It's been a while since I've been able to update. We moved and things have been kinda crazy around here. Eli is still getting sick about every other week. I'm not sure what the deal is with that. We have germx in like 4 different places in the house and even Eli knows how to put some on. We have managed to stay out of the hospital though, so that is a good thing. We saw Eli's oncologist around the first of the month and he said that Indiana finally called and said they got the approval to lower the age limit on the clinical trial. He said we should hear from them to set things up. I haven't heard anything yet so I think I'm going to do some google searches and find the number to contact them myself. I just have to find the time to do it. Speaking of time I've been busier than usual because I decided to get rid of all the nurses. It was more of a pain to have them around than it was helpful. I'm super picky about the way I like things and some nurses we had just seemed so unorganized and never put things back where they belonged. Eli is happy though. He seems more at ease now. He knows if someone comes in his room in the middle of the night to do medicine or breathing treatments that its just his mom and he will just roll over and go back to sleep. We also set up an appointment with MD Anderson in Houston to get a second opinion on Eli's tumors and how to treat them. The appointment isn't until the end of August, but I'm looking forward to hearing what someone else thinks about the growth rate and the tumors invading important spaces like his lungs and liver. Sorry this blog is all over the place but I'm just trying to get this updated while the boys are in bed and I still have the energy to do it.
Also we joined a foundraiser for NF. It is the dallas/fort worth NF walk 2012. It's going to be on October 13th. I've never been good at fundraising, but I figured every little bit helps since the money is going towards finding a cure for NF (which is what caused Eli's tumors). If you want to help out and donate check out the website. We named our team Team Eli.
http://ctf.kintera.org/faf/donorReg/donorPledge.asp?ievent=1031859&lis=1&kntae1031859=5B90FCB627E44A05B0F65241B094B37C&supId=0&team=5136833&nmv=true
