Our house is a bit turned upside down at the moment, it is time for the review on what services Connor qualifies to receive through the state since our insurance will not pay for certain things he NEEDS (like speech therapy) Battling the insurance is a gut-wrenching and time consuming task we parents of ill children are all to familiar with-being put on hold a lot, sent to mailboxes that are full and no message can be left on them, oh the fun! Lots of ??? from them that involve the word "WHY"? Why does he need this $5000.00 infusion every 3 weeks? Why does he need these medications every month Why does he require all this speech therapy? Well, it happens to be because although he IS speaking now the words are unintelligible to 99.9% of people he talks to. And on and on...right now is the "gathering process" I have to get ALL of his EOB's together (explanation of benefits) from the past year, which is around 76 or so for all the different infusions and procedures...then EVERY therapy note taken this past year-which adds up quickly since he goes two times a week. Also his IEP from school, his latest evaluation testings from the speech therapist, etc... It ends up being hundreds and hundreds of papers to send off to fall into the hands of hopefully a compassionate soul out there in the world that gets to decide WHO gets the help and WHO doesn't...It hasn't really helped us that much with the medical bills for Connor-but it has been a godsend for the therapy bills! So please keep praying on this with us!!!
Rough week this week, Connor is bloated and in pain, but sleeping soundly at the moment. He even still felt up to riding his bike this evening which surprised us all! Still weaning and right now it seems the steroids are winning the battle-but we will keep trying even if is not quite at the pace we had hoped. I do have to admit I LONG for the day I will be able to take him outside our house and not worry about EVERY single germ that might come in contact with him...Raising an immune-suppressed is just so hard with so many UNKNOWNS lurking all around you. Does that person have allergies or or a contagiouis cold? And on and on, etc...you get the idea.
Planning on going to the Georgia Aquarium at the end of the week!!! So excited-havent been there since I was pregnant with Connor and Samantha was only three and the twins were only 11. I hope C does okay with his fears he has about places like this (pray) :-)
We are at the THREE year point in our journey through childhood cancer and OMS. I have learned a lot along the way-learned of so many special kids that have gone on to heaven too soon...I have learned to fight for my son and the school system to get him the help he needs. I guess you could say I have leaned a lot of good and a lot of bad...but what sticks out the most is just the LOVE. From strangers, from friends, from doctors and nurses, from little cousins who don't understand but still are quick to give hugs to Connor on a bad day...Love from a big brother ang big sisters to their little brother, whose whole world is about them! Thanks to them he has as close to "normal" a life as possible-who better than siblings to still treat you normal-they chase you and tickle you , teach you how to do things and love you no matter what.
Three years in, and still fighting everyday to add to that number!
Before OMS Onset....
Connor was SO happy and interactive-then OMS struck at 15 months old and he changed overnight...