Every Ounce Counts!

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

Lainey and Dr. Caplan

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

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

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

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

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

With Gratitude,

The Smithsons

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

PediaBlah!

A PediaSure - Free Girl!

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





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





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





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





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





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





With Lots of Love,


The Smithsons

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

Woo Hoo!

"Who says you can't accessorize when you are asked to strip down to your diaper?!"

Today Lainey had her monthly checkup at the Cystic Fibrosis Center. Although initially she was frightened (as she is with most men), she quickly warmed up to her adopted great grandpa, Dr.Caplan! Everyone at the CF Center was amazed at how much she had grown and changed over the past month. The office was quite busy with several patients. This was the first time we have seen any patients in the waiting room. Seeing other patients was painfully difficult, as for today we saw a young girl who was wearing oxygen and was extremely thin. Seeing her reminded me of how devastating Cystic Fibrosis can be. I try not to worry about what I see or hear in relation to CF unless it is directly related to Lainey, but I can't seem to get the sight of this particular young girl out of my mind.

On a positive note, Lainey weighs 14 lbs. 15.8 oz! This is 1.2 oz away from a gain of 2 pounds in one month! Although this was a significant gain, she continues to be in the 30th percentile for weight. She grew almost one and one half inches! She is now 25.4 inches long, in the 60th percentile. Her height to weight ratio puts her into the 48th percentile ~ we are almost in the green (on target height to weight ratio)! Thanks to Gigi for feeding Lainey full of rice cereal, baby food, and formula all day, she is catching up!

Overall, Lainey's appointment went very well! Her lungs were clear, nasal congestion was cleared up, and her stool was solid for the first time ever! We are not changing anything with her medications because it is obvious by her weight gain that everything is doing what we want it to do ~ keeping her happy and putting meat on her bones!

We are totally thrilled with her appointment today! I feel as though we have accomplished a major task in keeping her healthy and getting her closer to the green in her height to weight ratio! Her next appointment at the CF Center is December 17th. We are hoping for another awesome report!

Your thoughts and prayers have been felt! Please continue to pray for Lainey and our entire family! We also want to thank our friends and family who have donated money to the CFF in Lainey's honor! You are true life savers and are our heroes! We appreciate your help in finding a cure to help Lainey and everyone else suffering from Cystic Fibrosis!

P.S. Sid and I will have a new niece, and Logan, Liam, and Lainey will have a new cousin ~ hopefully tomorrow! Please pray for Dayna and Brad during the birth of Lilly Anne! Check back for pictures!

With Love,

DeAnn and family

Firsts

"Too bad the weather is crummy and mom said I can't go out today... I am looking too cute!"

This week the Smithson family has had several "firsts." On Sunday Logan was invited to a classmate's birthday party at Skate Country. This was Logan's first time on skates and he thought he was going to just "take off!" Needless to say, he spent more time on the floor than standing, not to mention skating! Although he kept falling, with his will and mom's muscles, he kept getting up and trying again. By the end of the party, he could "walk-skate."

Logan James skating for the first time!
This is the only picture I was able to take with Logan standing up!

Although I am not sure I was ready for Lainey to reach this milestone, she began holding her bottle this week! Sid was not moving fast enough and Lainey was ravenous, so she grabbed the bottle from him and fed herself! At least we still have a while until she can take her enzymes without help!

This "Bug" was tired of waiting for her dad to give her what she wanted, so she took care of it herself! Dad better watch his wallet!

It is amazing what the removal of tonsils, adenoids, and ear wax can do for a non-English speaking 2-year-old! This week Liam started talking more and much clearer than ever! It is almost like he is hearing things for the first time and actually able to repeat words appropriately! He has called himself "Wawa" for several months and now can say Liam! Logan has been "Ogie" and Lainey has been "Beebee." Logan and Lainey Bug are two names he says several hundred times a day, although they are not always used in a nice manner! We are totally shocked by the dramatic change his speech has made. He seems much happier and less inclined to throw a fit now that he is able to communicate his wants, needs, and feelings! It is too bad the doctors will not remove tonsils until a child is two and one half!

Liam ~ "One tough cookie!"

Yesterday Lainey had her second dosage of Synagis. We had to weigh her at home and report her weight to the nurse in order for her to administer the correct dosage of Synagis. Lainey weighed in at 14 lbs. 8 1/2 oz! We are thrilled by this weight! Last month at Dr. Caplan's office, she weighed 13 lbs. 1 oz. This is a gain of almost one and one half pounds! On Monday we will be going back to the CF Center to see Dr. Caplan for Lainey's monthly check-up. At this time we will find out if she has gained any more weight. She loves eating rice cereal and baby food with added vegetable oil, which has proven to help her pack on some weight! Check back Monday evening for an update on our visit.

On Monday I will also go to the doctor to have repeat labs drawn. Hopefully we will learn something from these labs. If the meds I have been taking for a little over a month are doing what we intended them to do ~ increase iron levels, lower prolactin levels (breast milk release), raise vitamin D levels, higher estrogen levels, and higher kidney function ~ then I will feel like it has been worth the 5 pounds I've gained due to the meds! I am still not totally convinced that everything is okay, but I will wait to see what the tests reveal. I am continuing to lose an abundance of hair, feel light headed, have hot flashes, and have several pains associated with my right ovary and my kidney....did I mention weight gain? With all of this, I am trying to direct all of my time to the kids and making/monogramming things to keep my mind off of my health. Teaching 21 first graders and having 3 kids of your own, can help anyone take their mind off of any health issues they may be having! :) Until I get any results, I have more exciting things to think about....such as becoming an aunt!

Tuesday, Dayna is supposed to be induced and we will finally get to see Little Miss Lilly Anne! I will be posting pictures on Tuesday if Lilly Anne decides to let the pitocin do its trick!

On Wednesday, mom and dad are heading to Emory for their appointments with the Cardiologist. Mom has been experiencing odd pains in her arms and chest over the last several weeks. With the recent death of one of their close friends, they are in need of a check-up! Through David's death last week, just a little over a week from hanging with mom and dad at the Georgia/Florida game, we have learned that there are no guarantees to life. Both mom and dad have defied many odds. I have had many more years with them than many doctors have ever expected. Selfish as it may be, it has not been long enough! I am praying for a good report after their visit with Dr. Book.

Please continue to pray for Lainey, the boys, Sid and I, Dayna and Brad, Lilly Anne, and mom and dad! This week will bring a little more craziness into our lives, but we are ready to take it on! Thank you for your continuous lover, prayers, and support! We need it and truly appreciate it!

Love Always,

DeAnn and family

Tonsils....What tonsils?.....I want to eat and go to the fair!

The tonsils are gone....but the meanness, not quite so much! Liam had to be at the hospital by 6:00 this morning. All he wanted was apple juice! It is amazingly difficult to keep apple juice away from a 2 year old! Although he refused to wear the hospital gown, his surgery went well. Dr. Stewart removed his tonsils, scraped away the regrowth of his adenoids, and cleaned an abundant amount of earwax out of his ears. He decided to hold off on putting ear tubes in again in hopes that removal of the tonsils will keep his ears well. You would have never guessed that Liam had his tonsils out due to the excessively loud screeching following surgery! Why the screeching? Is he in pain? Does he feel sick? None of the above! He did not like the pulse oximeter on his finger! Plus, he could not bend his hand well enough to drink his apple juice due to the iv! After an hour of listening to him scream, the nurse was ready to see us leave! On the way to Gigi and Papa's house, Liam spotted several things he wanted....Chick-fil-A ("Biscuit. Play."), the fair ("I ride"), Mommy's school ("I go!"), and IHOP ("I want some!"). As soon as we arrived at Gigi and Papa's, Liam began yelling from the car for Papa to get him out of the car! We have been servants most of the morning as well as deterrents! He wants to eat only red and/or blue Popsicles, apples, hot dogs, pizza, pretzels, chips, and everything else in sight! Thank the Lord for Hydrocodone! It helps with keeping the pain at bay, but it doesn't keep the activity level down like it would on most people! It hypes Liam up! Sorry Gigi and Papa....no down time from this surgery!

Lainey also went to the doctor. On Monday we went to see Dr. Caplan. All was well with Lainey. She now weighs 13 lbs. 1 oz. She is 24.7 inches long! Although she gained weight, she fell in her percentile. She was at the 40th percentile for her weight and she has now dropped to the 23rd percentile. Not what we wanted, therefore Dr. Caplan decided to up her Ultrase enzymes from 2 before each meal, to 3 before each meal. We have also upped the amount of salt in her bottles from 1/8 tsp. in each bottle to 1/4 tsp. in each bottle. They have encouraged us to begin feeding her baby food in addition to the rice cereal she is already eating. Like her other food, we have to make additions to the baby food. With each jar/container of food, we have to add 1/2 tsp. of vegetable oil!! Talk about nasty, but she doesn't know the difference! Her lungs continued to sound clear and for that we are thankful! Other than adding a few things to Lainey's diet, her visit to the CF Center was fairly uneventful. Well....at least for the health aspect of the visit. As for her cooperation, I can say that it was less than desirable. If anyone at the CF Center was unaware Lainey was there for her check-up, they were soon in the know. She fussed from the time we undressed her to weigh in until we put her in her car seat, which was about an hour and a half. Due to this behavior, Dr. Caplan (her adopted Great grandpa) was a man of few words! We will go back again on November 17 for another check-up.


Today was also Lainey's first visit from the home health care nurse. She came to Gigi and Papa's house to administer Lainey's first of 7 Synagis shots. This took about 45 minutes and I had to be present for the first appointment to sign paperwork. The shot took about 5 seconds to give, but it took 30 minutes to calm Lainey afterwards! I wrote in an earlier post that each shot costs about $2300...well I was wrong! With the nurse, her travel time and mileage, the medication, the digital scale, and other supplies, each injection costs almost $4900! Now I have a better understanding of the reasons we had to fight with the insurance company to get these shots approved. My dad warned me that girls cost a lot of money, but Lainey is taking it to a new level!!


Logan went to the doctor on Tuesday because his fever and headache from Friday was still lingering! Just what I thought would happen..."We will continue to watch and treat the symptoms," says the doctor. He finally began feeling well enough to go to school today! For Logan's sake, I hope he is well for at least a week. I am glad he is feeling better because the Lucky Duck is leaving on Friday after school to go to Athens with Gigi and Papa. They are going to tailgate and then he gets to go into the Georgia vs. Vanderbilt game! According to Logan, "This is what I have dreaming about for 50 years! Plus I have to get a picture of Uga the dog for my teacher, Mrs. Wood."

Sid and I went on a date last Saturday for the first time in forever! Sid's mom watched the children while we went to see the movie "Fireproof." What a wonderful movie for all married couples! We highly recommend going to see it.

I am hoping that next week is less eventful than the current week. We will have one less kid this weekend since Logan will be at "the Georgia" with Gigi and Papa, I am going to a baby shower honoring my sister on Sunday, and then taking the kids to Trunk-or-Treat at the church. Look next week for some pictures of the kids in their Halloween costumes! Thanks again for your prayers this week and always. It is great to have a positive update to post.

Much Love,

The Smithsons

CF Kisses

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

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

Lainey and Doctor Caplan

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

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

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

Much Love from our family to yours,

The Smithsons

Growing

Today we went to the Cystic Fibrosis Center for Lainey's 3rd visit. Since this time last month Lainey has grown 1/2 inch and gained 1 1/2 pounds. She is now 23 1/2 inches long and 10 lbs. 15.9 oz! Still not the 3 lbs. they had wanted to see (she is still in the 10th percentile for weight), but we are working on that. Due to the frequency and consistancy of her bowel movements, it has been concluded that changes with her enzymes need to be made if we wish to see an increase in weight. To assist in weight gain, Dr. Caplan decided to try upping her enzymes to 2 per meal and taken in applesauce. Originally we tried the applesauce, but it was way too difficult to feed it to a newborn. Now she is loving the addition of applesauce and doesn't seem to mind the new requirement! The thoughts behind the applesauce are that the enzymes will make it to the small intestine before the formula. This is important because the enzymes aid in digestion, fat and vitiamin absorption, and in the end ~ weight gain. If after a week of using this new regimine we don't see any changes in the number of bowel movements she has per day (4 or less), we will then change to another brand of enyzmes. As we have learned, this is a trial and error situation. Every person with CF is different and their body's needs are constantly changing.
As for Lainey's lungs, all is clear. We have been worried about her lately with her sinus drainage, cough, sneezing, and stuffy nose. Thanks to the antibiotics and chest physical therapy, Dr. Caplan was happy to report that all sounded nornmal in her little chest. We will be working very hard in the following months through the cold and flu season to keep the germs away. These will be challenging months, especially with myself working with 20 first graders, Logan in school, Liam in daycare, and Sid working in the ICU. Hopefully we can keep any and all illnesses to ourselves! To aid in her protection against RSV, Lainey will begin taking Synagis. This is very expensive and will take from September to April for Lainey to receive the entire dose. A nurse will come to the house once a month to give Lainey her shot. We will have to weigh her on a digital baby scale (they will provide) and call in her weight to assure she receives the appropriate dosage. Thank goodness for insurance!
Overall, today's visit was great. She is continuing to grow, have good chest sounds, and most importantly, she seems completely content with everything! The doctor did send CF testing kits home for us to collect cell samples from Logan and Liam. We are not sure how long it takes to receive the results, but we will keep everyone posted. I will be tested at Lainey's next visit. On September 17, both Gigi (my mom for those of you who do not know that Gigi is her name to Logan, Liam, Lainey, all of their friends, as well as their teachers) and Lainey have appointments in the same area. We will go to mom's cardiologist at Emory first and then to Lainey's CF appointment.
Thank you for all of the encouraging words, thoughts, and prayers. Please help us pray for good health and an uneventful winter in relation to Lainey's CF progression. We are lucky to have such wonderful friends and family, for they are the ones that keep us strong! Thanks to my parents, Lainey will have a more protected winter by staying at their house.

Lainey's 2nd CF appointment

Hello. Yesterday Lainey (8 weeks old) had several doctor appointments and I am happy to report that she is doing awesome! Our first appointment was with the surgeon. After looking a her incision (from surgery when she was 5 days old) and the site where the t-tube entered her colon, Lainey was given a thumbs up! No more visiting the surgeon unless she were to need future surgeries! Our second appointment was with her team at the Cystic Fibrosis Center. Her team consists of a nurse, respiratory therapist, social worker, dietitian, and doctor. Lainey weighed in at 9 lbs. 6.7 oz! This was a gain of almost one and one half pounds in 3 weeks!! She also grew another 2 inches to make her 23 inches long! Her weight has been a huge concern of ours, thus putting most of our effort into fattening her up! The more weight she gains her first three years of life, determines how well she will do as she progresses in her disease. The team would still like to see her gain 3 pounds per month, but they were satisfied with what she gave them this time! To assist in gaining weight, her enzyme intake has increased to one and one half capsule per feeding. Since the capsules assist in food absorption, they are hoping this will help her to gain even more weight. Anemia is also a concern with Cystic Fibrosis. Since she has been whiter than me (that is hard to believe) indicating low iron levels, her iron intake has also increased. Aside from learning how to perform chest physical therapy for preventative measures, her lungs sounded great! For now, and hopefully forever, her Cystic Fibrosis is only effecting her digestive system. Although she will be on enzymes for the rest of her life, we are hoping to prevent any and all respiratory infections that might reduce her lung function. With the new school year quickly approaching, please pray for my parents as they will be caring for Lainey. Since even the smallest cold could send Lainey to the hospital for a couple of weeks, the doctor strongly suggests keeping her out of daycare for at least one year! Taking care of Lainey will be a big job for my mother since she is in poor health. It will also keep my parents from traveling; something they have enjoyed since dad retired last August. We are fortunate to have them care for Lainey. She is guaranteed to be spoiled rotten at the end of each day! Thank you to everyone for your thoughts, prayers, words of encouragement, and gifts. To learn more about Cystic Fibrosis and how to help find a cure, check out the Cystic Fibrosis Foundation web site at www.cff.org .
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey

Lainey's 1st CF appointment

Today Lainey, Sid, and I went to the Cystic Fibrosis Center at Egleston for Lainey's first CF appointment. Everyone at the center is so very nice and welcoming. We met a few of the people that are par of Lainey's CF Care Team ~ the respiratory therapist, dietician/nutritionist, nurse, case manager, and her primary doctor. Sid and I learned how to perform clapping exercises on Lainey's chest and back in order to break up any mucus in her lungs, used now for preventative measures only. She was weighed in at 8 lbs. 1 1/2 oz. This was a gain of 1 1/2 oz. in 6 days. Not too bad, but we still have to catch up for lost time, therefore we have to pack in more calories! She is now 21 inches long...tall and skinny...she can't possibly be related to us!!! :) The dietitian wants to see her gain at least 3 pounds per month in order to catch up to her height/ weight ratio. She is currently in the 10th percentile for her weight and 50th for her height. It is important that she gains weight, possibly is even chunky for the first 3 years of her life. The more she grows, the better functioning of her lungs. How well she thrives until her 3rd birthday will directly effect her health for the rest of her life. In addition to the extra calories we will be adding to her breast milk bottles, she will also receive 1/8th of a teaspoon of salt. People with CF tend to lose salt through their sweat, therefore it must be replenished through their food. Dr. Caplan, Lainey's CF doctor said that she looked well and checked out to be very healthy! He performed a throat culture to check for any infections that may be brewing. They like to catch anything before it sets up in her lungs. He also collected a stool sample to check for fats. If there are too many fats in her stool, then she will need to go up on the amount of enzymes she takes at each feeding. The enzymes help in fat and vitamin absorption. Lainey also qualifies for free enzymes and vitamins with enzymes until she is 3 years old! This helps a tremendous amount...about $2,000 we will not have to pay out of pocket for these two medications!! Some of the best news of all is that Dr. Caplan said it was okay to take her to the beach on vacation!!! We are so excited that we will all be able to get away for some family time at the beach for a week! Thanks again for continuing to pray for our family. Now we need prayers for weight gain and no harmful bacteria lingering in Lainey's little chest!
Lots of Love,
DeAnn, Sid, Logan, Liam, and Lainey