Sunday, March 22, 2009

Still seeing YELLOW!

On Friday, Lainey and I headed to Atlanta for her monthly CF appointment. We dropped Logan off at school, Liam off at the daycare, and off we went! I was sure it would be awful trying to get through rush hour traffic in Atlanta, but we made it in less than an hour! I think it was a record breaking drive....first of all I drove all of the way through Atlanta traffic by myself!! I hate driving in Atlanta and even more so in Atlanta traffic at rush hour! Secondly, I made record breaking time driving through rush hour at 7:45! Lastly, Lainey did not make a sound all of the way there! The music was turned up, I was eating breakfast and driving, while Lainey was napping. A perfect drive.....my knuckles were not even white when we got to the Target parking lot! Yes Target......Lainey's appointment was scheduled for 10:00 and we were only 3 miles from the CF Center at 8:15! Lainey and I did some shopping in Target before going to her appointment. I love Target's Clearance way too much!

Well, yellow seems to be Lainey's Zone. The yellow zone means she is at risk and her weight needs to be monitored closely. She only gained 6 ounces and did not get any taller. She now weighs 18 lbs. 12.1 oz and is still 28 1/4 inches long. All she needed to gain was 1 pound and she would have been in green....barely, but she would have been there! Lainey's goal weight for next month's appointment is 19 lbs. 4 oz and to keep a pace of gaining one and a half pounds per month. Lainey's lungs sounded awesome! Although she was screaming like no body's business while the doctor was checking her ears, nose, eyes, and throat, he assured me that her crying was also part of his assessment. He said that if someone with CF can cry as hard as she was without coughing, then they have very little mucous in their lungs! Wow, that is a great feeling!


Lainey preparing herself for her future profession!
Although everything checked out fine at this appointment, Dr. Caplan expressed his concern for the amount of fat in Lainey's last stool sample. He has now upped her pancreatic enzymes from 1 Ultrase MT18, to 1 Ultrase MT18 and 1 Ultrase (plain). As soon as it arrives in the mail, Lainey will also be adding ScandiCal to her diet. ScandiCal is a tasteless powder to sprinkle over food to add calories. Hopefully these changes will help Lainey to gain weight.


Yes.....Lainey is chewing on a stool sample container! No....there is no stool in it! No matter how many toys I pulled out of her bag, this is the one thing she threw a fit to have!

I often feel like I answer the question, "How is Lainey doing?" with the same answer. "She is doing well. We are always trying to get her weight up and keep her from getting sick." I usually get the response, "Well, she looks great! She weighs more than my kids did...she looks big to me...." Unless you have a child with CF, it IS hard to see why we are working so very hard to get Lainey to the 50th percentile. The bigger the better, for a child with CF. Our doctor tells us that he would like Lainey to be a little on the chunky side. The bigger she is, the more room her lungs have to grow. Being bigger also makes her heart and lungs work harder, thus making them stronger. The first three years of her life will give us an idea of how CF will effect her health in the future. Yes she does look big...her height is in the 85th percentile, her head is in the 95th percentile, and her belly is usually distended.....with that, it is easy to look past her skinny arms, legs, and booty! Yes she does look good and if I saw her with other children, I would think she was just as healthy as the kid next to her. If only more people were aware of Cystic Fibrosis!


Just look at those lashes!



With this frustration came a call from the Cystic Fibrosis Foundation. I spoke with Sara whom is in charge of the Great Strides Walk in Atlanta and Athens. With her help I will begin a team for the October 17th walk in Athens, Georgia. Living in Gainesville all of my life and knowing a ton of people between my parents, my sister, my husband, and I, I am hoping for a huge response. Thankfully we have many connections in Gainesville, one being that of a friend, Joel, who works for a local talk radio station. With his gracious offer to help in any way, I am sure we will be able to reach even more people. My only concern is, How will I have time to raise money and start a team with everything I have going on? Well, I manage to make things happen that I never imagined I could do so I am planning on adding this to my list! If you have any ideas, suggestions, etc. on how to organize and raise money for such a worthy cause, please share your wisdom!

The doctor is much more interesting than mommy!

Finally Gigi and Papa are home! Last week was "awful" for Logan since they were not in town! Because of their "mini vacation", we needed to find someone to take care of Lainey while I worked and Sid finished this quarter's finals. A HUGE thanks goes out to Mrs. Martha for taking care of our Lainey Bug! Mrs. Martha is only the second "non-family" member to watch Lainey for us. We are quite particular is who watches her for fear the person will not understand the importance of her health requirements. We invest a lot in her health and we hope any caregiver of hers will do the same, although we know that is hard to find. Mrs. Martha was awesome and Lainey was comfortable with her new arrangements in no time! Mrs. Martha.....ANYTHING you need monogrammed, it is yours.....just let me know and it is done!!! Thank you so much for caring for Lainey this past week.


"Thank you Mrs. Martha!"

Tomorrow Lainey will be going to an appointment with an occupational therapist. This will be her first therapy since she was in the hospital at birth and it is offered by our local agency, "Babies Can't Wait". I am very interested to see what they will be working on with Lainey. I will update later on her therapy. Until then, I have posted a "big girl" picture of Lainey below!
Lainey's 10 month picture! This is the outfit she got from The Children's Place for having a good doctor's appointment!
Thank you for all of the prayers this past week! My parents are back safely from their trip, Sid finished his 3rd quarter of nursing school with awesome grades, we had a good doctor's appointment, and I drove in Atlanta!!! We feel all of the prayers daily and are forever grateful for our family and friends! Have a great week!
DeAnn

5 comments:

Phoenix's Mom said...

She is way to beautiful! Glad to hear the drive went well! That is how I first was driving in KC by myself!
Have a great week!
Angela

Rodger Bailey said...

Atlanta is my old stomping ground. I left there to join the Navy in '62. It is nice to connect with your well-crafted blog from Gainsville. I remember it as the sleepy little town out by the lake.

I have created a Social Networking Site about Non Organic Failure To Thrive Syndrome in which I have posted some articles in the blog about issues related to Lainey's situation. I have put a link to your blog in my site for other members to follow. Please come by and explore our site.

Rodger Bailey, MS

Somer Love said...

Seriously... Those lashes, those big beautiful eyes.. She is Adorable!!!

I am glad the apt went well! Can she drink Ensures? that did the trick for me.

Julie said...

Lainey is beautiful as always! I'm glad clinic went well.

I know just what you mean about the weight. People always think Seamus is so big even though he's only around 50th percentile. Little do they know, it's only because he has a feeding tube pumping food into him every night.

Alicia said...

Your situation sounds so similar to ours. Mostly healthy lung wise, but really battling to put weight on (thankfully no need for a feeding tube, though). I love that picture of Lainey with the stethoscope, and wow those eyelashes!