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Matthew's MAKE-A-WISH TRIP!

Matthew's MAKE-A-WISH TRIP!
Wishes DO come true...our FAMILY in FLORIDA!! :)

Wednesday, November 01, 2006

FAMILY UPDATE....long

hello everyone!

we hope everyone is doing GREAT and those that celebrated had FUN this past halloween day! WE DID! :) it was really a nice day. we didn't know WHERE we were going to be celebrating this day but we knew, where EVER it was, we WERE going to be doing it!! and there were TONS of kids in our neighborhood. ..just to give you an IDEA of how many there might have been, when we first got to this neighborhood we actually counted the number of kids and there was OVER THREE HUNDRED kids that came to our home!!! and there was just about that many this year!! they are EVERYWHERE!! ! :) NEAT TO SEE!

well, it has been a while since i last wrote an update (if you read my BLOG this might be more of a recap for you!). it has been a LONG and very SICK times this last sept/oct months. and here we are in nov SICK AGAIN!! well, in sept, we had that big seizure on labor day which he decided to pick up a virus that stayed with us for a MONTH AND A HALF! we actually went into the hospital 9/26 -9/28 to try and get him well....it didn't work and we were sent home only to be BACK in the hospital on 10/1/06 due to another almost 2 hour seizure. this time, well, he actually had to be placed on a vent...that was DEFINETLY a scary sight to see!! but we were sent home that tues to get ready for our BIG appt to see the SURGEON for the VNS SURGERY....for a bit there, i had soooo excited to be doing this surgery because it meant the POSSIBILITY of matthew not having any more seizures or at least having some of his seizure meds REDUCED....but then, i started to have some thoughts that
maybe that WAS NOT THE ANSWER to his problems...i just started to feel like SOMEONE was telling me that we were jumping into something that we did not need to be doing right at that momemt....well, then we had that big seizure on 10/1 and then our appt was that wed....well, i come home on that tues from the hospital to find a message saying that the insurance part of it was all messed up and if it was not corrected then it would NOT HAPPEN and need to be rescheduled. ..i took it for a sign that i was RIGHT that it might not be the time for it. well, i was able to get it all straighten out with the help of 2 AWESOME drs offices....we went to the appt and after a "hi, how are you" begining, he started to ask his question (the surgeon)..I think it was his 2ND question and it went something like this, "DOES MATTHEW HAVE ANY HEART RATE PROBLEMS?" i was like, "HMMMM, WELL, BEFORE HIS SEIZURE, HIS HEART RATE DROPS INTO THE 30'S-40'S" and his face said it all!! he was like,
"uh-huh....well, i don't know if this will be happening then!!!" apparently when this device delivers it's jolt to the vagal nerve, it DROPS THE HEART RATE and if his heart rate was ALREADY down because of his autonomic response, it would STOP HIS HEART!!!! ok, that was BASICALLY the end of the appt for ME and for the dr!! he was like, ok, i don't think i want to CHANCE doing the surgery on this little guy! i was like, i don't think and i KNOW i don't WANT you to do the surgery for this little guy!!!!!! no way! he told me that if for some reason we had done the surgery knowing this (even though he said that he did NOT want to take the case) he would need to prescribe ME some meds because i would be TERRIFIED and on edge with the whole thing!!!! i can't imagine the thoughts that would be running thru my head if that was the case!!! he said he wanted to get a work up on matthew from his cardiologist to check things out but he said it was pretty sure NOT the time for
it to happen!! i thought to myself, THANK YOU GOD!! he was SHOWING me that very thing when he started to put those thoughts in my head that MAYBE it was not the right thing to do right now....and then when i got the appt anyway, GOD was like, "ok, here is the REASON i don't want him to have the surgery".... i have always felt that there are reasons for everything and he sure was making sure i knew WHY....sooo, that was the END of that subject!!! we are now looking at the KETOGENIC diet for him...still have not started it but we will be...i think! anyway, i am looking into another area that our ot showed us...apparently there is this dr in NEW YORK that did a study on a pt that was thought to have seizures and presented almost EXACTLY the symptoms that matthew has (only during sleep, normal EEGS, nothing helping, HEART RATE ISSUES) AND this dr after doing studys and such found out that they were not actually seizure but were CAUSED BY THE HEART and after inplacing a
PACEMAKER on his heart.....HIS SEIZURES WENT AWAY and he was off all seizure meds!!! hmmmmmmmmmm. .....sooo, i am researching this and GOD WILLING will find SOMETHING that SOMEONE will look at and maybe gives some options!!! :)

soooooo, continuing on, matthew was STILL a very sick little boy....very congested and he had a round of TWO WEEKS of oral steroids that DID NOT HELP!! poor kid! soooo, the week of the 12th of oct we went to the pulmonolgist for another check up...well, he still sounded like a "washing machine" and they prescribed a NEW oral daily inhaler called ADVAIR HFA 115/21 (it had JUST been approved THAT week) and after 3 days on it, he was CLEAR AGAIN!!!!! wowowowowowowow. ..thank you GOD!! anyway, so life continued and we have been enjoying matthew and alex and the fall weather...well, matthew is getting stronger, i just wish he kept HEALTHY! he is really working on moving around with his frog hop/crawl that he is doing....he is getting into EVERYTHING (if you have not been to my blog, there is a video of him getting into his fav thing!) and he just got his new AFOS yestereday!! and just so you know, AFO's help him keep his feet planted CORRECTLY and help him with his
standing! they are BRACES. anyway, all was going well. we have been REALLY BUSY this past month of oct!! BASS PRO SHOP opened up here in san antonio and you probably don't have to guess very far as to WHO was there on opening day?!? yep, WE WERE!! james couldn't stop grinning!!! he LOVES that place!! anyway, there are some cute pics of the boys on the BLOG!! well, this past weekend, we had another interesting day. on friday, 27th, matthew has started getting a bit sick so we were watching him and giving him treatments etc for his coughing and congestion.. .by sat, he was running a fever and really looking and feeling SICK! well, sat night, at 11:30pm, james wakes me up ( i guess i had FINALLY dosed off) and he tells me, matthew is refluxing! so he started the suction pump and then he yells out, "OMG, HE IS BURNING UP!!" i was like, WHAT?!?! so we took his temp (ear) and he kept getting temps of 105, 106, 104...i was like NO WAY!!!! so i got another therm out
and took a temp under his arm and it was at 105.3!!!!!!! !!!!!!!!! !!! i was like FREAKING OUT!! so we gave him tylenol and we started to bath him with water...his heart rate was in the 200's and oxygen sats were about 90 on 2 liter of oxygen, he was grunting and moaning and his eyes were rolling back!!! i had to call EMS....i was sooooo afraid he was going to have a seizure! (i had visions of a friend of ours little boy that had a high temp and then had a seizure and was set back pretty far!!!) sooo, they took us to the er (103.8) and we were given some IV antibiotics and where put on oxygen and then given some antibiotics to take home and we were sent home! all his test came back negative so they think it was the start of a virus...although his white count(?) showed signs of a bacteria infection?! anyway, we are home and he is SOOOO CONGESTED with tons of goo coming out of his nose and his mouth! poor baby! he is SOMETIMES is using oxygen when he sleeps but overall
he is doing ok. you can tell he doesn't feel good because he looks like he wants to SLEEP!!! :( i just HOPE that he gets over this and that he STOPS GETTING SICK!! i guess this shows us that as MUCH as we want to act like a "normal" family and do things like playgrounds/ parks with him and be around other kiddos, we just CAN'T!!! he is still so fragile and he just gets sick!! i sure don't want him to BE SICK!! soooo, we are back on our neccesary precautions! !! no help for it! but that is OK with us! this week we go see our cardiologist and i am going to ask him about his HEARTRATE and seizure issue...we shall see what he has to say!

on the developmental front, well, he is MOVING ALONG!!!!! he IS improving... we went to see our DEVELOPMENTAL DOCTOR yesterday and he was REALLY IMPRESSED with how much he has IMPROVED!! he saw him back in JAN and he is just soooooo excited to see how well he is doing! he did say the same thing that ECI said about his MOTOR development is what is holding back his score. he KNOWS what he needs to do and wants to do but because he is still so wobbly and so unstable, it is very hard for him to do it. he said that once he gets stronger he should catch up nicely!!! he said that we should just keep doing what we are doing!! he also said that he can see him THINKING IT THRU and all the things that require him to THINK he does well but it is just the motor ones that he can't do. but he is MOVING!!! well, to move on, we are now doing PT TWICE A WEEK!!! :) that should help him out. the PT said that she wants to do that be cause he DEFINETLY shows potential and she wants to
tap into that!! we are also going to get him a KORNER CHAIR & his GAIT TRAINER....that should help him somewhat!! sooooo excited!

onto alex, well, alex is doing being....... ALEX! he is testing us like never before. i have to ask, WHAT IS IT ABOUT THE 2'S?!?!?! is this going to be the norm EVERY 2 YEARS?! when he turned 2, it was like a switched turned on and he went from being such a good little boy to the TERRIBLE TWOS!!! then same thing going from 3 to 4...WOWOWOWOWOW! ! he is talking back and yelling and throwing fits and just CRAZY!! freaking me out!! he is sooooo smart that we have to watch him! he talks back to us now when he doesn't get his way!! i am like, WHAT IS GOING ON!! i know A LOT of it has to do with him not taking a nap anymore and him being SOOOOOOO TIRED by the time james walks in. he is soooo tired that see dad is just toooooo much for him! he will jsut become a WILD CHILD!!! but then he can turn it around and woo you!! SILLY BOY! well, he is doing GREAT on his school! actually, alot of the materials in his books for pre-school levels are more of a review for him!! he knows how to write the alphabet in both upper and lower case and he has the concepts down of shapes/what' s missing/ patterns/ phonics/etc. ...he is LEARNING how to spell by sounding out the phonics of a word....we are now working on numbers & simple add/subtract type of things..learning how to tell time...he is learning spanish too! he is doing REALLY GREAT!! he is such a smart little boy....i am sooooooo PROUD OF HIM!! and of course him on the computer, he just goes to it and turns it on and waits for it to boot up, goes to his user name, waits for everything to load, clicks on internet explorer, opens whatever webpage he wants to do and goes to town!! ALL ON HIS OWN!!! he has his own favorites with all of his fav/approved sites on it and he just picks and choses what he wants to play!!! he is soooo awesome! but now i have a tool to take away whenever he starts to act up! he actually went over a week with out it because he threw some fits and i had to take it
away and he couldn't get it back until he had 2 days of being "good"...anyway, he is really doing AWESOME and he is just being a GREAT BIG BROTHER!! he has had to go to all of the appts with me and he is sooooo well behaved!! the drs and nurses are AMAZED!!!

and james is doing great too. we just got some news that are kinda scary....we just found out that he is slated to be deployed overseas sometime between jan/march... .wowowow. ..well, i KNEW that someday he would have to go but i SURE wish it was when the boys were a BIT OLDER and matthew a BIT healthier!!! they actually said, "you and so-so are going, so you are going to the SRP"....they are TRYING to get him out of it but he told me that it could look bad for him if he does that because then they MIGHT not re-enlist him for being NONDEPOYABLE. ...we DEFIENTLY don't want to be kicked out of the military for that.....he asked me, what i am going to do if he does go? well, what can i do but SURVIVE and HANDLE IT!! and i know i can! it would be hard but i know i can do it! and i already have a plan down if GOD FORBID matthew has to be in the hospital and james would not be here, i would have alex with me during that time....i wouldn't be able to leave him because i KNOW he would be DEVESTATED not having his daddy home and then for matthew and i to leave...i don't know how he would handle it! and he always does sooooo good at the hosptial, i wouldn't be afraid of that....soooo, please say a prayer that whatever will happen that it all goes well!! i don't want james to go but we don't get much choice, he is MILITARY and i am ALWAYS aware of that fact....and i am PROUD to be MILITARY!!! i couldn't imagine it any other way!

soooo, down to me...i am doing well. i have whatever alex and matthew has! so i am dealing with it! my fibro has been REALLY BAD the last couple of weeks...i have been really hurting and sometimes having a hard time walking..i am EXHAUSTED and just ache aaaallllllll over!! sometimes it is REALLY hard for me to carry matthew up the stairs....he is getting heavier and my back problems get pretty bad. i had a fibro "whiplash" there for a while (that is where your BACK has this pain just like whiplash and you can't move really...you are STIFF and gives off SHARP PAINS if you move a certain way) and that was EXCRUSIATING PAIN where i could not turn a certain way and i couldn't turn my back a certain way and i DEFIENTLY could BARELY pick up matthew...that was REALLY HARD...i actually had to take my muscle relaxers that time (i took 800mg of motrin and it didn't even TOUCH the pain!) and i HATE to take muscle relaxers because i am soooo out of it afterwards and all the next
day! i only take them when i ABSOLUTELY have to because of matthew. the couch is really comfy for me and is actually helped me to catch a couple of zzzzzz's at night! i don't know what it is aobut the loveseat but i sleep better on it! maybe because i am not laying FLAT?! anyway, i am just tired. sad for my little man matthew and worried about my BIG man james and hanging in there with my four year old too!!!

soooo, i hope that this email finds everyone doing GREAT and everyone is getting ready for THANKSGIVING! ! can you believe the HOLIDAY SEASON is coming up?!??! amazing how times FLIES!!! well, i didn't get to get the PUMPKIN PATCH pictures this year because i PROCRASTINATED and we had sooo much do each and every weekend that we said, "the last weekend before halloween we will go..." well, we all know what happen then!! MATTHEW WAS SICK sooooo there went the PICS! :( but we did get some of the boys trick or treating so i will attach them! and there are MORE PICS in the FLICKR account on the side of my BLOG that i uploaded recently.... please feel free to check them out! so here are some pics of the boys during halloween!! please just click on the link and it should take you there!!

HERE IS THE PICTURE OF THE BOYS WITH THEIR PUMPKIN!
http://img316.imageshack.us/img316/3613/dscn0155qk9.jpg

HERE IS THE PICTURE OF THE BOYS TRICK OR TREATING!!
http://img316.imageshack.us/img316/74/dscn0156yx7.jpg

BOYS GOING AROUND THE NEIGHBORHOOD!
http://img316.imageshack.us/img316/8683/dscn0159qq3.jpg

AT HOME HANDING OUT CANDIES!!
http://img316.imageshack.us/img316/3620/dscn0166su2.jpg


oooohhhhh, and he is now in GOOGLE!!!! yep, if you google the words MATTHEW ISAIAH he comes up!! :) hey, what does THAT mean? i just thought that was COOL!!!

anyway, i hope all is going well....we have been hanging in there and just ENJOYING life....we LOVE to hear from everyone whenever you email...it is sooooo special to us to have ya'll email us! THANK YOU!

we are PRAYING right now that these last 2 months are NOT an indication of what is to come this winter season for matthew....i continue to PRAY AND PRAY that his SEIZURES continue to stay away! i now pray over him and just say " IN JESUS NAME YOU WILL NOT HAVE A SEIZURE " and he WILL NOT HAVE ONE!! i have to believe that! i have somehow lost how POWERFUL complete faith in GOD is....what MIRACLES can happen... does that make any sense? all i have to do is REMEMBER and REFLECT what a MIRACLE he performed on my matthew back when he was born and EVERY DAY SINCE! i watch his montage EVERYDAY to remind me of WHAT A MIRACLE i have in him!!!

well, don't forget you can keep up with the GONZALEZ clan on our BLOG www.blessingsinmylife.blogspot. com i am always updating it with what is going on with us all....i also try to add pics to the blog and FLICKR photos!

ooooohhhh, before i forget...the CHD QUILT will be showing in HOUSTON, TX this weekend coming up. The CHD Heart Quilts have been invited to have a booth at the International Quilt Festival in Houston , Texas , November 2-5, 2006 . The event will be held at the George Brown convention center. We will be in the Special Exhibit Section. MATTHEWS QUILT will be there #37!! so anyone near and around houston, please go check it out and if you happen to be there can you take a picture for us?! wish we could go but james will be doing national guard drill that weekend...

well, TAKE CARE everyone and we pray that everyone continues doing well....know that we LOVE to hear from anyone and everyone!! it is great to keep in touch!

ok, take care and GOD BLESS...

LOVE,
JAMES, MARIA, ALEX AND MATTHEW

www.babiesonline.com/babies/m/miraclematthew
www.babiesonline.com/babies/b/babyalexii
www.blessingsinmylife.blogspot.com

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