So I have been thinking. Oh no right? Lol Lulu has really been talking about Valentines Day. I dont really know why or how she even knows about it besides what she sees on her cartoons. Since we have taken her out of school temporarily she wont have a Valentines Day Party so if any of you would like to send her a Valentines Day Card I think she would think thats the cats Meow. Please do NOT feel obligated. I just think her getting mail would just tickle her fancy. She will get back from Seattle On Valentines Day. She has to have a CT scan of her lymph system. They do it every year to keep an eye on the nodules they saw previously to make sure they havent grown. She will also have a rejection echo and see her transplant doc. On Monday we will finally be able to see the GI doc and hope and pray that she will be able to help FIGURE OUT this weirdness between her legs and be able to help us find a way to get some good calories in without worsening her diarrhea. The lidocaine mixed w butt cream is helping the pain :) but its not a solution. If you saw Lulu in the buff it would probably break your heart, it does mine. You can see every ridge on her spine she has ZERO fat on her butt which puts her at risk for prolapsed rectum. She has no meat to hold it in. I mean every pound someone loses I seem to find. That is not the case for her. She eats all day. She also poops all day. Last night when she woke up and yelled for me she said to me I am not Happy right now mom I said whats the matter? She said my butt mom, it just keeps pooping and farting ugh...what do I do? No one has been able to help me help her. I mean yes they have made it a little better but not fixed. Lulu is so very complicated. Last night I text Jessie and said is it possible she has some weird ass allergy to chicken or Cheerios? Because thats what she eats! I honestly wouldnt rule it out. I asked to be referred to a pediatric allergist A GOOD ONE so hopefully soon we will have that appointment. Who knew I was writing a book tonight. Lol so lets sum it up.... She needs a surgery to correct her Extopia in her eyes, She will need either a plastic surgeon or GI doc remove the growth in the nether region, she needs to see an allergist, she needs a sleep study, she needs to see a dermatologist about these weird bumps she gets on her butt and back and legs that do no respond to anti fungal or Bactriban, a CT scan to check for PTLD and a partridge in a pear tree. RIGHT! Let me squeeze that in between 3 dogs vets appts my son Gavins homework and therapies, gotta have husband time and then theres me. Its all do able .... Its just exhausting thinking about it. No more thinking for me tonight. :) Peace
Posted on: Sun, 25 Jan 2015 06:36:27 +0000
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