Still seeing YELLOW!

On Friday, Lainey and I headed to Atlanta for her monthly CF appointment. We dropped Logan off at school, Liam off at the daycare, and off we went! I was sure it would be awful trying to get through rush hour traffic in Atlanta, but we made it in less than an hour! I think it was a record breaking drive....first of all I drove all of the way through Atlanta traffic by myself!! I hate driving in Atlanta and even more so in Atlanta traffic at rush hour! Secondly, I made record breaking time driving through rush hour at 7:45! Lastly, Lainey did not make a sound all of the way there! The music was turned up, I was eating breakfast and driving, while Lainey was napping. A perfect drive.....my knuckles were not even white when we got to the Target parking lot! Yes Target......Lainey's appointment was scheduled for 10:00 and we were only 3 miles from the CF Center at 8:15! Lainey and I did some shopping in Target before going to her appointment. I love Target's Clearance way too much!

Well, yellow seems to be Lainey's Zone. The yellow zone means she is at risk and her weight needs to be monitored closely. She only gained 6 ounces and did not get any taller. She now weighs 18 lbs. 12.1 oz and is still 28 1/4 inches long. All she needed to gain was 1 pound and she would have been in green....barely, but she would have been there! Lainey's goal weight for next month's appointment is 19 lbs. 4 oz and to keep a pace of gaining one and a half pounds per month. Lainey's lungs sounded awesome! Although she was screaming like no body's business while the doctor was checking her ears, nose, eyes, and throat, he assured me that her crying was also part of his assessment. He said that if someone with CF can cry as hard as she was without coughing, then they have very little mucous in their lungs! Wow, that is a great feeling!

Lainey preparing herself for her future profession!

Although everything checked out fine at this appointment, Dr. Caplan expressed his concern for the amount of fat in Lainey's last stool sample. He has now upped her pancreatic enzymes from 1 Ultrase MT18, to 1 Ultrase MT18 and 1 Ultrase (plain). As soon as it arrives in the mail, Lainey will also be adding ScandiCal to her diet. ScandiCal is a tasteless powder to sprinkle over food to add calories. Hopefully these changes will help Lainey to gain weight.

Yes.....Lainey is chewing on a stool sample container! No....there is no stool in it! No matter how many toys I pulled out of her bag, this is the one thing she threw a fit to have!

I often feel like I answer the question, "How is Lainey doing?" with the same answer. "She is doing well. We are always trying to get her weight up and keep her from getting sick." I usually get the response, "Well, she looks great! She weighs more than my kids did...she looks big to me...." Unless you have a child with CF, it IS hard to see why we are working so very hard to get Lainey to the 50th percentile. The bigger the better, for a child with CF. Our doctor tells us that he would like Lainey to be a little on the chunky side. The bigger she is, the more room her lungs have to grow. Being bigger also makes her heart and lungs work harder, thus making them stronger. The first three years of her life will give us an idea of how CF will effect her health in the future. Yes she does look big...her height is in the 85th percentile, her head is in the 95th percentile, and her belly is usually distended.....with that, it is easy to look past her skinny arms, legs, and booty! Yes she does look good and if I saw her with other children, I would think she was just as healthy as the kid next to her. If only more people were aware of Cystic Fibrosis!

Just look at those lashes!

With this frustration came a call from the Cystic Fibrosis Foundation. I spoke with Sara whom is in charge of the Great Strides Walk in Atlanta and Athens. With her help I will begin a team for the October 17th walk in Athens, Georgia. Living in Gainesville all of my life and knowing a ton of people between my parents, my sister, my husband, and I, I am hoping for a huge response. Thankfully we have many connections in Gainesville, one being that of a friend, Joel, who works for a local talk radio station. With his gracious offer to help in any way, I am sure we will be able to reach even more people. My only concern is, How will I have time to raise money and start a team with everything I have going on? Well, I manage to make things happen that I never imagined I could do so I am planning on adding this to my list! If you have any ideas, suggestions, etc. on how to organize and raise money for such a worthy cause, please share your wisdom!

The doctor is much more interesting than mommy!

Finally Gigi and Papa are home! Last week was "awful" for Logan since they were not in town! Because of their "mini vacation", we needed to find someone to take care of Lainey while I worked and Sid finished this quarter's finals. A HUGE thanks goes out to Mrs. Martha for taking care of our Lainey Bug! Mrs. Martha is only the second "non-family" member to watch Lainey for us. We are quite particular is who watches her for fear the person will not understand the importance of her health requirements. We invest a lot in her health and we hope any caregiver of hers will do the same, although we know that is hard to find. Mrs. Martha was awesome and Lainey was comfortable with her new arrangements in no time! Mrs. Martha.....ANYTHING you need monogrammed, it is yours.....just let me know and it is done!!! Thank you so much for caring for Lainey this past week.

"Thank you Mrs. Martha!"

Tomorrow Lainey will be going to an appointment with an occupational therapist. This will be her first therapy since she was in the hospital at birth and it is offered by our local agency, "Babies Can't Wait". I am very interested to see what they will be working on with Lainey. I will update later on her therapy. Until then, I have posted a "big girl" picture of Lainey below!

Lainey's 10 month picture! This is the outfit she got from The Children's Place for having a good doctor's appointment!

Thank you for all of the prayers this past week! My parents are back safely from their trip, Sid finished his 3rd quarter of nursing school with awesome grades, we had a good doctor's appointment, and I drove in Atlanta!!! We feel all of the prayers daily and are forever grateful for our family and friends! Have a great week!

DeAnn

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

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 .

6th Month Amazement

There aren't any HumBUGS here!

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

The Christmas Bug!

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

Lainey and Mommy checking out the tree!

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

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

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

Love Always,

The Smithsons

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

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

Doctor Visits!!!!!....and new pictures!

More illness at our house! Logan was out of school on Friday and Liam should have been....but who wants to take care of a 2 year old that doesn't slow down when he is sick....even when given medication that causes drowsiness?! After convincing the kids into going through the doors of the doctors office (they remembered the blood test for Cystic Fibrosis and didn't even want to go in), we soon found out that Logan had Strep Throat and Liam had Bronchitis! Two co pays and two prescriptions later, we were headed home for a weekend of recuperation.

It is amazing how hard it is to keep the baby away from the boys and even more difficult to keep the boys away from the baby!! Every few minutes Logan wanted to know if it was okay to kiss the baby, since he was feeling better! After a Saturday of not feeling well myself, being home with 3 kids while Sid was working, nursing two sick boys back to health, cleaning the house, cleaning out closets, doing laundry, and watching Georgia "blackout" during the game...I was wishing I hadn't taken the boys to the doctor(or watched the game)!! They were more than feeling better with just one dose of antibiotics and I was worn out!! Whoever had the wonderful idea of making Saturday "Go outside and Play" day on the cartoon station, did not have the moms' of sick children in mind! Although I was feeling better on Sunday, our day was just as crazy...but I managed to take a few pictures of Lainey!

"I hope those boys don't give me what they have!"

On Monday we went to the pediatrician for Lainey's 4 month check-up. She did not have Strep Throat, but her throat was red!! We are praying that red is all she has in her throat...no germs! She weighed 12 pounds 13 ounces...that is a gain of 10.5 ounces in 13 days!! YEA!! Lainey was not very happy to have Dr. Onal checking her out...especially when he was pushing on her belly. She showed him by dirtying her diaper before he was able to check that area! Although we have seen her reach milestones quicker than Logan and even faster than Liam could have ever imagined, she refused to show Dr. Onal! She didn't want to hold her head up, roll over, be on her stomach, "talk," or grab on to his fingers! Mom and I were bummed out that she was not showing off (which is a Smithson trait), but we know what she can do and that is what counts!! After much reading and research, Dr. Onal decided it was safe...or at least that the benefits outweigh the risks...for Lainey to receive the Rotovirus orally. She did not get the first dosage at 2 months due to the precautions...DO NOT take if you have had a blood transfusion (Lainey had one at 6 days old), if you have had bowel obstructions (Lainey had for her first 5 days of life and then some), if you have had bowel surgery (Lainey had at 5 days old), and if you have digestion issues (Lainey's everyday issue). With all of these precautions, it is easily understood why we had an issue giving her the oral vaccine! Dr. Onal did a lot of reading and research, received a thumbs up from Dr. Caplan (the CF doctor), and I said I was comfortable with it, therefore she received her first Rotovirus dosage out of 3. So far, so good. No issues related to the vaccine that we have noticed. She has been running a fever, but we are contributing that to the other 4 vaccines she received! Overall, her visit was very good. Dr. Onal was happy with her progress and her unchanged status of health related to the Cystic Fibrosis. Two hours later, we were all happy...because we were finally getting out of the office!

Lainey liking the view from her Bumbo!

Today at 3:30 I will be having a MRI brain scan. The endocrinologist wants to check for any tumors in the pituitary gland. In addition to the MRI, she also had blood drawn for 15 different tests (one being pregnancy, so I know the answer is "not" an issue, but I am worried about the other 14). I should know results from the MRI and the blood work by the end of the week, or the beginning of next week. For my family's sake, I hope nothing is wrong with me! I think I could handle it personally, but if someone had to take over my responsibilities, I don't know what I would do! On that note, I think I will start a manual to surviving at the Smithson household! :)

Please keep all of us in your prayers! We need good health for everyone and bad germs out of our house! Thank you for everything ~ we count on your thoughts and prayer more than you will ever know!

Much Love,

The Smithsons

"Sitting up is way cooler than always lying down!"



Lainey and Logan watching cartoons!

Mommy's Love Bug!

Have you ever seen a "Naked Bug?" Well, now you have! If you look closely...I mean get real close...you can see her scars from the surgery and t-tube. The scar from the surgery is about an inch above her belly button, about 2 inches long, and parallel to the top of her diaper. The t-tube scar is next to her thumb nail! The doctors did an awesome job, didn't they?!

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

Relief!

This week has been wild! Saturday Lainey went tailgating for the first time at the Georgia game. She stayed in Gigi and Papa's motor home due to the heat, but didn't miss a thing. She watched everyone and everything going on around her! We had a blast.

On Monday we received a letter and a card stating Lainey's approval for Medicaid through the Katie Beckett/Deeming Wavier. Lainey's Medicaid goes back to the day she was born, meaning every one of her bills is being covered 100%. This is such a relief since she accumulated a number of bills being in the hospital for 29 days. In addition, when receiving Medicaid, you automatically qualify for WIC. After 2 hours of sitting in the local Health Department with some of the children that attend Fair Street School where I work, we received numerous vouchers that are good until November. Each month we will be able to get 8 cans of Alimentum formula. This is approximately $250.00 worth of formula! Since I am a post-partum mom, I receive a box of cereal, 4 bottles of juice, one dozen eggs, 3 gallons of milk, and 2 pounds of cheese each month until Lainey is 6 months old. She will continue to get WIC vouchers until she is 5 as long as we continue to receive Medicaid. This is this answer to many of my prayers!

Along with all of the other wild things going on this week, we have changed Lainey's enzymes again. Now she is taking 2 Ultrase enzymes before each meal. I am not so sure they are any better than what she was on before, but we are willing to try anything to make our princess's life better! It seems as though she is having more bowel movements than before. With each bowel movement, her little bottom gets more raw and bleeds. We have been through more tubes of "butt cream" than we can count! After running out of samples of Ultrase given to us by Lainey's CF doctor, we picked some up at the pharmacy.....and this is where additional WILD things occurred! Somehow the pharmacist misunderstood the doctor when he called in the prescription. The prescription I picked up was Ultrase, but not the dosage she had been taking. Ultrase MT 12 was filled for Lainey. Not paying much attention, I picked up the enzymes from the pharmacy and packed them in Lainey's luggage for her trip with Gigi and Papa. After using the new enzymes for a day, my mom made me aware of the numerous differences in the new prescription when compared to the samples given to us by the doctor. After researching the different types of Ultrase enzymes via the internet, Sid and I realized a major difference. We advised mom to cease the new prescription and continue using the samples. On Thursday I confirmed our concerns with Dr. Caplan. Although he called in a specific prescription, the pharmacist filled it with a similar, yet stronger dosage than prescribed. We were giving Lainey 2 capsules of the new prescription, which gave her 15,000 more units of the active ingredient than needed for someone her size! No wonder mom hadn't changed any poopy diapers! Her doctor said that she was absorbing fat like we want, but the new prescription was also causing her to absorb her own waste! NOT COOL! We are thankful that mom caught this when she did or we could have one sick little girl on our hands. Currently we are still working with the pharmacy to "fix" this mix-up. This has definitely taught me to check all of her medications very carefully before administering them.

This weekend will continue our WILD week as we have been cleaning and preparing our house for Dayna's baby shower on Sunday. Knowing that I am beat when I get home and that I have the kids all day by myself on the weekends, my mother-in-law hired a maid to clean my house! This was an awesome surprise and my house is happy to have had a deep cleaning! In addition to the cleaning, Sid and his mother worked hard to make our yard look beautiful. I find it humorous to know that now I would rather have my house cleaned than go shopping for new clothes!!!

Thursday the boys underwent their Cystic Fibrosis tests. WOW! It took 4 adults to hold Logan down long enough to get 3 vials of blood. Liam was upset for a few seconds and then all was cool! I'm not sure he feels pain! :) It is recommended that siblings of children with Cystic Fibrosis are also tested. Hopefully we will have good news ~ neither boy has Cystic Fibrosis. The test will not only let us know if either boy has Cystic Fibrosis, but will alert us if they are carriers of the Cystic Fibrosis gene mutations effecting Lainey. We should have their results within the next couple of weeks.

Today I received my Cystic Fibrosis test results for last Thursday's test. The results confirmed my contribution of the delta F508 gene. This is the gene all Cystic Fibrosis patients carry. The mutation of the gene can also be another delta F508 or one of the other 1500 + mutations. Since Lainey has one delta F508 and one R560T mutation, we now know that Sid is the carrier of the "odd" mutation. I think we should have known that Sid would have been the one with the "odd" mutation!! The purpose of my being tested was solely for determining which of us carried which gene. In addition to finding out this information, I also learned that my prolactin level is high. My doctor is sending me to an endocrinologist for further testing. I am hoping this helps in finding the cause behind losing my hair, lactating, and several other odd symptoms I have had for a while.

On Wednesday Lainey's has an appointment at the Cystic Fibrosis Center. We are praying that she weighs at least 13 pounds and that her lungs are clear of bacteria. This would be a gain of 2 1/2 pounds. She is really growing in length, but is still skinny! She is finally wearing 0 to 3 month clothes ~ and she will be 4 months old on Saturday the 20th!

Sunday, September 21st is Lainey's Baptism. We are inviting all friends and family who wish to attend to join us at 10:55 am in the Sanctuary of Gainesville First United Methodist Church.

Thank you for all of your prayers! Please continue to pray for us as we receive news on the boys' Cystic Fibrosis test results and in Lainey's appointment at the Cystic Fibrosis Center.

DeAnn

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.

Sinuses

Hello! The Smithson household is under the weather with sinus drainage, headaches, and sore throats! Lainey began having a runny nose and a cough on Wednesday, several days after Liam and I began with the same symptoms. After speaking to Dr. Caplan, he was comfortable with placing her on an antibiotic and seeing her on Monday (we already had her monthly CF visit scheduled for Monday). We have also stepped up the chest physical therapy; spraying Ayr Mist in each nostril and performing percussions on her lungs several times a day. Since beginning the antibiotic on Thursday, she seems to feel better and definitely sounds better! Only 7 days into the school year and we already have runny noses. Hopefully this is all we will bring home from our days in the elementary schools, daycare, and hospital.
As I mentioned before, we are going to Lainey's monthly visit at the CF Center on Monday. Although she is still wearing newborn clothes, we are praying that her weight is at least 2 pounds heavier than last month. 11 1/2 pounds is what I am hoping for...more would be awesome! I will update after our visit on Monday!

Gaining Weight!!

Today Lainey went to her pediatrician for her 2 month check up. She is doing well in all areas, especially growing! She has gained almost 1 pound in 2 weeks! This is awesome for her since people with Cystic Fibrosis have difficulty gaining weight. She is now weighing 10 lbs. 5 1/2 oz. and is 23 1/4 inches long! She is right on target for her development as well. She is lifting her head and trying to turn over! She has been smiling for a couple of weeks and last week she began cooing! Thank you for all of your prayers. They have helped her as well as our family in so many ways. We will be going back to the Cystic Fibrosis Center on August 18 for another check up. Please pray that Lainey has grown by atleast another pound and that she is free of any infections!

Sincerely,

DeAnn, Sid, Logan, Liam, and Lainey

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

Vacation

Hello! It has been a while since I have updated everyone on Lainey and her progress. We had a wonderful vacation at Flagler Beach just north of Daytona. The five of us spent 9 days in our camper just yards from the beach. We are so lucky to have an awesome family with whom we spent our vacation. My parents, grandparents, three uncles and their families, my sister and brother-in-law, and his family were all together for vacation. The boys absolutely had a blast on the beach! Before we arrived, they had already been at the beach for a week with my parents. Tough on my parents, nice for Sid, Lainey, and I getting to know each other. It was a much needed break from the hospital, doctors visits, and stress of the past month! We came back last Saturday, but our 8 hour trip turned into a two day 12 hour trip! Traveling with 3 kids under four years old, 2 in diapers, 1 that likes to check out every bathroom, and all three that like to eat ~ it was interesting to say the least! Sid began nursing school this week and boy what a transition for all of us! He is in school 4 days a week, then works 12 hour shifts in ICU at NGMC the other 3 days in the week! Our time with him is limited, therefore we cherish every minute...and will until he is finished with school in 2 years!
Lainey gained half a pound while we were on vacation (this is what happens when you hang out with my mom...she likes to feed anyone that will eat!) The doctor has decided that she gains weight better when she is taking only formula, therefore the breast feeding has ceased. I wasn't opposed to that, but the formula is $26 a can and the can lasts for 4 days!! YIKES! We are fortunate to have a very knowledgeable case manager at the Cystic Fibrosis Center. She has helped us to apply for several grants, waivers, and government assistance programs in ways that income is not the deciding factor in obtaining assistance, but is based on the disability and it's longevity. Since Cystic Fibrosis is a lifelong disease that requires many hospitalizations, medications, breathing treatments, possible organ transplants, and leads to premature death (median age of survival is 37 years old), we are confident that we will qualify for much needed assistance in paying hospital bills, doctor bills, co-pays, deductibles, and medications.
Next week will bring new information with the two doctor visits we have scheduled. We are first meeting with her surgeon for a checkup, then we will go to the Cystic Fibrosis Center for her monthly checkup and physical. We are praying that she will be at least 9 lbs. when we go for her visit on Wednesday. The doctors want her to gain 3 lbs. per month, but we will be happy if this month brings us at least 1 pound! We will let you know what the doctors think of her progress after her visit next week. It is amazing how healthy she looks, yet knowing what she is dealing with physically is heart breaking. Please continue to pray for her good health and strength for our family. Thank you for all of the wonderful meals, cards, gifts, and comforting words. We are eternally grateful.
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey Smithson

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

4 weeks old

Hello! Well....Lainey is still in the hospital at Egleston. &Today she turned 4 weeks old and has been in the NICU at Egleston for 24 days. We are not exactly sure when she will be coming home. A few factors have been keeping her there, such as the t-tube (in her intestines), feedings, weight gain, enzymes, and stools. Today they took her t-tube out, so we are grateful to have one less thing on our list that is keeping her there! Since people with Cystic Fibrosis have a difficult time gaining weight, the doctors are fortifying the breast milk she is drinking. On Friday she had 30+ stools indicating a problem with either her milk, her enzymes, or both. After several stool samples the doctors have decided to go from one capsule of enzymes at each feeding to one half at each feeding. They have also changed her formula fortifier to a more sensitive formula that they are adding to the breast milk. Although she is eating well, she is losing most of it due to the high number of loose stools she is having each day. Hopefully this change in the enzymes and fortifier will do the trick. Once her stools and weight gain are normal, she will get to go home. We have given up on asking when they anticipate her going home ~ they will no longer tell us when, rather they say it is up to Lainey! Please continue to pray! We need prayer for regular stools, finding the correct formula fortifier to create regular stools, determining the correct amount of enzymes at each feeding, and WEIGHT GAIN!!! For all of you trying to lose weight, just send it to her!!! Thanks again for everything you have done. We are hoping to have our princess home soon.
Love,
DeAnn, Sid, Logan, Liam, and Lainey Smithson

Enzymes

Here is the newest update on Lainey. Today Lainey is 3 weeks and 1 day old. She is up to 7 lbs. 12 oz. (she weighed 7 lbs. 3 oz. at birth, and 6 lbs. 12 oz. when we arrived at Egleston). Today the doctors took out the PICC line in her arm, ending her lipids (fats) IV and clear fluids. They also quit the irrigation into her bowels and clamped off the t-tube. They haven't removed the t-tube in case she has any more issues going to the bathroom in the next couple of days. She is up to eating a little over 2 oz. of breast milk with powdered formula added to increase her calorie count. People with Cystic Fibrosis usually have great difficulty gaining weight, therefore the doctors want to add as many calories as possible to her diet. In speaking with the Cystic Fibrosis doctor, we have learned a lot about what the future will and may bring for Lainey and our family. She will have an appointment each month with the Cystic Fibrosis Center. Her doctor is very curious and eager to learn more about her stands of Cystic Fibrosis. People with CF are born with the delta F508 strand and another mutation of the 7th chromosome. Approximately 66% of people born with CF have 2 strands of delta F508. This is one of the worst cases of CF, causing digestive and respiratory problems and eventually causing death from numerous infections in the lungs. For the other 34% of people with Cystic Fibrosis, they have delta F508 and one of the other 1500 + mutations of the 7th chromosome. Lainey has delta F508 and R560T. Her doctor at the CF center looked through the Georgia data base on known CF patients and she is the only patient that has the combination of delta F508 and R560T!! She is also gaining weight...another plus for people with CF, whom usually suffer from "failure to thrive". She is definitely testing the doctor's knowledge and curiosity, as she is unlike any case he has ever had! She also hasn't had any respiratory problems! After performing several tests on her stool, the doctor found from one test that she has too many fats in her stool. These fats are usually absorbed by the body in people that do not have CF. Since she has too many fats, the doctor has decided to put her on enzymes. Starting yesterday and for the rest of her life, Lainey will need to take enzymes before each meal or snack in order to properly digest her food. This has been difficult since newborns can't swallow capsules! Before each feeding I have to break open the enzyme capsule, put the enzyme beads in applesauce, and finger feed the applesauce and enzymes to her!! This takes forever, but I am sure she will catch on soon! Originally we thought she might go home this Friday, but the doctors are saying that it may be Monday or Tuesday of next week. We are just ready to bring our "Lainey Bug" home!! Hopefully she will soon get to meet all of the people who have been helping to bring her home through all of their words of encouragement, thoughts, prayers, and support. We also appreciate all of the people that have called and taken care of my parents (Dwight and Diane Schwartz) with meals and in helping with our boys! Thank you all!
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey Smithson