rmlyonsfamily Posted May 20, 2012 Report Share Posted May 20, 2012 Most of you know that pots93 has been in the hospital since Tuesday. She's having a rough time and they are very frustrated with the care they are getting (or lack thereof....) and the current treatment plan while she's at that hospital. The girls have been facebook messaging and texting the last several days and Kaybers has been praying daily for them. Since it's only an hour drive to where they live, her Mom and I decided that it was time for the girls to finally meet..... face to face!They were able to talk about their disease, frustrations, worries, fears, and even just about girl stuff in the short 2 hours we were there! Us Moms enjoyed meeting too, and giving advice on how to handle our "potsies". You can read a little more and see a few pictures we took at "Life With the Lyons Family: They Finally Meet... Face to Face!".Know that Pots93 and her Mom are so VERY thankful (just as I was last year) for your support during these last few days! This forum has meant the world to them!!Michelle Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 20, 2012 Report Share Posted May 20, 2012 That is so neat!! And the girls are beautiful. I hope POTS eases up for them, as they deserve to live a fairly normal life. Quote Link to comment Share on other sites More sharing options...
mwise Posted May 20, 2012 Report Share Posted May 20, 2012 Hugs to you all. What beautiful girls they are. How wonderful everyone got to meet and spend time. Thank you DINET for giving us all the opportunity to share the good and bad times. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 21, 2012 Report Share Posted May 21, 2012 Aww, they're so beautiful. I wish these young girls didn't have to go through this nonsense. How nice they were able to meet eachother and spend time with another human being who truly gets it. Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted May 21, 2012 Report Share Posted May 21, 2012 I am sure that boosted everyones spirits! I also blog, http://boonefamilyupdates.blogspot.com/ I am an Army wife and mother of 4 (and a puppy), my teenage daughter has NCS and I have IST and OH and possibly POTS (seeing a new set of docs in the next few weeks) Quote Link to comment Share on other sites More sharing options...
kjmom Posted May 21, 2012 Report Share Posted May 21, 2012 That's so great that they got to meet! I'll have to show my Kayla. Sometimes I think she feels like the only kid with this illness. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted May 21, 2012 Report Share Posted May 21, 2012 What a great experience, not only for the girls, but for the moms also. It's always nice to talk to another mom who understands how hard it is to watch your child suffer with POTS. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted May 22, 2012 Author Report Share Posted May 22, 2012 jpjd59 - you are sooooooo right! It was very good to meet Kayla's Mom and talk about how we best advocate for our girls to get them the help they need when they need it. I left there feeling very refreshed! Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted May 22, 2012 Report Share Posted May 22, 2012 It was the best feeling! I loved being able to meet kayleigh and you. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 23, 2012 Report Share Posted May 23, 2012 Wonderful for all of you...so good to see your beautiful smiles Kayla and Kayleigh, and to have a friend, who truly understands and supports you!! What an encouragement to all of you. God has truly blessed you Quote Link to comment Share on other sites More sharing options...
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