My beautiful 5 yr old active little girl has TS,diagnosed at birth..she has had open heart surgery to repair a coarchtation and a valveaplasty to repair a pulmonary stenosis..oral surgery,numerous tubes in her ears...Hormone therapy, reflux,problems with weight gain...the standard things that come along with TS...Well after sitting over at Children's hospital San Diego all day yesterday with a swollen left foot..that mind you is three times if not more bigger then it's normal "Little FAT foot" state..My Maysen calls it her "Little FAT foot" lol.. They diagnosed her with Lymphedema,which i know that it comes along with the TS,but her foot has never been this big and she has never had such difficulty walking on it nor has she ever had it be painful to try to put it down all the way, she walks with it turned in and on her tippy toes...it is very sad to see...they did blood work and X-rays..and sent us home with instructions to elevate and give benadryl which all this has already been done since the start of this 5 days ago and it continues to swell NO change except for some more swelling and pain....I feel horrible that I have NO answers for her and that I can't wave a magic wand and "POOF" she is back to feeling better...now her pediatrician is trying to find out who the right speacialist is for this job of fixing Maysen..the hospital said we need to be referred to Loma Linda Children's which is great thats where all her others are,we have NO idea what the specialist in this would be,and right now we are at a loss on how to make her comfortable at the moment until we can find this "magic" speacialist and we can actually get in to see them and they can make her leg just back to "Little FAT foot"..So if there is anyone out there that is dealing with or has dealt with this and knows how to make it right again or even a little more comfortable for her I would be very very very thankful, I feel soooo helpless,that I can't just kiss this "owie" and make it better for my little girl.
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