SYNOVIAL SARCOMA.....

ok...wowow....that is the diagnosis i JUST got from my ORTHOPEDICS ONCOLOGIST...we had an appt on july 5th and he said that he was very certain that it was NOT cancer and although he thought that the BIOPSY that was done was INCONCLUSIVE, he felt that it was NOT cancer since i had had it for over 5 years, he felt that it PROBABLY was NOT cancer but that we had to get it out...i was kinda upset at him because he said that it PROBABLY would not hurt and PROBABLY not help with the PAIN and that it should all be ok...i told him that i though i was on a nerve?! and he said he didn't think that at all...i told him that we shall see....

SOOOOO, AT 1600, the dr called me to let e know that he had shown HIS pathologist the biopsy and the pathologist said that it didn't look right so she decided to test it using a certain DYE TEST and he said it was very simple test...inject the cells and if they 'TURNED' it was POSITIVE...if it didn't, it was NEGATIVE...he said it turned IMMEDIATELY! so, he called me to let me know that instead of NO CANCER...i have been diagnosed with SYNOVIAL SARCOMA...and it is an aggressive type of cancer...sooooo, i WAS scheduled for surgery on the 31st to get it removed...now it has been moved up to the 24th AND i am having a PET SCAN to see if there is any more cancer anywhere else in my body....

soooo, am i ok with this? am i in shock? no,i am not in shock and i am as ok as i can be.... i had actually had a conversation with a friend TODAY about this particular subject that i was going to have a SERIOUS conversation with the surgeon to let him know not to be SURPRISED if it turned out to be MORE than the simple thing he was thinking and that it WAS ON THE NERVE not like he said he thought it was NOT....funny, huh? i guess GOD was giving me a gentle hint on this!! :)

sooo, GOD IS SOOOO GOD because while on the phone with me, he texted my other ortho oncologist at SAMMC to see how soon i could get my PET SCAN and i said that i would be surprised if i got it really soon, so he said he would text him to let him know what was going on....i hung up with the dr and within 15 MINUTES, the dr at SAMMC CALLS ME and said to come on in TOMORROW AT 0730 FOR A PET TEST!!!!!!!!! wowowowow, GOD IS SOOO GOOD! i have really been soooo blessed that things have really run smoothly with all of this and no real wait time with any of this...he also said that i should go have a 'punching session at all the military drs/bases' that had diagnosised me for that last 5+ years with TENNIS ELBOW and that i could start with HIM TOMORROW and it would be ok to give him a punch!!! such a good man....

soooo, any prayers or thought would be GREATLY APPRECIATED!! tomorrow, i have the PET SCAN AND I AM PRAYING AND ASKING FOR PRAYERS that there is no OTHER cancer spread thru my body....

I KNOW GOD IS GOOD AND HE IS HERE WITH ME AND MY FAMILY AND HE WILL SEE ME THRU!!! HE ALONG WITH ALL OF MY FAMILY AND FRIENDS IN PRAYER ARE WHAT WILL JUST BRING ME THRU THIS TIME AS HE HAS SEEN ME THRU MY LIFE!! THANK YOU GOD FOR ALWAYS BEING BY MY SIDE!!!

NOT CANCER!!!!

THANK YOU GOD, i got the call from the PA from the ORTHOPEDIC ONCOLOGIST to let me know that they got the results from my BIOPSY OF MY FOREARM and it was NOT CANCER!!! WOWOWOWOWOWOW!! sooo thankful and sooo happy!! BUT i DO have a TUMOR and it is called a PERINEUROMA and i will have to have it removed. so, next week, they are going to have a ROUNDHOUSE MEETING with the ortho dr and all the other drs involved in my care and then they are ALL going over to the UNIVERSITY hospital to meet with the NERVE TUMOR DOCTORS there to let them see my case and see how they are going to achieve this. the PA told me that it is very delicate because they are going to try not to have me lose SENSATION in the arm or FUNCTION of the arm because of where the tumor is!!!! YIKES! so, i am to call the PA again on tuesday to find out what was said and where i am going from here. i am just SOOO HAPPY that SOMETHING i finally going to get DONE to my arm! it has hurt sooooo bad like for over 5 years and it has progressively gotten WORST so that it affects my everyday LIFE!! SO i am happy to get a move on here....but THANK YOU GOD first and for most because it is NOT CANCER!!! WOOOHOOO!! :)

OUR MIRACLE...MAY 27TH will always be....

the day that a MIRACLE was shown to us in MATTHEW ISAIAH...u know, i was going thru my blog looking for the story of our son and yes, i found the one of his birthday and the sadness of MAY 26TH but nothing on MAY 27TH!! and that is when our life looked soooo much better!! you see, MAY 27TH will always be a SPECIAL DAY for our family because THAT is the day that GOD gave us our MIRACLE in MATTHEW back! on THIS day, at MAY 27TH, 2004 @ 0200, james and i, after having passed him back and forth between us on that pillow to keep him still....we FINALLY put him BACK in his little warmer bed in PICU #18 because we were soooooooo tired and we were afraid to drop him! it took 4 people to get him in bed...he had 14 medication drips, a ventilator & so many other wires on him that you could not see the baby!!!! but we gently put him down...we kept talking to the nurses that whole night trying to find out what was going on. you see, everyone was soooooo POSITIVE that he would not make it thru the night and here we were already on the NEXT day and he was still holding strong. i remember the nurse telling me that he would just slowly stop being there...all his organs would start failing and then his little heart would stop...well, his heart rate when they first took him off of ECMO was WAY UP in the 200's and as the day went by, his little heart rate started to drop. i remember watching and just worrying when it would just STOP. and here we were, on THURSDAY MAY27th at 0200 in the morning, just so tired and so anxious about how it would happen and finally, putting the baby down and just sitting there in the rocking chair, with my legs SOOOO SWOLLEN and my back KILLING me after having had my c-section only 5 days before....with james by my side in a chair both of us EXHAUSTED and just so mentally DRAINED because we had been thru sooooo much these last 5+ days...with the BIRTH of our little boy MATTHEW ISAIAH, finding out about his heart and other issues, the ups and downs of his life....and now, just sitting here by his bedside, WAITING for the moment that according to ALL the doctors would come...i remember just watching those monitors and seeing all those lines and numbers and looking around his bed and seeing all his diffent pumps hanging from the iv poles and his ventilator....and then finally closing my eyes that were SOOOOOO tired and putting my head back on the wooden rocking chair and falling asleep.....

and then WAKING UP, in a PANIC worried that i had somehow MISSED the whole event and the last few minutes of his life.... and then hearing something right next to me and it was the NEW nurse on her shift (0630) and she was going over all of matthew and looking at his lines and his body and i remember jumping up and asking "is he ok?" and she saying "GOOD MORNING" with a big smile and she saying "he is doing fine!"...never THINKING i would hear those words about matthew and here she was saying that!! she said "LOOK!!!" and i REALLY looked at him and saw that his skin was not as blue as it was the day before...and HIS EYES WERE OPEN!!!! and just then, DR S. walking in and standing at the door, with his hands on his HIP and his HIP cocked to the side STARING at the monitors....and i remember, as i was standing over matthew bed, bending down to see and look in his eyes, and matthew HOLDING MY FINGER, i looked up at him and said, 'WE'RE STILL HERE!!!!" and him finally looking down at me and smiling and saying, "OK....LET'S SEE WHAT IS GOING ON WITH THIS BABY!!!" and then walking out and starting all the paper work to get BLOOD draws, X-rays, labs, cardiac sonogram, and soooo much more to see WHAT was going on with him!! he was sooooooooooo surprised and PLEASED to see that he had made it thru the night....i remember nurses stopping by to say HELLO and to just MARVEL at matthew because sooooo many nurses had all known what was going on with matthew and having been there the day before when we SANG and had a BIRTHDAY PARTY for him...remembered seeing all our relatives here with us and just kNOWING that YESTERDAY, MAY 26TH, 2004, that they were witnessing the last day, hours, minutes of a little boys life and then NOW, TODAY MAY 27TH, 2004, walking into PICU #18 TO see and WITNESS our MIRACLE MATTHEW ISAIAH!!!! really, it was such an amazing day ALL day, getting phone calls from family and friends asking how matthew was and what was going on....EXPECTING to hear bad news and to console but INSTEAD, HEARING SUCH AMAZING WONDERFUL NEWS that they could then pass along to all our other families!!! what a joy it was watching the activity again surrounding matthew where YESTERDAY, the 26th, it had been very FINAL with no real action with the doctors....then basically leaving us alone all day with our son and TODAY,MAY 27th, then going in and out of the room, poking, proding, and NOT LETTING US HOLD HIM AGAIN!!! i think that was the BIG thing for us at that time because YESTERDAY, 26TH, they had finally let us hold him even with his chest open and such BECAUSE they THOUGHT it was going to be his last day....and TODAY MAY 27TH, NOT letting us hold him BECAUSE they needed him to be STABLE so that they could continue to monitor him and see what was going on!!! i also remember our beautiful FRIENDS AND SISTERS DIXIE & CHRISTA, coming back TODAY MAY 27TH, after being with us ALL DAY YESTERDAY, because TODAY MAY 27TH, they had not heard the news that HE WAS STILL ALIVE, but COMING over early in the morning so that they could make the PLASTER CAST of his little hands for us (which we had decided to do AFTER he was suppose to have passed away to make it easier to do without all his equipment on and INSTEAD coming over and finding out that he was ALIVE and it was such a BLESSING AND MIRACLE and them taking video of him and watching his little EYES OPEN UP FOR THE FIRST TIME!!! we have the video where christa is walking in and she sees us over by matthew talking to him and his eyes are just OPEN and looking at us and just WATCHING US!!! we love that video!!! <3

SO MAY 27TH IS A SPECIAL DAY IN OUR FAMILY!!! and every year, we REMEMBER the MIRACLE that is MATTHEW ISAIAH!

SOME PICS OF MATTHEW ON GAME DAY!

TODAY, matthew was honored to be have been allowed to join this brother ALEX VIPERS TEAM in the dugout and to go on the field and pray and say 'good job' to the other team!! he was sooooo happy and it was just such a JOY to see him out there! we were also remembering that today, 5/26/12, 8 years ago, was the day that they had told us that he would not make it thru the night....and then to see him TODAY out there on the FIELD...WHAT A BLESSING AND THANK YOU JESUS FOR OUR BLESSING!! it just happened that it was today and it was just so special!!!

MATTHEW ISAIAH IS 8 YEARS OLD TODAY!

TODAY is such a SPECIAL DAY in our life!!! TODAY, is our MIRACLE MATTHEW ISAIAH's 8th birthday!!!! woooohooo!! so awesome to just BELIEVE that he is now 8 years old!!!! just watching him and marveling at everything he is DOING…just last weekend, he MADE HIS 1ST COMMUNION, he learned to SUCK THRU A STRAW and just recently, he can tell you phonically how to spell his NAME!!! and that one, he surprised me one day at sunday school when i asked him to spell his name for me on his paper and he phonically spelled MATTHEW for me CORRECTLY with NO promptings from me!! just amazing!! and he has done SOOOOO WELL for his 2nd grade that he MASTER most if not ALL his goals!! we had to set all new goals for him for next year! it should be a CHALLENGING year but i know he will continue to do soooo amazing! my son matthew isaiah….born with a RARE CHD called TAPVR with extreme LUNG DAMAGE who was NOT expected to live…who had his 1st OH surgery at 8hrs old and lived in PICU for 98 days and had another open heart surgery and a g-tube placement before he left….who since that day, had been in and out of hospitals, ambulances, air helicopters, has nursing care at home along with enough equipment here (oxygen, nebulizer, suction, CPT vest, pulse oximeter, CPAP machine, feeding pumps, etc) that most doctors tend to keep him home even when he is soooo sick that MOST kiddos would be hospitalized! he has grown so much this year. he is now totally into WII SPORTS and LOVE LOVE LOVE BASEBALL! he loves to WATCH IT and PLAY IT! i really need to get him into a TEAM of his OWN so he can play TOO!! :) this year, he has really enjoyed being in his WALKER and playing with his TBALL and his BASKETBALL GOAL....he is really VOCAL now and can mostly CLEARLY get what he needs across to us now by using voice, gestures and his talker....he also has REALLY learned to EAT now and enjoys to EAT ALL THE TIME!!! it is so amazing for us to go to a restaurant and watch him eat, and especially something he REALLY likes, he can GO TO TOWN!!! i am so proud of him! he is such a trooper and ALWAYS can be tickled into a good mood! he LOVES all things ELECTRONIC and LOVES LOVES LOVES our IPHONES and his new IPAD! especially if he has internet access and can watch his YOUTUBE!!! AND you will never guess what he LOVES to watch?!?!?!?!? WII BASEBALL!!! heheheh...he can sit there and watch it all the time....i guess since that is his favorite game on the WII if he can't PLAY the WII he will watch OTHERS play the WII ON YOUTUBE! :)

SOOO, he keeps getting BIGGER on us...he is now 45 INCHES TALL (he is catching up to me! i am 59 inches tall! YIKES!) and he weighs 43 lbs....his feet are LITTLE!! I always remark on that because his baby brother JOSH has now PASSED him up on his shoe size!!! and he is 4! i guess he inherited his little feet from me! :) he is STILL wearing the SAME SIZE clothes now for about 3 years +!! he's the same weight just stretching on us!! and he LOVES his brothers...he is forever calling them either on his talker or vocally....and of COURSE his most favorite person in the WORLD is his DADA...HE calls for him every time the PHONE rings or there is a KNOCK on the door! it is soooo cute to hear him YELL out over and over 'DA, DA, DA, DA"...ALTHOUGH, in the MORNINGS, i get some PRETTY FIERCE hugs and kisses from him when DAD is not in the house!! i do CHERISH those moments that he is excited to see me and can't get enough of me!!!! awwww....

soooo, if you would like to READ MATTHEWS MIRACLE BIRTH STORY...please go HERE and you can read it....i have NOT made a MONTAGE of him YET...i plan to sometime in the near future!! but you know me, it has been a BIT crazy for me lately....

well, we are SOOOOO PROUD OF HIM and we are SOOOOOO BLESSED for EVER SECOND OF HIS LIFE and we just keep THANKING GOD EVERDAY for his little life!! we truly been blessed with him and just are EVER SO THANKFUL that he is OURS!!!

SOOOOO, THANK YOU GOD for the last EIGHT YEARS THAT YOU HAVE BLESSED US WITH OUR MIRACLE MATTHEW ISAIAH!!! WE PRAY TO HAVE MANY MANY MANY MORE YEARS WITH HIM!!! we pray that you keep him HEALTHY AND STRONG and just continue to keep him going!!! WE PRAISE YOU, GOD FOR EVERYTHING YOU HAVE BLESSED US WITH AND ALWAYS FOR THAT BEAUTIFUL LITTLE MIRACLE YOU GRANTED US WITH....MATTHEW ISAIAH....GOD IS GOOD, ALL THE TIME!! ALL THE TIME, GOD IS GOOD!!! ALL PRAISE AND GLORY TO YOU GOD FOR OUR SON MATTHEW ISAIAH!!!

MATTHEW ISAIAH.....WE LOVE YOU AND ARE SO PROUD OF YOU!!! HAPPY 8TH BIRTHDAY, MATTHEW!!! GOD BLESS YOU ALWAYS!

LAST OF THE CYO SCHEDULE FOR THE BOYS!

well, the CYO BASEBALL season is closing out and boy, for our FIRST EVER BASEBALL season it has been an amazing time! we have enjoyed the practices and the games sooooo much with the boys and watching the boys make friends with their team mates is awesome! well, we are excited and so proud of them because this was JOSH first season and he was playing TBALL and he did great!!! he is such an athlete! and then there was our big boy ALEX who has NEVER NEVER played any kind of sport and who never WANTED to play, he decided to TRY baseball....he HATED IT at first...being in the SUN all day, having to WEAR A CUP (and finding out what that was!!) and it being HOT!! HE WAS SOOOO NOT USE TO THAT! but, as the season continued and he got better, having NEVER known how to CATCH A BALL OR HIT A BALL, he has done AMAZING!! he has been to the batting cages and he has hit some AMAZING balls which has given him confidence galore! and then playing catch with his team mates where when he first started, poor baby, he was FOREVER missing and then having to run for the ball, NOW is catching most of the balls!!! so proud of his accomplishments! he has even learned to ignore the CUP!!! and how scary it must have been to go up to the plate and TRY TO HIT THE BALL with all these people watching!!! WE ARE JUST SO PROUD OF THEM!!

sooooo, the last of the CYO GAMES ARE AS FOLLOWED:

MAY 19TH
1245-JOSH'S GAME AT ST ELIZEBETH ANN SEATON in BEORNE

1400-ALEX GAME AT OUR LADY OF GUADALUP on bandera

MAY 20TH
1530-JOSH GAME AT ST MATTHEW'S CHURCH

1745-ALEX GAME AT ST MATTHEWS CHURCH

MAY 26TH
1015-JOSH GAMES ST GREGORY CHURCH

1130-ALEX GAME AT ST GREGORY CHURCH

SAT JUNE 2ND DAD WILL BE GONE FOR THESE NEXT GAMES..HE WILL BE AT HIS 2WEEKS TRAINING SOOO SAD
1130-JOSH GAME AT ST ELIZABETH ANN SEATON in BEORNE

1400-ALEX GAME AT ST MATTHEW'S CHURCH

JUNE 3RD
1300-ALEX GAME AT ST ELIZABETH ANN SEATON in BEORNE

1415-JOSH GAME AT PRINCE OF PEACEWE WILL HAVE TO MISS THIS ONE BECAUSE OF ALEX GAME :(



soooo, we are excited about all of this!! :) they have had a GREAT SEASON!!! i hope that maybe someone can take josh to his LAST GAME because i am not sure if they do anything special for them or not....i will ask the coach and if they DO do something special then i will DEFINETLY have to look for someone to take him!! :) i would hate for him to miss it...

well, here it is...the last of the schedule!!!

today was such a BLESSING!!

GOD IS GOOD!!!! today, a beautiful sister of mine invited me to a prayer group that met today....she had emailed me earlier this week and i was unsure if i could make it but like always, THE LORD showed me and told me to go. and it was BEAUTIFUL!!! it was soooo uplifting.....i am EVER so thankful to those ladies and i feel so spiritually RESTORED! i was anointed and prayed over and it felt AMAZING...i felt so hot when they were praying over me and then when she started to talk, bless, open herself TO me....i started to cry...i have so much FAITH that everything will be ok with my arm because i KNOW GOD is here and that he is with me....but what came out was that i DID have fears...they were hidden and they were not of GOD...there was worry about WHAT was going to happen and there was worry that if IT WAS going to be cancer, who would take care of the boys?!?!?! and when she hit upon those, i started to cry...and i am not a crier and it was just soooooo powerful....i left it at JESUS feet...i feel so happy and i feel sooooooooooo energized!! i keep smelling the beautiful ROSE anointment oils they used...it is soooo relaxing and makes me think of MOTHER MARY!

well, i am off to bed...today was the 1st day of the 9 days of the NOVENA FOR THE HOLY SPIRIT!! yesterday was THE LORDS ASSUMPTION INTO HEAVEN!! today STARTED the 9 days of prayer that everyone did after JESUS ASSENDED and 9 days from now, NEXT SUNDAY is PENTACOST SUNDAY...they day that the HOLY SPIRIT CAME TO THEM AND IT LOOKED LIKE TONGUES OF FLAMES and they started to speak in TONGUES!! WHAT A BEAUTIFUL DAY IT IS AND WILL BE!!!!

wednsday will be the day they do my BIOPSY ON MY ARM....praying for good news!

MATTHEW MADE HIS 1ST COMMUNION!!

WE ARE SOOOOO PROUD of our son!!! today, he finished another of his sacraments (baptism, reconciliation & now 1st communion) and we are so blessed!! it was such an exciting day. we got him his little shirt with a tie, some slacks and his new black shoes. we bought him rosary, his prayer book and all his little stuff. we had so many people that were praying for him and he was sooooooo excited. we had practice earlier in the week for him and he was going to be bringing up the BASKET OF FLOWERS during the offeratory and he looks soooo cute! he had to walk in with his HANDS IN PRAYER and he did! he had been practicing...all the kids that were around him were so excited by him and continued to talk to him and try to teach him new words. it was really cute because they were allll trying to teach him words and how to clap etc. awwwwwww.....on top of our PRINCE OF PEACE community being there, my aunt and uncle ZEKE & CYNDI, his nurse and her fiancé, our good friends the ARNDTS, grandma, uncle bubba and family and his 2nd grade teacher!!! it was so nice of everyone! :) and we were soooooo worried about him actually taking the BODY AND BLOOD of CHRIST!~!! he is G-TUBE FED and yes he DOES eat but not on demand! he has to WANT to eat and this was something different! :) so the FATHER and i figured out that he would place a small piece of the HOST on a spoon with some water and then spoon feed him...well, matthew wanted NONE OF IT!! so we kept trying and FINALLY he opened his mouth and we put it in there...he was ok after that...for the wine, i had a SMALL syringe and i probably gave him something like .2 cc of the stuff and squirted it in his mouth!!! he was fine and everyone in the church was watching and you could see that everyone was just smiling!!! we had people come up to us after mass and congratulated him and also tell us that they were soooo moved by it all!!!! you see, to have him make this sacrament was just so amazing thinking back to when he was born and they were giving me NO HOPE what so ever and here we are, making this amazing event!!! THANK YOU GOD FOR OUR LITTLE MIRACLE!!!!!

FIRST DOCTORS APPT.....DONE....

SO, today was my first appt with the ORTHOPEDICS department at SAMMC....it started at 1045 and ended at 1300! so, after getting the BEAUTIFUL BIG NEW AND IMPROVED BAMC hospital, i had to navigate the CRAZY hallways from one side of the hospital to the other!! boy, i almost needed a COMPASS!!! i know i could have STILL been there lost if i hadn't asked so many people WHERE AM I!?!?! anyway, finally got to see the PA there at orthopedics...VERY VERY nice man!!! was very comfortable with him. after he and his dr looked at the MRI, they felt that it was PROBABLY a PERIPHERAL NERVE SHEATH TUMOR instead of a histiosytoma....still not sure if it is cancer or not and will not be able to find out until i get an BIOPSY...soooo, i asked him was this something he sees a lot or something interesting and rare...he said VERY RARE and VERY INTERESTING...he has been consulting with many of his peers to see what they think....so,he said that we were going to go ahead and have surgery, remove tumor and then BIOPSY the tumor to see what it is.....so then they sent me off to RADIOLOGY to get an XRAY of my arm....done....as i am leaving the hospital (after negotiating the halls again) , i get to the outer door and check my phone and find out that he had called and left me a message...COME BACK....WE ARE THINKING OF SOMETHING ELSE WE MIGHT DO!!! LUCKILY, i saw that before i left, so turned around negotiated the halls AGAIN, made my way back and went back to talk to them....he said that after talking to ANOTHER doctor, she felt that instead of going in and having surgery right away, that maybe a better option would be to do a ULTRASOUND GUIDED BIOPSY of the tumor and IT MIGHT NOT BE A TUMORE BUT MIGHT BE A BUNDLE OF NERVES?! he said, that my chances of it being CANCER if it WAS a BUNDLE OF NERVES just went DOWN!!!!! so, then i scheduled a ULTRASOUND that is set up for TOMORROW at 1130 and then i have to make ANOTHER appt to see the PA again.....and then they will see if it is POSSIBLE to do the non invasive surgery or if it is NOT possible and then do the FULL SURGERY... sooooo, to recap: BEST CASE SENERIO: ULTRA SOUND SHOWS THAT IT WAS NOT A PERIPHERAL NERVE SHEATH TUMOR AND THEY CAN DO A ULTRASOUND GUIDED BIOPSY AND THERE IS ANOTHER WAY OF TREATING THIS MASS WITHOUT DOING OUTRIGHT SURGERY AND BIOPSY IS NOT CANCER WORST CASE SENERIO: ULTRA SOUND SHOWS THAT IT IS A PERIPHERAL NERVE SHEATH TUMOR, CAN'T DO A ULTRASOUND GUIDED BIOPSY AND NEED TO HAVE AN OPERATION TO REMOVE THE TUMOR AND BIOPSY IT tomorrow, i am going to do an ultrasound in the morning and then i should be going back to see the orthopedics dr and see what happens.... so there it is...we shall see what this day brings...it has been a LONG day....LONG LONG LONG day....i left at 0930, got home at 1315 just long enough for james and the boys to come and pick me up and we were off again (i never left my car) and ran over to grab some take out because we were going to watch the 1405 showing of the AVENGERS (which was AMAZING!!!!!), came home for EXACTLY one hour (long enough for matthew to have his teacher and some CLASS), AS SOON as she walked out, we WERE OUT of here and headed to 1ST COMMUNION PRACTICE over at the church and we made it home at 2055!!! boy, my DOGS hurt!!! heeheheheeee....just a bit crazy right now!!! hope tomorrow goes GREAT!!!! THANK YOU EVERYONE AND MANY BLESSINGS EVERYONE!

happy day today!!!

matthew is feeling better!!! after over a week of being soooo sick with congestion, wheezing and just feeling lousy, last night was the first night in almost a WEEK without having to need oxygen!!! woooohooo...he has another antibiotic on board after going to see his pulmonolgist on friday because he was STILL wheezing and having a hard time breathing after 9 doses of oral steroids, 4 days of an antibiotic and TONS AND TONS of nebulizer treatments every 3-4 hours...he has finally feels BETTER!!! still wheezing BUT able to keep his oxygen sats UP without the use of oxygen. it is such a BLESSING to us to see him back to almost normal. he is such a special little boy that even though he doesn't feel GREAT, he still smiles and laughs and just is MATTHEW.....SO NOw to CLEAR HIM UP so he doesn't have to have any more neb treatments and can just go back to 'normal' for him....he is REALLY starting to HATE the nebs and the suction and i don't blame him for it!!! i would hate it!! and now they are talking about getting him a IPV machine for the house...we were soooooo close to having to admit him into the hospital!!!! the dr was really worried about him/..after seeing the X-ray that we took on friday, he said there was INCREASED MARKINGS...hmmmm....poor baby! just happy that he has not needed to be admitted!!! WHEEEEWW!!! and ON a happy note, TODAY matthew started to SUCK ON A STRAW!!! whooohooo!! he lost his suck reflex at 7 months old and has never been able to do it since!! but recently he started to give KISSES, and today, i put them together with his ONE WAY VALVE STRAW and cup and told him to 'give the straw a kiss matt' and waalaa!! he DID IT@!!!! soooo happy and in AMAZEMENT of him! now just to watch him that he doesn't suck toooooooo hard that he aspirates!!! ;) AS FOR ME, well i am doing fine....thinking of my arm and wondering what will happen on tuesday at the drs office. they called me on friday morning to tell me that they could see me on tuesday....that was QUICK as far as the military system workings so i was VERY VERY happy to get that phone call the next morning after getting the news of my arm!~!! THANK YOU GOD! now to start this journey....i PRAY that there is a 'QUICK FIX' for this and it isn't the WORST CASE scenario...i can only PRAY that it is something that is treatable....BUT whatEVER the outcome, i am READY!! with GOD and my family and friends behind me, i will the strength to do ANYTHING.... after what matthew goes thru EVERYDAY, i know i can do it....and i will do it with a SMILE because i have FAITH in MY GOD that all will be well and it is HIS will!! if you can remember MAY 21st - MAY 26TH, 2004 when we got the news of matthew you will remember that thru iT ALLLLL, i had complete FAITH in GOD and i accepted it all and knew that whatever happened was GOD'S WILL and i believe now the same thing...GOD IS GOOD ALL THE TIME!!! ALL THE TIME GOD IS GOOD!!!! ready for TUESDAY to get here and find out some more!!!

FIBROUS HISTIOCYTOMA.....

BIG WORD huh?? Well, before this morning, it was a word that i had never heard....that and also PERIPHERAL NERVE SHEATH TUMOR.....well, after more than FIVE YEARS of pain and going to drs to find out WHAT THE HECK was wrong with my right forearm (and being told OVER AND OVER that it was TENNIS ELBOW), FINALLY, the PHYSICAL THERAPIST who was working with me, after palpating the area, decided that something was WRONG with my forearm and that if it WAS TENNIS ELBOW, it sure would not STILL be hurting YEARS LATER and progressively getting worst!!!! and he also palpated something on it that felt like a nodule....hmmmmmm, it took a PHYSICAL THERAPIST to FINALLY realize that SOMETHING was wrong with my arm!!! he told me i NEEDED to get an MRI ASAP because it was NOT NORMAL!!! SO, after FIRST having to make an appt with my PCM, then waiting for her to agree with him that i SHOULD get an MRI (after telling me YET AGAIN, that the symptoms SOUNDED like TENNIS ELBOW!!!), I got my MRI 3 weeks later and here i am, with an CONSULT to be seen by a ORTHOPEDIC ONCOLOGIST!!! yes, i am going to see a dr that specializes in CANCER....for my arm....that has been hurting for MORE THAN 5 YEARS....that i have gone to the dr OVER AND OVER again....and being told that it was TENNIS ELBOW!!! hmmm... so, there was no SHOCK involved in hear this diagnosis....i was soooooo calm!!! and IMMEDIATELY, the song YAHWEH, I KNOW YOU ARE NEAR.....i LOVE that song and i started to sing and think of that song...it brought me so much peace and it's one of my favorite songs and reminds me that he is EVER by MY SIDE and that i have nothing to fear....after everything that my beautiful son MATTHEW ISAIAH went thru, NOTHING that is going on in my life is ANYTHING compared to what he has gone thru and continues to go thru...he is such a STONG little boy and just seeing him everyday always and forever will assure me of my SAVIORS BEING BY MY SIDE....no matter WHAT is happening in my life, it is GOD'S WILL and it is HIS will through it all and he will see me thru it, one second at a time!!! :) soooo, i ask for prayers because that is one thing that i have such STRONG FAITH in that prayers are sooooo amazing and so strong and that when we ASK, HE WILL ANSWER AND HE WILL HEAR!!! i am ready for anything because 'THRU GOD, ALL THINGS ARE POSSIBLE' MATTHEW 19:26....THAT has been our SAYING since OUR MATTHEW was born! :) and it continues to bring is strength thru our life!! sooooo, THANK YOU in advance for any prayers and good thoughts...i don't know what life will bring but i KNOW that THRU GOD, all will be ok and that my life is HIS and whatever He decides for me, is EXACTLY the way it needs to be!! :)

BLESSINGS!!!!!

GOD IS SOOOOO GOOD!! today we found out that MATTHEW was selected to receive some BLESSINGS from VARIETY OF TEXAS CHARITY GROUP!!!!!!!!! wooooohooooooo............again, just AMAZED and feeling sooooooo BLESSED that it has happened.....we asked for an UMBRELLA SPECIAL NEEDS STROLLER---we asked for this because right now, he has a WHEELCHAIR that weighs about 60+ and to get it out and into our SUV, it is a double lift and/or using the WHEELCHAIR LIFT....when i am by myself, it takes me about 20+ minutes to get it set up, out, break it down, set up his wheelchair, put him in and then off we go....when it is COLD, RAINY, HOT, ETC, it is pretty hard!!! :) but we are blessed and the wheelchair doesn't fit into a car (for the nurse to take him somewhere) and so we have been using joshua's small umbrella stroller and poor baby is soooooo big for this!!! feet drag etc...so now we are going to have what he needs!!! THANK YOU JESUS!!!! and then we asked for an IPAD for him and they said YES!!! this will help matt communicate, get better with pointing and just there are soooo many apps that could help him!! NEEDLESS TO SAY WE ARE SO GRATEFUL AND THANKFUL FOR THIS!!!!!! this group helps out special need families with stuff that insurance won't pay for, have denied, etc.....wowowowowowow.....so GOD WILLING in a couple of weeks we should get everything! :)soooooo YAYAYA! I CAN'T WAIT.....

My parents....

well, i came to an AMAZING realization today....it is funny because when talking about my FAITH, i always SAY that as a family growing up, we were ALWAYS at church and we were ALWAYS so ACTIVE in our church community....but i don't think i have ever THANKED MY PARENTS for such an AMAZING UPBRINGING IN THE CHURCH!!!!!!!!!!! i have always said that i was brought up IN CHURCH but i have never come to the realization that it was BECAUSE OF MY PARENTS that that is why i am the way i AM....that is so WIERD! and UNFORTUNATLY, BOTH my parents are gone now...i will never get the chance to tell them FACE TO FACE THANK YOU for the BEAUTIFUL GIFT of bringing me FAITH TO MY LIFE....and even though, as a family, there was a LOT of trumoil in my growing up life, the most BEAUTIFUL thing that i have continued to RECIEVE from my PARENTS is MY FAITH....that was something that they have ALWAYS taught me and THANK YOU, MOM AND DAD for that!!! that is why i was able to meet my hubby, have my kids, go thru what i went thru with my beautiful MIRACLE SON MATTHEW and all the other things that have come in my life, it has ALL been BECAUSE OF MY FAITH given to me FROM MY PARENTS that i was able to LIVE MY LIFE AND BE AND FEEL BLESSED!!!

something that came to me as i was praying today....WHAT A BLESSING!!! THANK YOU GOD!

getting READY!!!

WOOOHOOOO!!!! we are heading OFF to go to JELLYSTONE RV RESORT tomorrow for a couple of days! :) LOVE being able to head out and just get away for a while....we are also going with some GREAT friends of ours for thier FIRST RV TRIP in their BRAND NEW RV that they got this week!!! WOOO HOOO!!!!! i know that THEY are crazy excited as we are...we will love being to show them the ropes....what is funny is that we have NEVER been camping with any other family or friends!!! yep, in all our ears, we usually go by ourselves....so it should be pretty cool to have another family with us...they also have 3 kids too...i know the BOYS will have a BLAST!!! and being able to chat with my girlfriend...nice!!!


sooooo EVERYONE have a GREAT weekend....see ya soooooonnn...

HAPPY 7TH BIRTHDAY, MATTHEW ISAIAH!!!

HAPPY 7TH BIRTHDAY, MATTHEW ISAIAH!!!
May 21, 2011…

Praise God, our miracle son is 7 years old today. What a BLESSING it has been to have him in our lives for every SECOND of it! We THANK GOD for those seconds everyday knowing how close it came that he might not have been with us. We are THANKFUL and we are BLESSED!!!!!!!!

Matthew had a rough start in life. He has been thru so much in his 7 years of life…most people could not even IMAGE what he has gone thru. But thru it ALL, with everything, he has ALWAYS been such a HAPPY BOY…yes, happy! We always say that he MUST have seen GOD during those first 5 days of life because he is always so happy. We know that GOD the Father holds him, shelters him and looks over him everyday.

Now, I know most of you have probably heard his MIRACLE BIRTH story so I won’t put those words down again. BUT if you have not heard about what a TRUE MIRACLE he is, please follow this link to our BLOG and you can read all about it. TRULY A MIRACLE FROM GOD!!! http://blessingsinmylife.blogspot.com/2008/05/miracle-matthews-story.html

I want to just write about who MATTHEW ISAIAH is….there are so many WORDS that describe and have become Matthew. He is a MIRACLE…when he was born his prognosis was the cardiologist did not think he would make the 15 min drive to the other hospital. He was that sick. His heart defect was so bad (obstructive) and his lungs were so bad…he was a blue baby. After his 8 hour open heart surgery when he was 8 hours old, at 5 days old being taken off the ECMO (heart lung bypass machine) to ‘die a natural death’…the MIRACLE that when almost 24 hours after being taken off and given the grim news that he would not make the night, he is awake, wiggling toes, grabbing our fingers and not as BLUE as he was on day 5!!! And day after day of those first 98 days in the hospital, proving doctors wrong….doctors never able to give a prognosis or tell us WHAT to expect because at every turn, GOD thru MATTHEW would prove them wrong or do the complete opposite!!! He pulled out his vent a couple of times during those days and during all the drama that that caused he would sit up and SMILE such a big beautiful smile and the RTs, nurses and drs would just MARVEL that he seemed to KNOW when he was ready to be off the vent and do AMAZING….of leaving the hospital WITHOUT a trache and a vent that they drs wanted him to leave with because he would ‘not grow’ because of his rapid breathing….going home and doing AMAZING until he was 5 months old and started SEIZING and given a diagnosis of INFANTILE SPASMS and being told to ‘video tape what he was doing at 5 months because he may never do anything more than that’….another miracle when INFANTILE SPASMS didn’t materialize and SHOCKING the neurologist because in all his 20+ years of practice he had NEVER had a pt diagnosed due to the earmark TYPE of seizures and not progress and continue with the infantile spasms…He is so STRONG…stronger than ANYONE can be…he has just been such an AMAZING little boy….thru all the hour/2 hour long seizures where he has to be rushed by EMS, being intubated, being poked, being bagged because he stops breathing…hospitalizations due to all his seizures, his respiratory condition (he has CHRONIC LUNG DISEASE)…ALL his numerous illness here at home where he is on and off oxygen, oral steroids, antibiotics, 6+ nebulizer treatments a day and being suctioned and just recently, he is now having to wear a CPAP machine while he sleeps and just being such a TROOPER and not fight it and just ACCEPTS IT…that is something that is sooooo STRONG about him…he will be getting a blood drawn, getting suctioned, getting some procedure done, a sleep study with all the wires on his head, being messed with medically and thru it all, he might be crying but he doesn’t FIGHT….he does pull away, he just cries and doesn’t fight…it is just so amazing to see him be so strong…it breaks my HEART because I know it is because he has been thru soooo much that that this is ‘normal’ is why he is like he is…the medical staff are just in awe of him because I will hold his arm down and he won’t try to kick, punch or anything else, he will just cry and if I have my phone out or something is distracting him, he won’t even CRY while getting a blood draw….my beautiful baby boy has been thru so much that it is just something ‘normal’ for him that he just accepts it…and when he is done……HE SMILES!!! This big beautiful SMILE…what a miracle and blessing this little boy is in our family….we NEVER keep him home when we are out and about…he goes with us EVERYWHERE…we take trips as a family….enjoy RVing….parties….normal everyday stuff like groceries, church, everywhere…..we are so PROUD of him and we are so IN LOVE with this little boy…he brings so much light in our lives and so much JOY!! To remember everything he has been thru, to remember how CLOSE it was that he was ALMOST not going to be a LIVING part of our lives…..we embrace, feel blessed, & are THANKFUL for every second and give PRAISE to GOD for this little miracle in our lives.

If you have never actually MET Matthew but have followed his life since he was born, know that we WISH that you could meet him so he he could know that you have been a part of his life because you have been out there THINKING and PRAYING for him. He would grace you with his love, his hugs and his SMILES…and if you have a phone, and you let him play with it, well, you would have made a FRIEND FOR EVER!!! This little guy LOVES phones and we actually have to talk code if we talk about our phone or where it is and GOD FORBID it rings and it is hidden some where and he hears it…it’s OVER!!! The phone is HIS!! He is such a great little guy. Always happy and always HAPPIEST wherever DADA is at…his favorite word in the world is DADA…I really need to video tape him when dad comes home…the JOY he shows makes you want to cry! Although thinking back if you put on his favorite movie he kinda does the same think…..JUST KIDDING! His love for dada is just AMAZING…

So THANK YOU ALL for all these last 7 years of thinking of Matthew and PRAYING for Matthew. We are BLESSED that we ‘know’ you and we are BLESSED that you love our son, as we do.

HAPPY 7TH BIRTHDAY, MATTHEW ISAIAH. We PRAY that there are MANY MANY MANY more. WE LOVE YOU and are so BLESSED and HAPPY that GOD has been so amazing to us that he has bless us with YOU in our lives. You are such a JOY to us and we are sooooooo PROUD OF YOU!!!! WE LOVE YOU, MATTHEW ISAIAH WITH ALL OUR HEART!!!! GOD BLESS YOU ALWAYS!!!

Photo and video editing at www.OneTrueMedia.com

http://www.onetruemedia.com/shared?p=de6e9d4511069c6f5aade8&skin_id=1604&utm_source=otm&utm_medium=text_url

Love,
Maria, James, Alex, & Joshua
www.blessingsinmylife.blogspot.com