Having A Ball!

Friday was Lainey's 11 month clinic visit. She is finally in the GREEN!!! She was 20 pounds and .02 ounces! Her length was 28 1/2 inches, putting her BMI in the 50th percentile. The antibiotics she has been taking seem to be doing the trick. Dr. Caplan said her lungs sound clear! Yea! We will begin introducing Pediasure, again. This time we will put a little at a time into her bottle to gradually wean her from the formula. I will also begin introducing a sippy cup. It is a pet peeve of mine to see kids older than 15 months drinking out of a bottle, therefore I must begin working with Lainey. Dr. Caplan said that Lainey will come back next month for her 1 year checkup, then we can begin scheduling appointments a little further apart! I won't know what do not having to go to the CF Center every month!

As for now, all of Lainey's meds will stay the same. The only change in Lainey's routine is to begin introducing Pediasure.....after she finishes the antibiotics. Dr. Caplan is unsure about introducing whole milk since it only has 20 calories and due to the milk protein allergy Lainey had when she was in the hospital. We are hoping that she continues to gain a lot of weight now that she is eating table foods. Lainey is taking a liking to french fries ~ salty and fattening ~ just what the doctor ordered!

Lainey and Gigi

A not-so-happy Lainey! She was ready for everyone to leave her alone!

Lainey was a happy girl after everyone quit "bothering"her!

On Wednesday, Logan began PeeWee T-Ball! Although it is called PeeWee, Logan was not so "PeeWee" looking compared to the other children! This team is for 4 and 5 year old boys and girls. Logan just turned 5 but looks like an eight year old out on the field! After practice he said, "Mom I love t-ball and I learned a lot!" Unfortunately Liam is too young to play t-ball. He wanted to play with the big kids so bad that he threw a major fit! When all of the t-ball kids were off the field, my dad (aka Papa the Coach) called him out and told him to run around all of the bases! He was faster than any of the other kids! It was awesome because he crashed when we put him to bed!

Logan is wearing Papa's blue hat. They were learning to catch ground balls.

Liam played on the playground while Logan practiced!

Logan telling his new friends that his "name tag says that his name is Logan, but it is really Peter!" He wants his name to be Peter because he wants to be like Peter Pan!

On Saturday morning the Gainesville Parks and Recreation had their annual T-Ball, Softball, Baseball parade! It took longer to get the teams in groups than it did to see the complete parade from start to finish, but Logan had a blast. Liam and Lainey enjoyed watching their big brother walking in the parade!

Dawson and Logan at the parade.

There were 520 kids and 100 volunteer coaches!

Logan dancing to the music the DJ was playing!

Lainey watching all of the kids!

In addition to the fun time we had at the parade, my mom and I headed to a bridal shower and my dad took the boys to the park. Lainey was the hit of the party! Of course she smiled at everyone and chowed down on the homemade french toast!

This next week brings a lot of fun and not-so-fun things! Not-so-fun ~ CRCT testing! My first grade students will have to take a three hour test on Tuesday, Wednesday, and Thursday. BLAH! It is so hard for them to sit still for that long, since we only get one break in the middle of the test each day. Also, progress reports go home on Thursday, so I have a lot of work ahead! Fun ~ Lainey will be 11 months tomorrow. Time is flying by! Liam's birthday is Friday! I can't believe he will be 3! Liam is also going on a field trip to Elachee Nature Center with his day care class. We have been telling him that he will be able to go to camp this summer at Elachee if he goes pee pee and poo poo on the potty! Hopefully this trip will encourage him to use the potty so I can catch a break with buying diapers! This week also brings a wedding. My brother-in-law's brother is getting married. We love Chris and Kelly and are very excited for the two of them! It seems like just yesterday when they got engaged (although it was really July 4th)! The best thing of all ~ Sid's long clinical days are over! From now until he graduates, his clinicals will be 8 hours, so he will be finished with school Monday through Thursday by 3:00 in the afternoon! Now he will be able to go to Logan's t-ball practice and spend more time with the kids and I.

For now, I am off to my busy week! I will post pictures from our many events hopefully by Sunday!

DeAnn

Spring Fun!

It is that time of year again....Spring Break! Only, this kind of weather is not that of Spring! Yes, rain, 60 degree weather, pollen, and a week out of school is an indication that spring is here, but SNOW and freezing temperatures?

Our plan to camp at Stone Mountain park during part of our Spring Break was with hopes of good weather. When we left town on Thursday, we were far from having good weather! With thunderstorms, flooding, and tornado warnings, our vacation had an interesting start. Thanks to my dad, our camper was already set up in our camping spot when my parents, the kids, and I arrived at Stone Mountain around 9:00 Thursday evening. Sid was scheduled to work on Friday, therefore we left him at home!

It was rainy all day on Friday and I was stuck in the camper with 3 kids...one which was feeling less than par. Lainey looked as if she had pink eye and was running a low grade fever which caused her to be very sleepy. After a call to her CF doctor, Dr. Caplan, we had a prescription for eye drops and Bactrim. Sid finally made it to Stone Mountain around 8:45 and boy was I happy to see him!

On Saturday we had beautiful weather. Our friends Cindy and Sean, along with their kids Dawson and Kaylah joined us for a day of fun at Stone Mountain. We had a blast meeting Bob and Larry from the Veggietales, making bugs, riding the train, picnicing, shopping, watching the Back Yard Circus, grilling out, and viewing the Laser Show. The best part was when we tried to fit 11 people into my Ford Expedition EL! It is designed to seat 8 people...we managed to fit 11 and we could have fit more! We had about a 2 mile drive within the park to get from our camp site to the Laser Show lawn, so we were not cramped for long. Yes, we could have driven 2 cars, but it is VERY hard to park...plus my mother has a handicap pass, making parking a breeze! Sid and Sean sat in the front, Papa, Lainey, and Liam sat in the middle, Gigi, Dawson, Cindy, Kaylah, Logan, and I sat in the last row, and we filled the back with a wagon, double stroller, and a gazillion blankets! I think it took us loner to get in and out of the car than it did for the 30 minute Laser Show, but we had a ball!

Sunday was much colder, but the sun was out for most of the day. We took my parents over to Stone Mountain park and did a little shopping and playing. Everyone started breaking down around 1:00 because they were cold and hungry, so we went back to our campers. Shortly after we ate lunch Lainey began acting sick again. She started throwing up and was running a fever. Needless to say, she did not hold down much and was very lethargic. Sid watched Lainey and the boys during their nap time, while mom and I went to Target! We rarely get to go shopping without kids and it was so much fun to get out by ourselves!

Monday Lainey was still feeling crummy, but not throwing up. We had to call Eileen, our Littlest Heroes Project photographer, to cancel our session. I really wanted to have our pictures taken, but I wanted Lainey to feel up to it, plus it was super cold outside. The wind was blowing 45 miles per hour and it was 42 degrees! My sister and her husband had dropped Lilly Anne off at mom and dad's motor home around 9:00 while they went to Brad's pre-op. We all ate dinner together and I got some cute pictures of the girls, Gigi and Papa, and all the grandkids! I also managed to fit in a trip to Hobby Lobby, Marshalls, and T.J. Maxx(of course this was when the kids were taking a nap.)

Brad and Dayna left around 5:00 Tuesday morning for his surgery. Sid left for school shortly afterwards. The kids and I were in for the morning due to extremely cold weather and SNOW! Snow on Spring Break is wrong! I packed up the camper while the kids played, watched movies, and ate, and ate, and ate! Sid finally got back from school around 2:15. He worked on hitching the camper to the Expedition, putting away hoses, and preparing to leave while I took the boys to roast marshmallows and make smores. The boys had a bunch of firey, sticky, chocolaty, sugar high of a time! We hated to leave, but Sid had to be back for his 12 hour clinical on Wednesday and Thursday, and work again on Friday, Saturday, and Sunday. BLAH!

Brad's surgery went well. The doctor pulled 4 teeth and removed a large portion of his lower jaw bone. He was lucky in that the tumor was contained to one area. For two weeks he will be out of work and they will begin looking into options for replacement teeth. Dayna and Brad are very glad to have this tumor removed and the surgery out of the way. He is doing well and hanging out at home while vegging on ice cream and pain meds!

Well, just a few more days left of my Spring Break and then back to the grind! I had so many pictures from our Stone Mountain trip, that I made a slide show. Enjoy the pictures!

Make video montages at www.OneTrueMedia.com

DeAnn

What's Up Doc?

This has been a week of doctor visits for Logan, Lainey, Papa, and Gigi. Some reports were better than others. Some things we heard from the doctors we questioned and are still questioning. Hopefully now we will have a break from going to the doctor....at least for a couple of weeks!

Logan had his 5 year old checkup at the pediatrician's office on Thursday. He was above the 90th percentile for his height and weight! Although he is a big boy, weighing in at 64 pounds, the doctor was not concerned. He is also 45 1/2 inches tall, thus balancing his weight. Keeping him active and teaching him healthy eating habits is our main goal. Logan loves to eat, but he is also all boy ~ meaning he is always on the go! In addition to a full exam, Logan was the lucky recipient of 4 shots in the thigh! Needless to say this meant cornering him, carrying him to the table, and holding him down. He is still complaining about the pain in his legs from the shots! I am sure we will still hear about it for at least two more weeks! Other than yearly flu shots, he is finished with vaccinations until he is ten! Yeah....except I am not sure I will be able to wrestle him when he is ten if it is this difficult when he is five!

Lainey also had her checkup at the pediatrician's office on Thursday, as well as her monthly clinic visit at the Cystic Fibrosis Center on Friday. Dr. Onal, the pediatrician, is extremely thorough and is in complete awe of Lainey and her accomplishments ~ developmentally and with her health. Lainey hated his assessment of her ears, mouth, and stomach. She cried like I have never heard her cry before and continue to whimper even after his exam. Everything with exception of her eyes and a possible ear infection, checked out to be great. Dr. Onal has prescribed eye drops for Lainey's eyes and has referred her to a pediatric opthamologist. He suspects clogged tear ducts, but isn't convinced that what her eyes are producing isn't mucus related to the Cystic Fibrosis. Lainey didn't have to have any shots for her 9 month visit! YEAH!

Our visit to the Cystic Fibrosis Center was the best visit we have ever had. Lainey gained 2 lbs. 5.3 oz since her last visit in January, bringing her up to 18 lbs. 6.8 oz! Woo Hoo! 30 calorie Alimentum with Polycose Powder is our new BEST friend. She also grew another inch and is now measuring 28 1/4 inches long! Although she is still in the YELLOW ~ at risk, monitor carefully range, we are so close to seeing the GREEN! Dr. Caplan and Liz (the dietitian) were completely thrilled with her progress. From his examination, Dr. Caplan didn't think Lainey had an ear infection as suspected by Dr. Onal. He also acted as if it was completely normal that Lainey's eyes were draining and was somewhat confused about her going to the pediatric opthamologist. I am not sure if she should go or not.....Is it a CF thing ~ clumpy, yellowish-green junk in the corners of her eyes, and tears falling from the outside corners of her eyes? Is it necessary for her to go the pediatric opthamologist? Should she try the drops, then decide if the pediatric opthamologist is the next step? Ahhhhh.....Questions, but no answers.......yet! Not one thing about Lainey's medications or diet changed as a result of her visit today! The dietitian said she was fine with Lainey eating more high calorie table foods and drinking less formula. This was great news since Lainey is only consuming about 20 oz of formula from her bottle. We usually sneak formula into other meals through rice cereal, just to pack on the calories! The doctors have a goal of Lainey gaining 1 lb. 5 oz. by her next clinic visit on March 20th, bringing her to 20lbs!!! We are up for the challenge....now we have to get Lainey on board!

To kill several birds with one stone, Gigi and Papa scheduled their appointments for the same time as Lainey's. On Friday morning we left Gainesville at 8:30 am to head to Egleston and Emory. Papa dropped Lainey and I off at the CF Center at 9:50 and they headed over to Emory for their echocardiograms. *** My dad, Papa, had his aorta replaced in February of 2000 due to a tear in the mitral valve causing the blood to go around the aorta rather than through it to the heart. After his surgery, one of his lungs collapsed. Although the surgery and several days afterwards were emotionally and physically draining for all of us, he recovered remarkably well after being release from the hospital. *** The doctors continue to check on my dad's valve and high blood pressure. He went back to work shortly after his heart surgery and worked ridiculous hours. He was stressed out and it the stress showed it's ugly face by causing problems with his new valve. During that time he was diagnosed with stage 1 rectal cancer. He underwent surgery in October 2005 and now has a permanent colostomy. He caught the cancer early enough that he did not need chemotherapy. With the cancer added more stress to his new valve. The doctors now perform yearly echocardiograms to keep a check on the valve.

Lainey's CF clinic was over around 12:00, but Papa and Gigi had finished their echos, and were waiting to see their doctor in the Adult Cardiac Clinic at Emory. Finally my dad decided he had made me wait long enough and he came to pick Lainey and I up at the CF Center at 1:00. I would have walked to Emory, but it was pouring and we were under a flood watch! In the meantime, mom and dad's doctor was busy and she sent mom to the lab for several tests. After parking and traveling to the lab, she was still waiting. After the lab my mom was scheduled for a chest x-ray in the radiology building! Needless to say, this was nowhere close to her clinic. We waited for 30 minutes only to get a call from her doctor saying she was ready to see both her and dad! Without the x-ray we went back to the cardiac clinic! I am not sure exactly how long their appointment took because Lainey and I took a nap in the waiting room! We went back to radiology after mom and dad's clinic, only to wait an hour before my dad went to find out what was taking so long. They didn't have mom's paperwork because they had filed it after she left the first time! Amazingly enough it only took 10 minutes until they called mom back for her x-ray after speaking with my dad! We were finally finished with all of our appointments by 4:30! By the time we sat in rush hour traffic, picked Liam up at Aunt Dayna's house, and picked Logan up at Chick-fil-A where he was hanging out with his friend, it was 6:30 when we got to my parent's house!

Papa got a good report...well, according to what he is telling us! Gigi.....well, hers was not what we would have liked to hear. Her disease is progressing (read more about it here). The doctors are unsure if it is her heart that is causing her problems or if it is the secondary pulmonary hypertension. She is now on Lasix to assist in lowering the amount of fluid in her body. The amount of fluid in her body causes more pressure on her heart, thus making it work harder. If the Lasix works, then mom should feel better (less fatigued and less out of breath) by Monday. This means that her heart is the causing the majority of her problems. In saying this, there isn't much the doctors can do. The harder her heart works, the harder her heart gets, thus not working properly. IF the Lasix don't make her feel better, then it is the secondary pulmonary hypertension that is causing her to feel as she does. The doctors can do a few things for this, such as changing some of her medications and introducing some intense medications like Flolan. There are very few options left for my mom. We know she is a strong woman and will fight until the end. As anyone would, I hate hearing that there are few options left for my mom. She and I are best friends. We call each other at least 5 times a day and unless my parents are out of town, I usually see her everyday. Several years ago I vowed to myself to do for her what ever she needed. I also decided that I would spend as much time with her as possible. She and I have grown so close. We are always finishing each other's sentences, we have the same mannerisms, and we often say the same exact thing at the same exact time.

At times I am glad my husband is in the medical field, but at other times I absolutely hate what he knows. He tries very hard to cover up his feelings and answer my questions honestly. After shedding many tears last night, I have decided to look at some of my vows from several years ago. My vows will continue to stay the same, but I will be adding a few new ones. One vow is to come home on time from work 3 days a week (I often work until 5:00 when I am finished at 3:30). In doing this, mom and I will be able to go shopping. It will also provide her with a break from watching Logan and Lainey for an additional hour and a half. Another vow is to do even more to help her...whether it be to pick up groceries, pick up her medications, take her out to places she needs or wants to go, wash her dogs, vacuum, etc. I want her to be less stressed, less worn out, less out of breath....so she can be here for more years to come. I also vow to not dwell on "what mights" and "what ifs". I will enjoy the time we have together....and try not to focus on what I will do with myself when the time comes.

With all of the news we received at the numerous doctor appointments over the past few days, I can say that we are overall thankful for what God has given us. We still have each other and we are still hanging in there! Thank you for all of your prayers for our family. Please continue to pray for Lainey and my mom, Gigi! We feel all of your prayers daily!

With Love,

DeAnn

Gigi, the Birthday Grandma!

Today, 57 years ago, my mom was born. My mom is truly a miracle. At 1 year old she weighed 10 pounds and couldn't sit up on her own. The doctors were sure that if she lived past her 1st birthday, she would not be able to walk or talk! She was in and out of the hospital her entire first year of life. She had difficulty keeping food down. The doctors told my grandparents that my mom would most likely not make it and they should consider having another child to "soften the blow." My mother came home from the hospital close to the same time her brother was born. She and her brother were over a year apart in age, yet they were the same size. Many people thought they were twins!

Over her childhood, my mother was sick. At one point the doctors told my grandparents that she had Cystic Fibrosis. They began numerous CF treatments, only to discover several years later that she did not have CF.

When my mom was a senior in high school the doctors finally found a hole in one ventricle of her heart. It was determined that her ventricular septal defect (VSD) was unrepairable. Her defect is associated with Eisenmenger's Syndrome. She continued on despite her diagnosis. She graduated from the University of Georgia with a bachelor of science degree in education with a focus on speech pathology. She later went on to get her master's degree in special education.

Due to her health, my mom and dad decided to adopt. After being on the waiting list nearly 7 years, my parents received the call they longed for....a baby was available for adoption. My parents adopted me in July 1980, when I was only 2 months old. Through private adoption, 4 years later, they adopted my sister at a mere 13 days old.

Through the years my mom has been in and out of the hospital numerous times. She has always taken medicine and began using oxygen in 2000. For as long as I can remember, she has had a blueish-purple hue to her face and hands as well as a very distinctive, persistent cough. With the progression of her disease, she has developed secondary pulmonary hypertension. She is also in the early stages of congestive heart failure. Her doctors have had her on breathing treatments, experimental medications, and even Viagra! She was on the list to receive a heart and double lung transplant at Barnes-Jewish Hospital in St. Louis, Missouri, but has since been taken off the list due to her age.

Gigi ~ aka: Diane, Didy, Mom, grandma, wife, daughter, sister (to 4 younger brothers), aunt, teacher, and best friend ~ has WOWed her doctors and has been a true blessing to everyone she meets. She has lived 57 years; some years she has been healthier than others. She taught elementary and middle school for a total of 25 years. She has been a wife to my dad for almost 36 years. She has been an awesome mom for over 28 years. She has been the BEST Gigi for 5 years. She has beat many odds, yet very seldom complains. Every birthday is a huge accomplishment. We are thankful for every moment we get to spend with her.

Lainey is so lucky to have a Gigi that can teach her what it takes to "beat" the odds. To take what the doctors say and prove them wrong! To keep going when the going gets tough. We pray that Lainey will have the same outlook on life as her health is effected by the challenges of Cystic Fibrosis. Lainey has a lot to live up to, but Gigi has been preparing her since birth! Lainey and Gigi are two of a kind....the kind that you could never live without!

Mom, I know pizza and a Dairy Queen ice cream cake may not be the ideal birthday dinner, but we hope you had a great day! Thank you for everything you have taught me. Thank you for all of your love and support. Thank you for your friendship. We hope to have many more birthdays with you. We love you!

With Love,

DeAnn, Sid, Logan, Liam, and Lainey

Liam and Logan helping Gigi blow out her candle!

Happy 57th Birthday, Gigi!

We LOVE you!

Counting Calories and Having Fun!

So......Just how many calories are there in a plastic spoon?

Lainey's new favorite thing ~ eating her spoon when she is tired of drinking formula or eating baby food!

This weekend the boys, Lainey, and I went to the local Home Show with my parents. Our home is fairly new, so I don't really know why I went other than it was an escape from the house! In addition to the escape, it meant that I had two other people helping me with my children for at least a couple of hours. Although one would think the home show would be boring to a 5 year old, almost 3 year old, and a 9 month old, the kids had a blast! They were some of the only, if not the only, kids at the home show. They racked up gathering free "goodies" from each booth! We now have mini flashlights, foam baseballs, potted flowers, notepads, pens, crayons, bandaids, coloring books, candy, and much more! I went to the Home Show several years ago and won a patio table and chairs, so that is always incentive for me. No such luck this year! I didn't win anything, but having a day of entertainment made me feel like a winner! Thanks mom and dad for getting all 4 of us out of the house! We had fun at the Home Show and enjoyed some yummy food at Brad's Grill (compliments of Gigi and Papa)!

The Bug!

Logan and the frog at the Home Show!

Liam did not want his picture taken....but here he is with the frog!

This week brings several appointments. We were suppose to go to the pediatrician's office and the CF Center last week, but our plans changed. The pediatrician was sick on Thursday, therefore Logan's 5 year checkup and Lainey's 9 month check up were cancelled. We are now scheduled to go this Thursday morning. I rescheduled Lainey's CF appointment because the boys were still under the weather from having Strep Throat. We will be going this Friday for her appointment at the CF Center, while Gigi and Papa go for their checkup at the cardiac clinic at Emory. This works out perfect because we can take one vehicle to Atlanta since the CF Center and Emory are next door to each other. I am also happy we are going the same day as my parents because now I do not have to find a babysitter for Lainey! Since my parents take care of Lainey, when they are traveling, at the doctor, or are sick, I must find another place for Lainey...or take a day off of work. I like being home with Lainey, but I am trying to save my days for our Disney Cruise in October and incase Lainey were to get sick. Thanks to Josie's mom, Kay, Lainey usually has a place to stay when Gigi and Papa are not available!

Please pray for good visits at both the pediatrician's office and at Lainey's CF clinic. We are hoping that Lainey has met our goal of 18 lbs! Check back later this week for updates on our visits! :)

BYE!

The Smithsons

Angels Among Us

Our family truly believes their are angels among us, and we have proof!

On Monday, January 19, 2009, the kids and I were out of school for MLK day. Since I was with the kids it meant my parents had the "day off" from babysitting. My dad made an appointment in Gaffney, SC to have some work done on his motor home. Mom and Dad took the motor home to Gaffney, towing their car behind because the work on their motor home would take at least a week. On their way home they decided to eat dinner at the Olive Garden in Greenville, SC.

While waiting on their table, my mom sat down beside a lady with a child in her lap. My mom began talking to the lady about her little girl (mom doesn't meet a stranger). They made small talk with mom mentioning that she had a grandson close in age to the little girl. She also mentioned a little about having grand kids and keeping her granddaughters while Dayna (my sister) and I teach school. Their conversation was cut short due to an available table awaiting.

On January 25, 2009 I received an email from Mrs. Manning, a woman who found my blog while researching the medication her daughter is taking for acid reflux. Mrs. Manning mentioned in her email that her almost 2 year old daughter had several bouts of illness, some that included positive bacterial throat cultures. She said that the doctors suggested having her tested for CF, but when the bacteria went away on its own, they decided not to test her. One of the last things Mrs. Manning asked was about about a picture she saw on my blog. The lady labeled "Gigi" was the lady she thought she saw at the Olive Garden in Greenville, SC.

Before Mrs. Manning's email, I didn't even know my parents stopped at the Olive Garden in Greenville on their way home. I immediately called my mom to inquire about her encounter with Mrs. Manning. She confirmed that she spoke to a nice lady with a very calm (she noticed that because my 2 year old is far from being calm!) little girl sitting in her lap. We could not believe my blog brought her back into our lives for a second time. Was it a coincidence or was God trying to tell us something?

We emailed back and forth several times. Mrs. Manning had several questions about having her daughter tested for CF. Her daughter was ill again and they wanted to find the root of the problem. I encouraged her to go through with testing, if for nothing other than peace of mind. I checked my email every hour to find out the results. When I received the email with her daughter's results, a overwhelming sense of relief came over me. Her daughter's sweat test was negative! She does not have CF. Mrs. Manning's email also mentioned that she had something else to share with me, but she was really busy and would tell me later. The kid in me really likes surprises and suspense, and once again I found myself checking my email every hour.

On Wednesday, February 4th, after a long day at work, then church dinner, parenting class, bathing the kids, and getting them ready for bed, I finally had the opportunity to work on my taxes. I watched my favorite show, LOST, while working on my taxes. After my favorite show was over, I went downstairs to make lunches for the next day, when I spotted the mail. The anticipated wedding invitation to Chris and Kelly's wedding had arrived! There was also an envelope with my name from someone in South Carolina. Without thinking twice about the fact that I don't know anyone right off hand that lives in SC, I quickly opened the envelope (back to the excitement of getting mail!). A letter, a picture, and a check were enclosed in the envelope from SC. This is what the letter said...

DeAnn & Family,

In my last email, I made reference to something else I needed to tell you. I decided to mail this letter explaining an answered prayer that I have recently experienced.

Please accept this gift as the Lord has asked us to give it to you. I understand from your blog that you are a Christian family. Therefore, I am sure that you have the knowledge of the spiritual gifts of giving. We are a Christian family from Laurens, SC. We moved to Chapin, SC in October 2004 and attended Chapin Baptist Church during the four years that we lived there. We moved back to Laurens in June 2008 and have been attending NewSpring Church in Greenville, SC since our last move. Our faith has recently grown stronger. Your mother (Gigi) initially made contact with me in Olive Garden, Greenville, SC (January 19, 2009). I didn't realize it at the time but I have been praying for God to intervene and help us with a financial decision. We sold our house in Chapin in August 2008 and fortunately made a small profit during this time of economic crisis. We have been trying to decide where to contribute a portion of God's gift to us (housing profit). I received a book from NewSpring Church titles 'The Blessed Life' by Robert Morris. In regards to offerings over and above tithing, I learned that we are not to decide where to give but we should pray and ask God where He wants us to give. Prior to meeting your parents in Olive Garden, I just completed reading this book and have been in prayer over the material I have read. On January 25, 2009, I started an internet search on my daughter's reflux medication, Axid, and ended up on your blog. When you initially responded to my email on January 26, 2009 with the confirmation that I had met your mother- I knew that God was at work in this connection.

I called my husband at work on Tuesday (26th) and told him about my answer from God. I cried with joy. My husband, without hesitation, agreed that God is at work and is responding through this connection.

Your family blog and your email's with me have so greatly touched my heart. I really appreciate your communication with me through my daughter's sweat chloride test this past week. I have not ever developed an internet friendship such as this. I plan to pray for little Lainey and your family and keep in touch with her progress. She is such a beautiful baby and she deserves such a great family that you are.

Please accept this gift and Thank You and Your Family for allowing God to work through you in response to my prayers.

With Love, Prayers, and Thanks!

The Manning's

I was in tears reading this letter! Seeing their family picture helped put a face with their names. As if I was not already totally amazed in how God works and his intentions of bringing our families together, but the check that was enclosed with the letter and the picture was written to me in the amount of $1,000.00. I immediately handed the letter over to my husband, who was already thinking I was nuts because I was crying over this letter I received in the mail. Needless to say, he was balling after the second sentence! All he could say was, "Call your mom!"

Before my mother could say hello, I said listen to this letter I got in the mail (she was not shocked to get a call like this from me because I always call her like that when I have something important I need to tell her). She was totally taken aback. We were sure then that there are really angels among us. There is still good in this world. There are still people that truly believe in God's intentions.

Without hesitation, I blurted out my intentions of what the money would be used for ~ CF research! The Manning's gave the money to us, but in the long run what will make us the most happy? ~ A cure for CF. A good bill of health for our precious baby girl. A normal life for her in this not so normal world. A story for her to tell of the people who God led into her family's lives. The Manning's money could be the $1,000.00 that buys the ingredients that are mixed together to find the cure for Cystic Fibrosis. How could I ever keep that money for our usage? Yes, we have expenses we never thought we would have. Yes, we have medical bills that we are paying on. Yes, Lainey's monthly expenses are beyond what we financially are able to provide, but we make it. God has helped us this far and we know He will not let us down. I am sure He also wants us to donate the money to the CF Foundation.

In addition to the money the Manning's sent us, they also donated $200.00 in Lainey's honor to the CF Foundation. Lainey has her own gift registry through the CF Foundation http://www.cff.org/GiftReg/DeAnnSmithson with a current goal of $1000.00 by her first birthday to help fund Cystic Fibrosis research. With the $1,200.00 total donation from the Manning's and a donation from our friends The Childer's, we are well above our goal. We will also be going beyond this goal even farther with the help of our friend's, The Rock's. Their daughter, Campbell, will be turning 1 on March 25, 2009. In lieu of gifts, they are asking for donations to be made to the CF Foundation in Lainey's honor! We will also be doing the same for Lainey's 1st birthday. Our family is in awe over the number of people who are supporting us and the research that will ultimately save the people with Cystic Fibrosis. With this being said, I will be raising our goal this week from $1000.00 to $2,000.00 in donations by Lainey's 1st birthday.

Thank you so much Manning Family! God has shone His abilities through our connection. We are eternally thankful for your thoughtfulness and your donations, but more importantly for your friendship. We love you! :)

The Smithsons
Sid, DeAnn, Logan, Liam, and Lainey

Every Ounce Counts!

It is hard to believe that yesterday it was Lainey's 8 month checkup at the Cystic Fibrosis Center. Sid and I feel like it was just yesterday when we found out Lainey's diagnosis of Cystic Fibrosis. We thank God everyday for all of the knowledge and hope Dr. Caplan has given us. Lainey absolutely loves him and with all of his kisses, she can tell he loves her too! With his age, it is our concern each month that our next visit to the center may not involve Dr. Caplan.

Lainey and Dr. Caplan

On another note, Lainey was up 14 oz. from our last visit in December, weighing in at 16 lbs. 1.5 oz.! It was not what the dietitian had hoped for, but at least she gained weight even with her eating strike! She also grew another inch longer! She is now 27 3/8 inches long. Her weight is in the 25th percentile and her height is in the 50th percentile. Hopefully at our next visit Lainey's weight will catch up with her height!

Lainey and Gigi playing while we waited for Dr. Caplan.

As always, it was great to hear those four little words, "Her lungs sound clear." Dr. Caplan was happy to know we did not have a stool sample for him today....although, we had a bunch after we left the center. Not too much was changed with her medications or her diet. She will continue to take Ultrase Enzymes with each meal. Instead of taking four standard Utrase capsules, Dr. Caplan changed her to a higher dosage of Ultrase, Ultrase MT18. Now she will just need to take one capsule with each meal. She will also continue drinking 30 calorie Alimentum. She must drink 30 oz. per day, then she can have solid foods. She would rather have rice cereal and baby food, but we will listen to the docs!

"What? No solid foods until I drink all of my liquid mashed potatoes??!!"

We are totally thrilled with Lainey's appointment at the CF center. God is truly Good! Thank you to everyone who has prayed and continues to pray for our family. Lainey's diagnosis has been a life altering experience for everyone in our family. Through all of this I have learned that life isn't fair, things don't always turn out the way you planned, things can and will change even if it messes up your schedule, a "To do" list is never completed before another has begun, knowledge is power, laundry is never-ending, kids grow up too fast, and God has a plan for each of us; he knows what he is doing. Thank you for helping us to live God's plan.

With Gratitude,

The Smithsons

PS. Maybe I am crazy, but I am totally concerned about Lainey's teeth! Dr. Caplan warned me that some of her medications could damage her teeth. Yesterday he looked at her tooth, and said it was fine. After our visit, my mom and I took Lainey to Target and that is where it was very noticeable. Under the bright lights, all I could see in my precious baby's mouth was a black tooth! I know it is better to have a black tooth than have lung issues, breathing treatments, and being hospitalized. I think I wasn't prepared for what Dr. Caplan meant by medication "damaging" her teeth. I have begun brushing her teeth and hopefully this will prevent more black teeth. Sorry for being so vain, I just know how rude people can be about appearances, especially with girls. :(

PediaBlah!

A PediaSure - Free Girl!

Needless to say, the PediaSure was not a hit! Lainey absolutely hates PediaSure ~ Strawberry and Vanilla. The first time I introduced the strawberry PediaSure, she drank it all. I was ecstatic, until the next feeding. She refused to open her mouth although I know she had to be starving. As a last resort I tried giving her Alimentum again...and that worked!





This weekend was horrible because I fought with her over every feeding, not to mention that Sid worked 6:30 am to 7:30 pm on both Saturday and Sunday. It also rained and the boys were wild! Lainey was extremely sleepy and somewhat lethargic, therefore I decided to stay put at the house. Can you say cabin fever? By Sunday afternoon I was sure someone in our house would be hurt if we did not have a break from each other! Thank goodness for Papa Dwight...he picked Logan up and took him to work in the motor home and then back to their house. It is amazing how well behaved Liam can be when he doesn't have an audience!





Gigi and Papa came over to eat chicken enchiladas with us on Sunday evening. Gigi worked her magic and was able to get Lainey to eat 4 oz of formula and eat a HUGE bowl of rice cereal! Gigi can always get people to eat...just look at Sid, Logan, Dayna, and I! Thanks to her, the four of us are always trying to watch our weight! Unfortunately, Liam wasn't letting her talk him into eating. He ate four cereal straws, a cup of Gold Fish crackers, and drank 5 cups of chocolate milk for the day. Lainey gladly shared her PediaSure with Liam and he drank about 4 oz. We are planning to continue giving Liam the PediaSure when he refuses to eat, especially since he has lost 5 + pounds since April! We really need to have him retested for CF, I just can't bring myself to torturing him again! I nominate Sid to take Liam for the bloodwork! :)





The CF doctor, Dr. Caplan, called today to check on Lainey. He was sure she would love the PediaSure, but since she didn't he adjusted her diet again. She is now drinking 27 calorie formula. She ate well today at Gigi's house, so hopefully she will continue eating. Her goal weight for our Friday CF visit is 17 lbs., but I know we won't even be close. We will be lucky if she weighs 16 lbs. since she has lost 4 + oz. in the past few days. If it were possible, I would gladly give her some of my hunger and weight!





Today Lainey received her 2nd flu shot. She has now completed her flu vaccination. On Wednesday she will get her Synagis shot. Friday we will go to the CF Center for her monthly checkup. My new insurnace company will not like us after Friday! The suggested pick of insurance was the HRA plan. The first $1750 of medical bills is paid out of our "pot" of money, then we have to pay $1250 until we meet our out of pocket deductible. Since Lainey has Medicaid as secondary insurance, I am assuming/hoping it will pick up the $1250 out of pocket portion. We will have met all of our deductibles and out of pocket expenses by Friday if not before then! The thing I am nervous about is what mom heard on tv today. She heard that some doctors can refuse HRA patients unless it is an emergency because the insurance company will only pay them at a very discounted rate. I am praying this is not the case since we will have met everything with only 16 days into this new insurance policy! Why do they have to make insurance so complicated? AHHHHH!





Hopefully the 27 calorie formula will fatten Lainey enough to at least reach 16 lbs. by Friday and that our new insurance will be the right choice for the kids and I this year. Please pray that all goes well with all the appointments this week. I know I can count my blessings if all I have to worry about with Lainey's CF is poop, eating, gaining weight, and insurance! There is so much we have to be thankful for!





With Lots of Love,


The Smithsons

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 http://www.cff.org/GiftReg/DeAnnSmithson .

CF Kisses

Today was a packed day. Mom, Lainey, and I headed down to Atlanta around 9:00 for several appointments. Mom went to the adult cardiac clinic this morning to meet with her doctors. Everything seems to be the same with her health, just a little adjustments to her medications. She was doing well enough that she is not going back until November. Although the appointment was for Gigi, Lainey took a lot of the doctor's time! Dr. Book was ready to take Lainey home with her! It was really cool that after mentioning a heart murmur Lainey's pediatrician noticed, a pediatric cardiologist came to check her out at Dr. Book's request. All sounds fine, just a murmur she should outgrow. After a trip to the lab with Gigi, we were finished at Emory.

Following a quick lunch, we went to Lainey's appointment at the Cystic Fibrosis Center. Every time I step foot in the door of the center, I get an overwhelming sense of comfort and relief. Every person in the center is so caring and personally invested in your child's health. They are an awesome addition to our family and friends support group! Several members of her care team are no longer at the CF Center due to a few changes with Egleston and Emory. The two hospitals at one time worked hand in hand, but have slowly parted. Now that the hospital has moved some of the patients from the CF Center, which is part of Emory more so than Egleston, many of the team moved as well. With their seniority, leaving Egleston would mean starting over in their career. The new people are just as caring as the ones we have become to know and like so well. Our favorite, Dr. Caplan, will probably die doing what he loves best ~ taking care of his delicate patients. We love him so much, we have decided to adopt Dr. Caplan as another great grandpa for Lainey!

Lainey and Doctor Caplan

Lainey weighed in at 12 lbs. 2.5 oz. This is a little over a pound since our visit one month ago. Although I was hoping for 13 lbs., her CF care team assured me that I should be happy with any weight gain! As she gets older, her growth rate will slow down making her weight gain less each visit. In addition to the weight gain....she grew in length! She is now 24 inches long! I am not sure where she got the traits of being tall and skinny. If she didn't look like me, I'd think she was adopted! Everything with her lungs sounded good and clear. This is awesome since we are quickly approaching the season of germs! The dietitian and Dr. Caplan want us to continue using the pancreatic enzymes, Ultrase. Lainey is now on a program offered by the drug company that supplies her vitamins and enzymes at no charge until she is 2 years old. We are so very blessed to have the opportunity to participate in these programs. We are also going to begin introducing rice cereal. It is our hope that the rice cereal will encourage and produce significant weight gain. Overall, nothing has changed with Lainey and the effects of Cystic Fibrosis on her health and body. Dr. Caplan was completely in awe of Lainey's growth and early reached milestones. Lainey spent most of her visit cooing and "talking" to Dr. Caplan as he snuck in a few kisses here and there! Seeing his amazement of her, takes a major weight off my shoulders. It allows me to stop worrying for a moment, something my body and mind greatly appreciates.

We received frustrating news on Monday from the kids' pediatrician. Supposedly the tubes used to collect Logan and Liam's blood sample for the CF test were not the correct tubes. The cap on the tubes were a different color yellow than what they typically use when testing for genetic diseases. All in all, the blood samples are no good. They must be drawn again! I am refusing to go through that torture again...It is Sid's turn! Most of all, I hate it for the boys. They should not have to go through the pain again because somebody used the wrong colored tube lid when collecting their blood! For those of you that know what I am like when I am mad, be assured the pediatrician will know as well! I am waiting for a phone call back from him! When we have more news on the boys' tests, I'll let you know.

Reminder ~ Lainey will be baptised at 10:55 on Sunday at Gainesville First United Methodist Church! Please join us if you would like. Thank you for all of your support! Prayers are always needed and greatly appreciated! Please continue to pray for good health, weight gain, working enzymes, and correctly gathered blood samples!

Much Love from our family to yours,

The Smithsons