FIL went into surgery....

today, james dad had angioplasty and open heart surgery! that was a shock! but THANK GOD he got it done! he had been trying to put off his HEART CATH for a while now and they finally convinced him to do it and then he IMMEDIATELY went into surgery THE NEXT DAY after getting it done!!!! that is how bad it was! the surgeon said that when he cut into his vien, the clog was sooooo bad that it came out like "toothpaste"!!! WOW! but he is doing well. he is going to be in the same club as his grandson with his SCAR on his chest!!

anyway, he did well and GOD WILLING this may help him to wake up and take better care of himself! life is SOOOO SHORT and they just gave him a new lease on life! i hope that he takes it and RUNS!!!

WENT TO NEURO....

today we had our appt with dr T....it went well and it was just a follow up from the hospital visit on friday.....he just told me that VNS is looking REALLY GOOD right about now! we are almost maxed out on his ZONEGRAN, we ARE maxed on his TRILEPTAL so there is not much more room to go to with these particular drugs. we are talking about TOPOMAX but not sure. we have an appt on FRIDAY 9/8 to meet with J about the VNS....i think that is the route we are going and just PRAY that it helps my little man!!!!!

we also talked about my INVESTIGATION....how i have been tracking his HEARTRATE and it seems that a couple of days before OR a SLEEP before, if his HR goes into the 40's -50's, he will have a seizure the next time he falls asleep. he told me that WOW! THAT IS AN AUTONOMIC RESPONSE!!!!! i asked him if i should use that as our marking point and he said YEP! YOU DID IT! THAT SHOULD HELP YOU TO KNOW WHEN HE WILL HAVE ONE!!! wow! can you imagine how GREAT THAT IS? it would hopefully HELP US to know when another siezure MIGHT be coming! HEY IT IS SOMETHING!!!! :)

another SEIZURE....

last night, at about 10 pm, he had another siezure...it was WAY DIFFERENT than the others in that it started on his LEFT FOOT and that is actually what alerted me! his leg was moving back and forth over the sheets making that SH-SH sound and i was like, 'WHAT IS THAT?!" and there it was...i wasn't even sure it WAS siezure!! i called james over and we deteremed it was, so we got the oxygen and i got his DIASTAT and by the time i got him turned on his side his left hand started to clench and unclench....he was NOT salivating EXCESSIVELY like usual so that was different to! but THANK GOD after about 7 mins from the diastat, he stopped....what scares me is that i thought iwas going to be another BIG one but some INSTICT again told me it was going to be ok, not to call EMS....he stopped! and then about an hour later, he had fallen asleep, as i was watching the monitor, his heart rate went UP and his oxygen sats DROPPED and i was like WHAT IS GOING ON! jumped up and his eyes were WIDE AND STARING!!! talk about FREAKED ME OUT!!!!!!!!! yikes! i told james, go ahead and call ems....they came (he had fallen asleep) and i told them what happened and they told me we needed to transport him because the THIRD time could be the charm!!!! and with his history, it is better to just get him checked out and then sent home instead of possibly him getting a BIG ONE....so off we went (midnight),....got there nice and quietly....stayed there for about 4 hours and then went home. they gave him a dose of ADIVANT and then watched him for about 2 hours and then sent him home.......they changed his dose AGAIN!!! we are now on 250 mg (from 200 mg) of ZONEGRAN....that VAGAL NERVE STIMULATOR is looking REALLY GOOD right now!!!

he is doing fine....THANK YOU GOD!

results of halter monitor!

well, dr p was ok with the results that showed. he said that he was worried that there was going to be tons of SKIPPED BEATS....well, it showed that matthew has some SINUS ARYTHMIAS but not to concerned about them and also he DID have some skip beats but they were RARE...so not to worried about that either!he also said that his HEART BEAT RANGE was 55 up to 180 beats per minute!! he said he was ok with the range.... he said that we will continue to monitor his heart rate and see what happens!!

hey, I AM HAPPY!!! :)

wow, it has been a week...

since i started "class" at home and alex is doing GREAT!! i am soooo proud of him! we usually do it right after breakfast and we probably work on it about 1 hour....we are doing PHONICs and colors/shapes and learning how to take directions.....he is doing WELL! he is also learning to write his letters....also, learning when i say a certain word, what letter does it start with (phonics) and 9 out of 10 he has it right!!! most of the phonics he KNOWS so we are going by a book and if he already knows them we review it and then we work on writing the letter and also finding things in the house with that letter....FUN!!! and he get's tired after that time spent soooo he moves onto the computer for about another 30-45 mins and he gets to PLAY on it with games that teach him phonics and such!! very nice!! i am soooo happy he is advancing...he will ask me, "we have class today?" and like yesterday, we had a BUSY morning...had 3 different appts and running around so we didn't get back home till after 4pm...guess what he asked for?! CLASS!! toooooo cute!

i am bummed that i missed a seminar called HOMESCHOOLING 101 but james had a service call to do so i stayed home with the kids! i hope they have another one SOON!!

24 HOUR HALTER MONITOR...

yep, my boy will be doing the 24 hour halter monitor testing on MONDAY!! how i will keep him from pulling on them, i just don't know, ALTHOUGH, he is use to them from the numerous hospital stays, i think he will do just fine!! anyway, this came about because i called his cardiologist today to ask them about what happened late last month....i know, why NOW am i asking questions about what happened almost 30 days ago, right? well, i have been TRYING to find a sequence of events that may lead me to find out HOW and WHEN he will have another seizure! ok, i know it is far fetch but i can try, right?!

soooo, it started the last week of july (25th) and since he is now on the PULSE OX all night long due to his change in meds, i am able to monitor not only his oxygen sats but also his heart rate. well, during this night, his heart rate dropped down to the 40's and then dropping down EVEN LOWER into the 30's which then would set off the alarm which would then make his heart rate go up for a bit and then back down....well, this happend for about a WEEK or so and it lasted for MORE THAN 2 HOURS....i would just sit there just WATCHING and worrying about his heart rate (i actually woke him up a couple of times to try to get it back to normal...it would for a couple of sec then go right back down..) i was worried his heart would STOP!!! until it would FINALLY start to increase and then go back to semi normal (50's & 60's)... he did this for about a week and then BAM he had his big SEIZURE on wed the 2nd...during his nap so i don't know how low his heart rate was THEN!!!!!!! :( but the night before, his heart rate was down again...sooooo....is it a CLUE? i have been watching his heart rate every NIGHT and so far his heart rate has been his 'NORMAL' (60's &70's) but i am WATCHING!!!!!!!!

anyway, so i called his cardiologist and told them 'look, i know that i had called you about this a long time ago (a couple of months ago (he had been sick and i had him on the pulse ox) during his nap he was on the pulse ox...his alarm sounded (if HR drops below 40) which had NEVER happened before) and ya'll told me he was just asleep not to worry about it, BUT that time it only lasted a couple of minutes...well, it has happen again' i went on to explain what happend in july and then i told them, 'it's ok if you tell me that all is ok and it is NORMAL!!!' ....so, she said she would tell the dr and would call me back.....she did. she told me she had talked to the dr and he wants matthew to be on the 24 hour holster monitor (basically, cardiac monitor) to see what it records. i dont' know what is going to happen but i told james that it might not tell them anything since he is not doing it right now, you know?! I JUST PRAY THAT ALL WILL BE JUST FINE!!!!

HOMESCHOOLING....

have i said to anyone that i was going to HOMESCHOOL my boys?! well, i AM and i am SOOOO EXCITED BECAUSE OF IT!!! :) there is soooooo many new opportunities out there for homeschoolers it is UNBELIEVABLE!!! there are soooooo many families that are doing it now and sooooo many resources it is SOOOOO AMAZING!!! :) we officially started TODAY and we are really just doing our basic PRESCHOOL activities....we are really going over what we already know and also going over some phonics and such! we got a GREAT little activity book at SAMS club that we are just working on and then we also started the GET SET FOR SCHOOL by jan olsen book and that is COOL!!! we are learning how to do LINES and CIRCLES and such!! we are taking it REALLY SLOW right now and working our way up to a couple of hours a day! right now, we only worked on it for about 45 mins or so and he had a BLAST and he LOVED the idea of doing this at HOME!! :)

WELL, i had a discussion with a couple of my buddies about this subject and i was asked WHY i wanted to homeschool?! well, i have SEVERAL reason but here are just a few! i have been REALLY thinking about it lately because it is coming up sooooo soon! next year he would have started kindergarden!! wowowowowow!!

sooooo, one of the main reasons are that it I WILL BE TEACHING MY CHILD and i will know what is best for him! it will be a ONE ON ONE interaction which i KNOW he needs!!!!! especially since classrooms are usually 20+ kids in ONE CLASS!!! for my peace of mind, that is WAY TO MANY for 5 & 6 year old kiddos!! now, they brought up the point that i don't know how he will actually react to that many kids in one place but i would rather not chance him getting lost in the class!! OR stand out because he is soooooo overactive that he get slapped with a ADHD LABEL!! and i know it CAN happen!! but anyway, that is one BIG reason in my book! then there is what they are learning.......can you say prep for STANDARDIZED TEST?! the reason the whole year (not necessarily kinder but by 1st or 2nd grade) is spent working on this test so that they can pass it and get the FUNDING FOR THE SCHOOL!!!! yep, those test are nothing more than how the district gets their funding! if a child fails it, they don't get the money for that one!!! regardless, i am soooooooo against that standardized testing and feel it is sooooo wrong....
the pressure it puts on these LITTLE ONES is just soooooo wrong! a relative of mine said that she HATES theses tests and she is sooooooo nervous about them, she can't sleep or anything!!! now, did i mention she is only STARTING the FIFTH GRADE?!?!?! that is way toooo much pressure to put on these kids....think back to when YOU were in E-L-E-M-E-N-T-R-Y SCHOOL and try to remember how it was......can you picture it?!?!......i can and i sure don't remember having THAT pressure on me!!! and i remember there was RECESS (socialization) and that i didn't have to worry about any ol' test that scared me soooooooo much that i didn't even want to go to school during that time and i worried ALL YEAR LONG because i KNEW i had to pass it and the teachers had to push it on us!!! THANK GOD i didn't have any of that! now, mind you, this is for PUBLIC SCHOOL....private schools you don't have that ....

anyway, LOVE the thought that i will be giving my son the best education out there and that we will be doing it as a FAMILY.....i will know his LIMITS and i will know when to back off and start again another day.....he will know that his teacher LOVES HIM and worries and cares about HIM and what is going on. i can teach him values and how to be the BEST HE CAN BE!!

James is happy about this decision his only stipulation is that he WILL have social interaction and that will be no problem! we are going to enroll him in SPORTS and also there is his weekly PLAYGROUP and i will be looking into HOMESCHOOLING PLAYGROUPS too that offer FIELD TRIPS, CLASSES, ARTS/CRAFTS, etc and just social interaction with others that are homeschooling here in san antonio!! and there are HUNDREDS doing it!!!!! :) i found tons of support groups out there and playgroups! there is even a place that is a store FOR homeschoolers! there are FOOTBALL, SOCCER, BASEBALL, ETC teams that are for homeschoolers. they even have graduation classes and proms!! :) and because of the INTERNET, that much MORE is out there for the homeschooling family!!! i am excited!!
just check these sites out: san antonio homeschoolers , bookstore, support groups in sa

these are just A FEW out there.....soooo excited! he is doing SOOOOO WELL!!! :) there are tons more reasons to homeschool and i just BARELY touched on a few of them!! anyway,,,,

MY BIG BOY WELL TODDLER!!! :) :(

well, we had our well toddler check up today!! he did GREAT, i was soooo proud of him! he did NOT even fight it at all!! he told the dr whatever he needed to hear, his colors, his shapes, jumped on one foot, did his PIRATE thing with his eyesight, and then got his THREE SHOTS he cried sooooooo hard, poor baby but he did well afterwards!!

there was some highlights to his appt...he still has his HEART MURMUR!!!! yep, it is still there and now that matthew had a HEART DEFECT, we are going to look at it closely again!! we might need to take him for an ECHO soon...don't know! but that was aomething scary...

then, i had to call him back in because i forgot to ask him if he noticed that his right food went IN when he walks!!! so he came back in and checked him out and noticed it....he then put him on the bed and pushed his KNEES into his chest and rotated his legs in the hips.......HE GOT WHITE AND THEN RED!! his face was PRICELESS!!!!!! he was like OMG, I FELT IT CLICK AND IT WAS HORRIBLE!!!! he was like, did you see my face?!?!?!?!?! he said he was afraid to do it again because it was soooo bad!! he said that we needed to get that checked out ASAP and that that might be the reason he was turning in his foot (his LEFT side clicked) to compensate for what is going on with the LEFT side!!! i told him that when he was a baby, we took him to an ORTHO when he was about 9 months old and he did xrays and everything but while that dr HEARD/FELT IT , he said he would either be DOUBLE JOINTED or he will grow out of it....but dr g feels he needs to be looked at especially since it was SOOOO loud and he felt it!! so now we should have an appt soon with this!!

anyway, we also were shocked to find out that he is:
41 lbs (between the 75% & 90% !! i thought he was TOO thin!)
44" tall (75%)

so we need to watch his weight!! hehehehe! he said he was fine but that ONE pound too much this time around will be 5 lbs next time ETC....BUT overall it was a GREAT appt! he followed direction and helped the dr with his exam without the expected TEMPER TANTRUM!! i am sooooooooo proud of him! :)

what a GREAT WEEKEND!!!

wow, we had a GREAT WEEKEND! what did we do that was special.....NOTHING!! just be together as a family! that is one thing that i am BLESSED to have with my family and that is that we are ALWAYS wanting to be together....i truely enjoy just being with my men! it is so nice just to go somewhere to the store or just to stay home and enjoy the day....we went to a family function on sat in the afternoon and then on sunday we went fishing at calaveras and then went to a new flea market! very nice! just us time. we were suppose to go to a benefit tribute to ROCKY MORALES but there was more DRAMA in the family and we felt it was best not to go....we had our hopes up and were sooooo excited to go but instead we did the flea market and then picked up our niece and nephew and took them all for lunch at CHACHOS & CHALUCHIES! what a FUN PLACE!! GOOOOOOOD TOOO!!! :)

now we are home and i am watching my 2 babies enjoy some DREAM FILLED NAP time!!! :) very nice to sit here watching MY tv and watching my boys sleep! james went with his buddy FISHING again! i am soooo happy for him when he get's to go! i know he LOVES IT SOOOO MUCH!!! something i am happy for is that when he was gone to AUSTIN for 2 weeks he fished EVERYDAY that he was there!! fun for him!

we just found out that he is going to school again for another MOS!!! we are soooo excited because that means that is one more MOS that he can use to transfer somewhere within the AGR!!! in other words.....JOB SECURITY!!! :) i am soooo PROUD OF MY MAN!! :)

HAPPY 4TH BIRTHDAY, JAMES ALEX II!!

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wow, i can't believe that TODAY our little boy is now FOUR YEARS OLD!! ooooohhhhh, how time has FLOWN!! we have been BLESSED with FOUR beautiful years with him and we just continue to be AMAZED at how AWESOME it feels to be mommy and daddy and brother to ALEX!! who could have EVER known that i would be blessed with such a beautiful child? He is amazing, strong, loving, beautiful, giving and such a GREAT BIG BROTHER!!! i just am amazed that he is who he is! he has been sooooo strong these last 2 years with everything that we have had to go thru with his brother and he has held STRONG.....he has just loved his brother thru it all. He has been soooooo aware of all the challenges we have faced as a family and he, even for his small age, has been ok with it all....these last 2 years i have felt SOOOOO PROUD of him because he has been such a GOOD BROTHER....he really has! WE JUST LOVE HIM SOOOO MUCH!!

WELL, i wanted to tell you the story of JAMES ALEX II....it is also a very special story! some of you may know it, other may never have heard the story. james and i had been married for 2 years when we decided we were going to start trying for a family. we were sooooo excited and READY!! well, as the months went by, it just seemed like it would NEVER HAPPEN!! and finally, IT DID! we got pg in july 2000! we were so happy and excited and feeling BLESSED....unfortunatly, in AUG 2000, we lost our little one via miscarriage...we were sooo sad but we just believed that when GOD thought it would be the RIGHT TIME, we would be BLESSED WITH A BABY! sooo, we continued on and went to see a doctor about it. well, we found out we needed a little bit of help. he started us on some medications and that following month we again BLESSED with another PG...unfortunatly, we miscarried again in MARCH 2001....AGAIN, we left it up to GOD and just decided to wait and see and just keep trying and praying. the doctor decided we needed a bit of a break and he scheduled another visit with him in dec 6, 2001 to see what needed to be done. well, as we all know, SEPT 11, 2001 happened and things became very scary all around the world. well, james was placed on ALERT with the national guard do to all the upgraded security. during thanksgiving weekend, we decided to go downtown to see the LIGHTING OF THE CHRISTMAS TREE in downtown san antonio the DAY AFTER THANKSGIVING. it was a GREAT TIME and we took our nieces and nephew out with us. well, there just HAPPEN to be an EXHIBIT on AFRICAN FERTILITY GODS!!! ooooohhhhh!! well, you know me, i just HAD to go check them out! james was tooo funny! you signed your name in the BELIEVE IT OR NOT guest book for the GODS and then you were suppose to touch them and that was it. there was BUNCHES of people out there doing it, it was kinda funny! james was like, NO WAY! I AM NOT GOING TO TOUCH THEM!! he was really embarressed because of all the people! i was egging him on and finally he tapped it and took off! sooo, life moved on and on DEC 3rd, james recived word that he was ACTIVATED TO GO TO TEXARKANA!!! we were soooo sad because noone knew how long the activation was going to be and it was ALL OF A SUDDEN!! he had JUST transfered that month to that new unit and they got activiated!! he actually heard it from a buddy that called him to say that he saw it on the news that his new unit was activiated! he was like, "what?!?!" so the next day, he went over there (he had never been there before) and the troops were ALL OVER THE PLACE!!! in BDU's and he was in his civilian uniform!!! so he found someone and they said, "where is all your stuff?" he was like, "i never got a call!!" they said they had been looking for him! he had 1 hour to get home and PACK AND GET BACK!!! that quick!!! AND he was GONE!!! he left not really know if i was pg or not! but i decided to take a test the tuesday he was going to leave from over there and it came back with a FAINT POSITIVE!! i was cautiously thrilled, if there is such a thing! so, i was going to cancel the DEC 6th appt because i figured, he will not be here in town so there is no reason to see the dr about fertility! but i kept it and went over with the news that i had a FAINT POSITIVE!! well, dr was not sure if it was a false positive or not, he didn't think i was pg. so he sent me over to a US because of my previous history of 2 mc..it should just a sac and it was measuring REALLY SMALL for as far along as he thought i was given my last menstral cycle....he told me he was afraid it might be a BLIGHT OVUM again and that i would be MC again...he sent me over to get some blood work and if in 48 hours the HCG levels didnt' double, then we knew it would be a mc....well, they did NOT DOUBLE and they called me to tell me they wanted me to go for another US because they were going to see what was happening...well, the technician said that by now with the HCG levels i had, they HAD TO SEE A HEARTBEAT and if not, then we knew that there was going to a MC...i prayed soooo hard! and remember, i was BY MYSELF because james had already LEFT FOR TEXARKANA and we didn't want to tell anyone because of our previous MC and we didn't want to get our parents hopes up...i know, DUMB!! soooo, as the tech was looking around my tummy.....THERE IT WAS!!! A BEAUTIFUL HEARTBEAT!!!!!! i was soooooooo happy and i was crying and everything! i couldn't WAIT to tell james!!! so, the technician tells me, ok, we are done, get dressed and we will talk due dates etc....well, as i am sitting there, she tells me, "you are not as far along as we thought! you are only 5 weeks 5 days along!! not the 9 weeks we thought" i was laughing and saying that i thought i was not that far along (i have REALLY MESSED UP cycles and they can go from 28 days to over 50 days! i know, TMI) anyway, so we started talking and we started talking about the lights downtown and all and i asked her if she went to the RIPLEYS BELIEVE IT OR NOT museum? she said no, so i told her that we had gone down there and touched the fertility idol etc, the whole story...well, she said, " that is COOL!! so, what day did you go down there?" and i said, "the day after thanksgiving"...she said, "hmmmm.........." i said, "what?" she said, "what was the actual day?" and i said, "i don't remember, the day after thanksgiving"...so she sits there looking at her calender and looks up that day....and says, "WELL, THAT IS THE DAY YOU CONCIEVED!!!!" i could believe it!! i asked if she was sure, she said, "yep!! from the US, and you being 5 weeks 5 days, that is the EXACT day you concieved this baby!!!" i was laughing! she said, " i GOT to go tell your story!!!" soooo, JAMES ALEX was a RIPLEYS BELIEVE IT OR NOT story!! OF COURSE, we know that it was thru the GRACE OF GOD but man, what a COINCIDENCE!!!

and the story goes, i went on to have an UNEVENTFUL PREGNANCY....a GREAT TIME and i LOVED EVERY MINUTE OF IT!! james was away the WHOLE TIME in texarkana but i was able to go up a couple of time and him DOWN! we actually calcualted the number of days we actually saw each other and it was 31 days out of 9 months time!!! but anyway, i just PRAYED that james would make it for the delievery!! i actually PRAYED that my water bag would BREAK because, according to hospital rules, that was the ONLY TIME you could be admited!! before that, you would have to be 4 cm dialated to be admitted. james had to DRIVE 7 HOURS to get home so that was the reason for wanting that! anyway, so on the day of AUG 9, 2002, i woke up from a light sleep at 5 am and felt like i had peed on my self (tmi) and got up and decieded that NOPE, I THINK MY WATER HAD BROKE!! so, i called james and woke him up in TEXARKANA and he PANICKED!! it was sooooo funny! i told him, just get ready because i am going to go to the hospital and check to see if that is what happened....so, i took a shower, fed the dog and drove myself to the hospital....YES, MY MOM GOT UPSET AT ME FOR NOT CALLING...but i decided i didn't want to alarm anyone before i knew! so i get there and they do the test and YEP, MY WATER BROKE!!! so i called james and i told him COME ON OVER!! well, by then i called the family and they were all upset that i had driven myself there. i told them i was in NO DISTRESS and i was having no contractions.....so they started me on petocin and i just had to hang out....soooooo, the hours went by and nothing!! then james came in 7 hours later and WHAM!!! i started to FEEL THE CONTRACTIONS!! ouch! so, i was in labor for MORE THAN 32 HOURS and after all the time ( i finally got my EPI after BEGGING the drs!!) i had not dialated more than 3 cm so they decided to go for the C-SECTION because the baby was not tolerating the labor any more and his heartrate was starting to act up! soooo OFF WE GO! unfortunatly, the total epidural DID NOT WORK on my! i kept telling the anesthesiologist that i could FEEL THE LEFT SIDE!! he kept trying and by then, the surgeons started to cut and i LOST IT!! I COULD ACTUALLY FEEL THE KNIFE slicing in to me!!! the drs said, "you feeling pressure' i said, 'NO I FEEL THE CUT!!" and then they cut into the next layer and that is all i could remember!! he knocked me out!!!! and when i woke up i had a BEAUTIFUL TINY LITTLE BOY NAMED JAMES ALEX II and he weighed in at 5 lbs 13 oz 19.5" long!! he was a SMALL FRY!

ANYWAY, i just wanted to share with you our special boys BIRTHDAY STORY and to share with you a MONTAGE of him! just click on THIS LINK and view his montage!! enjoy the pictures!! http://www.onetruemedia.com/shared?p=ff0af...medium=text_urli hope you enjoy!

so again, HAPPY BIRTHDAY, JAMES ALEX THE 1st 2nd (that is how he says his name)!!

WE LOVE YOU AND ARE SOOOOO PROUD OF YOU!!

TONS OF LOVE,JAMES, MARIA AND BABY MATTHEW

spoke to his NEURO TODAY...

WELL, what can i say?! he basically said the same thing about matthew that dr R. said and that is that we are getting to the point where we don't have too many options on medication. we MIGHT do the VAGAL NERVE STIM because he said that it works on the type of seizures that matthew has (partial)....well, i am ALL FOR IT but of course, SCARED AS ALL HECK!!! that would mean another surgery!! he said that he thinks it would work on him.......i just THANK GOD that matthew has the mild case of it because i can ONLY IMAGINE when you have HUNDREDS OF SEIZURES in a day!!!! and it DOES HAPPEN, unfortunatly, to some kiddos!

anyway, we dropped one of his seizure meds in the am back down to 4 ml because it was making him WAY TO SLEEPY!! he would be playing with some toys and then he would just kinda keel over and fall asleep!! and he fought it SOOO HARD!! my poor kid! but now, it is alot better! we are just on watch for him as usual! he seems to be FINALLY getting over the virus he picked up! alex too! YEAH!!! WE shall see what comes next....i will get an appointment to see this J guy for the VAGAL NERVE stime and he will tell us more about it!! i just PRAY he has no more siezures!!! :)

what a GREAT PARTY!!

yep, we did it! we had JAMES ALEX the 1st 2nd's (that is how he says it!!) birthday party on sunday!! it went GREAT!!! really! and mr matthew MADE IT TO THE PARTY!! yeah! and of course, he had to get back at big brother by SPILLING HIS JUICE ON ALEX!! stinker! but all in all, we had a blast! there was about 20 kiddos there with about another 10-15 parents...very nice! we had it at the MR GATTI'S place and it was GREAT not to have to worry about anything! i really enjoyed how ATTENTIVE the party hosts were! they brought you whatever you needed and wanted! I HIGHLY RECOMMEND A GATTI PARTY! really, the kids all stayed in the room until it was time to go out to the game room. i really needed that or alex would not WANT to be with the party and instead want to be out in the playroom. with this room, you couldn't see the game area....VERY NICE!! and then the host got you whatever you wanted!! really! they asked us if we wanted drinks, if we wanted pizza and they asked our guest the same! very nice to be waited on!! alex got some GREAT stuff from all his friends and family. we just really had a great time. i am just sad that james had to meet us there and then leave because he was actually WORKING that day!!! but he helped out TONS and we just had a GREAT party! the theme was THOMAS THE TRAIN and it was soooo much fun! his cake was GREAT TOO!!!

anyway, the kids had a BLAST at the game room and THIS gatti's actually has a TRAIN that goes around the track and sit about 10 kids on it and has a tunnel and everything!! matthew and alex LOVED IT!!!!!! looks like the other kids had a great time too!! :)

ANOTHER BIG SIEZURE...in picu...

well, i think i jinxed matthew!!! :( matthew started to get a bit congested back on thursday (wow a week ago) and i started him on some over the counter meds...monday came around and i decided to take him to the drs just to be sure....he heard wheezing so we started him up on neb treatments and increase inhaled steroids....then i did it....i told the dr, "look, i don't want to be in the hospital this weekend because matthew has NEVER been to a party for big brother and i REALLY want him to be there!!" of course he said, don't tell me that!! but he wanted to see him on wed just to see what was happening to him by then. well, all was going as well as can be expected and on wed, when i went to put matthew down for his nap, it happened....HE HAD ANOTHER BIG SEIZURE!!!! yep, i was down stairs after having JUST put him down and i was on the phone with james. i have a VIDEO MONITOR (THANK GOD because i would NOT have known anything was wrong without it!) so i was downstairs watching him when i just KNEW that something was wrong, i ran upstair and BAMM!! he was drooling uncontrolably and seizing!!! i told james TIME IT! so we did...after 5 mins, i gave him his DIASTAT and then after another 4 mins i called EMS....of course james is at work and i look outside and there is NOBODY at our neighbors houses!!! so figure i will just have to follow over there. so EMS came in and they asked if i was ready and i said YES BUT I HAVE TO TAKE MY SON, and they said, "can't the lady downstair watch him?!" i was like, "WHAT?!?! WHO?!?!" it was my WONDERFUL neighbor who had just driven up and came over right away after seeing EMS!! anyway, i left and we went CODE 3 because his o2 sats were HORRIBLE and his CO2 readings where REALLY BAD....i told him that he likes to stop breathing when he seizes like this...so we get there and he is STILL SEIZING and the team comes around him and start doing all the things they do sooooo AWESOME.....they start to bag him almost as soon as we get there because he has NO AIR MOVEMENT...they bagged him for like 20 mins and then the decided to do the BIPAP instead of intubating him and see how he did....he did OK but they were going to wait 15 more min and if he didn't start to breath on his own, they were going to intubate him.....well, he DID! :) but they kept him on the bipap for about 4 hours and then they took him off. he was SOOOOO CLOSE to putting him on the VENT....soooooo close! but THANK GOD they kept him like that on the bipap. they gave him FOUR doses of ADIVANT and some other seizure med while we were down at the ER. he also started seizing again after about an HOUR down in the er...poor kid. they were also FULL at PICU so they were going to move us to another HOSPITAL but then when they called to PICU to check on a bed they were told they were full but then they told them it was matthew and they said, HOLD ON....WE GOT ONE!! they moved us in with another pt for a bit until he left to another floor!!

anyway, so we are STILL in PICU. we got here at NOON YESTERDAY and today, after talking to this WONDERFUL new neurologist that works for matthews neurologist (marcy & jane, the one you told me about) DR. R. we are going to do a MRI today and see what happens. he gave a GREAT theory about what COULD be happening.. he said that matthew was in that 10% of epilepsy that show NORMAL EEGS all the time....he said that since matthew has had so many DIFFERENT drugs and he is STILL having them, he is getting LESS and LESS of a chance that drugs will do the trick. he said you have a 70% chance with the 1 st drug for it to work, and with each additional drug it like a 5% chance or something.....he said that matthew is getting to where they might not work for him....so, he talked about the VAGAL STIMULATOR surgery...i said, well, if it needs to, and we have to, and it WORKS, we will! don't know what will happen with that! anyway, back to the theory....he said that matthew MAY have had a stroke/bleed but DEEP in his brain A LONG TIME AGO so that NOW when he is really starting to catch up and develope, (crawling, walking, standing, sitting), that RIGHT SIDE of his brain and where ever that stroke was, it is TRYING to fire up and get moving where it never had to before since he was sooooo behind that now, it is triggering these seizures! and it makes SENSE because his FIRST seizre like this was back in AUG 05, then he started having mini ones in JAN right before/after he started sitting and then he had a MAJOR one in MAY 06 again, and then after that he started to go from floor to sitting, then JUNE 06, another one and then he started to get into the crawl position RIGHT after that and now he is really working on crawling/standing/walking everything soooooo it makes sense that his little brain is working overtime and maybe in that specific area where it happened!! SOOOOO, this dr is going to do the MRI and see if he can see SOMETHING....GOD WILLING we can find out WHAT is causing them AND IF they can be controlled....so we increased his meds AGAIN for the 3 or 4 th time in 2 months....poor baby! but he sure was a STINKER LAST NIGHT...he was WIDE AWAKE from midnight to 7am in the MORNING!!! and of course, mom was awake with him!!! i think i had 1 hour of sleep! and of course he wanted to PLAY and try to grab and take off his leads and iv's etc! STINKER!!! so now he is TIRED but he has his MRI later this afternoon and we will be here at least ONE MORE NIGHT....GOD WILLING that is all!

soooooo....any good THOUGHTS AND PRAYERS we will be THANKFUL FOR!! he still has an IV going and we are still in PICU but he is loving all the attention of the staff that is around him. he looks GREAT a little tired but hey, when you party hard for 7 hours in the wee morning, you HAVE to look like that! it is nice to see soooo many of our old pals from PICU!!

well, thanks again for any thoughts and prayers for matthew. HOPEFULLY, we will be home tomorrow at the VERY LATEST! just in time for my poss rootcanal and crown!! WWWOOOOOOHHHHHOOOOO!! not! :(

take care everyone and GOD BLESS...,
LOVE,
MARIA, JAMES, ALEX AND MATTHEW

MOM'S BLOG with new pics of matthew & alex SWIMMING!

MATTHEWS WEBPAGE

ALEX WEBPAGE will be updating REALLY SOON!!

sick :(

yep, it is here and it is only AUGUST!! we have been doing a LOT of traveling and a LOT of going to children places and i guess we must have caught SOMETHING somewhere!! matthew and i have had the noses and throat and drainage going now for a couple of days! i thought it was allergies, which it MIGHT have been but matthew has got that worst of it now. we had to go to the DR yesterday because he has been waking up and coughing, gaging, wretchin AND THROWING UP all night long!!!! my poor baby! so i had called them on friday and they just told me to give him some over the counter meds...they didn't work! so yesterday i just said, i will take him just to get him checked out and hopefully he will tell me, YEP, I SEE DRAINAGE, JUST GIVE HIM XXXX AND HE WILL BE FINE......didn't go that way!! his oxygen sats have been GREAT so i didn't think i had anything to worry about.....NOT!!! he heard serious wheezing in the lower right lob of his lung!! talked about SHOCKED!!! crazy! i even asked the dr, ARE YOU SERIOUS?!?! soooo, now we have to give him neb treatments 3 times a day and increased his FLOVENT to 3 TIMES A DAY and just suction and watch him...we go back tomorrow to see how he is doing. he said he doesn't THINK it is pneumonia since he doesn't have any fever but he wants to keep a CLOSE EYE ON HIM!! i told him, "look, PLEASE let him be HOME this weekend because he has NEVER BEEN TO A PARTY FOR ALEX!!!'" he said, MOM, DON'T TELL ME THAT!!! soooo, i have it in him NOT to have him in the hosp this weekend!! :) yep, matthew has never been to a party for alex!! :( so GOD WILLING this weekend, he will be there! you should have seen my face when matthew started to get sick!! i was like, NO WAY!! NOT AGAIN!! :( but GOD WILLING, he will be there having FUN at the party!! :) we were up ALL NIGHT last night with him...he must have refluxed and thrown up at LEAST 5 tmes!!!....keep him in thought please!! :)