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

Tuesday, October 31, 2006

wow....scary news....

well, yesterday, james informed me that it is VERY POSSIBLE that he will be leaving for iraq for a year to 18 months.....what a SHOCK that was...don't get me wrong, i KNOW that because he is military, it is ALWAYS the possiblity that it can happen...i accept it but of COURSE i am not happy about it!!! ESPECIALLY with all that matthew is going thru right now....he found out yesterday that he and another person WILL be going right now...they are TRYING to get him out of it but he says he doesn't know if he will be able to or not...he is also afraid that if he DOES try to get out of it because of matthew, they will not re-enlist him because he is non deployable...sooo, chances are pretty good that he will be to think?! that is all i have been thinking of! right now, it might be anytime from jan-march....still not sure...i wish it were somewhere FURTHER down the line..i know he has 13+ years left so he was BOUND to be deployed sometime but i sure wish it was when both boys were a BIT older!!!...

james asked me, WHAT WILL YOU DO? i told him plain and simple, WHAT CAN I DO BUT SURVIVE AND HANDLE IT!!!! true....true....i already have a "plan" should he not be in town and matthew goes into the hospital...alex will stay with me there at the hospital....he is SUCH a good little boy i know he will do well....i wouldn't like him to be away from me & matthew unless ABSOLUTELY NECESSARY!! he will already be DEVESTATED because daddy is gone and for us to be WAY! that will be to much for him to handle...

wow...what a thought!! james not being here for a bit....that is SOOOOOOO SAD TO THINK ABOUT!! but we will handle it! this kinda put a bunch of things on hold...we decided that we would NOT sell the house right now because i already KNOW the neighbors and they are AWESOME so i can stay here and be near them....

anyway, just had to write it down because it MAY become reality soon...

Sunday, October 29, 2006

OMG.....105.3 AUXILLARY!!!

yesterday was SOOOO SCARY!! my poor little man!! he was starting to get sick yesterday so we started him on his neb treatments every 4 hours because he was coughing and just not feeling well (also gagging with his meals) at about 2 pm, he had a temp of 101 so we gave him tylenol and had to give it to him a couple of more times....well, then after he was asleep, james and i fell asleep and then james wakes me and tells me he is refluxing...i get up and he is BURNING UP!!! so i immediatley get a thermometer and james is taking a temp (ear) and he is getting readings about 105, 104.9...i was like WHAT?!?!?!?! his heart rate was also up into the 200's!!!!!! so i KNEW he must have had a high temp! so i take a temp under his arms and it is 105.3 with him fighting me and everything!! i was sooooooo scared!! i gave him some tylenol IMMEDIATELY and also get a wet towel to start sponging him off....i called ask a nurse but everyone ELSE must have been calling too so i proceded to call EMS because i was soooo sure he was going to have a seizure...his eyes were rolling back and he was grunting and just looking AWEFUL!!!! and we already had him on oxygen because he was, they come in and they take a temp and on their reading it is, they put him on a nonrebreather mask at 2 lts to keep his sats up and we were OFF!!! i was kinda worried when we got there because we were SOOOOOO use to going straight to the TRAUMA room and stuff and here we were going to the triage area instead...i thought they were goint ot send us out to the waiting room!!! but THANK GOD they did not! so, they put us back in a room and on oxygen and they put an iv in him and gave him some antibiotics thru the iv....and they SENT US HOME!!!! :) sooooo happy! we are just to continue some antibiotics and keep an eye on his o2 sats and just keep alternating tyelenol/motrin!

i was soooooo scared...i was remembering a freind of ours, LOT, and his 105 temp with a seizure that ended with him going from being able to sit/play etc and going to not being able to hold his head/sit etc because he fell behind developmentally! "frying brain" was in my mind...but he is back to normal...he still has a temp and he is still congested and needing oxygen but GOD WILLING we got it at the begining and he will be on the REBOUND!! :)

Sunday, October 22, 2006

busy but GREAT WEEKEND!!

yep, we had a GREAT WEEKEND!! it started on friday by james coming home early and us all going out to BASS PRO SHOPS again!! what fun!!!! :) and then i ended the night by hanging out with my buddies at GNO!! we met up at a friends house and played a game of cards and watched a movie!!! just wonderful time of just talking and laughing and just have fun!!!

then on sat, we had a couple of hours out on the lake fishing and just have a BLAST!! then spent the rest of the day here at home relaxing!

then on sunday, well, we started off at CHURCH and then made our way to a birthday party for a buddy of alex and matthew...then we went to FIESTA TEXAS!!! we had a BLAST!!! and the temperature was AWESOME for being outside! it was just us four but we had an awesome time! we actually stayed to watch the MAYOR SLAYERS MOSTER MASH BASH which was just simply AWESOME AWESOME AWESOME!! we had never been to it before and we were just in awe of it and we just sang along with it!!! we can't wait for next weekend, when it is the LAST WEEKEND of the season :( but there is NEXT YEAR!! so here are some pics of the boys:

look at my big boy STANDING!!!

Friday, October 20, 2006


yes, it is OFFICIALLY OPEN and who but US and about a couple of THOUSAND people went to the opening on WED!!!??? and AGAIN on FRIDAY?! my hubby was SALIVATING at the mouth and couldn't utter a complete and coherent sentence to save his LIFE!!! he was toooo funny! we got there at about 5:45 pm (opened at 5:30 pm) and fought thru traffic and TORRENTIAL RAIN but thank you GOD we found a parking space!! and it is BEAUTIFUL!!!! really and truly BEAUTIFUL!! kinda like cabellas outdoors!! it is HUGE, much bigger than the OTHER THREE (yes, we have been to 2 here in texas and one in would have been FOUR but that was when matthew was in the hospital in missouri!) and i actually was impressed by it!!! VERY NICE! a great place to just go and look around! here are some pics!

Tuesday, October 17, 2006

got some things done!

yep, today i had FOUR things on my list of to-do......i got appts for the boys for their, i think i will have to take a valium or something before/sfter that appointment!! alex is DEATHLY afraid of the WORD dentist!!!!!! soooo, i told james he had better be there because there is NO WAY i can do it on my own!!! matthew, well, we shall see how he does at the appt!!

the next thing was to get an appt with the BRACE SHOP at BAMC for matthews new AFOs for his feet! he has OUT GROWN his first ones!!!! awwww.....

next, i have to find a NURSING HOME for matthew to got to so that we can do the MDCP program...there are like a MILLION nursing homes around here!!! but i WILL find on!!

and last is an appt for ME for the regular physical exam!! all in a days work!

did i mention that alex has a PHOTOGENIC MEMORY!?!?! he does! he can hear a song on a movie and then here it again on the radio or somewhere else and HE will tell ME that, hey mom that was on ..... movie! and i usually have to think about it to remember it but he is ALWAYS RIGHT!! take for instance the movie CARS...we watched it ONE TIME in MISSOURI(JUNE2006) and then about a month ago or so, we heard on the radio "life is a highway" by rascal flats and he yells, HEY MOM, THAT IS FROM THE MOVIE CARS!!!! and he will remember silly songs from shrek or where ever!! it is just amazing!!!

anyway, all is well in the homefront! TOMORROW james has a BIG BIG DAY that he has been COUNTING THE DAYS for it to happen...what do you think it could be? well, if you guessed GRANDOPENING OF THE NEW BASSPRO SHOPS in san antonio, you are ABSOLUTELY CORRECT!!!!! this man has been SALIVATING waiting for it too open....he even went out TODAY during lunch, to buy some LURES from 2 of the fishing celeberties that will be there so they can autograph them!!! such a NUT! i will have to carry a spare bib on me to mop up all the DROLL he will be letting loose as we wander the place!! and guess where we will be for the next FOUR DAYS?! yep, THERE!! WHY? because there are going to be tons of outdoor celeberties out there!!! YAY!!

Sunday, October 15, 2006


Photo Sharing - Upload Video - Video Sharing - Share Photos

hey all! i just thought i would show you matthews newest thing!! he is OBSESSED with this cabinet!! he LOVES to go over there and pull out all the videos!!! and we will go over there remove him and put him back and as soon as his butt hits the floor, he is OFF to go do it again!!! while taking this video, he SOOOOOO IGNORED ME!! he knew i was right there and he just wanted to act like i was not there because i always tell him NO NO!! and if you look towards the end of the video he gives his "lip" because i just told him NO NO!!! such a cutie! soooo, enjoy the video!!!

Wednesday, October 11, 2006


i found it! i LOVE this song from JOSH is soooo spiritual and true.....i used it in the video montage of matthew and i LOVE IT!!!



and again:

(billy graham)

and i wholeheartedly believe that...when our darkest days were here with matthew MAY 21-26, 2004, when we were told that he would not LIVE, PEACE came upon us and helped us get thru it.......we just felt such PEACE AND JOY that we had had such a BEAUTIFUL baby boy......NOTHING ELSE MATTERED....we had FAITH that GOD was with us and that HE had our son in his hands......THANK YOU GOD for our son!!!

doing great!

as we truck on....matthew is doing great....still junky BUT BUT not as junky as he has been...he still drops his sats when he sleeps but he is keeping them ABOVE 90 with an occational drop lower...the interesting thing is that his HEARTRATE has been dropping TONS into the 40's!!! all over the place!! kinda reaffirms that the VNS is NOT the best deal for him!!!

well, we talked to the neurologist today and he agreed that we were NOT going to do the VNS surgery RIGHT NOW....he said, WHY DO WE WANT TO TEMP FATE by possibly doing something that could STOP HIS HEART!!!! that was OK WITH ME!!! so we talked about the KETO diet...not sure if we are going to do it or not but that is what is in the works!! so far so good on these meds!!

Thursday, October 05, 2006

soooooo proud!!!

OMG, my BIG BOY ALEX!!! he finally GOT IT!!!!! what did he get? HE FINALLY GOT WHEN I ASK "WHAT DOES **** START WITH?" i had been trying with him and TODAY, he finally figured it out!! so NOW, he has been going around the house and saying, "tabel begins with T!!" ETC ETC!! all over the house!!! wow, he is such a smarty and he just turned FOUR!!! woooohoooooo!!!

and my little matthew, yesterday, he ate about 2 OUNCES of food (rice, bean, & chicken) mashed up and then TODAY, he ate some MACARONI AND CHEESE! WITHOUT BEING MASHED UP!! i just cut it into 3 little pieces and he ate the 3 of them!!!WOOOOHOOO!!! sooooo proud of him!! and one good thing that came from the hospital stay was that i am now giving him his bolous of 165cc of milk in 10 mins!!! i use to give it to him within 30 mins but now, just 10 min!!! wowowowowowowow

my boys just AMAZE ME!!!

went to drs office today....

and still the same....we went to the PEDI and he is still WHEEZING!!! he said he just didn't know what else to do for him!! he increased his FLOVENT to 3 times a day and added ATROVENT to his neb treatments....we did talk about his ALLERGY test that they did come back negative BUT he said that his IGE( level was VERY HIGH!! SOOO what does that mean? he is allergic to SOMETHING but what?! anyway, then we talked about the VNS and he was really upset that we were not going to be able to do it...or that there was a POSSIBLITITY of not being able to do it...i explained that hia heart rate goes down and that the surgeon was AFRAID to be put it in because one of the side effects that it has is that it DROPS the hr when it fires...ok, that is SCARY because it could STOP HIS HEART!!! so we are leaving it up to the CARDIOLOGIST to see what he thinks!!! i don't know if i even want it now!!! toooo worriesome! his pedi was sad because he just didn't want matthew to have a life of seizures....i don't either BUT i feel that he WON'T HAVE IT!!! i jsut have this feeling GOD will watch over he has been doing! i just have to have total FAITH in this!! and i do!!! :)

matthew is still doing his thing...i just hope he can clear up someday soon!! poor kid! i know it is not fun to be so sick....

Wednesday, October 04, 2006

GODs plans are BEST....

how true is THAT?! why do i say this? well, today, we had an appt with the SURGEON for his VNS be honest, i was starting to get these doubts about actually doing it....i don't know if i was going to back out or WHAT but i really wasn't feeling very confident about it anymore...when i got out of the hospital yestreday, there was a message on the phone saying that there was NO REFERAL and that we sould have to reschedule the appt.....i was FLOORED because we had been ANXIOUSLY waiting for this appt!!!! i dont' know if that was GODs way of telling us something!! soooo i started to make phonecalls and such and at the end of BUISNESS DAY i was not sure if were going to go or not...well, this morning, we got a phone call saying that it did NOT go thru and we sould have to reschedule for the 25th of oct....i was kinda emotional because matthew kept having these seizures...well, after a couple more phone calls we got it all covered and we were off for the appt!!! well, we were there with the surgeon and he said..he was going over his history and he asked me "does he have any heart RATE issues?!" of course i had to let him know about it DROPPING into the 30-50's and he said I AM NOT SURE WE SHOULD DO THE SURGERY!! why?! because the VNS LOWERS THE HEART RATE of a pt.....hmmmm....remember, matthews heart rate lowers into the 40's and 50's....when i told him that, he said, I REALLY DON'T THINK I WANT TO DO IT!!!!! it could KILL HIM if he has irregular arrythmias!! called BRADYCARDIO and he DOES!!! he said he would have to consult with the CARDIOLOGIST to see what he thought be he just didn't have a good feeling EITHER about it!!! i told him i was SOOOOOO HAPPY WE TALKED!!! and the reason for the CAPTION above is this....after getting home from the appt, i ran upstairs to read my HOPE FOR EACH DAY by gilly graham book that my buddy sandra had given me at the hospital and GUESS WHAT IT SAID?!?!?!


and that says it all!!!


yes, THANK YOU GOD, we are HOME HOME HOME!!! :) such a GREAT thing to be! we got home yesterday about 2pm or has DEFFINELTY been such a ROLLER COASTER RIDE!! and as usual, the RIDE CONTINUES!! more on this later!! DON'T FORGET TO CLICK ON FLICKR on the RIGHT SIDE for NEW PICTURES of the family!!! :)

well, matthew came home yesterday still being sick! he will continue to be on ORAL STEROIDS and yesterday (tues) will be ONE WEEK that he will be on them! and he still has ONE WEEK TO GO!! his pulmonologist came to discharge us and she said he is STILL WHEEZING!! i told her i didn't understand WHAT was happening!! he has been over a MONTH with this and he can't seem to shake it!! she said either it was a VERY BAD VIRUS he originally picked up and his lungs are still really inflamed and it will take it some time to get over it or ???????!!!!! soooooo, we just conitnue his treatments (2am, 6am, 10am, 2pm, 6pm, 10pm) and his oral steroids!! and we POUND HIM!!! yep, CPT treatments with his nebs! we see her back next week to see how he sounds!! and MATTHEW, this little boy, NEVER had a Heart rate LOWER than 60 at the hospital but at home, THE FIRST NIGHT IN, he scares the you know what out of us by going into the 40's!!!!!!! ok, is it just that he is sooooo comfy in our home or WHAT?!?! so of course now we are on HIGH ALERT for a seizure!!!!! man....

Tuesday, October 03, 2006


had to post this because i think it is SOOOOOOOOOO TRUE...i always pray for my little matthew to get better and that his seizures go away, etc...i BELIEVE that only GOD knows best for my son.... ANYWAY, my friend sandra came to the hospital on sunday while matthew was on the vent and PRAYED OVER HIM and it was soooooooo special. she also brought me a wonderful BOOK called HOPE FOR EACH DAY by billy graham....very nice story for everyday of the year.. well, today, oct 3 was just soooo appropriate: it is called ANSWERED PRAYERS and basically it is this, something i WHOLE HEARTEDLY BELIEVE IN:

God ALWAYS answers the praeyrs of his children-but his answer isn't always "YES". Sometimes His answer is "NO" or "WAIT" - and they are answers just as much as "YES"


Monday, October 02, 2006

MATTHEW ISAIAH UPDATE.....prayers working!

hello everyone, just a quick update! all thoughts and prayers are WORKING for this little man! he is doing much better today! THANK YOU GOD! he is OFF THE VENT!!! YIPPEEEEEEEE!!! we are sooo proud of him! you know, with this kiddo, NOTHING IS EVER EASY or just SIMPLE!! he is such a fighter and he is such a MIRACLE!! :) the drs were suprised when his oxygen sats and his blood gases came back better after being on his vent....and when they extubated him, his gases were great too!! little stinker! you know matthew, he just LOVES to scare his mommy and daddy!! and this time...he sure did GET ME!! i was really really worried about him...he looked SOOO AWEFUL and since he was already sick, it was just that much WORST!!!!!! anyway, he started to get REALLY UPSET about it when he started to wake up....coughing, gagging, etc! he was even NOT JUNKY sounding anymore while on his vent! they had REALLY pulled a BUNCH of junk out of him!! (THINK EGG WHITES!) they were really hesitant on taking him off of it because he was SOOO BAD earlier but i assured them (knowing matthew) that he would be just fine!! he was giving me lip and crying but he was such a good boy and was NOT pulling on the vent!!! :) anyway, they decided to try and do it and he MADE IT!! they said that as soon as they pulled it out, he gave the dr (one of his favs) his POUTY LIP!!! he was a bit peeved it had taken them sooo long i guess!! anyway, now that he is OFF the vent, he is again VERY junky sounding but a bit better, if you can believe that! his pedi and pulmonologist were upset that he was back....i REALLY don't have a CLUE as to WHAT is going to happen!! honestly! i talked to the dr and he said he was in PIMC status (step down) but apparently we are staying there at picu?! and i know we are not leaving TODAY because he told me that his neurologist would see me TOMORROW!!! but trust me, it was NOT FOR LACK OF TRYING!! but i whole heartedly agree, better to finish it HERE and not have to come BACK AGAIN!!! they did start him on a new SEIZURE MED (which i had DREADED THEM DOING) and to make matters worst it is KLONOPIN...if you remember, that was the one that caused him to DESAT WHEN ASLEEP and me having to put him on oxygen during the night....that is what started the whole SLEEPING WITH PULSE OX thing way back in july!!!!!! soooo, i am kinda concerned about that! we start tonight so we shall see what kinda effect it has on him!

anyway, sorry so short but i wanted to let ya'll know what was going on! THANK YOU A MILLION TIMES for all the thoughts and prayers for this little guy....he is still a sick little boy but you know matthew, he makes the BEST OF IT!!! such a cutie! we had some GREAT VISITORS come by to be with us and we as a family are SOOOO BLESSED TO HAVE THEM!!!!!!!!! and we feel BLESSED to know all of you out there reading this....THANK YOU! and tons of love to ya!

ok, gotta run! i will post updates on my BLOG AT:

i also took some pics and will hopefully post them SOON!!!

please continue the WONDERFUL prayers for this little guy, and we THANK YOU SOOO MUCH!!!

take care and GOD BLESS...

james, maria, alex and matthew

Sunday, October 01, 2006


hola everyone,

mr matthew had another big seizure today durning nap (the seizure was over an HOUR long) and we were brougt in by EMS code 3 and we are back in the hosptal in PICU and he is on a VENT....he has not been on a vent since 8/2004...he is really congested and not doing very well... he is very sick...they are pulling so much stuff out of him right now! as usual with his seizure, he gets respiratory issues along with it and with his congestion it is that much WORST...remember, we just got out of the hosptial on 9/28/06...he has still be congested and he has still be really sick.......they even did a spinal tap on him to check for meningitis...he is a VERY sick little boy right now...

sooooo...i am asking PLEASE, any good thoughts, prayers for this little boy...they will GREATLY be appreciated! he has been thru soooo much this last almost MONTH with this illness that has not QUIT! I have been sooo worried about him!! i am taking this as a MIXED BLESSING because maybe with them pulling so much OUT OF HIM they will finally clear him UP!!! this might be where he needed to be!!

anyway, on top of taht, my brother came into town from GERMANY yesterday and we are having a small gathering for him at our house....RIGHT NOW!! yep, there is a PARTY going on right now! :( james will be kinda stuck right now and he will have to be by later on (with food of course!! can't wait for that BBQ!!! )

anyway, thanks again in advance for any thougts and prayers for him!

take caren and much love i willkeep you updated!
maria, james, alex and matthew