We had another series of doctor's appointments a couple of weeks ago and things seem to be going well for the most part. Lilly first saw her pediatrician, Dr. Taylor, on Friday, April 9th. Dr. Taylor was pleased with her progress, but unfortunately she still isn't gaining much weight. Lilly was a little over 10 pounds (maybe 10 pounds 3 ounces the day of the visit I think), which is a major concern to me. While she continues to move up the scale on the growth chart (finally meeting the 3rd percentile in weight and reaching the 10th percentile in height) she still isn't growing at quite the rate that she should. Now when you consider her height in relation to her weight, she is actually the 25th percentile, which makes me a feel a little better, but I am still anxious about her putting on some pounds.
Beyond her weight, Dr. Taylor was pleased with her progress though. She is babbling up a storm, reaching at and batting objects with her hands, smiling, laughing, and watching everything that we do. She is even trying to roll over, although we haven't reached that milestone yet. Developmentally, she is doing well, which is a huge relief.
A few days after seeing Dr. Taylor, we also met with Dr. Kanga on Wednesday, April 14th. Thankfully, Dr. Kanga didn't seem as concerned about her weight. He said he would have liked to see her put on a few more pounds, but was not overly concerned, which was a relief. In fact, he seemed a little surprised about her height - she had gained a full 2 inches. Dr. Kanga said that it seems most of her calories are going towards her height rather than her weight. I assured him that while she may seem a little tall now, she won't be for long based on her genetic pool!
After discussing Lilly's weight gain issues with Dr. Kanga, he said that he believes her primary problem is her reflux. He thinks if we get her reflux under control, then we will have a better handle on her weight. So Dr. Kanga changed her medication from Zantac to Prevacid in hopes that it will help. It better - our co-pay for Prevacid is $45 as compared to the $10 for the Zantac - yikes! In addition to her reflux, Dr. Kanga suggested that we begin Lilly on rice cereal in hopes that would help with the reflux as well. Finally, we decided to increase her enzymes to 3 enzymes a feeding based on her continual problems with oily stools.
The new dosage of enzymes makes things tricky - we have to feed her a dose of enzymes prior to her bottle, a dose in the middle of the bottle, and a dose at the end of the bottle, and then finish with a serving of rice cereal. To say that feedings take a while is an understatement. Lilly is a trooper though - she barely fusses when I remove the bottle to give her another dose of her enzymes anymore and she LOVES the rice cereal (especially when I mix it with applesauce). The additional enzymes have made a big difference, so I hope to see some weight gain soon. The Prevacid hasn't made as much a difference as I would have thought, but Dr. Kanga told us to give it some time as her reflux causes esophagitis and the Prevacid will need 4-6 weeks to fully work out those issues.
Finally, I was mistaken in thinking that we would have chest x-rays and lab work at this visit. Dr. Kanga actually only took a throat culture, which turned out to be clear - a HUGE relief. He still thinks her breathing looks good. It is good to hear - this part gives me a fair amount of anxiety to say the least.
As for the coping part, we are still getting along okay. I discovered in working with the CFF that there is a group of mothers, primarily out of Louisville, that call themselves the Steel Magnolias. The Steel Magnolias is a support group and the women who make up this group have been incredibly helpful to me in answering my questions and validating some of my feelings as I go through this process. I can definitely say it is a process, one that I still struggle with daily. But I am finding that some days are easier than others and they have been so wonderful in helping me cope.
In addition, one of the mothers suggested a book to read about the disease. It is hard to believe that a book can be so helpful, but this one that she suggested has done wonders in explaining to me all that I need to know about the disease, the treatments, the prognosis, and the emotional and financial issues that we currently face and will face in the future. I was so thankful to find something that explains everything in a straightforward, but positive fashion - there is so much out there that is so negative and scary. What is even more frightening is the difficulty I had in finding a book that even discussed CF - I couldn't find anything at Joseph Beth or Barnes and Noble and really despaired about it. If anyone is interested, the book is called Cystic Fibrosis: A Guide for Patients and Families by Dr. David Orenstein and is available at
http://www.amazon.com/Cystic-Fibrosis-Guide-Patient-Family/dp/0781741521/ref=sr_1_2?ie=UTF8&s=books&qid=1272333290&sr=1-2.
I found this to be a wonderful resource.
Finally, we are still doing fabulous in our fundraising efforts for the walk. It is coming soon - May 15th is just around the corner. I sent out emails today about the brunch I am hosting afterwards, so if you plan on walking, please plan on attending the brunch! If you are interested in seeing our progress, want to donate, or want to sign up for the walk, please go to
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6803&idUser=357071
to sign up or make a donation. We hope to see you there!
Rice cereal - yum!
