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Sunday, August 30, 2009

8/28 CF clinic visit

Ben had another clinic visit on Friday at UCSF. Overall, it was a pretty good visit. He weighs 17 1/2 lbs which is well over the 50th percentile (yay!!). He is 27 inches tall which is also well over the 50th percentile. Ben's nutritionist is so pleased with his weight that she has given us the green light to start solids in a couple weeks. We won't even need to supplement his food with anything (like olive oil) since is weight has been so solid. The downfall was the little cough that Ben has developed. Our pulmonologist is a bit nervous about it and has suggested we do an infant PFT. I cannot begin to explain what this test does so I have found some info online-

"Pulmonary Function tests, also known as PFTs, are tools we use to determine the state of health of a child's lungs. Like adult Pulmonary Function Tests (PFTs), this test can provide your child's caregiver with information about how well his/her lungs are working. If your child takes medicine to help him/her breath this test may help determine how well the medicine is working.. Children 5 year of age and older begin to be capable of performing the challenging breathing maneuvers necessary for meaningful pulmonary function testing.

Pulmonary function tests always include spirometry. Spirometry is a test that measures the volume of air that can be exhaled from the lung after the child breathes in their largest possible breath. Spirometry also measures how fast the air comes out (the flow). To perform this test, a patient is asked to place his mouth around a cardboard mouthpiece on a long tube attached to our computers. The patient also puts on a nose-clip to prevent air from leaking out the nose during the test. The patient will first begin by breathing quietly through the mouthpiece. He/ she will then be instructed to take in the biggest breath possible, and then blow it out as hard, as fast, and as long as possible. The computer measures he amount of air breathed out over time.

Another important value is the Total Lung Capacity (TLC), which is a measurement of the total amount of air a patient's lungs can hold. This measurement is performed in a body plethysmograph, or "the Box." The box is a clear Plexiglas booth, similar to a telephone booth. The patient sits inside the booth and breathes into a tube in a manner similar to spirometry, and again the tube attached to a computer. The computer then calculates the patient's lung volume."

The scariest part of the test is putting Ben under anesthesia. It is an oral medicine he will have to take. The procedure takes about an hour. Ryan and I have decided this is what is in Ben's interest to do. I know another CF mom who had her son go through the same test. We will be scheduling the PFT for the end of September. We will keep you posted on the results. For now I leave you with some hilarious pictures. Ben discovered the paper that covers the patients table at the hospital. He had the best time tearing it up and throwing it around!!

The Living Breath Foundation

On Tuesday, I went with my parents, in-laws and friends to a foundation dinner benefiting people with Cystic Fibrosis. It was so good to meet other CF families and children living with CF in the Monterey area. There was a silent auction followed by dinner and then a live auction. I was able to met the founders, Chris & Lori Pappageorgas, who started the foundation after the diagnosis of CF in their two children. They provide finical aid to people living with CF. The dinner was very well put together, I look forward to next year! Please visit their site:
My mom and I at the dinner

Tuesday, August 18, 2009

First cereal

Ben had his first taste of cereal yesterday. I decided to start the cereal because he was continuously watching Ryan and I eat. He was even starting to fuss when we did! He did great with very little mess. He is a pro at eating off the spoon, he's been doing it since he was two weeks old with his enzymes!

Sunday, August 9, 2009

Happy Birthday Nana!

We were so excited to celebrate your bday with you Nana! We were even more excited to let you in on our secret! Tom put on an amazing birthday party for you and we had such a good time. It was so great to have the rest of the family meet Ben. We are looking forward to next year! :)

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