tag:blogger.com,1999:blog-2212485478080287079.post3785002538692283590..comments2023-08-28T03:10:39.279-06:00Comments on Jaxsons Fight: Brutally honest!Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.comBlogger24125tag:blogger.com,1999:blog-2212485478080287079.post-44798767361753624532011-02-04T22:23:31.146-07:002011-02-04T22:23:31.146-07:00Girl...I am feeling your pain. I am getting whipla...Girl...I am feeling your pain. I am getting whiplash from this same cardio. UGH!!!! I think he is way over worked and doesn't even look at things correctly anymore. <br /><br />He told me back in Oct, that Rhett's valve needs to be replaced. Now he's saying that Rhett can deal with it, and not to worry about it. But his heart rate is low, so maybe he needs a pacemaker. <br /><br />But I can guarantee that we will get the holter results back and he will tell us Rhett's fine. Well He's NOT fine. He sleeps all day, he's dusky, and he has stopped eating! I just want to punch him. He keeps tying to blame it on other things other than Rhett's heart, and we have had a FULL workup done on everything. The only thing it comes down to is his heart. <br /><br />So. Anyways. I just wish you could get some answers, and people would look at Jax as a child. Sending you lots of hugs.Pamhttps://www.blogger.com/profile/10449171111666867354noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-36726056510843801542011-02-04T10:07:03.752-07:002011-02-04T10:07:03.752-07:00Lacey.......You are an absolutely amazing Mother !...Lacey.......You are an absolutely amazing Mother ! Your Children are BEAUTIFUL inside and out!!!! I've cried through just your first page on your blog. I'm not sue if you read my posts from last Sept of 2009 forward.....but I think I was the ONLY one holding on to hope for my Mason!! I didn't get any hope from PCMC's cardiac transplant's team :( And not only did CHOP and Stanford give me hope, but confidence also! They ARE NOT going tell you they can take on Jax just for the money!! I promise!!! They will not take on a case they do not feel good and confident about!! I chose Stanford after many prayers and..... it was much closer to my family in Utah. Please if you want to talk to me , e-mail at sumstrick@gmail.com and I'll give you my cell number.Summerhttps://www.blogger.com/profile/10545773514266397212noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-61983481723233317542011-02-03T20:38:21.963-07:002011-02-03T20:38:21.963-07:00Lacey, you are so strong for Jaxson! Don't let...Lacey, you are so strong for Jaxson! Don't let the doctors feel like you are second guessing them or not trusting them. Just keep asking questions and doing what you think is best. Pulmonary Hypertension is simply not well understood and doctors certainly do not have any good methods for treating it...except viagra. I have been in your shoes except my hell only lasted 7 months. All I can say is just keep fighting the good fight, you've got lots of friends and strangers praying for you :)dawn.mann@hotmail.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-8276152082970594172011-02-02T22:24:52.577-07:002011-02-02T22:24:52.577-07:00You are so strong. I don't know how you do all...You are so strong. I don't know how you do all that you do. Well I know your love Jaxson..so that is how you do it. I don't know, I guess you keep fighting until you think you have done the very best that you can do and maybe then you get some peace in knowing that you have done everything<br />in your power to help him. Doesn't make it any easier though, I am sure. Hang in there. Hugs. Ps. Love the pics.Sasha@ Blyssfulhealthhttps://www.blogger.com/profile/03645600854443758785noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-3276041583020162282011-02-02T22:12:57.837-07:002011-02-02T22:12:57.837-07:00I love the pigtails and especially the kisses!
...I love the pigtails and especially the kisses! <br /><br />I pray you can find the answers you need. It it so, so hard to try to make the best decisions for your kids! I truly hope you can get to the bottom of the lung issue.Melissahttps://www.blogger.com/profile/06474584473012742915noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-53816562994458005382011-02-02T21:19:39.622-07:002011-02-02T21:19:39.622-07:00Lacey, your post made me think of a book I'm r...Lacey, your post made me think of a book I'm reading about the 9 steps to keep the doctor away. In the book they talk about how well meaning doctors continually treat symptoms instead of getting to the why something is happening and it isn't until the why is fixed that change can really occur. I struggle when a doctor tells me that something is okay or alright for Sam, like it was okay for him to have a mild hearing loss because his speech was limited. How were we going to help him speak if he couldn't hear. Keep pushing the doctors, keep trusting your gut, keep looking for answers. We are always praying for you!suelmayerhttps://www.blogger.com/profile/09990628698335411723noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-23540245303746324052011-02-02T18:18:18.870-07:002011-02-02T18:18:18.870-07:00Ha! Now you know we have the same cardio and I for...Ha! Now you know we have the same cardio and I for the most part have had good experiences with him, but he SURE does love the saliva aspiration theory for EVERYTHING. Gave me a laugh. I know what you mean about not feeling you belong to the DS community sometimes. Like I have to glom on to the T-18 T-13 community. Bummer.Erinhttps://www.blogger.com/profile/03826866296753999239noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-63680233148345025882011-02-02T14:27:32.979-07:002011-02-02T14:27:32.979-07:00Sounds like people are finally thinking and listen...Sounds like people are finally thinking and listening to you. I'm glad for that.Shelly Turpinhttps://www.blogger.com/profile/04950719033017424725noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-47115522451453713592011-02-02T14:26:59.668-07:002011-02-02T14:26:59.668-07:00Your pics are just precious as uaual... and I pray...Your pics are just precious as uaual... and I pray you find ALL the answers you are looking for... You Go MOMMA!!! They are lucky to have you....Lovin Lanehttps://www.blogger.com/profile/04809723188104983332noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-49831340176121427882011-02-02T13:15:12.099-07:002011-02-02T13:15:12.099-07:00This comment has been removed by the author.LibsMommyhttps://www.blogger.com/profile/11824487624322035136noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-17026337110180365482011-02-02T11:46:26.568-07:002011-02-02T11:46:26.568-07:00Lacey, you are one AMAZING mommy!! Keep on pushin...Lacey, you are one AMAZING mommy!! Keep on pushing for those answers.....I am praying that they come soon!!<br /><br />love Arina's piggies!! And I LOVE the pictures of Arina & Jax......precious!!Kellyhttps://www.blogger.com/profile/02643251885429921088noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-35772394563165399882011-02-02T08:44:56.357-07:002011-02-02T08:44:56.357-07:00Lacey, you are one amazing woman! I don't kno...Lacey, you are one amazing woman! I don't know how you do it all! I don't envy the decisions you have to make! Hugs to you and sweet Jaxson. And I love the pics, as always. :)Mama Mason-Mannhttps://www.blogger.com/profile/06917976774636808205noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-86614427664793053452011-02-01T19:49:30.512-07:002011-02-01T19:49:30.512-07:00Lacey,
Do you think (maybe) that it could be poss...Lacey,<br /><br />Do you think (maybe) that it could be possible that cardio's comments could mean more that Jax is holding his own with the ASD and PH right now...and the issue is with the veins.<br /><br />There are people who do okay with certain levels of PH.<br /><br />I totally support you going to CHOP. I'm slowly working Reed into seeing the need of taking Parker to Denver or Cali. <br /><br />Just a thought. xoxo<br /><br />Tammy and Parker<br />www.prayingforparker.comParkerMamahttps://www.blogger.com/profile/02699831003510100066noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-62474915174765248592011-02-01T16:08:59.423-07:002011-02-01T16:08:59.423-07:00They are so sweet together...
and everytime I read...They are so sweet together...<br />and everytime I read all Jaxs med stuff I never know what to say...I would never want to come off like I know what I'm talking about and offend you...but know that I think of you often, and pray for sweet Jax...<br />And how would any mother be able to peacefully accept her childs time to go? shudder....Not a Perfect Momhttps://www.blogger.com/profile/09538588358382300444noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-1783021922386920812011-02-01T15:55:34.371-07:002011-02-01T15:55:34.371-07:00Jax's life is valuable and worth fighting for ...Jax's life is valuable and worth fighting for and I know I'm not telling you anything, but I want you to feel confirmed in your efforts for him.nicolehttps://www.blogger.com/profile/17745070594057449503noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-47736870406802620532011-02-01T15:50:37.754-07:002011-02-01T15:50:37.754-07:00It's so true. I felt that peace with Carter wh...It's so true. I felt that peace with Carter when I KNEW that it was time. Keep on fighting until you feel that peace.Team Carter Jayhttps://www.blogger.com/profile/00364088148612828851noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-15817011006957657172011-02-01T15:49:41.747-07:002011-02-01T15:49:41.747-07:00Lacey, you are such an AMAZING mom!!! Your childr...Lacey, you are such an AMAZING mom!!! Your children are all so lucky to have you a million percent on their side. You know so much more, instinctively, than any of those doctors. I hope you can finally find doctors that will be looking out for JAX and can see him as a little boy. ((hugs))Beccahttps://www.blogger.com/profile/14963099760885760598noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-58213726375917039572011-02-01T15:25:25.057-07:002011-02-01T15:25:25.057-07:00What would your boys do without your strength, ins...What would your boys do without your strength, insight, and ninja capabilities? You are amazing! I haven't been posting, but I have been following. It's just hard to type and feed baby at the same time and that's usually the big chance I have to catch up on your blog. Good luck and loved all of your pictures!Corinne Judy Smithhttps://www.blogger.com/profile/03551206029165309650noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-47602813661852294102011-02-01T14:59:53.279-07:002011-02-01T14:59:53.279-07:00Love the pigtails! And, love the kisses for Jax! ...Love the pigtails! And, love the kisses for Jax! What cuties!!!<br /><br />It's great that you are communicating with the docs! That is how progress is made! I wouldn't be able to give up either....keep fighting for Jax! He is so worth it! Hugs!The VW'shttps://www.blogger.com/profile/05116325494368190699noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-393789038611398732011-02-01T14:54:05.294-07:002011-02-01T14:54:05.294-07:00Sweet babies! I'm praying for the doctors to b...Sweet babies! I'm praying for the doctors to be able to help Jax.Cherylhttps://www.blogger.com/profile/01013919287284128734noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-15600651168480245242011-02-01T14:52:37.875-07:002011-02-01T14:52:37.875-07:00Yeah for the progress on Jax! And oh my goodness ...Yeah for the progress on Jax! And oh my goodness when I saw the pic of Arina it reminded me of Alayna's first piggie days and she had that same outfit too! CUTE!Rochellehttps://www.blogger.com/profile/11866781944242761406noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-71492673295578695092011-02-01T14:23:45.959-07:002011-02-01T14:23:45.959-07:00Love the piggy tails!
At least you got one doc se...Love the piggy tails! <br />At least you got one doc seeing eye to eye. Good luck with the rest.Kristinhttps://www.blogger.com/profile/11988590894638135312noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-367279186150372002011-02-01T14:05:06.026-07:002011-02-01T14:05:06.026-07:00Oh Lacey, my heart aches for you. I have never bee...Oh Lacey, my heart aches for you. I have never been in your shoes, but I admire your strength and desire to do what is best for Jax. You were the one who told me to keep pressing the dr's if you really felt something was wrong, and I am glad you stick to it. My heart and prayers go out to you and your family!! Keep fighting, it will get you what you want and need, and if nothing else, it will give you a peace of mind knowing you did everything in your power for him. Keep you head up!!Anonymoushttps://www.blogger.com/profile/05807215742624787540noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-7935067456404707472011-02-01T14:00:13.585-07:002011-02-01T14:00:13.585-07:00Look at those two precious children. It just my ...Look at those two precious children. It just my heart good to see how Ariana loves her brother. Just so sweet.<br /><br />Praying you can find the answers you need. HugsScrappy quilterhttps://www.blogger.com/profile/08643346408388508283noreply@blogger.com