tag:blogger.com,1999:blog-6365825377608140716.post8039405092722192736..comments2023-06-17T06:04:57.403-07:00Comments on My life with The Superhero and The Princess: No news is ... no news.Unknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-6365825377608140716.post-8179110832684103592011-08-17T11:53:13.544-07:002011-08-17T11:53:13.544-07:00Don't worry about updating (although we all lo...Don't worry about updating (although we all love and appreciate any news you can spare) and take care of yourself, Miss Tracy! <br /><br />You are doing all you can and getting some awschum advice along the way. I will continue to hold your family in my prayers and ask Him to take away your fears.<br /><br />Love you, girlie :)Amyhttps://www.blogger.com/profile/02826248976364694184noreply@blogger.comtag:blogger.com,1999:blog-6365825377608140716.post-16168356650852280552011-08-16T10:11:02.238-07:002011-08-16T10:11:02.238-07:00I'm so sorry you guys are going through all of...I'm so sorry you guys are going through all of this. When a young child has an array of AI problems no one seems to know what to do about it... or even what it is. It's an incredibly frustrating process. <br /><br />Emma's first positive ANA was at age three. It was only mildly elevated then, which they said was not significant. Over the years it has climbed to a very high titer of 1280. (Insanely high for a child, or anyone without SLE). Still no official diagnosis of Lupus, even though she meets all of the diagnostic criteria, plus some. Even her kidney disease is listed as probable lupus nephritis, but still... no diagnosis. <br /><br />All I can say is that I'm so sorry. We have been living with this insanity for years and I would not wish it on my worst enemy. I will say that Emma is doing very well in spite of all of her health problems. She has the blanket diagnosis of autoimmune polyendocrine syndrome type 2 at this time, but even that doesn't cover it all. <br /><br />I know that treatment of the individual health problems is more important than the "big picture" diagnosis, but it would be nice to know exactly why our kids seem to be falling apart. <br /><br />Anyhow, as always, you guys are in our prayers! <br /><br />Oh, and we always combine labs too! Last visit they pulled 11 tubes from one poke. That covered lots of doctors!<br /><br />Hang in there!!Amyhttps://www.blogger.com/profile/05084048230640305342noreply@blogger.comtag:blogger.com,1999:blog-6365825377608140716.post-57239725484494373952011-08-16T08:51:38.077-07:002011-08-16T08:51:38.077-07:00Praying for you guys as always. If there is anythi...Praying for you guys as always. If there is anything I can do, just ask! I'm here.Krishttps://www.blogger.com/profile/02317537266719165855noreply@blogger.comtag:blogger.com,1999:blog-6365825377608140716.post-24462949697788271832011-08-15T20:46:05.977-07:002011-08-15T20:46:05.977-07:00Will pray, cross fingers and toes, hope your littl...Will pray, cross fingers and toes, hope your little one is negative for Lupus and continues to be. Diabetes is more than enough to deal with.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6365825377608140716.post-40129540065266078192011-08-14T22:13:46.099-07:002011-08-14T22:13:46.099-07:00Poor sweatpea saying "no pokes" when she...Poor sweatpea saying "no pokes" when she woke up...:o( I hope that no news turns into good news soon for you and your princess. HUGS to you!sky0138https://www.blogger.com/profile/02085600646732450220noreply@blogger.comtag:blogger.com,1999:blog-6365825377608140716.post-84811367699716775982011-08-14T21:37:05.118-07:002011-08-14T21:37:05.118-07:00Thanks for the update! Glad they were able to just...Thanks for the update! Glad they were able to just do one poke!! Keeping up the prayers, for sure!!Denise aka Mom of Beanhttps://www.blogger.com/profile/05726979027850619807noreply@blogger.comtag:blogger.com,1999:blog-6365825377608140716.post-73429005608460233162011-08-14T21:02:28.070-07:002011-08-14T21:02:28.070-07:00Praying for you and the Princess! (((Hugs)))Praying for you and the Princess! (((Hugs)))Alexis Nicolehttps://www.blogger.com/profile/06671634676455946839noreply@blogger.com