Wishes DO come true...our FAMILY in FLORIDA!! :)

Sunday, September 10, 2006

RECAP of last couple of days....

we have had a BUSY week!!! yes, it has been a LITTLE HECTIC!!!

on tuesday, i had both matthew and alex SICK!!! they both had the runny nose, cough congestion....

wed...well today, we had a busy day of APPTS!!! first, we had 2 therapist come in, one at 8am and another at 9am.....then we also had the case manager for MDCP (medically dependent children program) which we have been on a LIST for since matthews birth and we are something like 4000 or so!!!! yep, there are THAT many people on this list!! it is a good program which will HELP us (GOD WILLING) with some of matthew's care!! ESPECIALLY that he will be covered MEDICALLY no matter WHAT!!! that is important because for ALL of matthews life, he will always NEED medical care in some form !!! well, we are bypassing the list by doing something called the RIDER 28....basically we agree to take matthew to an NURSING HOME for a minimum of 4 HOURS (usually 11pm to 2am) and he automattically qualifies for the MDCP is a loop hole basically but the list is sooooooo long that it would take YEARS AND YEARS to get MDCP and since matthew is MEDICALLY DEPENDEPT (needs oxygen, feeding tube, nebulizer treatments, pulse ox monitoring, and is medically fragile) we are able to qualify! not everyone who is on the list qualifies for this program!! since matthew is FRAGILE and can't SAFELY stay in a nursing home for the actual required 30 days, then he only has to stay those 4 HOURS!!! THANK YOU GOD! the drs had to write a letter saying that it was not SAFE for him to be in the nursing home for that length of time (which he is NOT because he catches EVERYTHING!!! and also his SEIZURE PRECAUTIONS make it that much more DANGEROUS to be there)......anyway, i NEVER thought i would EVER have to put my BABY in a nursing home for ANY LENGTH OF TIME!!!!! that is just HORRIBLE to even think that but when you have a special needs kiddo, you find you will do just about ANYTHING FOR THEM!!!! nursing care will fall under them now and is SOOO NEEDED right now.....tricare will probably NOT give me any hours...why? because i basically shot myself in the foot by doing such a great job taking care of that i NEED someone and have admitted what feels like DEFEAT in that area, tricare will still see that i can do the job so WHY do i need hours NOW? just UPSETS ME because i HAVE taken good care of matthew but things have CHANGED and james and i need HELP NOW and i probably would not get it because of the "great job" i have done......whole other topic THERE!!!! ANYWAY, back to my story, the came and agreed that he qualified and has over 4 diagnosis that make him PHYSICALLY DISABLED!! not something to cheer about, like i told them, i WISH i would NEVER have had to EVER hear that my son was DISABLED and NEEDED ANY TYPE of medicaid help....but alas, HE baby...

still on wed...alex had his ortho appt and all went GREAT!! he said a CLICK is fine and a CLUNK is bad and alex has a CLICK and that is ok!! :) then we all trooped over to the PEDI office due to their illness and both boys are on over the counter decongestants and matthew had no WHEEZES!! :)

THURS....met with the VNS and we are a GO....we have set up a DRS APPT with the surgeon on OCT 4th......the next step on our journey....JAMES left for austin

FRI....had to take matthew BACK to his pedi because he is STILL sick and he now needs OXYGEN when he is sleeping.....and is sooooo junky!! well, NOW there are WHEEZING in his lungs and the dr sent us over to the hospital for an CHEST XRAY (all normal! thank you GOD) but we started him on more NEB treatments and increased FLOVENT sprays and added ATROVENT to his neb treatments.....james came home

SAT....matthew is a bit better......STILL CONGESTED and needing oxygen but he is actually wanting to PLAY now....he is still not tolerating his feeds but ALMOST.....sad thing, all that progress he made with ORAL fustrating!!! he does so well and then BAMMMMMMMM....he gets sick......GOD WILLING he will start all over again and get back to where he WANTED to eat and was EATING WILLINGLY!!