Saturday, February 28, 2009

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

Thursday, February 26, 2009

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!

Wednesday, February 25, 2009

Got Lucky?

Ding Dong! A package for Lainey Smithson!

A package for Lainey? Is it Ultrase? Vitamax Vitamins?

Nope. None of the above.

Well.....(ripping open the box).........

It's LUCKY!!!

Today Lainey received her "Lucky" Bear in the mail. He is so cute! Included with "Lucky" was a yellow star and a green heart, as well as stuffing. Lainey, Logan, Liam, Sid, and I each kissed the heart and placed it inside "Lucky" the bear. Next, we wished upon our star. We wished for a cure to be found for Cystic Fibrosis....sooner rather than later....and then placed the star inside "Lucky". We completed "Lucky's" look by stuffing him with Love! He and Lainey are inseparable.
Our family purchased one "Lucky" Bear to live at our house with us, and one to send to a CF child at Children's Mercy Hospital in Kansas City. A portion of the proceeds will be given to Phoenix's family to assist in covering medical bills and other expenses. Check out Phoenix's Blog to see what an amazing little fighter he is! Look below to see how cute and cuddly Lainey finds her "Lucky" Bear!



Thanks,

DeAnn

Monday, February 23, 2009

Lainey's List

Lainey's List

Life with CF.........

1. Lainey was my third pregnancy in 4 years! I had ALL day sickness for about 4 months and that is when Zofran became my best friend! I gained a lot more weight with her than I did with my other two pregnancies. I had placenta previa and a large bulging blood vessel in my right leg which could be quite painful at times. Other than feeling exhausted (who wouldn't be with a 3 year old boy, 1 year old boy, teaching 21 first graders, and being pregnant), I had an easy 2nd half of my pregnancy. I opted out of all blood tests since my two boys are healthy, plus nothing would have changed my mind about keeping my baby girl! My awesome OBGYN let me see her sweet face on the 3 - D ultrasound machine at each appointment!
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2. Lainey Noelle Smithson was born Tuesday, May 20, 2008 via a scheduled c-section. She weighed 7 lbs. 3 oz. and was 19 1/2 inches long. She was absolutely perfect!
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3. Lainey was great at nursing. She ate and slept....we were loving the nurses waiting on us! The doctors mentioned being concerned that she had not had her first bowel movement...I was excited because I remembered how much I hate the first ones with my two sons! The nurses tried forcing her to drink formula and performed rectal stimulation trying to get her to pass her first stools. She did not seem to be in pain and was not bothered by the attempts from the nurses.
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4. When Lainey was 2 days old, the doctor ordered an x-ray of her bowels. At this point I was still unconcerned because I always had issues using the restroom as a child. She was still acting okay until late afternoon. She began spitting up yellow stomach bile (the nurse told me it was just spit up) and her stomach was distended. It was apparent that she was beginning to feel uncomfortable. The doctor believed that Lainey had a bowel obstruction, possibly atresias (we never saw the blockage in the 3 - D ultrasounds, although her stomach was noticeably larger toward the end of my pregnancy...but my boy's stomachs were large also). They whisked her away to the NICU. She stayed in the NICU in Gainesville for 2 days until the Angel II ambulance transported her to Egleston Children's Hospital.
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5. Lainey had surgery on Sunday, May 25, 2008 on what we believed to be a bowel obstruction, possible Hirschprung's, with the chance of atresias. Although we were nervous, we were sure they would be able to fix her and we would be leaving several days later. The surgery took longer than we anticipated. The doctor informed us that Lainey had meconium ileus and it look like a classic case found in children with Cystic Fibrosis. We were devastated. They had not said anything about Cystic Fibrosis. The meconium was so thick that the doctors were unable to push any through the intestines. They placed a t-tube in her bowels rather than an illestomy, in hopes that it would be enough to drain the meconium.
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6. Lainey was a trooper through her surgery. The evening after her surgery she needed a blood transfusion, but was doing well otherwise. She finally passed her first stool at 9 days old, although it was less than 1/4 tsp! On June 5th (Lainey was 16 days old) I spent the night with her at the hospital. The next morning the doctor came in the room to inform me of her having Cystic Fibrosis; Delta F508 and R560T mutations. I will never forget the feeling of finding out such devastating news after getting such little sleep and not having any family with me at the time.
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7. Lainey was introduced to her enzymes and applesauce for the first time when she was 20 days old. Although having difficulty gaining weight kept her in the hospital longer than we wanted, she was released on June 18th after being in the hospital for 29 days.
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8. Lainey takes one Ultrase MT18 (equivalent to 4 Ultrase) with each meal or snack. She takes 1 ml of Vitamax Vitamins per day, 2 ~ .3 ml of Fer-In-Sol (iron) per day, and 2 ~ Prevacid 15 mg capsules per day for acid reflux. She is also on a 30 calorie Alimentum and Polycose diet (regular formula or breast milk is 20 calories) with 1/4 tsp of salt in each bottle. She drinks approximately 20 oz. of formula per day and eats a bowl of 30 calorie rice cereal with 2 jars of food. We add 1 TBS of vegetable oil per jar of baby food.
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9. Lainey gets 2 ~ 30 minute CPT (chest physiotherapy) sessions per day....and she loves it! :)
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10. Lainey has taken Bactrim 2 times for a green runny nose, but that is the only antibiotic she has taken outside of her hospital stay. She currently receives Synagis shots once a month to help prevent RSV. These shots are given by a home health care nurse who comes to our house...or Gigi's depending on where Lainey is hanging out!
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11. Lainey goes to the Cystic Fibrosis Center at Egleston Children's Hospital in Atlanta once a month and goes for regular checkups at her pediatrician's office here in Gainesville.
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12. Lainey is babbling up a storm, sitting up, scooting, and into EVERYTHING in her reach! She is always smiling, laughing, and overall a very happy 9 month old baby. She has taught a lot of people in our small town A LOT about Cystic Fibrosis and will hopefully continue to spread awareness through her story.
Thanks for keeping up with our sweet Lainey Bug's story!

Here are some pictures of our Lainey Bug from our trip to Target and playing at home!

Our Flower Bug

Bunny Bug!

Happy Bug!



Smiley Bug!

Silly Bug!

Babbling Bug!

Have a good week!

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

Sunday, February 22, 2009

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

Wednesday, February 18, 2009

Birthodaycoccal Partyngitis

On Monday Logan had his 5th birthday party at Monkey Joe's. Along with the goodie bags, he and his little brother, Liam, passed out Streptococcal pharyngitis germs....aka ~ Strep Throat! Yep, that is right...Logan and Liam both had strep throat at the birthday party...and I didn't even know! Liam ran a low grade fever off and on last week, but never confirmed that anything hurt. Logan began complaining of a headache and his throat hurting on Friday, but he continued to eat. The last time he had strep, he wouldn't eat....so I thought it might be a cold or sinus drainage! WRONG! When my mom looked down his throat while the other kids were jumping on the inflatable toys at Monkey Joe's, she called it....and we called the doctor.
There were no openings at the pediatrician's office, so I took the boys yesterday. A little miffed with me for not bringing the boys to them in earlier, the doctor confirmed positive strep tests for both of them. Although Liam seems to be responding well to the antibiotics, Logan is still lagging behind. Logan has had a fever averaging 101 and he has been throwing up! He also is not wanting to eat....and if Logan doesn't want to eat, there is obviously something wrong! I think Liam was close to being over his strep throat since he was running a low grade fever most of last week. He has acted fine, but isn't eating much....like usual! The best thing the doctor said was that Lainey should be okay....babies do not usually get strep throat! I have never heard that, but I'll take it and hope she stays well!
Although Logan was not feeling well, I was determined to make sure he still had a good time at his party. Monkey Joe's is fun....but not so much when you aren't feeling well! Logan's favorite part of the party was opening gifts....who's isn't?! He got so many cool gifts! Transformers, Power Rangers, Legos, and Hot Wheels are just a few of the things his friends gave him. Thank you to everyone that came to celebrate Logan's 5th birthday. We hope you had a good time and we really hope Logan and Liam did not give your child strep throat!
Here are some pictures of Logan's BIG day at Monkey Joe's!
Lainey hanging out at Monkey Joe's.
Monkey Liam!

The Birthday Boy!

Hanging out with Strep Throat!


The Transformer Birthday Cake.



Logan and his friend Monkey Joe!

A cool UGA cork board from Reagan!

Thank you for the awesome gift Andrew....BAKUGAN is all Logan talks about after hanging out with you at school!

Thank you for the Power Ranger Grandma Carolyn and Papa David! Wish you could have been at the party!

For what is left of this week, I am hoping that Logan will get to go back to school. Liam went today but Logan stayed at Gigi and Papa's house. The boys are no longer contagious, but Logan still needs a little rest. Today I haven't felt very well, so I hope I have not caught any of the bugs that have been in our house.

Lainey is suppose to go to the CF Center on Friday for her monthly check up. Since the boys have been sick and may not be going to school, I might have to reschedule her appointment. My parents both have to go to Emory for a check up with the cardiologist on Friday, February 27th, so I may reschedule her appointment for then since the CF Center and Emory are so close to each other.

Please pray for a speedy recovery for the boys. Prayer is also needed for Sid, Lainey, and I....we really need to stay well! Thanks again for all of the birthday wishes and gifts!

DeAnn

Saturday, February 14, 2009

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

Friday, February 13, 2009

The BIG Man is 5!!

5 years ago today, my sweet Logan James was born! 14 hours of labor, 10 minutes of pushing, and 1 wonderful epidural later, at 3:58 pm my 8 lb. 13 oz, 21 inch baby boy was born! Having only 2 veins versus 3 veins in his umbilical cord and having it wrapped around his neck 3 times, I was unable to hold him until after 9:00 that evening. I was a mom, which soon proved to be more stressful and painful than I ever imagined! Logan never got enough food through nursing and often spit up most of his food. After adding Zantac, Soy formula, and rice cereal to his diet, plus making it through three months of Colic, he was a wonderful baby! As for me....When Logan was 1 week old I was in the ER! I began hemorrhaging and running a fever of 103.9. After 4 days in the hospital, a fever averaging 103 degrees, 5 antibiotics, a cooling bed, no eating, 24 hour supervision, ultrasounds, and sleepless nights, I was eventually released. It was later determined that some of the placenta was still attached to my uterine wall, thus causing an infection! And of course the same excuse was repeated throughout my stay in the hospital and even in the weeks afterward..."It is because you are a red head!" Supposedly red heads are at greater risk of infection, low blood pressure, bleeding, passing out, and many more issues!

Logan shares his birthday with Abe Lincoln, or as he says it "Haberham Lincoln." He requested a party at school consisting of cupcakes (because "cake is not allowed" ~ per Logan), Capri Sun, and goodie bags! I was able to take about 45 minutes off of work to celebrate his birthday with his pre-k friends! Logan thought everything was the coolest and required me taking a picture!

The Birthday Boy!


Logan and his pre-k friends!



Later in the evening we celebrated Logan's birthday by eating pizza and cupcakes! We invited several family members, but some were unable to make it to the party. Gigi and Papa let us celebrate at their house with Papa Dan and Rachel and of course Sid, Liam, Lainey, and I. Logan got so many presents he wasn't sure what to play with first! Grandma Barbara and Great Grandma Smithson were unable to make it to the family party, but they sent a lot of gifts. He is having a blast with all of his cool new toys...that he really didn't need because we already have a ton of toys at our house! Thank you to everyone for the awesome gifts. His birthday wish ~ "Mom won't yell at me when I do things I am not suppose to do!" AHHH...way to make me feel like a loser! Thanks Logan James!





Logan showing off his new Power Rangers!

Papa Dan. Logan, and the Red Ranger helmet.


Logan making his birthday wish.


Papa Dan and Lainey Bug


Liam eating a cupcake...yum!

Today I also had a follow up doctor appointment with the endocrinologist. Blah! For some reason my prolactin levels are still elevated (prolactin causes you to lactate, when you are nursing and sometimes when you are not nursing). They were actually higher than they were in September and November when they were last tested! I will continue taking the Cabergoline to help with this issue. My iron was still low even though I am taking a daily iron pill. My estrogen was still low, but not as low as before (was 7, now 22, should be around 500). Hopefully my prolactin levels will decrease and as a result the estrogen increase. If that does not happen, it will be determined that my pituitary gland is no longer working and I will be put on estrogen. My vitamin D also continues to be low...lower than it was in September...and with me taking 5,000 units per day and an addition 50,000 units per week to total 85,000 units per week! The recommended level of vitamin D is at least 32...mine is 19. I guess I will have to lay outside in the nude....just kidding....I don't want my neighbors to move or die for that matter! :)

I have also gained a bad amount of weight...Not cool since I have been trying to lose weight! Hopefully since the doctor has taken me off of one of the two birth controls I have been taking to raise my estrogen, I might lose some weight!

I also went to the Health Department today for Lainey's WIC checks. I did not have to wait very long before they called my number! Hallelujah! Of course I had several little people come up and give me hugs because they know me from school. I was just thankful that it was fairly calm around the Health Department. I also saw my friend Cindy's husband. On his off days he is the police officer on duty for the Health Department. Talking to him made the time go by so much faster! Thanks Sean for making the time fly by and more bearable!
The nurse at the Health Department said that although Dr. Caplan wrote a prescription for Alimentum and Polycose, I would get more from receiving checks for Alimentum without Polycose. The nurse wants me to try to get Medicaid to pay for the Polycose and more cans of Alimentum per month. She had tons of questions about Lainey and her nutritional needs. It always amazes me to talk to people in the medical field who are completely out of the loop when it comes to CF. I allowed her to give me nutritional advice, but also told her that I would only follow what Lainey's dietitian at the CF Center says because she works with CF on a daily basis. The next time I go back for WIC checks, Lainey will be 1! Yea, no Health Department for 3 months!!

Look for more birthday pictures next week! On Monday, Logan is having his birthday party at Monkey Joe's!

DeAnn

Sunday, February 8, 2009

A Buggy Kind of Day

Lainey and I enjoyed playing today while the boys were taking a nap! We needed some girl time since I went to the CF Family Day at Emory in Atlanta Friday night and got home Saturday evening. Sid had to work all weekend and the CF Family Day began at 8:00 am on Saturday, therefore I had to find places for the kids to hang out! Lainey went with Gigi and Papa to Warner Robins, Georgia on Friday and came back Saturday night. Lainey got to go see her Great Grandpa Bob, Great Grandma Lil, Great Pop, and Great Grandma Dorothy while she was visiting in Warner Robins. Liam and Logan went to hang at their Papa Dan's house Friday night until I picked them up on Saturday evening. Liam and Logan got to visit with their Great Grandma Barbara. Although I was told that each kid was very well behaved, each grandparent looked worn out!





Friday night, Jenn and I went to Atlanta to eat (without kids and husbands) and spent the night at Grandmomma's house (Jenn's Grandmother-in-law). Grandmomma lives on the same road as the Cystic Fibrosis Center at Egleston! We had a great time eating at Chili's without someone throwing a fit, someone needing more juice, someone tying to get out of the highchair, and someone having to go to the bathroom! It was nice to have an adult conversation and actually enjoy a meal! Staying at Grandmomma's was also great because we left her house at 7:50 am for the CF Family Day, which began at 8:00 am! This was way better than driving an hour from Gainesville and hoping we got their on time. Thank you for letting us stay at you house Grandmomma!

When we finally found our way to the CF Family Day activities, there was a wonderful spread of breakfast foods. While we ate we walked around to all of the CF related vendors. There were so many vendors with things I had never seen before. Jenn and I had a great time walking around to each vendor. We learned and saw a lot of cool things...we also picked up a lot of FREE goodies! If anyone uses Ultrase, the rep informed me that there will be some new and exciting things the company will be starting soon...but she couldn't tell me about it yet! She said the people using Ultrase, Scandi Shakes, etc. will receive something in the mail around February 16th! I can't wait to find out what is new!

The CF Family Day also included several speakers sharing information about current CF research, nutrition, phase 3 drugs, and the importance of airway clearance. I learned soooo much! To answer Reilly's mom, Cindy's question she once asked, Do CF carriers have symptoms?, YES! The doctors said that many carriers of CF may also have sinus issues, asthma, frequent upper respiratory infections, digestive issues, anemia, vitamin D deficiencies, and more!! Hearing this bit of information gave me some understanding behind many of my personal health issues. I am constantly battling a sinus infection, I have had sinus surgery, each winter/spring I get chronic bronchitis, I have always had digestive issues, I am anemic and vitamin D deficient! Wow....one could think I had a mild case of CF...but my blood work says I am just a carrier of Delta F508!

I learned that 90% of people with CF or people who are carriers of CF, have the gene mutation DF508. Researchers are working on ways to correct the DF508 mutation. It is believed that if at least one of the mutations causing CF can be corrected, then it would be as if the person who once had CF was now just a carrier! Since carriers are typically healthy people, the hope is that would also be the case for those with the repaired mutation. The data and research findings were incredible. A CURE is within reaching distance....I am sure! It was noted that they are having difficulty funding the much needed research due to the economy, so it is up to the people who are affected by CF to spread awareness. It is vital to Lainey's life as well as others affected by CF for the CF Foundation to continue receiving funding for their research. Please donate if you can...you will be saving lives sooner rather than later! Here is the link to Lainey's donation page ~ http://www.cff.org/GiftReg/DeAnnSmithson

There was so much more I learned, but I could never post all of it...not because I can't remember or don't have the energy to talk about it...but because I don't have the time to type it all! Talking is my favorite thing to do....as if most people didn't already know that....so ask me some questions the next time you see me!

Please continue to pray for our family! I think we are all over the stomach virus, but we all still have stuffy and runny noses! We are hoping that Lainey's runny nose goes away or at least continues to stay clear! This week brings many things...inquiring about putting our house on the market, Logan's 5th birthday, doctor appointments, a WIC appointment, Valentine parties, Synagis shots, and I am sure there will be more! Good health and sanity continues to be in my hourly prayers!

Have a blessed week,
DeAnn

PS ~ Lainey is sitting up on her own now!! YEA Lainey! She loves seeing everything from her new view!

Monday, February 2, 2009

Visiting with Grandma Smithson

Grandma Smithson came to visit all the way from Texas! This was her first time seeing Logan since he was 9 months old (Nov. 2004) and the first time ever meeting Liam and Lainey! We had a great time hanging out with her during the Superbowl. It is hard to believe she is 85...she looks wonderful. She plans to stay in Georgia for the month of February. We hope to visit with her many more times while she is here for the month.
Lainey and Grandma Smithson
Logan was excited to see his daddy's Gigi! Logan and Grandma Smithson were best buddies from the minute she walked in the door! Liam was not as sure about her. It usually takes him a while to warm up to people, but when he saw his brother getting some attention, he was all about loving on Grandma! Lainey didn't know what to think about Grandma...Grandma thinks it was her dark hair! After a while Lainey decided to hang out in the same room with Grandma and she even let Grandma hold her. I think it is awesome that my children have so many Great Grandparents who are living (10 total if you count Sid's step-grandparents and my birth grandmothers)! Longevity must be in the family....YEA!
We wish Grandma Smithson lived closer to us, but we also know Texas would miss her! Thank you to Aunt Lisa and Papa Noel for letting her come to Georgia to visit. We know you miss her when she is away. We are taking good care of her while she is here! Hopefully Grandma won't get too homesick! :)
DeAnn