I wanted to show everyone just how cute my niece Ryanne is. She did this for her school project
Wednesday, August 24, 2011
Thursday, August 18, 2011
ETHAN'S FIRST CAMPING TRIP
WE HAD SO MUCH FUN GOING CAMPING, AND HAD PRETTY GOOD WEATHER. IT IS FUNNY TO THINK HOW MUCH STUFF WE HAD TO BRING, AND 90% OF IT WAS FOR ETHAN. CAMPING GETS A LOT HARDER TO PACK FOR WITH A KID.
WE WENT UP TO GRANT COLORADO AND SPENT A MUCH NEEDED WEEKEND AWAY WITH THE FAM ( MAG AND SPENCE WE MISSED U). HERE ARE SOME PICTURES FROM THE TRIP.
WE WENT UP TO GRANT COLORADO AND SPENT A MUCH NEEDED WEEKEND AWAY WITH THE FAM ( MAG AND SPENCE WE MISSED U). HERE ARE SOME PICTURES FROM THE TRIP.
UPDATE- I HAVE BEEN SO BAD ABOUT KEEPING THIS UP
*ETHAN IS SITTING BY HIMSELF NOW- THIS IS VERY EXCITING FOR US SINCE RIGHT BEFORE THE CAST THIS IS WHAT WE WERE WORKING ON. HE IS BACK TO WHERE WE LEFT OFF, BUT STRONGER THIS TIME. HE LOVES HAVING THAT LITTLE BIT OF INDEPENDENCE.
* ETHAN IS GAINING WEIGHT- AT THE PWS CLINIC WE FOUND OUT ETH WAS PRETTY UNDERWEIGHT, SO WE STARTED HIM ON A WHOLE NEW DIET. IT SEEM TO BE DOING THE TRICK. WE WANT ETH TO BE UNDERWEIGHT FOR AN AVERAGE 13 MONTH OLD BECAUSE HE HAS NO MUSCLE, SO HE IS STRICTLY FAT, BUT WE STILL NEED HIM TO GAIN SOME WEIGHT TO BE ON TRACT FOR WERE OUR PWS DR. WANTED HIM.
*ETH IS CLOSE TO PUTTING WEIGHT ON HIS LEGS- ETH WILL NOT BARE ANY WEIGHT ON HIS LEGS, WHICH IS ALSO A COMBINATION OF THE LOW MUSCLE TONE AND THE CAST. BUT HE IS GETTING CLOSE. NOW HE WILL AT LEAST PUT HIS FEET DOWN TO THE GROUND AND BOOTY DANCE..... FOR ANYONE WHO HAS SEEN HIM DO IT YU HAVE TO ADMIT IT IS THE CUTEST THING EVER.
* ETHAN IS BECOMIN MORE VOCAL- WHEN HE WAS IN HIS CAST I DIDN'T REALIZE HOW MUCH HE HATED IT UNTIL WE GOT IT REMOVED. HE IS SOOO MUCH HAPPIER NOW, HE LAUGHS AND SMILES CONSTANTLY. HE IS ALSO STARTING TO MAKE A LOT OF NOSIES WITH HIS MOUTH AND STARTING TO GET LOUDER.
* GOT A NEW PHYSICAL THERAPIST- EXCITED THAT WE WILL BE GETTING INTO THERAPY AGAIN ( OUR OLD PT LEFT THE COMPANY AND WE HAVE BEEN WAITING FOR WEEKS FOR A NEW ONE)
* GOT A NEW SPEECH THERAPIST- EXCITED TO SEE HOW ETH WILL DO. WE HAD A SPPECH THERAPIST, BUT SHE ONLY SHOWED UP TWICE AND THEN QUIT AND NEVER TOLD US SO WE HAVE BEEN WAITING A WHILE TO GET A NEW ONE.
* GOT A NEW PEDITRICIAN- YOU WILL NEVER KNOW HOW EXCITED I AM THAT WE MADE THE CHANGE, HE IS GREAT. HE CARES A LOT ABOUT PWS AND ETHAN, AND IT HELPS THAT HE HAS A NIECE WITH PWS. I THINK IT MAKES HIM HAVE A PASSION TO LEARN ABOUT PWS. WE HAD A AWESOME FIRST VISIT AND WE HAVE A GREAT GAME PLAN. IT WAS NICE TO GO TO A DOCTORS OFFICE AN NOT HAVE TO EXPLAIN WHAT PRADER WILLI IS, AND IT WAS NICE TO GO TO A DOCTOR THAT HAS ALREADY LOOKED AT YOUR KIDS RECORDS AND HAS DONE HIS RESEARCH.... VERY HAPPY WITH HIM.
THAT IS ALL FOR NOW HERE ARE SOME PICTURES
Thursday, August 4, 2011
CATAPLEXY
ON ETHAN'S BIRTHDAY HE STARTED TO GET THESE SPELLS. WHENEVER HE WOULD LAUGH OR EAT HE WOULD ALL THE SUDDEN LOSE CONTROL ALMOST LIKE A SEIZURE, BUT WOULD SNAP OUT OF IT VERY QUICKLY. FOR THREE DAYS IN A ROW THIS WAS HAPPENING SO WE CALL THE DR. IN THE NUEROLOGY DEPARTMENT TO SEE IF WE COULD GET AN EEG.
WHEN ETHAN WAS BORN HE HAD SEIZURES AND WE HAD HIM ON MEDS THE FIRST 6 MONTHS OF HIS LIFE. KEVIN AND I HAD JUST ASSUMED THAT IS WHAT IT WAS AND THAT WE WOULD NEED TO PUT HIM ON HIS MEDS AGAIN. THEN AROUND THE SAME TIME ETHAN WAS HAVING HIS SPELLS I STARTED TO READ ABOUT OTHER PWS MOMS FINDING THEIR CHILDREN DOING THE SAME THING. SO I STARTED LOOKING INTO IT MORE. THE WORD CATAPLEXY WAS THROWN AROUND A LOT IN THE RESARCH OF OTHER PARNETS SO I LOOKED INTO IT. WHEN READING ABOUT CATAPLEXY IT SEEMED TO FIT EXACTLY WHAT ETHAN WAS DOING, SO I WAS GOING TO MAKE SURE TO MENTION IT TO THE DOCTOR.
WE GOT TO CHILDREN'S AT 12 AND THEY STARTED THE EEG. WE WERE NOT LOOKING FORWARD TO THIS AS ETHAN IS NOT A FAN OF EEGS OR SLEEP STUDIES. IT WAS A ROUGH HOUR AND 50 MINUTES TRYING TO GET ETHAN TO FALL ASLEEP SO THEY COULD GET A GOOD READ.
WE THEN HAD TO GO TO THE NEUROLOGY APPT AT 2:00 SO THEY COULD TELL US WHAT THEY HAD FOUND. I AM OKAY WITH WAITING A WHILE AT THE DOCTORS OFFICE, I KNOW SOME UNEXPECTED STUFF COMES UP AND IT HAPPENS, BUT WE DID NOT GET BROUGHT BACK TO THE ROOM UNTIL 4:15. BOTH OF US WERE SO FRUSTRATED BUT ALSO WORRIED THEY HAD TO EVALUATE HIS EEG THAT LONG.
WHEN WE FINALLY SEE THE DOCTOR HE ASKS US ABOUT THE SPELLS ETHAN WAS HAVING AND ASKED WHAT THEY LOOKED LIKE AND SO ON, AFTER TALKING A WHILE HE SAID THAY SOUNDED LIKE SEIZURES BUT THE EEG CAME OUT WITH NO SEIZURE ACTIVITY. I THEN QUESTIONED " COULD THIS BE CATAPLEXY?" HE AND THE OTHER 3 DOCTORS REMOVED THEMSELVES FROM THE ROOM AND CAME BACK A WHILE LATER. HE HAD TOLD US THAT THEY HAD GONE AND LOOKED UP CATAPLEXY TO GET A LITTLE BETTER OF AN UNDERSTANDING AND THAT INDEED ETHAN HAD CATAPLEXY... THEN HE WENT INTO THIS BIG LONG STORY ABOUT HOW HARD IT IS TO TREAT CATAPLEXY AND THAT IT IS MUCH HADRER TO TREAT IN YOUNGER CHILDREN. HE SAID THAT THIS COULD BECOME MORE OF A PROBLEM WHEN ETH GETS TO WALKING AGE AND HE STARTS RANDOMLY COLAPSING.
WE LEFT THE DOCTORS WITH HIM SAYING WE WILL HAVE TO CALL YOU NEXT WEEK AFTER WE DO SOME MORE RESEARCH ON HOW TO TREAT HIM....I LEFT FEELING MORE LOST THEN BEFORE WE GOT THERE.
WE ARE THANKFUL THEY AREN'T SEIZURES, BUT I WONDER WOULD HE HAVE EVEN THOUGHT ABOUT CATAPLEXY WITH OUT ME MENTIONING IT TO HIM? DID I JUST DIAGNOSE MY OWN CHILD? HE DIDN'T LEAVE ME CONFIDENT THAT HE KNEW THAT IS WHAT IT WAS. HALF THE STUFF HE WAS SAYING I KNEW HE JUST COPIED STRAIGHT OF THE INTERNET BECAUSE I HAD BE RESEARCHING IT FOR WEEKS AND HAD HALF THOSE SITES MEMORIZED. I ALMOST FEEL LIKE HE, WASN'T SURE WHAT IT WAS, I GAVE HIM THE START MY MENTIONING IT TO HIM, HE LEFT THE ROOM TO LOOK IT UP ON THE INTERNET THEN DID A DIAGNOSES OF THAT.
I AM NOT COMFORTABLE WITH IT, THERE IS NO CONFIEDENCE BEHIND IT. WHEN ETH GOT DIAGNOSED WITH PWS THERE WAS PROOF THERE WAS BLOOD WORK THERE WERE GENETICS TESTS. WITH THIS IT IS LIKE A " I THINK SO" AND TO ME THAT ISN'T GOOD ENOUGH.
WE GOT A CALL BACK YESTERDAY TELLING US AFTER THEY RESEARCHED THEY DECIDED ETHAN WAS TO YOUNG TO TRY TO TREAT FOR CATAPLEXY, AND WE NEED TO JUST LET IT HAPPEN UNLESS OBVIOUSLY IT GETS WORSE UNTIL HE GETS OLDER. THEY SAID IT WOULD BE REALLY HELPFUL TO CATCH ONE OF HIS SPELLS ON VIDEO, SO THAT IS MY NEXT GOAL.
WE HAVE DECIDED WE ARE GOING TO SEEK A SECOND OPINION BUT TRYING TO FIGURE WHO WE GO TO. SO AS OF NOW WE WILL TAKE THE DIAGNOSES CATAPLEXY AND HANDLE IT THE BEST WE CAN, BUT I WILL DEFINITLY BE GETTING ANOTHER OPINION BEFORE MEDICATING HIM FOR IT.
CATAPLEXY-
Cataplexy manifests itself as muscular weakness which may range from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually the speech is slurred, vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. These attacks are triggered by strong emotions such as exhilaration, anger, fear, surprise, orgasm, awe, embarrassment, and laughter. A person's efforts to stave off cataplectic attacks by avoiding these emotions may greatly diminish their quality of life, and they may become severely restricted emotionally if diagnosis and treatment is not begun as soon as possible.[3]
Cataplexy may be partial or complete, affecting a range of muscle groups, from those controlling facial features to (less commonly) those controlling the entire body.[4]
WHEN ETHAN WAS BORN HE HAD SEIZURES AND WE HAD HIM ON MEDS THE FIRST 6 MONTHS OF HIS LIFE. KEVIN AND I HAD JUST ASSUMED THAT IS WHAT IT WAS AND THAT WE WOULD NEED TO PUT HIM ON HIS MEDS AGAIN. THEN AROUND THE SAME TIME ETHAN WAS HAVING HIS SPELLS I STARTED TO READ ABOUT OTHER PWS MOMS FINDING THEIR CHILDREN DOING THE SAME THING. SO I STARTED LOOKING INTO IT MORE. THE WORD CATAPLEXY WAS THROWN AROUND A LOT IN THE RESARCH OF OTHER PARNETS SO I LOOKED INTO IT. WHEN READING ABOUT CATAPLEXY IT SEEMED TO FIT EXACTLY WHAT ETHAN WAS DOING, SO I WAS GOING TO MAKE SURE TO MENTION IT TO THE DOCTOR.
WE GOT TO CHILDREN'S AT 12 AND THEY STARTED THE EEG. WE WERE NOT LOOKING FORWARD TO THIS AS ETHAN IS NOT A FAN OF EEGS OR SLEEP STUDIES. IT WAS A ROUGH HOUR AND 50 MINUTES TRYING TO GET ETHAN TO FALL ASLEEP SO THEY COULD GET A GOOD READ.
WE THEN HAD TO GO TO THE NEUROLOGY APPT AT 2:00 SO THEY COULD TELL US WHAT THEY HAD FOUND. I AM OKAY WITH WAITING A WHILE AT THE DOCTORS OFFICE, I KNOW SOME UNEXPECTED STUFF COMES UP AND IT HAPPENS, BUT WE DID NOT GET BROUGHT BACK TO THE ROOM UNTIL 4:15. BOTH OF US WERE SO FRUSTRATED BUT ALSO WORRIED THEY HAD TO EVALUATE HIS EEG THAT LONG.
WHEN WE FINALLY SEE THE DOCTOR HE ASKS US ABOUT THE SPELLS ETHAN WAS HAVING AND ASKED WHAT THEY LOOKED LIKE AND SO ON, AFTER TALKING A WHILE HE SAID THAY SOUNDED LIKE SEIZURES BUT THE EEG CAME OUT WITH NO SEIZURE ACTIVITY. I THEN QUESTIONED " COULD THIS BE CATAPLEXY?" HE AND THE OTHER 3 DOCTORS REMOVED THEMSELVES FROM THE ROOM AND CAME BACK A WHILE LATER. HE HAD TOLD US THAT THEY HAD GONE AND LOOKED UP CATAPLEXY TO GET A LITTLE BETTER OF AN UNDERSTANDING AND THAT INDEED ETHAN HAD CATAPLEXY... THEN HE WENT INTO THIS BIG LONG STORY ABOUT HOW HARD IT IS TO TREAT CATAPLEXY AND THAT IT IS MUCH HADRER TO TREAT IN YOUNGER CHILDREN. HE SAID THAT THIS COULD BECOME MORE OF A PROBLEM WHEN ETH GETS TO WALKING AGE AND HE STARTS RANDOMLY COLAPSING.
WE LEFT THE DOCTORS WITH HIM SAYING WE WILL HAVE TO CALL YOU NEXT WEEK AFTER WE DO SOME MORE RESEARCH ON HOW TO TREAT HIM....I LEFT FEELING MORE LOST THEN BEFORE WE GOT THERE.
WE ARE THANKFUL THEY AREN'T SEIZURES, BUT I WONDER WOULD HE HAVE EVEN THOUGHT ABOUT CATAPLEXY WITH OUT ME MENTIONING IT TO HIM? DID I JUST DIAGNOSE MY OWN CHILD? HE DIDN'T LEAVE ME CONFIDENT THAT HE KNEW THAT IS WHAT IT WAS. HALF THE STUFF HE WAS SAYING I KNEW HE JUST COPIED STRAIGHT OF THE INTERNET BECAUSE I HAD BE RESEARCHING IT FOR WEEKS AND HAD HALF THOSE SITES MEMORIZED. I ALMOST FEEL LIKE HE, WASN'T SURE WHAT IT WAS, I GAVE HIM THE START MY MENTIONING IT TO HIM, HE LEFT THE ROOM TO LOOK IT UP ON THE INTERNET THEN DID A DIAGNOSES OF THAT.
I AM NOT COMFORTABLE WITH IT, THERE IS NO CONFIEDENCE BEHIND IT. WHEN ETH GOT DIAGNOSED WITH PWS THERE WAS PROOF THERE WAS BLOOD WORK THERE WERE GENETICS TESTS. WITH THIS IT IS LIKE A " I THINK SO" AND TO ME THAT ISN'T GOOD ENOUGH.
WE GOT A CALL BACK YESTERDAY TELLING US AFTER THEY RESEARCHED THEY DECIDED ETHAN WAS TO YOUNG TO TRY TO TREAT FOR CATAPLEXY, AND WE NEED TO JUST LET IT HAPPEN UNLESS OBVIOUSLY IT GETS WORSE UNTIL HE GETS OLDER. THEY SAID IT WOULD BE REALLY HELPFUL TO CATCH ONE OF HIS SPELLS ON VIDEO, SO THAT IS MY NEXT GOAL.
WE HAVE DECIDED WE ARE GOING TO SEEK A SECOND OPINION BUT TRYING TO FIGURE WHO WE GO TO. SO AS OF NOW WE WILL TAKE THE DIAGNOSES CATAPLEXY AND HANDLE IT THE BEST WE CAN, BUT I WILL DEFINITLY BE GETTING ANOTHER OPINION BEFORE MEDICATING HIM FOR IT.
Cataplexy manifests itself as muscular weakness which may range from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually the speech is slurred, vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. These attacks are triggered by strong emotions such as exhilaration, anger, fear, surprise, orgasm, awe, embarrassment, and laughter. A person's efforts to stave off cataplectic attacks by avoiding these emotions may greatly diminish their quality of life, and they may become severely restricted emotionally if diagnosis and treatment is not begun as soon as possible.[3]
Cataplexy may be partial or complete, affecting a range of muscle groups, from those controlling facial features to (less commonly) those controlling the entire body.[4]
- Arm weakness
- Sagging jaw
- Drooping head
- Slumping of the shoulders
- Slurred speech
- Generalized weakness
- Knee buckling
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