Thursday, December 18, 2008

We've Caught the Christmas Bug!

Lainey at the Cystic Fibrosis Center for an appointment.
Today my mom had an appointment at the Adult Cardiac Clinic at Emory and Lainey had her monthly check up at the Cystic Fibrosis Center. This was a long day, but not too much change ~ this is good for some areas of both mom's and Lainey's check up, but not so good for other areas!
Mom's numerous doctors think she doing well, but will be doing better when she gets over her cold. Last week she went to her local doctor only to find out she was about a day away from developing pneumonia! After a week of medications, she sounds and feels much better. Her doctors at Emory want her to begin her breathing treatments again when she is completely over her cold. The breathing treatments were working well for mom for a long time, but her body quit responding as well after several years. In July the doctors took her off of the treatments and put her on another medication given through a needle in the stomach! After a week in the hospital and a week at home, mom was in so much pain that she never left the house. Her quality of life was effected by the medication, not to mention the pain was horrible. When the doctors took her off the medication, they decided to wait on starting her treatments again. Since August, mom has been able to feel a huge difference in her energy level without the breathing treatments. Hopefully when she begins the treatments again in the next few weeks, she will feel better. The biggest downside to the treatments is the strict regimen it requires. Every three hours she must use a nebulizer to complete her 10 minute treatment. This is quite difficult when you try to go out shopping or when you are driving somewhere. Although it can be inconvenient, anything to keep mom happy and healthy is something we can deal with!
Lainey also had some good and some not so good reports at the doctor today! Her height was 26 .75 inches and her head was 17.5 inches ~ both of which were the same as when she went to her regular pediatrician two weeks ago. Her weight was 15 lbs. 3.8 oz. This is where the issue lies! She has only gained 4 oz since her appointment at the CF Center 1 month ago! She weighed less that she did at her pediatrician's office two weeks ago! Our new plan for weight gain is to begin feeding her every 3 hours, only formula. If she finishes 5 oz. of formula, she can have baby food. Her dietitian wants her to take at least 30 oz of formula per day. Currently she is only consuming about 20 oz. If she doesn't gain weight or drink the 30 oz. per day within the next couple of weeks, then we will need to make her formula higher in calories. Hopefully that will work or they may need to start a feeding tube! Blah!
Other than her very little weight gain, Lainey checked out well. Her lungs sound clear, she was at 100% oxygen level, and she is developing appropriately. We are so thankful for her good health. Please pray that she gains weight. We are sure she will be her goal weight by our next visit on January 16th.
Please continue to check back for more pictures during the holiday season. Below are pictures from Lainey's visit to the CF Center. Enjoy!
Merry Christmas and Happy New Year!
Love Always,
The Smithsons

Sleepy Bug ~ Her 2 to 3 hour visit at the CF Center always wears her out!

Night Night Buggy!

Lainey and "Yellow" ~ "Yellow" was a Christmas gift from the doctors, nurses, and staff at the CF Center.

Lainey and her new friend, "Yellow."

Now is a great time to donate to the Cystic Fibrosis Foundation! Any amount will help find a cure for Cystic Fibrosis! Thank you. To donate directly in Lainey's honor, please click on the link .

No comments: