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. :(

May the Weight Gain BEGIN!?

YEAH! Lainey is eating again! We think she has been protesting food because of her new teeth. On Tuesday her appetite picked up and she has been eating ever since. She is drinking roughly 25 oz. of formula, eating a bowl of rice cereal, and 2 - 3 jars of baby food per day! I knew with a few days of hanging out with my mom, she would be eating again! Unfortunately, with all of this eating, she has also had a lot of pooping! Today I bought a box of 600 wipes and the cashier said, "Wow! That is a lot of wipes!" I informed him that my child will go through that box in less than two weeks. I wish I had taken a picture of the look on his face! :)

Lainey's dietitian called yesterday and wants us to try her on 30 calorie Alimentum. Hopefully this will help her gain weight. Making 30 calorie formula is n0t as simple as 24 calorie where you just add more formula. When making 30 formula you add extra formula and a special powder called Polycose. Of course our local pharmacy did not have any Polycose, so we had to wait until the order came in today. Tonight we will begin making 30 calorie bottles and trying them out tomorrow.

Tomorrow we will go to the Cystic Fibrosis Center for Lainey's monthly checkup. I know she will not be at 17 lbs. like the dietitian had wanted, but we have tried very hard. Our baby scale here at home says she weighs 16 lbs. 4 1/2 oz. We think she looks great, but we know the doctors know BEST. I will update everyone on our news from Lainey's checkup. Please pray for a good visit. She has been very healthy this month, minus the weight loss due to teething. We hope she continues to do well through the winter and with being around all of the germs that the kids, Sid, and I bring home.

Thank you to all of my new blog friends. It is great to meet people who are going through or have gone through similar situations as I have with Lainey. I often look at blogs, but never comment. I appreciate you welcoming me into your lives through your blog. I no longer feel so alone with having a "sick" child, while everyone else around me has healthy children. God knew what He was doing when He chose us to take care of these precious angels!

Until tomorrow......

DeAnn

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

Fevers, Drooling, and Weight loss, Oh WHY?

Since our last visit to the Cystic Fibrosis Center in December, Lainey has been struggling to follow the advice of Liz, the dietitian! We have quit feeding her solids and focused on feeding her 30 oz. of 24 calorie Alimentum formula. YEAH RIGHT! Once Lainey is full, there is no forcing her to eat! Now she isn't eating solid food, but continues to only eat around 20 oz. of formula! In addition to the change in food intake, Liz called the day before Christmas suggesting we increase Lainey's Ultrase from 3 capsules before each feeding to 4 capsules. In several days we noticed a weight loss, change in stools (number, consistency, and color), and a lack of interest in her bottles. She is teething, so for my own comfort, I convinced myself she was having a difficult time with feedings due to her teeth.

Thursday evening I decided enough was enough. Sid weighed her so I could call the Synagis nurse with her weight, only to find that she had lost 4 oz. in less than a week! I decided we had to have a new game plan. I called my mom and told her we were going to feed her any amount of formula she would take and then let her eat as much rice cereal and baby food as she wanted! Since mom is her caretaker during the day, she agreed that we needed to do something. Yesterday mom fed her as much food as she would eat. She ate a lot of food while continuing to take a lot of formula. It was great to see her eat, but it is still discouraging because she is having a lot of stools throughout the day.

With the new worry of extremely foul stools, large amounts of stool, and the frequency of her stools, I called her Cystic Fibrosis doctor. Dr. Caplan was not happy to hear that she was loosing weight and has had an increased number of stools. With this news he wants us to change a few things. Now Lainey will be drinking PediaSure because it is 30 calories versus the formula's 24 calories. PediaSure is not cheaper either as I found out last night at Walmart! $9.88 for 6 - 8 oz. bottles! Two cases will maybe last 3 days! He wants us to continue trying to feed her solids, but they must contain vegetable oil to add to the fat content. We are also trying to go back down to 3 Ultrase capsules before each meal and work our way back up to 4 as we deem necessary. We will do whatever it takes...she has been too healthy (knock on wood) to let things go down hill now! Luckily we go back to the CF Center on Friday. Maybe we will be back on track by then!

In addition to Lainey's medical needs, we have had other things occurring within our family as well as with our friends. On New Years day, Liam's day care teacher/director passed away. She was only 41! She had gotten home from Night Watch at church and was talking with her sisters at the table when she had what appeared to be an asthma attack. They called 911 and she was revived by the EMTs long enough to tell her son she loved him and then she was gone. I received the call about her death around 10:00 am as we were headed to Stone Mountain for some snow tubing. It has been extremely difficult to take Liam to the day care each day and not see Teresa's smiling face to greet us. Liam asks all the time, "Where Resa go?" He isn't the only one that loved her and it was evident by the number of people at the wake and funeral. She will truly be missed.

Also this week, I thought that I was going to have to hurt Sid after he backed into my Expedition on Monday. He was distracted by the kids and put his truck in reverse, rather than drive! Needless to say, my vehicle is in need of some cosmetic repair! After some yelling and fit throwing, I am feeling better and have given Sid another chance at life! :) Now we know what our tax refund money will be spent on this year!

Yesterday I went for my physical. Beside the continuation of iron supplements, multivitamins, and vitamin D, almost everything checkout okay. I did have protein in my urine and elevated liver enzymes, therefore I have to go back in two weeks for more blood work. This blood work will help her decide the next course of action. I also went to the vein specialist about my varicose veins. I am not one to care what they look like, I just want to get rid of the pain! The constant heaviness, numbness, and sore feeling that runs up and down my leg is extremely painful. The doctor concluded that I have small veins, and he would like to inject foam through the veins to close them off, thus resulting in little to no pain. Sounds like a plan until he says my insurance probably would not cover it because it is considered cosmetic. It would only cost me $475! Uhhh, NO! That is why I have insurance. I really don't care if my whole leg is purple, I just want the pain to go away! After speaking to his insurance lady (a.k.a. sales lady), I told her I would go somewhere else for a second opinion. Needless to say, she is going to check with the insurance company to see if they will cover the procedure! Now, that is what I thought! :)

Yesterday we also found out that Sid's insurance is not what we thought it was! The plans all had similar names, and it seems that somewhere between our conversations at home about health coverage and the person who works in human resources at the hospital, the wrong plan was chosen! Not cool. The insurance chosen is more for someone that doesn't need to go to the doctor and doesn't take any medications. Since Sid takes 4 medications and has to go to the doctor every 3 months for refills, this new insurance plan is obviously not for him! Essentially we have to pay $3600 out of pocket before it covers anything! Not what I was thinking would be good for the family when we put him on his own insurance! Unfortunately, we cannot change this until next year and he has to have his medications to obtain optimal health. So much for saving money!

I will try to post some updated pictures sometime this weekend! I am home with the three kids by myself until 7:45 each night, so I have limited time to post unless they are napping! Please continue to pray for Lainey's weight gain, less amounts and frequencies of Lainey's stools, our insurance, and test results. Thanks for all of your encouraging words and thoughts during these physically and emotionally draining times in our lives!

Love Always,
The Smithson Family

Lainey's New Year Gift!

Lainey has a New Year gift...a little bit early! Nope, it isn't the baby....although she is too cute and looks a lot like Lainey!

It is her first, NEW tooth!! She didn't get it for Christmas, but she got it just in time for the New Year!

Christmas in the life of a Smithson

The red and green paper countdown chain, shopping, wrapping, hiding presents, anticipation, excitement, family, friends, church, Santa, food, traveling, and LOVE..... are just a few of the things we Smithsons enjoy about Christmas. We got everything we wanted and MORE!! Sid and I are blessed to have the ability to provide traditions and memories for our children to remember and continue for many years to come. We are also blessed to be able to share the traditions we so fondly remember as children with our own children.

Our Christmas actually began on Monday the 21st by exchanging gifts with my birth mother and her husband, David. Although I have only known Carolyn since 1999, our bond is one of 29 years! She has always made me feel so welcomed into her life and into her family. This year she and David gave us numerous gifts, but the best and most anticipated gift of all is a Disney Cruise to the Bahamian Islands...in October 2009! I am not sure if Sid and I are more excited or if the kids are! Thanks a bunch Carolyn and David!

Carolyn and Lainey

Christmas eve we went to the 9:00 pm service to accommodate Sid's work schedule, and it was wonderful. Mom, dad, Dayna, Brad, and Lilly Anne joined us for church. Lainey was very well behaved and sang nicely throughout the Christmas hymns! We thought going to church would make the boys extremely tired....not so much! They were up until 11:45!

The Snug Bug at the Christmas Eve church service.

Christmas morning Logan came into our room around 9:00. It was still as quiet as a mouse around our house! Everyone was worn out from our late night Christmas Eve! When it finally dawned on Logan that it was Christmas morning, the morning he had been counting down to for 364 days, he was down the stairs in a flash! He came back upstairs to report that Santa left a lot of presents, but he only saw gifts for Liam, Lainey, and dad. After convincing him to wake up his brother and going back downstairs to look for his name on the presents, he finally found "more than I asked for!"

Our tree after Santa visited!

We all got what we asked for plus a few things we needed! It was so much fun to see the children open their gifts. Logan stacked all of his gifts in nice, orderly stacks. Liam opened the gifts as soon as they were passed out to him! Lainey did extremely well opening her gifts, then playing with the paper! Logan got the Handy Manny Transform Tool Truck he asked for as well as a Nintendo DS, Aqua Globes, Life Is Good shirts, a Georgia Bulldog jersey and hat, a digital camera, Nerf shooters, flat screen Lite Brite, and tons of movies. Liam got the Handy Manny talking tool box, Handy Manny TV repair, a Handy Manny shirt, shoes, Hot Wheels, Triple Tower race track, a Lite Saver, and movies. Lainey got a push toy, a baby doll, some clothes, some movies, and some toys to chew on! Sid got socks, undershirts, Life Is Good shirts and p.j. pants, movies, Crocs, New Balance shoes, flashlights, workout equipment, and more. I got perfume, an iPOD shuffle, electric scissors, a homemade peg board for all of my crafts, and more! Not only was our house full of children, poopy diapers, wrapping paper, and presents, but it was also full of LOVE! All of the times I had wished for a nap or the children to take a nap and all the times my husband was acting like the children, the mess in my clean house was a reminder of how short life really is and how much I truly enjoy being a mom and wife. It was the best Christmas I can recall.

Logan's organized stacks of presents. I wonder where he gets that from?

Logan with food for the kitchen set.

"Aqua Globes will water plants for two weeks and you don't even have to lift a finger!"
Logan has memorized many infomercials, but this is the one thing "we have to get!"

Liam also got food for the kitchen set.

Liam opening the Handy Manny TV repair.

Logan with the ONE toy he asked Santa to bring for Christmas, a Handy Manny Transform Tool Truck.

Lainey opening some clothes she got from Santa.

Logan with his surprise gift ~ Nintendo DS!

Lainey and daddy looking at her Newborn Cabbage Patch Doll.

Several hours after opening gifts from Santa, grandma Barbara (Sid's mom) dropped in for a little while with a lot of gifts. It also happened to be meltdown time for Liam and Lainey, also known as "I need a nap, NOW" time! Our visit with grandma Barbara was short lived, but the candy she left is being devoured as I type!

After the children took their nap and I finished cooking, we went to my parent's house. Our 4:30 meal turned into a 6:30 meal, but I was prepared! I made several snack dips to munch on while we finished preparing dinner. Dinner was awesome, with Honey Baked Ham, sweet potato souffle, German potato salad, green beans, rolls, and coconut cream pie and Dayna's triple chocolate cheesecake for dessert! Papa Dan(Sid's ex step-dad) and Rachel came to join us for dinner and the exchanging of gifts. It is always great to hang with Dan!

With full tummies, it was time to open presents! Logan helped Gigi pass out the gifts, and boy were there a lot of gifts! My parents always spoil us with wonderful gifts. Sid and I, as well as Dayna and Brad, scored a new laptop! This was awesome since the last laptops they gave us had quit working this summer. There were so many gifts given by all, I couldn't possibly list each one of them! It was an awesome evening and everyone was happy, well rested, and FULL! Dayna and I are so lucky to have been chosen by two wonderful people! We couldn't have picked better parents ~ maybe healthier, but not better!! :)

Gigi and Logan handing out presents.

Sid and Liam waiting for their presents.

Logan opening presents at Gigi and Papa's house.

The day after Christmas we got up early to begin our trip to South Georgia. First we went to my dad's parents house in Perry. Grandma D had tons of yummy food prepared as she always does. We opened gifts and lucked up with some money. It was great hanging out with Grandma D and Pop. Our visits are always so short.

Great Pop and Lainey hanging out.

The great grandchildren with Grandma D and Pop.

Lainey, Liam, Logan, and Lilly Anne

Warner Robins was our next stop. Grandma Lil and Grandpa Bob had a house full! This is the one time of year we get to see almost all of our family. With mom having 4 brothers, whom are all married, and almost all of them have 2 or more children, whom may also have a spouse, and many live in Florida ~ to get everyone together in one spot at the same time would be a miracle! Although everyone was not there, we still had a blast hanging out with the people we do not get to see very often. Opening gifts with the Rodenroths is always a production because there are so many of us. This year we said we were not exchanging gifts. Grandma said she was only doing gifts for the kids. YEAH RIGHT! Almost everyone left with a gift and the kids really racked up! Not only are the gifts a production, but the food is like going to a gourmet buffet. Everything tasted so good (when I finally got to eat...I was on Liam duty!) It was so much fun, but we had to leave due to Sid's work schedule requiring him to be at work by 6:30 the next morning. It was around 11:00 when we got home and we were beat! Today we are just hanging out in our p.j.s all day and not leaving the house...well unless we feel the need for some DQ ice cream!

Grandma Lil with Dayna's baby, Lilly Anne.

As always, we missed Sid's dad Noel, whom Lainey carries his name as her middle name. He sent us a very nice monetary gift, but to have him here would be better than anything we could dream of! Maybe soon it will be in our schedule and budget to take a trip to Texas to visit Sid's relatives!

We hope everyone had a Merry Christmas. Our Christmas was the best thanks to our friends and family. Thank you for all of the prayers that allowed us to be here together and have a safe and healthy holiday. If you did not get a Smithson Family Christmas card and would like a copy, please send us your address! We love you all!

At CHRISTmas with love,

The Smithson Family

All I want for Christmas is ANOTHER enzyme!

Yesterday Liz the dietitian from the Cystic Fibrosis Center called to give us a report on Lainey's stool sample from last week.....Results: Not Good! She has a lot of fat in her stool, thus the reason she is not gaining adequate weight...not to mention the reason for the stench that lingers in our house! I am going to begin working on an invention that successfully contains a CF baby diaper (meaning the diapers can't be smelled from our house to the neighbors)!! It is really important that Lainey absorbs as much fat as possible so that she gains weight. It is also assumed that if the amount of fat in the stool is elevated that she must also be losing important vitamins, minerals, and other things from her food. This news was a bummer, since last month's stool sample was very close to normal!
With this news, Liz recommend adding another enzyme to the three she already takes before each meal! Now Lainey is taking 4 Ultrase enzymes before she eats a meal! Although this is on the high end for a child of her age and weight, we are hoping this does the trick! If this is not the solution, we will try another brand of enzyme! In case you are unsure of what the enzymes are designed to do, if they are working properly they should help take the place of natural pancreatic enzymes. They help breakdown food and assist in absorption of fat, vitamins, minerals, and other important things found in food. Since the mucus within Lainey's body is very thick as a result of Cystic Fibrosis, her pancreas is plugged. As a result of a plugged pancreas, Lainey's natural pancreatic enzymes are not able to be released into the stomach to aid in breaking down her food. Now we are working on finding out exactly how many enzymes she needs to correctly and effectively breakdown her food! What a chore this has proven to be! We have been working on this since she first ate when she was in the NICU at Egleston! I am pretty sure it will be something we will always have to work on....until there is a cure for Cystic Fibrosis! BLAH....but we will do ANYTHING it takes to make sure Lainey is healthy, happy, comfortable, and everything else she needs to fulfill her dreams!
Thank you for keeping us in your prayers! We are blessed to have so many people keeping us in their thoughts and prayers! Have a Merry Christmas! Look back tomorrow for pictures of the Smithson Family Christmas morning!

God Bless,
The Smithsons

Pictures With Mr. Claus...aka: Santa

Logan and Liam waiting to see Santa.

Logan waiting for "a long time" to see Santa!

Liam actually sitting still while waiting to see Santa!

Logan riding the horse.

Liam riding another horse!

After an hour of waiting in line to see Santa, we finally got to tell him what we wanted for Christmas....

* Logan wants a Hanny Manny Transform Tool Truck.

* Liam wants "Apple Juice!"....Logan told Santa just to bring Liam a truck!

* Lainey wants a break from her brothers.

* Sid wants a day off of work, a day off of school, away from crazy children, and no "Honey Do list!

* DeAnn wants a day of Peace and Quiet!

Verdict: Santa says, "I will work on that!"

Santa and the kids....

Logan was too heavy for Santa's lap, Lainey would stare and cry (she isn't liking too many men right now), and Liam....Isn't he such a pleasant child?

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 .

Family Pictures!

We finally got everyone in our family of 5 together at a time the portrait studio was open! Although we have a few good shots of each one of us, we would have liked to have had more. But as they say, beggars can't be choosers! If you see Liam in a picture, it is a Christmas miracle! He does not like to be bothered with sitting still or being in the tiny studio! Enjoy the pictures!

Lainey Bug

"Surely Not! Does this lady think she has to talk to me like that to get ME to smile?"

SMILE!

WOW! A decent picture of Liam!

Logan James ~ up close and personal!

Our handsome boy!

The Smithson Family

Look at all of the red-heads!

The Christmas Bug

Here are a few pictures of Lainey, the Christmas Bug!

6th Month Amazement

There aren't any HumBUGS here!

Today Lainey had her 6 month check up with Dr. Onal at Pediatric Associates. He is totally amazed with her health, feats, and accomplishments! His amazement made me feel as though I was receiving the highest honor anyone could ever get recognition for! I wish everyone could have been in the office with me, for it is with the aid of numerous people that Lainey has continued to do so well.

The Christmas Bug!

As of today, Lainey weighs 15 lbs. 7 oz. (45th percentile), 26 3/4 inches long (85th percentile), and her head circumference is 17 1/2 (95th percentile)! In looking at the growth chart, Lainey is moving in the right direction ~ UP! Her lungs sounded clear and everything looked wonderful. Dr. Onal is confident that she is physically developing fine, but may be a little behind due to her month-long hospitalization. Mentally, all seems perfect (Duh, look at the size of her head...it is holding a BIG brain!!) We are blessed to have such a "perfect" baby girl! Our Lainey Bug makes Cystic Fibrosis look Good!

Lainey and Mommy checking out the tree!

Friday I will be going back to the doctor. One only knows what tests or meds they will put me through this time, but hopefully something will help with finding the cause of my aliments.

With the Christmas season all around us, my camera is sure to use several dozen AA batteries! Keep checking back for pictures, as I will post pictures regularly.

Thank you with "enzymes on top" for all of your thoughts, prayers, words of encouragement, and generosity! We love you!

Love Always,

The Smithsons

Blessings

Who was that overweight man by the Christmas tree?

Now that I am finished stuffing my face with Thanksgiving yummies, I am finally free to update everyone on our most thankful Thanksgiving. Although dad and grandma Lil were sick with the stomach bug (Logan and I began spreading it several weeks ago) and it was cold and rainy, we had a wonderful time camping at Stone Mountain! We arrived and set up our campsite just in time for dinner Tuesday evening. After eating a wonderful meal made by grandma Lil, we were actually able to go to bed by 10:30!! The next morning came quickly along with the news that both dad and grandma Lil were up all night with the stomach bug! With that, our camper became "hang-out" away from sick people!

On Thursday everyone was feeling well enough to eat a full Thanksgiving feast. Dayna, Brad, and Lilly Anne joined Sid, Logan, Liam, Lainey, mom, dad, grandma Lil, grandpa Bob, Uncle Donn, Aunt Jenny, Emily, Erin, Evan, Elizabeth, and I for Thanksgiving dinner. We were like the original Indians and pilgrims ~ eating outside at a long wooden table with a feast of food fixed using numerous methods of preparation! Note * campers have ovens and stoves, but not big or durable enough to handle a Thanksgiving feast. Luckily our campsites were equipped with big grills ~ ideal for our cooking minus the fact we had to do the cooking outside!

After a day full of compiling lists of items I wanted to purchase, I was up and shopping by 7:00 on Friday! Fortunately not many people that live close to Stone Mountain park were interested in shopping! I was able to get everything I wanted and did not even have to wait in line at the register....and I was at Wal-Mart and Target! I saved a lot of money and almost completed my Christmas shopping within a few hours....now for my least favorite thing ~ wrapping!

We were thrilled to have Sid's grandparents, Dick and Juanita, come to visit us in Stone Mountain. On their way to Florida for the winter from their home in Michigan, Dick and Juanita came to see our family and to meet Lainey for the first time! It is always great to see them although it is not as often as we would like! :(

It began raining mid afternoon on Friday and continued through our packing, our trip home, and the remainder of the day on Saturday. We had a wonderful time with our family and camping at Stone Mountain, but it is always great to be back home.

The Smithson Elves

After much convincing from the kids and I, Sid got the decorations out of the attic and began putting up the tree on Saturday evening! I am not sure who is more excited about Christmas this year, Sid and I or the kids! Logan and Liam are really into making Christmas lists this year. Their understanding of Santa and the true meaning of Christmas with the birth of Jesus is more apparent than ever. The innocence of a child at Christmas is priceless.

Buggy Claus!

I have added the video below as a reminder of the things our family is thankful for. This year has been full of emotions ~ happiness, sadness, anger, helplessness, jealousy, fear, awe, wonder, numbness, loneliness, amazement, hopefulness, and so many more emotions that continue to be with our family daily. The support of our family, friends, and people we don't even know, has been the greatest of all blessings. We are eternally thankful for everyone who has and continues to keep our family in their thoughts and prayers. It is our mission to share our story with as many people as possible in order to spread awareness of Cystic Fibrosis. We hope that Lainey will be able to tell her children and grandchildren that she had CF, but with the help of others CF now stands for Cure Found. Please consider making a donation to the Cystic Fibrosis Foundation ~ 90 cents of each dollar donated is used directly for research purposes. Donations in Lainey's honor can be made at: http://www.cff.org/GiftReg/DeAnnSmithson

** Before watching the video, scroll to the bottom of the web page to pause the music. The pause button is on the top left of the music playlist.**

Sincerely,

The Smithsons

Good Times

1998 ~ 10 year class reunion, November 22, 2008.

Sid and I with one of my 8th grade boyfriends, Skipper Brown, and his wife Karley.

This weekend Sid and I attended my 10 year high school reunion. After months of planning the reunion with several of my classmates, it finally all came together! It was great seeing some of my classmates that I haven't seen in 10 years! Many still looked the same, while others had changed dramatically!

Our D.J. was awesome, bearing lottery tickets as prizes for the categories game. Sid and I happened to win 2 categories! We have been married the longest (6 1/2 years) and we have the most children! These are not exactly what I thought my winning categories would be as I graduated 10 years ago, but I am proud of these accomplishments.

Sid was especially excited to meet several of my past boyfriends! While adorning my picture on his name tag, Sid was approached by two of my eighth grade boyfriends. Wow, talk about awkward...especially since Sid works with one of them at the hospital and neither of them knew they had me as a connection!

We thoroughly enjoyed our child-free evening at the reunion. At this point, our ideal child-free evening would be getting in bed by 9:00 and sleeping in until 8:00! This MAY happen in about 18 years! As for my parents, AKA the babysitters, they were glad to offer their services. Next time they would prefer their hot water heater was working! They had to bring the kids to our house so they could all have a warm bath. In addition, they would probably prefer the kids' bedtime to be before we left for the evening! Watching the three of them is not an easy task!

As for mom, her visit to Emory on Wednesday went well. She will begin her breathing treatments again soon. She has been instructed to begin slowly and work her way back up to a comfortable dosage. Although the doctors do no think this is the solution to mom's problems, this is what she will need to do until science has more to offer. The pains in her arms and chest are just occurrences due to pulmonary hypertension. They have also prescribed an inhaler to assist in her breathing. She will go back again next month for a follow up.

Dayna, Brad, and Lilly Anne were discharged from the hospital on Thursday. On Friday Lilly Anne went to the doctor for a checkup only to find out that her bilirubin was elevated. She had a bili bed in front of the window for the weekend. This allowed her to microwave enough to lower her levels dramatically. With a little supplementing of formula mixed with some breast milk, she is well on her way to sleeping in her own bed (rather than the bili bed.)

As many already know, I love teaching. The love for kids and teaching them skills for life runs in our family. Today I was nominated for teacher of the year along with 2 other teachers. This is a great honor. This is only my 3rd year at Fair Street, 7th year of teaching, and to know others are aware of my love for the children at our school humbles me. Although I was not ultimately chosen as our teacher of the year, I feel as though I am one step closer to my personal goal. Sharing my love for teaching through my actions toward the students as well as my coworkers is truly my calling. One day I hope to follow in my mother's footsteps, becoming teacher of the year for my school and possibly for the entire system. My mom has always been an inspiration. I have big shoes to fill and many footsteps to catch up with, but I look forward to the day I can walk along with my mom. She is an amazing woman!

I received a letter from my endocrinologist, only to find out that my Prolacin levels (lactating when I am no longer nursing) are still elevated! I am instructed to continue taking the medications I have been taking for a month and a half. No other test results have been presented, therefore either of two things could have happened. One, she may not have had the blood run for anything other than my prolactin levels, or she has not had the time to look at the other results in order to let me know what to continue or discontinue. I see a second opinion in my near future!

For Thanksgiving our family will be at Stone Mountain. We are taking our camper and meeting up with mom and dad, grandpa Bob and grandma Lil, Uncle Donn and Aunt Jenny and their 4 kids. Mom and dad left on Sunday and took Lainey Bug along! When the babysitters leave, you have no choice but to send the baby with them! I am not sure dad was prepared for the amount of things I packed for Lainey, but he grinned and loaded them up! It is amazing how the smallest person in the house requires the most stuff! We love camping and this will give Sid and I some much needed rest from our everyday hustle and bustle. The kids think the "Big Mountain" is awesome and have been ready to go since we mentioned it last week. On Thursday, Dayna, Brad, and Lilly Anne will join us for our Thanksgiving meal at our campsite. Mom and dad will be leaving Stone Mountain on Friday to go to Athens for the UGA vs. Georgia Tech game!

This year we have so much to be Thankful for. We are thankful for all of our friends, family, and people who follow our story with loving hearts and prayerful minds. We are thankful for our health. We are thankful for our two amazing little boys! We are thankful for the arrival of our little girl and to have her in our lives and our hearts. We are thankful for the numerous nurses and doctors that took care of Lainey in her most critical times. We are continuously thankful for the doctors who take care of Lainey on a regular basis. We are thankful for an overall healthy year for mom and dad. We are thankful to have parents that are able to care for our baby while we work and attend school. We are thankful for the safe arrival of many new babies in our lives, especially Lilly Anne! We are thankful for stability in our jobs and the ability to make it through the financially difficult time in our lives and in the country. Most of all we are Thankful to have God in our lives, for He is the reason we have everything else to be thankful for! Have a blessed Thanksgiving.

Love Always,

The Smithsons

Lilly Anne is here!

Lilly Anne Kiley

November 18, 2008

7 lbs. 4oz.

20 inches long

Dayna had a fairly easy delivery today bringing our new niece, Lilly Anne, into this big world! Lilly Anne weighed 7 lbs. 4 oz. and was 20 inches long! Lilly Anne looks just like her daddy with the exception of having Dayna's nose. Currently she is taking after her mother and being very lazy...she doesn't want to make the effort it requires to get nourishment (the part getting nourishment is not like her mother!) Dayna waited until Mom and I could get to the hospital before pushing 4 times to deliver Lilly Anne. Although I have had 3 children myself, this was the first time I have witnessed a birth. Totally cool and truly amazing, but not enough for me to want anymore! I am so excited that Lainey has a cousin so close in age! They are sure to have a blast together, and if they are anything like Dayna and I, they will have each other to get in trouble with!

Thank you for all of your prayers!

Sincerely,

DeAnn