BEEN A LONG TIME

I HAVE BEEN SLACKING LATELY WITH MY BLOG, BUT LIFE IS JUST TOO BUSY SOMETIMES.

 SINCE MY LAST BLOG ETHAN HAS IMPROVED SO MUCH AND IS CRAWLING ALL OVER THE PLACE. IT IS AMAZING TO SEE HOW EVERYTHING IS CONNECTED. SINCE HE HAS STARTED CRAWLING, HIS SPEECH IS GETTING BETTER ( HE IS MORE VOCAL AND MAKING A WIDER RANGE OF NOSIE) AND HIS EATING HAS GOTTEN BETTER. HE IS REALLY GETTING THE HANG OF EATING MORE SOLIDS AND TRYING NEW FOODS. FROM DAY ONE OUR OCCUPATIONAL THERAPIST ALWAYS TOLD US EVERYTHING IS CONNECTED AND WE ARE NOW SEEING IT FIRST HAND.

WE ARE STILL DOING HIS 3 DIFFERENT TYPES OF THERAPY, AND I THINK HE IS PROGRESSING IN ALL OF THEM. LETS CATCH UP.

SPEECH- STILL NO MORE WORDS, BUT LIKE I MENTIONED ABOVE MORE NOSIE. HE ALSO HAS LEARNED A FEW MORE SIGNS. SPEECH IS ONE THAT WE KNOW WILL NOT COME EASY AND COULD TAKE A WHILE BEFORE ANYMORE WORDS COME. SO RIGHT NOW WE WILL CONTINUE TO WORK HARD ON HIS SIGNS AND CONTINUE TO BE IMPRESSED WITH HOW SMART ETH  IS. HE CATCHES ON SO QUICKLY IT'S AMAZING.

WE TOOK HIM TO GO GET HIS HAIR CUT THE OTHER DAY AND THE LADY LET ETH PLAY WITH HER COMB, WHEN SHE TOOK IT AWAY HE STARTED SIGNING " MORE PLEASE" THE LADY COULDN'T BELEIVE IT, SHE WAS VERY IMPRESSED AND SO WAS I. I KNOW HE CAN DO IT BUT NOT OFTEN DOES HE DO IT TO PEOPLE HE DOESN'T KNOW. THEN WE WERE LEAVING AND ETHAN SIGNED " THANK YOU". IT IS SO NICE TO SEE EVEN THOUGH HE CAN'T SAY IT HE CAN STILL COMMUNICATE WITH PEOPLE.

OCCUPATIONAL - ETH IS IMPROVING TREMENDOUSLY WHEN IT COMES TO EATING. FOR A WHILE THERE I WAS NERVOUS THAT WE WOULD BE FEEDING HIM BABY FOOD FOREVER, BUT ONCE HE GOT THE CONCEPT HE HAS ONCE AGAIN PROVEN ME WRONG. ETH LOVES TRYING NEW FOODS, AND WE HAVEN'T FOUND ANYTHING HE DOESN'T LIKE YET. IT IS ALSO SO MUCH EASIER FOR US TO JUST FEED HIM A LITTLE OF WHAT WE ARE EATING INSTEAD OF MAKING HIM HIS OWN MEAL.

PHYSICAL- HE IS CRAWLING AROUND ALL OVER THE PLACE ( THAT IS SOFT) HE IS STILL NOT A FAN OF CRAWLING ON THE HARDWOOD FLOORS, BUT I DON'T REALLY BLAME HIM. WE ARE NOW WORKING ON STANDING. DURING THERAPY WE PUT HIS LITTLE ANKLE BRACES AND SHOES ON AND PRACTICE STANDING HOLDING ON TO THE TABLE OR COUCH. HE LOVES TO PRACTICE STANDING, AND USUALLY CRIES WHEN WE ARE DONE. THE GOOD NEWS IS HE IS INTERESTED IN LEARNING HOW TO STAND ON HIS OWN AND TRIES REALLY HARD, THE BAD NEWS IS HE HAS ZERO BALANCE.  IT IS GOING TO TAKE HIM SOME TIME TO GET A HANG OF THIS NEW CHALLENGE, BUT LIKE EVERYTHING ELSE ETHAN WILL DO IT ON HIS OWN TIME.


IT HAS FINALLY HIT ME THAT I NEED TO START TAKING BETTER CARE OF MYSELF TO HELP ETHAN. NOW THAT HE EATS WITH US A LOT MORE, WE NEED TO EAT A LOT HEALTHIER. I AM TRYING TO COOK MORE AT HOME, AND AM TRYING TO ADD SOME NEW HEALTHY SNACKS TO THE HOUSE. FOR ANYONE WHO KNOWS US KNOWS THAT THIS WILL BE EXTREMLY HARD FOR KEVIN AND I, WE EAT MORE JUNK FOOD THAN ANYONE I KNOW, LUCKY FOR US WE HAVE THE CUTEST LITTLE MOTIVATOR .

SPEAKING OF MOVTIVATION MY SISTER TALKED ME INTO DOING A YOGA CLASS SUNDAY. NEVER DOING YOGA BEFORE I HAD NO IDEA HOW HARD THE CLASS WOULD BE. IT DOESN'T HELP THAT I AM IN THE WORST SHAPE OF MY LIFE, BUT I STILL DIDN'T THINK IT WOULD BE HARD FOR ME. I WAS SO WRONG. DURING THE CLASS THE INSTRUCTOR TOLD US TO THINK OF ONE PERSON THAT NEEDS GOOD ENERGY AND OF COURSE ETHAN WAS MINE. THROUGH OUT THE CLASS DURING THE HARDEST TIMES THAT I WANTED TO QUIT, I KEPT THINKING ABOUT HOW HARD ETH HAS TO WORK EVERYDAY JUST TO DO THE LITTLE THINGS WE TAKE ADVANTAGE OF, AND I STARTED TO THINK ABOUT HOW HARD HE GETS PUSHED AT PHYSICAL THERAPY AND THAT WE NEVER LET HIM QUIT. TO ME THAT WAS ALL THE MOTIVATION I NEEDED TO PUSH THROUGH THAT CLASS NO MATTER HOW MANY TIMES I WANTED TO QUIT. ETHAN HAS GIVEN ME STRENGTH WITHOUT EVEN KNOWING. NOW EVERYTIME I WORKOUT AND I THINK OF THOSE THERAPY SESSIONS WHEN ETHAN CRIED AND CRIED BECAUSE HE WAS PUSHING HIMSELF SO HARD, IT HELPS ME PUSH THROUGH MY OWN STRUGGLES.

UNTIL NEXT TIME, HERE ARE SOME CUTE LITTLE PICTURES



ETH RIDING A PONY AT THE STOCK SHOW




GETTING READY FOR THE STOCK SHOW



PLAYING WITH COUSIN DOLTON

ETH AND RY

LOVES PAPA DAN

GO BRONCOS




 

So proud of Eth..... he is so close

As many of you know we have been working on crawling with Eth for a long frustrating while. In this video you will see how far he has come, he is so close. Not only does Ethan have a disadvantage because of his low-tone from PWS he also had to regain all strength back into his legs after being in the Spica cast during the summer.

He works so hard and it makes me proud. Hopefully he will continue tomove more and more each day.

Christmas 2011

Had a wonderful Christmas as a family. Here are some pictures

LESSON LEARNED

SO I WAS LOOKING THROUGH OUR "JUNK DRAWER" TRYING TO FIND EARPHONES FOR MY IPOD, WHEN I CAM ACCROSS MY " DIRECTIONS FOR ETHAN'S FEEDING TUBE". WHEN ETHAN USED HIS FEEDING TUBE ( UNTIL HE WAS 3 MONTHS OLD) I WROTE OUT STEP BY STEP DIRECTIONS FOR ALL OF OUR FAMILY THAT WOULD BE WATCHING HIM. SO I FOUND THESE STUFFED IN THE " JUNK DRAWER" AND COULDN'T BELEIVE HOW LONG AGO THAT SEEMED.

IT BROUGHT ME BACK TO THOSE EARLY DAYS OF DOUBT THAT ETHAN WOULD NEVER BE ABLE TO EAT ON HIS OWN. THERE WERE DAYS THAT I FELT SO DOWN AND DISCOURAGED AND DAYS THAT IT WOULD TAKE HIM LITERALLY AN HOUR TO GET 2 OUNCES OF MILK DOWN WITH A SYRINGE.

IT ALL SEEMS LIKE A DISTANT MEMORY, IT SEEMS LIKE FOREVER AGO. IT MADE ME OPEN MY EYES TO HOW FAR ETHAN HAS COME, IT IS TRULY AMAZING. HE HAS WORKED SO HARD TO BECOME WHO HE IS TODAY AND I AM SO PROUD OF ALL THE ACCOMPLISHMENTS SO FAR. IT MADE ME REALIZE THAT ALTHOUGH RIGHT NOW IT MAY FEEL LIKE HE WILL NEVER CRAWL OR NEVER WALK, HE WILL. HE WILL DO IT ON HIS OWN TIME, BUT HE WILL DO IT.

I DON'T THINK IT WAS AN ACIDENT THAT I CAME ACROSS HIS FEEDING DIRECTIONS, I THINK IT WAS MORE LIKE A WAKE UP CALL FOR ME. SOMEONE WAS TRYING TO TELL ME TO LET ETHAN DO THINGS ON HIS OWN TIME, CONCENTRATE ON THE THINGS HE CAN DO RATHER THEN THE THINGS HE CAN'T. DON'T EVER LET THE THINGS HE STRUGGLES AT OVER SHADOW THE THE THINGS HE HAS ACCOMPLISHED.

THIS TOO WILL SOON BE A DISTANT MEMORY.... LESSON LEARNED!

NOT ENOUGH TIME TO BE OVERWHELMED

KEVIN STARTED A NEW JOB AND CAN'T TAKE TIME OFF YET FOR ETHAN'S APPOINTMENTS, WHICH I KNOW ISN'T HIS FAULT.I LIKE GOING TO APPOINTMENTS ANYWAYS BECAUSE I NEED TO BE THERE TO ASK QUESTIONS AND HEAR WHAT THE DR. HAS TO SAY. HOWEVER IT HAS BEEN GETTING STRESSFUL FOR ME LATELY. DUE TO ALL ETHAN'S MEDICAL NEED I AM COMPLETLY OUT OF VACATION TIME FOR THE YEAR AT WORK. OUT OF THE 4 WEEK I GET I THINK I HAVE TAKING 1 AND 1/2 ACTUAL VACATION DAYS, AND THE REST HAVE BEEN FOR APPTS.

JANUARY 1ST, AND THE NEW VACATION TIME CAN'T COME SOON ENEOUGH. NOT ONLY AM I COMPLETLY OUT OF TIME AND HAVE  MANY APPTS STILL SCHEDULED      ( I WILL HAVE TO TAKE IT WITHOUT PAY) ETHAN HAS ALSO BEEN SICKER THAN EVER THIS FALL/WINTER. HE TRULY HAS BEEN SICK OFF AND ON NON STOP SINCE SEPTEMBER. EVERY WEEK IT IS SOMETHING NEW. I FEEL SO BAD FOR MY BABY, AND HATE HATE HATE LEAVING HIM WITH THE BABYSISTER ( FAMILY MEMBER BUT STILL) WHILE HE IS SICK.

I FEEL SO GUILTY LIKE A MOM SHOULD BE THERE WHEN HER CHILD IS SICK, IT ISN'T FAIR TO HIM OR THE SITTER BUT YET WE HAVE NO CHOICE. I AM PRYAING TO GOD THAT ETHAN'S IMMUNE SYSTEM GETS STRONGER AND THIS IS JUST FOR THIS YEAR NOT EVERY WINTER OR ELSE I DON'T KNOW WHAT WE WILL DO. SOMETIMES I WISH WE COULD JUST SELL THE HOUSE AND THE CARS AND MOVE INTO AN APARTMENT SO ONE OF US COULD STAY HOME WITH HIM. I JUST DON'T GET HOW OTHERS DO IT.

HOW DO OTHER PARENTS WITH A SPECIAL NEEDS KID STILL WORK FULLTIME JOBS AND STILL HAVE TIME FOR ALL THE APPTS AND THERAPIES AND SUPRISES THAT POP UP. OBVIOUSLY YOUR CHILD COMES FIRST BUT YOU STILL HAVE TO RESPECT YOUR JOB SO YOU CAN BRING HOME A PAYCHECK AND KEEP YOUR CHILD'S INSURANCE.

SOMETIMES IT IS ALL A LITTLE OVERWHELMING AND YOU START FEELING BAD. YOU START THINKING ABOUT IF YOU WERE TO BE A STAY HOME MOM ALL THE NEW DOORS THAT OPEN UP.,ALL THE EXTRA THERAPIES YOU COULD FIT IN OR YOU WOULD FINALLY HAVE  THE TIME TO DRIVE ACROSS TOWN TO ALL THE "BEST OPTIONS" IN THE STATE.

SOMETIMES I WISH THERE WERE JUST MORE HOURS IN THE DAY, OR MORE FLEX IN OUR BUSY SCHEDULES. I KNOW THIS WILL PASS AND THINGS WILL WORK OUT. I AM JUST WAITING TO SEE THE LIGHT AT THE END OF THIS CRAZY TUNNEL.

HOLIDAYS,

THANKSGIVING WAS A LOT OF FUN. WE SPENT TIME WITH BOTH SIDES OF THE FAMILY AND ATE ENTIRELY TOO MUCH FOOD. ETHAN EVEN GOT TO TRY SOME NEW FOODS ON THANKSGIVING, HE TRIED TURKEY, MASHED POTATOES, CRANBERRIES, STUFFING, AND SWEET POTATOES. IT WAS NICE THAT WE COULD PUT HIM IN THE HIGHCHAIR AND FEED HIM WHAT WE ARE EATING. THIS DOESN'T HAPPEN  MUCH SINCE ETHAN IS STILL STRUGGLING TO EAT FINGER FOODS, AND WE AREN'T USUALLY EATING MUCH HE CAN HANDLE. THANKSGIVING ( ATLEAST AT OUR FAMILIES) HAS A LOT OF OPTIONS FOR SOFT EASY TO EAT FOODS .

I KNOW THAT EVERY YEAR ISN'T GOING TO BE SO EASY WHEN IT COMES TO PWS AND THE AMOUNTS OF FOOD SERVED AT HOLIDAYS LIKE THANKSGIVING, BUT THIS YEAR I TRIED NOT TO THINK ABOUT IT AND TRIED TO ENJOY THIS YEAR WITH LITTLE WORRY AS POSSIBLE.

THE NEXT HOLIDAY IS CHRISTMAS AND I CAN'T WAIT, FOR SOME REASON HOLIDAYS WHEN YOU HAVE KIDS SEEM SO MUCH MORE EXCITING. WE GOT THE TREE UP, STOCKINGS HUNG AND THE LIGHTS OUTSIDE UP. I HAVE BEEN LISTENING TO  CHRISTMAS MUSIC FOR WEEKS NOW AND AM TRYING TO GET KEVIN IN THE MOOD. KEVIN DOESN'T UNDERSTAND WHY I LOVE CHRISTMAS, I MEAN HE DOESN'T HATE IT BUT DEFINETLY DOESN'T LIKE IT LIKE I DO. I HAD TO BEG HIM TO PUT THE LIGHTS UP AND HAD TO DRAG HIM TO BUY A NEW TREE THIS YEAR.

WHEN I WAS LITTLE I REMEMBER HAVING THE BEST CHRISTMAS'. MY PARENTS DID SUCH AN AMAZING JOB DECORATING OVERLOADINGS US ON GIFTS AND MAKING THE HOLIDAY FEEL SO SPECIAL. WE HAD OUR FAMILY TRADITIONS AS KIDS THAT WE STILL DO NOW AND I WANT ETHAN TO HAVE THE SAME THING.

I WANT TO MAKE NEW TRADITIONS FOR OUR LITTLE FAMILY AND I WANT TO MAKE IT FEEL SPECIAL FOR HIM. I WANT HIM TO BE EXCITED FOR SANTA, AND WANT TO SEE HIS EYES LIGHT UP AT HIS NEW TOYS. I WANT  HIM TO WAKE UP AND LOOK FOR THE ELF ON THE SHELF EVERY MORNING AND MAKE IT FUN. YOU NEVER GET THESE YEARS BACK AND CHRISTMAS ONLY COMES ONCE A YEAR, SO I WANT TO MAKE IT SPECIAL.

ETHAN IS STILL YOUNG AND MAY NOT CARE MUCH ABOUT SANTA OR THE TOYS YET, BUT THIS YEAR HE IS LOVING CHRISTMAS LIGHTS. HE COULD SIT AND STARE AT OUR TREE FOR HOURS. WE GET TEARS EVERYTIME IT IS TIME TO TURN THE TREE OFF, OR WE WALK OUT OF THE LIVING ROOM.... I MEAN HE LOVVVVVVVVVVVVVES IT.

ALSO CHRISTMAS EVE WILL BE ETHAN'S FIRST TIME AT CHURCH.. I AM ANXIOUS TO SEE HOW HE DOES. HE DOESN'T SIT AND LISTEN FOR LONG PERIODS OF TIMES AND I AM AFFRAID HE IS GOING TO BE A HANDFUL.  I DON'T KNOW HOW MY MOM DID IT TAKING ALL FOUR OF US UNDER THE AGE OF 7 TO CHURCH EVERY SUNDAY BY HERSELF, BUT IF SHE CAN MANGE THAT I LIKE TO THINK I CAN HANDLE ETH.

OUR HAPPY BABY IS BACK

ETHAN FINALLY IS GETTING OVER HIS "COMMON COLD" HE HAS HAD FOR THE LAST WEEK. HE HAS BEEN SNOTTY, COUGHING, FEVER, HAD A SINUS INFECTION AND PINK EYE IN BOTH EYES. HE WAS A MESS.  HE IS STARTING TO BE BACK TO HIMSELF AND WE ARE FINALLY GETTING SLEEP AT NIGHT AGAIN. ETHAN'S COUGH HAS ROBBED US FROM OUR SLEEP THE LAST WEEK AND IT HAS BEEN ROUGH WAKING UP TO THE ALARM CLOCK IN THE MORNING. WITH PWS YOUR BODY DOESN'T FIGHT COLDS WELL. IT IS ALSO VERY COMMON FOR A COUGH TO TURN INTO A SERIOUS CASE OF PNEUMONIA IN A MATTER OF HOURS. ALSO YOUR BODY OFTEN DOESN'T SHOW SIGNS OF ILLNESS THE WAY THEY SHOULD. WITH BOTH THEIR HIGH PAIN TOLERENCE AND THEIR SOMETIME ABSENT FEVER, IT IS HARD TO GAUGE HOW SICK ETHAN REALLY IS . THIS IS THE FIRST TIME ETHAN HAS BEEN SICK ENOUGH THAT I PANICED A LITTLE. I READ ALL THE TIME ABOUT PWS KIDS ENDING UP IN THE ER WITH PNEUMONIA FROM THE COMMON COLD AND HOW DANGEROUS IT CAN BE FOR THEM. SO I WAS THE OVER PROTECTIVE MOM TAKING HIM TO THE DOCTOR GETTING HIM ON MEDS AND REFUSING TO LEAVE THE HOUSE UNTIL HE WAS BETTER.

FINALLY WE HAVE OUR LITTLE HAPPY BOY BACK. HE IS SUCH A CHARACTER. IN THE LAST FEW WEEKS ETHAN HAS PICKED UP SUCH A PERSONALITY, HE ACTS A LOT LIKE HIS DADDY. HE IS HIS BIGGEST FAN AND THINKS HE IS PRETTY FUNNY. HE SCREAMS AT THE TOP OF HIS LUNGS TO GET YOUR ATTENTION. HE  HAS ALSO LEARNED HOW TO WINK AT YOU, AND IT IS THE CUTEST THING EVER. RECENTLY HE HAS REALLY BEEN USING HIS SIGNS MORE, HE SIGNS MORE, EAT,  AND PLEASE, HE ALSO IS WAVING, HIGH FIVES, CLAPS, GIVES KISSES, GIVES HUGS, AND DANCES. I FEEL LIKE IN THE LAST MONTH OR SO HE IS REALLY CATCHING ON ALOT QUICKER. HE IS ALSO BECOMING MORE SOCIAL WITH PEOPLE. IT IS SO FUN TO SEE HIM TURN INTO A LITTLE BOY INSTEAD OF A BABY. IT IS AWESOME TO WATCH HIM HAVE EMOTION FOR THINGS NOW AND TO REALLY SEEM  INTERSTED IN NEW THINGS. ON THE STRENTGH SIDE HE IS GETTING STRONGER AND STRONGER. ALTHOUGH HIS STRENGTH IS  ETHAN'S BIGGEST STRUGGLE SO FAR HE HAS BEEN MAKING PROGRESS. 

WE ARE STILL WORKING ON CRAWLING INTHEARPY, HE IS SO CLOSE, BUT JUST NOT THERE YET. HIS ARMS ARE THERE, NOW WE JUST NEED TO GET HIS LEGS THERE. HE IS DEFINITLY WANTING TO MOVE A LOT MORE THAN EVER AND IS A LOT MORE ACTIVE, HIS MUSCLES JUST NEED TO CATCH UP.

ON THE OTHER SIDE OF HIM GROWING UP THE FITS/ TEMPER TANTRUMS HAVE STARTED. MAN THIS KID WILL LET YOU KNOW WHEN HE IS UNHAPPY. HE HAS BEEN SOOOOOOOOO GOOD FOR SO LONG HE KIND OF SPOILED US, AND THEN BAM ONE DAY HE THREW A FIT AND NEVER LOOKED BACK. HE WILL TURN RED AND YELL THEN THE TEARS START, IT IS SO HARD TO SIT AND WATCH HIM CRY AS HE IS THE SADDEST CRYER EVER.

IT IS HARD AS A FIRST TIME PARENT TO SET THE BOUNDARIES. IT IS HARD TO NOT JUST GIVE THEM WHATEVER THEY WANT BECAUSE THEY ARE JUST BABIES. IT IS HARD TO TELL THEM NO AND LET THEM CRY WHEN YOU AREN'T EVEN SURE IF THEY UNDERSTAND. RIGHT NOW I AM HAVING A REALLY HARD TIME SAYING NO TO ETH, AND I THINK THAT IS BECAUSE SOMETIMES I UNDERSTAND WHY HE IS CRYING. HE WANTS TO BE ABLE TO MOVE AND HE CAN'T BECAUSE OF HIS LOW-TONE. I THINK HE BECOMES SO FRUSTRATED WITH IT AND THAT IS WHERE SOME OF HIS FITS STEM FROM.  ALSO I SOMETIMES THINK IT IS OKAY TO SPOIL HIM. HE WAS DEALT A ROUGH HAND AND HAS BEEN THROUGH MORE THAN ANYONE SHOULD HAVE TO IN A LIFE TIME, AND I FEEL LIKE WHATS IT GOING TO  HURT IF HE GET A TOY HE WANTS OR IF HE DOESN'T WANT TO GO NAP IN HIS CRIB? THEN REALITY KICKS IN AND I REALIZE I HAVE TO BE FIRM WITH HIM AND I HAVE TO LEARN HOW NOW. WHEN HE IS OLDER AND HITTING HIS FOOD ISSUE STAGE JUST BECAUSE HE CRIES AND TELLS ME OVER AND OVER AGAIN THAT HE IS HUNGRY I CAN'T CAVE. I HAVE TO BE STRONG AND I HAVE TO DO WHAT IS BEST FOR HIM.

SO MY THERAPY FOR THE NEXT FEW WEEKS IS GOING TO BE TO NOT LET MYSELF CAVE SO MUCH, TO TEACH MY CHILD CRYING DOESN'T GET HIM WHATEVER HE WANTS, BUT TO STILL MAKE SURE HE KNOWS HOW MUCH I LOVE HIM.

few pics for fun- the last one is just because his hair is so awesomely out of control