ZOE HAD AN ENJOYABLE EASTER, BUT WAS DOWN A LITTLE WITH A COLD…

GOOD NEWS THOUGH IS THAT SHE WAS NOT SET OFF INTO A “CVS” ATTACK…AND THAT IS WITH BEING OFF THE MEDICINES “AMITRIPTYLINE” FOR ABOUT 7 WEEKS NOW…WE ALSO HAD ZOE TO “CHILDREN’S HOSPITAL OF PHILADALPHIA 2 WEEKS AGO, AND MET WITH THE PED. IN SPINA BIFIDA CLINIC, AND THEIR THINKING IS THE PROBLEM WITH THE LEGS AND THE DISCOLORATION (PURPLE BLUE FROM TOE TO JUST BELOW BOTH KNEES) IS CIRCULATION PROBLEMS CAUSED BY HER “SACRAL AGENESIS” AND THE WEIGHT GAIN OF THE PAST 2 YEARS…ZOE IS NOW REDUCED TO JUST 2 CANS OF PEDISURE A DAY, AND IS DOING VERY WELL WITH THAT…PICKING A LITTLE MORE ON FOOD, AND AS MUCH AS SHE LOVES HER “PEDISURE” SHE IS RESIGNED TO THE FACT THAT IT MUST BE LIMITED, AND WE ARE VERY PROUD OF HER FOR THAT…SHE HAS HAD SOME WEIGHT LOSS ALREADY, AND WE WILL BE WATCHING HER LEGS, FOR IMPROVEMENT…IF NOT, WE WILL BE MEETING WITH NEURO, AND HEART SOME TIME SOON…

SCHOOL WILL SOON BE COMING TO AN END, AND WE ARE GEARING UP FOR THE “VATER/VACTERL CONFERENCE” IN JUNE IN PHILADELPHIA, AND THEN ON TO 2 WEEKS AT THE BEACH WITH ZOE, AND FAMILY AND CLOSE FRIENDS…

HAPPY SPRING TO EVERYONE, AND STAY WELL…

GOD BLESS….

ZOE IS BACK IN THE HOSPITAL WITH A “CYCLIC VOMITING” ATTACK…ONLY 3 WEEKS SINCE THE LAST ONE, AND UNFORTUNATLY SPENDING ANOTHER VALENTINES DAY IN THE HOSPITAL…LAST YEAR SHE WAS IN PHILA. WITH PNEUMONIA.BUT SHE IS KEEPING HER USUAL “UPBEAT” SELF…

SHE IS ALSO BATTLING PROBLEMS WITH HER LEGS TURNING PURPLE/BLUE FROM THE TOES TO JUST BELOW HER KNEES….THIS HAS PLAGUED HER FOR THE LAST YEAR, AND THE THINKING IS NOW IS HAS TO DO WITH HER “SACRAL AGENESIS”…ZOE WAS BORN MISSING 3 OF THE 5 SACRUM BONES…WE WILL BE LOOKING INTO THIS FURTHER, AS SOON AS WE CAN…

HOPEFULLY ZOE WILL BE COMING HOME WITHIN THE NEXT DAY OR ZOE…THIS LOUSY “CVS” SEEMS TO WITH EACH EVENT NOW, LEAVE HER WITH A COUGH???  AGAIN, ANOTHER “WHY?”

GOOD NEWS IS, EVEN THOUGH THIS ATTACK IS JUST 3 WEEKS FROM THE LAST, HER LAST 3 WEEKS HAVE BEEN FULL AND WONDERFUL….

GOD BLESS…

Happy Holidays!!!!!!!!!!!!!!!!

Wow, Its been  2 months since we updated Zoe’s blog. Since Zoe’s Sept surgery she was admitted twice to our local hospital for colds that lead to CVS episoides.

Thankfully, we had a good thanksgiving and then Started putting up the bell with pop.  This year we all agreed was Zoe’s best christmas and she loved every minute of it.  She’s truely, growing into an amazing young lady.  Even staying up till after midnight on her “vacation”.

From our family to yours. Happy holidays!

Arlene & Jobey

Zoe went back to school yesterday.  So far all is going well.. Last night we went out to dinner with my parents for their 34th wedding anniversary.  Surprisingly, Zoe ate rather well.

We got some pictures uploaded, and now some pages are working.  I am still working on the Links page. Gathering as much information for it as I can..

As you can see Zoe’s site is getting a complete revamp.  I know I have been lacks in it however the site was offline due to issues beyond our control.

Last month she just had her 31st surgery I believe and it was a tough one ans she is now just really starting to recover.  This week we had another “CVS” episode.  However, it was the 1st since June so the medicine is working.

Unfortunately I was unable to completely back up the data bases so we are  pretty much starting all over.

Thanks for stopping by & come back soon.

Arlene