Thought of the Day

'To get something you never had, you have to do something you never did.' When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better.

Concentrate on this sentence...'The will of God will never take you where the Grace of God will not protect you...'

In a CF world it is often easier to ask "Why?" than to trust God. When I found this quote it truly hit home. Thank God for everything He has given me and the future I have yet to endure.

This weekend we went to a kids fun fair at our local mall....Can you believe I actually got out of the house with the 3 kids?! It was warm and we REALLY needed to get out! Below are some pictures from our fun outing!

Sweet Bug!

Logan and the "Pirick"!

Liam the fireman...I introduced him to the local firemen and gave them our address incase we ever needed them to save us or the house!

Happy Monday!

DeAnn

8 months ago today....

Lainey ~ 2 days old ~ May 22, 2008

8 months ago today was the day doctors told us that our perfect baby girl would need to have x-rays of her stomach. 8 months ago today the nurse force fed our baby in all attempts to produce her first stool. 8 months ago today our baby girl began to spit up yellow bile and show signs of a distended stomach. 8 months ago today I was asked to call my husband so the doctors could talk to both of us about our baby girl. 8 months ago today we were told that our 2 day old baby girl had a bowel obstruction. 8 months ago we were told our sweet baby girl would be taken to the NICU. 8 months ago today our baby girl was ripped out of our arms and whisked away. 8 months ago today our baby girl was severely dehydrated which resulted in fluids being pushed through an IV in her head. 8 months ago today a tube was placed down our baby girl's throat and into her stomach. 8 months ago today we were instructed to wash our hands and arms for five minutes before visiting our baby girl. 8 months ago today we were told that our 2 day old baby would most likely need surgery. 8 months ago today we sent visitors away without seeing our new bundle of joy. 8 months ago today we cried like we had never cried before. 8 months ago today we had to call our family and friends to let them know the status of our precious baby girl. 8 months ago today we prayed more than we had ever prayed before. 8 months ago today our perfect family was changed forever....

Lainey in NICU ~ 2 days old ~ May 22, 2008

Today, 8 months later, we are still changed and forever changing. Lainey has been a blessing to our family. I never imagined how one perfect little baby can make such a change, an awareness, an impact, a difference in and on so many people. Her smile could fool anyone into the falsities of Cystic Fibrosis. Lainey truly makes CF look good! God gave us this perfect child to be our teacher, our leader, our strength, our believer, our endeavor, our light.......and for that we are forever grateful. Thank you to everyone who has helped us over the past 8 months. Thank you to everyone who has prayed for us over the past 8 months. Thank you to everyone who has followed our story for the past 8 months.....and hopefully will continue following us and praying for us for many years to come. We love you!

The Smithsons

Sid, DeAnn, Logan, Liam, & LAINEY

Lainey ~ 8 months old ~ January 2009

Blog Award

I received this blog award from Lil' Chris's Mom. This award is for those who step out of their comfort zone and make new friends through their blog. I am thrilled to be given this award! I usually read, but never comment. Since I have met some blogging friends, I feel like I have a new extended family.

I'm going to pass this award to a few of my blogging friends. These are a few of the blogs I check regularly and I think deserve recognition.

This award is presented to:

Billie @ http://anotheransweredprayer-take2.blogspot.com/

Christy @ http://thejobes.blogspot.com/

Josie @ http://josierock.blogspot.com/

Dayna @ http://thekileyfamily.blogspot.com/

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!