Thank you one and all for your kind comments and good wishes and prayers for a day like today. It means a lot Touches me so Like that idea it takes a village Thank you for being a part of ours If you havent seen recent updates While the BEST news for Madison And this family is continued survivorship Weve beaten CANCER But Madi has some new challenges ahead even the idea of moving from a cancer family to a family managing long term disabilities As I think of all the things we are working on and researching and juggling Here you go Possible eye questions Madi is partially blind in her left eye so can we laser the existing scar tissue to increase sight to that eye; Or is cornea transplant even an option Facial reanimation - can we balance and lift her smile Might include other plastic surgery to balance her face in general Nose from digging damage (neurological and social issues) Help make eyes more symmetrical Later jaw lengthening options since the left side of her face didnt grow at the same pace as her right side due to her facial palsy present since age 2 1/2 & 3 The latter not only a cosmetic issue but a functional one about teeth and jaw Madi has an ENT appt next week for a scope eval to check for reflux again of all things a side effect to radiation Minor reflux meds and steroids might keep her chest and nasal cavities clearer As her nasal passages dont work on the left are affected either due to the palsy or the digging or both but if its all kept clearer, less prone to infection hopefully she might get sick less And miss less school and life stuff Since she is slightly immune suppressed Again long term side effect to her endocrine system due to the radiation treatment Lets see what else Ongoing PT and OT as needed Or when I can get her to participate in the appt Age doesnt always = maturity And Madi is just tired of all the appts So PT and OT had a break the last year Heck shes been in/out of PT alone since 4 months of age our early beginnings of problems before true diagnosis at age 2 1/2 Anyway These services are key To keep her strong and functioning to the best of her abilities Yay - Appts yesterday with St Jude PT were good PT and OT are amazed how strong she is even her stamina is good Question of Madis walker Shed personally like to NOT use a walker anymore Shes has used one since age 3, second brain tumor resection but built her core-strength and shes pretty much been not used it for the last couple of years its only now school use/safety/IEP issue to handle Speaking of school there is the Neuro Psych eval which unfortunately got pushed back another 6 months with that info helping give insights to possible special needs for learning in the classroom Have I missed anything this is the life of my baby And Im grateful to have that life And Ill do everything I can to give Madi and her brother what they need to just do life SOOOOOOO NEW NEWS Please watch for future fundraisers for my babies While St Jude has been a God-send beyond measure We are heading into territories they dont cover Ill share more when I know more But well most likely be setting up something like a GoFund account with an independent 3rd party friend helping manage the account To ensure any fundraising goes for Travel costs and medical needs only, as intended So again, as those get set up ... please prayerfully help where you can I just registered for my first 5 K My first fundraising opportunity I want to say WOW scary for me But I have to be as strong as Madison and Elijah are everyday So there you go Some more info on the days and lives Of my little family Thanks for following along!! xoxo
Posted on: Wed, 09 Apr 2014 02:58:59 +0000
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