly I haven't loved life this much. I really feel like I am just a happier person.) Jennifer and I had some wonderful and teary eyed discussions about Aiden and what she is committing to. It was really just what the Dr. ordered. I took an entire roll of film. It is developing as I write this. I will post when I get them back! (pics of Aiden with the horses too!)

                                    This afternoon Joey and I went to the park. We took Rolex and just laid out a blanket and let the sun soak in. It was great! Of course perfect weather here in Florida. I thought of you guys so much today I kept thinking how I wanted to share it with you. I was proud of myself for getting out. I felt really good.

                                    I don't think I really talked about Livers but for 10 minutes today (with Jenn) kind of nice. But of course the horsey bug bit me hard today. All in good time. I know one day I will get my own horse again. Just not for a while. But hey I have good news (for me [img]/infopop/emoticons/icon_biggrin.gif[/img] ) my chaps we much closer to fitting this time! Almost got them to buckle around the tummy! The legs were simple to zipper. Ahhh I am was so relieved, slowly getting the baby weight off. Slowly but surely. [img]/infopop/emoticons/icon_biggrin.gif[/img]

                                    Anyway, I hope everyone is having a great weekend. Aiden is doing so good. It has been a week since we have had any issues. KNOCK ON WOOD! I will post pics soon.
                                    ~~Lisa~~
                                    Save a life, be an organ donor
                                    ~~Lisa~~

                                    www.caringbridge.org/fl/aiden

                                    Comment


                                    • what a treat to read your post, Lisa!!! Your family was in our prayer at the table yesterday and I am so glad you went riding! much love, June
                                      \"The world\'s greatest achievements often happen on the edge of chaos\"

                                      Comment


                                      • When I need a break from life my horsie is the best perscription I could have.
                                        I am so glad to hear all the good news. Keep it coming!!
                                        I renew my driver's lic this month and you can bet I will be a donor on the card!!

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

                                        Comment

                                        • Original Poster

                                          We got some new pics back, just thought of posting them for you guys to enjoy. In them you can see how darn good he looks. This is why I have been on cloud nine. I know we have a tough road ahead of us, but this past week it has been so great! well anyway see for yourself.... [img]/infopop/emoticons/icon_biggrin.gif[/img]

                                          Here is the three boys at the park.... [img]/infopop/emoticons/icon_biggrin.gif[/img]

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

                                          www.caringbridge.org/fl/aiden

                                          Comment

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