Thursday, November 19, 2009

Thankful for my Toots!

Today, Olivia's daycare had Thanksgiving lunch for the families and it was super yummy. We are talking turkey, gravy, stuffing, creamed corn, 2 kinds of sweet potato get the yummy picture. Anyway, when we picked her up later she was changed into clean clothes (after a little accident) and her teacher had put her up in a ponytail. It was so cute that it kept me giggling and I knew that I had to photograph it for you....

How can you not love this little girl, be thankful you get to have her in your life and call her your daughter?

Wednesday, November 11, 2009

Clinic Update - November

Olivia had a great Clinic today!
  • Her O2 saturation was 100% again.
  • She weighs 25 pounds (47th percentile) and is 33.5 inches tall (82nd percentile). I don't know what that makes her height/weight ratio - they have been happy enough the last two appointments that we didn't even meet with her Nutritionist.
  • Also, because of her being so good and healthy we didn't have to meet with Respiratory Therapist (but she stopped to make sure we were good on supplies) or her Physical Therapist.
  • The doctor listened to her lungs and said they sound really good and that she's a "really good breather".
  • Her doctor also talked to us about some really exciting drugs in the pipeline for CF'ers. We talked a bit about VX-809 and how when it becomes available in a few years will correct the basic defect. People in the trial for it re-took the Sweat Test and it came back negative. I find this to be completely encouraging and warms my heart more than I can say!
  • She will most likely not be getting the Synagis shots (for RSV) this year even though she will be under 2-years-old during RSV season because he feels she is doing well enough that it isn't mandatory.
  • She has had some issues lately with constipation and diarrhea because of antibiotics so I've been monitoring her Miralax and deciding day-by-day how much she needs and he thought I was doing quite well with that. The better things go in Poopytown mean the better she will do with her Prevacid, enzyme and food absorption which effect her overall health and growth.
  • He added Zithromax to her medication list to act as an antibiotic and anti-inflammatory.
That pretty much wraps up how clinic went.
Here are two pictures of her from Friday night...

Tuesday, November 10, 2009

78 Years Old with CF!!!

I received this e-mail from the Special Event Manager at our CFF Branch. It really is worth the time to read!!

This morning I received a phone call from a Mr. Hal Soloff. Mr. Soloff has cystic fibrosis and is 78 years old. YES, you read correctly, 78 years old! After talking to Mr. Soloff for quite sometime, I was determined to share his story with each of you! Mr. Soloff is originally from Chattanooga, TN and graduated from the University of Tennessee Law in 1957. He currently lives in Connecticut but has many ties to the East Tennessee area.

I have attached an article written by Mr. Soloff just 6 years ago. I think each of you will find him as interesting as I did. What an amazing CF story to share with all! If you would like to contact Mr. Soloff he can be reached at He assured me, he loves answering questions and getting emails."

Here is the article...

Hal, 72 Years Old with CF
By Hal Soloff

Methuselah supposedly lived for 969 years. Yet, if someone survives Cystic Fibrosis for 72 years, it’s considered an accomplishment. I could speculate that my mother’s insistence that I wash my hands frequently, not put coins in my mouth, and take my cod liver oil everyday played an important part in my longevity. At any rate, I have overcome many obstacles in a full lifetime.

An accurate medical diagnosis of my cystic fibrosis came late in life. In 1935, at age four, my parents took me to a child psychiatrist in Providence, RI, as our family doctor couldn’t explain why I was having bowel and breathing problems. The psychiatrist suggested that it might be psychosomatic. That planted the seed in my parents’ minds that my physical problems were really mental, thus my own fault.

At age eight, I was hospitalized due to dehydration, breathing difficulties, and digestive problems. The doctors put me on IVs for over a month, but the hospital psychologist told my parents my illness was due to jealousy of my baby sister! It would be another twenty years before my CF would be correctly diagnosed.

Despite physical challenges, I have always strived to excel academically and in extracurricular activities. Although I went to the doctor’s office four times a week after school to sit on an inhalation machine for an hour, I maintained good grades in school, played in the school band and orchestra, and served as the editor of the school newspaper.

At age ten, my parents bought me my first drum, as they got tired of my banging on radiators and ash trays. Six years later, I was a professional musician playing in a dance band and the timpanist in the local symphony orchestra. At the end of high school, I had decisions to make. Seeing the consequences of the Great Depression and World War II, it became my desire to go beyond the ordinary aspects of day to day living. I wanted to be a participant, not just an observer.

When several of my closest friends who had joined the Army and Marine reserves were sent to Korea during the war there, I went to the Air Force recruiting office. Without giving me a physical, they took me. My parents were shocked! My weight was less than the minimum 120 pounds, but the recruiting sergeant put his foot on the scale. I served two years before the oxygen system on our plane broke down during a flight, and we were sent to an Air Force hospital. After one look into my swollen and bleeding sinuses, the Air Force gave me an honorable discharge due to physical disability.

I returned to college, and in my senior year at law school, met my future wife. We have been married for almost 47 years and have two adopted children. During the early years of our marriage, I was an attorney and stockbroker with a New York Stock Exchange firm.

The diagnosis of CF was made in April 1959 at Boston’s Children’s Hospital, by the late Harry Shwachman, M.D., who was the dean of CF doctors. I was 28, and had been married for 3 years. After giving me a couple of sweat tests and reading my extensive medical records which included a history of digestive involvement, many sinus surgeries to remove polyps, two Caldwell Luc surgeries, hospitalizations on IVs, and X-rays with unexplained shadows, Harry, who became a friend as well as my CF doctor for many years, told me I had Cystic Fibrosis. I recoiled in fear expecting to break out in cysts all over my body, and that my few muscles would become fibrous. He went on to explain the disease, and my thoughts were, having survived acne, maybe cysts would be better than CF?

Two weeks later, my married younger sister was also diagnosed with CF. She died in September of that year a few weeks after giving premature birth to a girl, who now is married and has two daughters of her own. There is no physical pain equal to losing a child or sibling.

After being diagnosed with CF, the doctors’ prognosis then was I had about two years left. But I went on to earn two masters and a doctorate in jurisprudence. My 27 years of teaching at a private secondary school and on the college undergrad and graduate levels were most rewarding.

I have been the subject of two DNA studies. We can ponder why some survive and others do not, and there are no simple answers. However, a positive, determined attitude to survive, love from family and friends, and of course, excellent medical care have been the answers in my case.

My wife and I love to travel, and we are Associates of the University of London, a title granted when we each completed our lectures and theses. While lecturing at colleges and civic organizations there, we got to know the British national health care system quite well and had excellent doctors. We’ve hiked in the Cairngorms of Scotland, along the coast of Cornwall, Snowdonia in Wales, along the Hardangerfjorden of Norway, the Alps of Switzerland, the Rockies of Montana and Alberta, Canada, along a glacier in Alaska, and up an extinct volcano in Hawaii. Our next trip, hopefully, will be to Arizona and the Grand Canyon, where I understand there is an opening larger than my mouth. Finally, my wife will find out if it’s true!

Monday, November 9, 2009

Stellan knocks it out of the park!!!

For those of you that have been praying, wishing, hoping an sending warm fuzzies along with me to Stellan and his family-there is great news!! Stellan's ablation surgery was a complete success and he is now SVT free! Click HERE to read her recap of the procedure and its amazing outcome...

Monday, November 2, 2009

Olivia as The Not-So-Cowardly Lion (aka Halloween)

or Olivia's first trick-or-treating Halloween , she went out as a very courageous lion. It was raining (and she had a fever compliments of her ear infection) so she only went to three houses, but she did it with style and moxie!