July 6, 1999 - 16 months old
Benjamin is doing absolutely wonderful so
far this summer! He is just getting over having thrush and strep throat and scaring his
mom and dad for about five days, but overall, he's been doing great since his last
hospitalization in February.
August 8, 1999 - 17 months old
We just got back from Wisconsin Dells, WI. We met with five other
families from the PD Heart list, some of whom we've "talked" with on the
internet since we found out about Ben's heart defect. It was wonderful to meet others who
have gone through similar surgeries, feelings and issues with their
"heart-kids". As soon as I have the pictures developed, I will get them on the
September 5, 1999 - 18 months old
Ben and his car...his favorite word, too!
Ben is doing OK. He's been fighting a fever and diarrhea, but seems to be getting better. A quick call to the cardiologist revealed that Ben may get to come off his digoxin and vasotec at his next appointment (9/16). Then he would only be on 1/2 baby aspirin a day! Dr. Singh said that the chances for heart failure are very reduced after the Glenn, so the digoxin really is not needed.
September 17, 1999 - 18.5 months old
Benjamin had an AWESOME checkup! Dr. Singh did take him off Digoxin, but kept him on Vasotec for his blood pressure, just as a precautionary method. The best news of all is that there was no talk of doing the next surgery, the fontan, right now!! We don't even have to go back for a checkup for 6 MONTHS! We are so very, very thankful for this news. Ben's oxygen saturation levels were actually 88-90, which is the highest they have ever been. At his last appointment in May, he was only in the upper 70's. We were told that it could be 4-5 years before the next surgery IF Ben's levels stayed in the upper 80's. That's quite unlikely, but it was sure nice to hear. When Ben goes back in March, 2000, they will do a heart cath, which will give them a much clearer picture on how Ben's heart is doing. Until then, we look forward to updating this site with pictures of Halloween, Thanksgiving and Christmas!
November 1, 1999 - 20 months old
Benjamin is still doing very well. He was hospitalized for two days with croup at the end of September, but since then, has developed in leaps and bounds. He's running around the house, keeping us busy at all times. He's talking a mile a minute, too. He had a speech evaluation, but tested at or above his age level in all areas, so he does not need speech therapy. He continues with physical therapy once a week, simply to help with the fine motor development. All things considered, our little Benjamin is just like any other healthy active 20 month-old. We try not to think of what lies ahead, but instead choose to enjoy every minute with him and our other two children!
January 6, 2000 - 22 months old
We have had a relatively calm last few months. Benjamin is still doing pretty well, although we feel it may be getting close to time for the fontan. Ben seems to be getting a little more blue, which may mean he's outgrowing the current capacity of his heart. He eats like a horse, so this certainly may be the case. We were trying to get to March without a check up, but we have decided to move that up. Ben's next appointment with the cardiologist is January 27th. We expect to probably just check his oxygen levels and maybe have an x-ray done, to see if the heart has enlarged any. We will probably then schedule a cardiac catheterization, which will tell us whether Ben's cardiac condition looks good to attempt the fontan. Please keep Ben in your prayers.
January 27, 2000 - 22.5 months old
What WONDERFUL news we received today! Benjamin had a cardiology appointment, and we could not have asked for things to have gone any better! His sats were around 85% (despite his bluer color). He had a sedated echo, which came back with very positive results. His heart function, coarc. repair site, and pulmonaries look very, very good. He has just slight tricuspid valve regurgitation, but that's nothing to worry about right now. He weighed in at a whopping 22lbs. 10 oz. We were sure he'd weigh more simply because he's eating like a horse, but that just wasn't the case.
We were told that we don't need to go back for a cardiology check-up until May. At that time, we'll start discussing what we need to do next. We were told to expect the fontan sometime in the Fall. What wonderful, wonderful news that was! We get to enjoy our summer without it being interrupted or put on hold for surgery!
April 16, 2000 - 2 years, 1 month!!
BENJAMIN TURNED TWO YEARS OLD!! Benjamin continues to do very well! He's as normal as any other two year-old! Ben is climbing all over things and getting into trouble. He loves the outdoors, Barney, Teletubbies and his baths! We are scheduled for a check-up next month, possibly to schedule a heart cath. We'd like to delay the whole process until after July. We have taken on the task of building a new home, which should be done the end of June. We hope and pray that Ben continues to do well through the summer!!