Monday, January 26, 2009

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!


Thursday, January 22, 2009

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

Sunday, January 18, 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:

Saturday, January 17, 2009

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. :(

Thursday, January 15, 2009

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......


Monday, January 12, 2009


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

Saturday, January 10, 2009

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