THE PHONE CALLS ARE STARTING TO COME IN SO I FIGURE IT'S TIME FOR A LITTLE UPDATE. MY LAST BLOG WAS KIND OF DRAMATIC, I'M THINKING THIS WILL BE MUCH THE SAME, BUT THAT IS LIFE. IN A NUTSHELL, WE ARE STILL LOOKING FOR WORK, OUR HOME HASN'T SOLD, AND WE SPEND MOST OUR TIME HIDING OR AT HOSPITALS. BY JULY DYLAN WAS CRYING OR SCREAMING 98% OF THE DAY AND DROPPING TO THE GROUND, COULDN'T EVEN ROLL OVER. HIS EYES BEGAN ROLLING BACK INTO HIS HEAD. WE HAD BEEN TO THE DOCTOR CONSTANTLY FOR EAR INFECTIONS, SICKNESS, ETC. I ASKED FOR OXYGEN AND A MONITOR. NIGHTS WERE THE WORST. WE BEGAN FILMING HIS EPISODES OF COLLAPSING AND NOT BEING ABLE TO DO ANYTHING. BY AUGUST WE WERE SEEING A NEUROLOGIST AT PRIMARY CHILDRENS, WHO PUT HIM RIGHT IN THE HOSPITAL FOR OBSERVATION AND TO SPEED UP THE MRI. THE EEG HE HAD ALREADY CAME BACK NORMAL. DURING THE MRI THEY HAD TO PULL HIM OUT AND BAG HIM, THE ECHO WAS THEN ATTEMPTED WITHOUT SEDATION (ONLY GOT PART). WHAT THEY WERE GETTING WAS COMING BACK NORMAL. HIS BLOOD WORK SHOWED HIS LIVER ENZYMES TO BE OVER 800 WHICH BROUGHT THE METABOLIST IN TO THE PICTURE. HE PRESCRIBED CORNSTARCH AT NIGHT. WEIRD AND SIMPLE, HE WAS NIGHT AND DAY DIFFERENCE THE FOLLOWING MORNING. THEY SENT US HOME RUNNING TEST FOR A METABOLIC DISORDER. WE ARRIVED HOME AT 9:00 PM AND WERE AT OUR DOCTORS OFFICE BY 9:00 THE NEXT MORNING AND BACK AT PRIMARYS BY NOON. HE WENT BLUE HIS OXYGEN DROPPED TO THE 40'S AND ALL WE HAD WAS 3 LITERS AND COULD NOT HOLD HIM HIGHER THAN 75. WHILE IN THE HOSPITAL THEY REFERED US TO SEE AN ENT HE HAD SWOLLEN TONSILS AND THE MRI SHOWED LARGE ADENOIDS. WELL WE SAW AN ENT WHO WASN'T CONVINCED IT WAS SERIOUS ENOUGH TO REMOVE WITH HIM BEING 15 MONTHS. THE PULMOLOGIST/SLEEP DOCTOR ENTERED THE PICTURE AND ARGUED YOU CAN SEE HE HAS OBSTRUCTIVE SLEEP APNEA. A SLEEP STUDY WAS DONE REVEALING SEVERE OBSTRUCTIVE SLEEP APNEA. HE WAS IN SURGERY THAT AFTERNOON HAVING A T&A. THE ENT SAID HIS TONILS WERE NOT EXTREME, BUT HIS ADENOIDS WERE MASSIVE. A SURGERY THAT IS TYPICALLY IN AN OUT PUT US IN THE PICU FOR 3 DAYS. I LAUGH BECAUSE DYLAN AND I SLEPT ON EVERY FLOOR OF PRIMARY CHILDRENS. THE SLEEP STUDY WAS DONE ON THE FIRST FLOOR. HE WAS ADMITTED TO THE FOURTH, INTENSIVE CARE WAS 2ND AND WE SPENT A DAY ON THE 3RD AFTER BEING MOVED FROM INTENSIVE CARE. CRAZY, WELL THAT ALL TOOK PLACE IN AUGUST, HE STILL HAS BREATHING PROBLEMS AT NIGHT AND CAN'T MAINTAIN HIS OXYGEN, WE STRAP HIM UP EVERYNIGHT. HE HAS IMPROVED, BUT WERE STILL MISSING SOMETHING. HE SPIKED A HIGH FEVER AND THEN HIS LIMBS WENT BLUE, THEY SAID IT HAD TO DO WITH HIS SUGARS. O, THAT IS WHAT THE CORNSTARCH IS FOR TO STABILIZE HIS BLOOD SUGAR THROUGH THE NIGHT. MANY KNOW OUR FAMILY STRUGGLES WITH HYPOGLYCEMIA PROBLEMS WELL LOOKS LIKE OUR BABY HAS IT WORSE. I DON'T FULLY UNDERSTAND WHAT METABOLIC DISORDER HE HAS, BUT IT GIVES US A SPECIAL PAPER TO TAKE TO THE ER WHEN HE GETS SICK. WE HAVE TO MAKE SURE HE EATS, WHICH WE HAVE OCCUPATIONAL THERAPIST COMING IN TO HELP. OUR BEST EATER REFUSES TO EAT AND WE CAN ONLY GET HIM TO TAKE A BOTTLE, BUT CAN'T LET HIM GO WITHOUT ANYTHING OR WE HAVE PROBLEMS. EVERYTHING SEEMS TO BE A CATCH 22. WE CAN'T AFFORD FOR HIM TO GET SICK SO WE HIDE IN OUR HOME, THE KIDS ARE WASHED DOWN IN THE PARKING LOT OR FRONT DOOR BEFORE THE ENTER THE HOUSE OR CAR. I FREAK OUT ANYTIME WE HAVE AND APPOINTMENT CAUSE HOSPITALS ARE SICK PLACES. THE FLU SEASON IS NOT HELPING. WE HAVE SIX APPOINTMENTS COMING UP IN NOVEMBER WITH SPECIALIST AND MORE TESTING. HE IS ON BREATHING TREATMENTS, OXYGEN, MEDICATION. THEY SAW SOMETHING IN HIS LUNGS DURING HIS LAST X-RAY. AWESOME THINGS DO HAPPEN, CAMERON IS NOW ON CORNSTARCH AS WELL AS ORRIN. THEY BOTH SUFFER FROM BAD MIGRAINES AND NEVER LOOK RESTED AFTER SLEEP. THEY ALWAYS WAKE UP LOOKING LIKE THEY'VE BEEN THROUGH WAR WITH BAGS, DARK CIRCLES, AND JUST WORE OUT. THEY HAVE BEEN ON CORNSTARCH SINCE AUGUST AND IT IS NIGHT AND DAY DIFFERENT. CAM'S DOING SO WELL I THINK WE'VE CREATED A JOKING MONSTER. THEY HAVE BOTH STARTED TO PUT ON WEIGHT. FINALLY, MY SON IS GETTING SOME MEAT ON HIS BONES. AS YOU CAN SEE I FIND IT A BLESSING TO HAVE ORRIN AVAILABLE TO HELP WITH THE KIDS. IT IS A TAG TEAM EFFORT, WE HAVE MANY SLEEPLESS NIGHTS, MANY TEARS, LITTLE HELP ONLY CAUSE WE HAVE TO KEEP HIM AWAY FROM OTHERS (EVERYONE HAS KIDS). IF I DON'T MAKE SINCE, RAMBLE, HAVE INCORRECT SPELLING OR GRAMMER I PLEAD EXAUSTION AND INSANITY. OUR FOCUS IS ON OUR FAMILY AND MEETING THEIR INDIVIDUAL NEEDS CAM AND BRAYD WERE PASSED AROUND A LOT, OUR ATTENTION SEEMS TO BE ON DYLAN, SO ANY ENERGY OR TIME IS ON CAM AND BRAYD. WE LOVE ALL OF OUR BOYS SO FORGIVE US FOR NOT ANSWERING OUR PHONE OR KEEPING PEOPLE UPDATED WE JUST WANT OUR TIME SPENT LETTING OUR CHILDREN KNOW HOW MUCH WE LOVE THEM. I THINK THE BIGGEST FRUSTRATION IS JUST NOT KNOWING, AND HAVING A BABY THAT CAN'T COMMUNICATE WHERE HE HURTS. WE ARE ALSO WORKING WITH A CARDIOLOGIST AND LIVER DOCTOR. THE COOL THING IS WE ASKED THE KIDS WHAT THEY WANT TO DO AND THEIR ANSWER RIGHT NOW IS FAMILY HOME EVENING. THEY WANT TO CELEBRATE IT 7 NIGHTS A WEEK, OUR CHILDREN LET US KNOW WHAT THEY NEED WE JUST NEED TO LISTEN AND BE RECEPTIVE. THANK YOU ALL FOR YOUR PRAYERS AND CONCERN, IT IS TRULY APPRECIATED. I AM TRULY GRATEFUL FOR THE KNOWLEDGE I AM GAINING, THE INSIGHT AND STRENGTH WE ARE GAINING AS A FAMILY. YES, I AM HUMAN CONSTANT PRAYER TO GIVE ME THE STRENGTH TO MOVE FORWARDS, LOOK FOR THE BLESSING, AND STAYING FOCUSED ON HEAVENLY FATHERS LOVE FOR ME AND MY FAMILY CAN BE CHALLENGING SOMEDAYS. I KNOW THAT KEEPING THAT HOPE AND FAITH ALIVE EVEN IF IT'S A FLICKER AT TIMES WILL BRING US CLOSER TO GOD, INCREASE OUR TESTIMONY, AND STRENGTHEN US. MY FAMILY IS TRULY BLESSED.