Lainey's Baptism

Today, Sunday, September 21, 2008, Lainey was baptized at Gainesville First United Methodist Church. Lainey wanted to make sure that everyone in the sanctuary knew she was there, so she fussed for 20 minutes until her debut! We're not sure what the preacher did, but now we know who to find when Lainey is fussy. As soon as I handed her to Dr. Walton, she calmed down!

Today's sermon was perfect! "What's That to You?" was the title of Dr. Terry Walton's sermon. In today's world so many of us get "hung" up on why things had to happen to us ~ not others. Life's unfairnesses can build bitterness within, leaving doubt in God's choices. In all honesty, I still have some of these feelings. Why does Lainey have to go through so much? Why did it have to be our baby? With all of the babies being born, why did God choose our baby to suffer from Cystic Fibrosis? Why, Why, Why? After listening to Dr. Walton, it all seems a little clearer. The word of God, "What's That to You?" Mathew 20:1-16. Don't question God's motives. He is working through us. Don't compare your treatment from God to another's. Don't ask why you and not someone else, rather be happy for the others whom have the things you desire. Be happy that you can help God share his word through your life. I plan on keeping God's words fresh in my mind and heart. Although we have and will continue to fight battles with Lainey's disease, these words will help us remember "Why." Hopefully our knowledge and experiences can and will benefit others. In the most challenging of times, I know this will be difficult, but ultimately everything is in His hands. Please pray that We have the strength to follow His word and allow Him to work through our family.

Thank you to all of our friends and family who attended this memorable day in our lives. Lainey, as well as the rest of us, have a wonderful support group. Gigi, Papa, Grandma Barbara, Papa Dan, Aunt Dayna, Grandma Carolyn, Aunt Ashley, Mason, Cindy, Sean, Dawson, and Kaylah ~ We love you and appreciate EVERYTHING you have done for us!

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

Lainey's Baptism and other GOOD news!

Life at the Smithson house has been wild! Logan has started pre-k at Enota Multiple Intelligences Academy, Liam continues to keep the daycare workers on their toes at the Wee Elephants Daycare for Gainesville City Employees, and Lainey is having the time of her life hanging with Gigi and Papa every day! Sid is in school 4 days a week and works 12 hour shifts the other 3 days, yet manages to make A's and B's in his classes!! He is going to be an awesome Nurse....one day! I am spending everyday with kids, kids, and MORE kids! After dropping off my own three kids each morning, I go to work to teach 20 first graders! Although the weekends are long and often quite stressful, I am beginning to take on the challenge of caring for 3 children on my own with a little "risk-taking!" For all who know my need for organization, mess-free environments, and scheduling, I am proud to announce that I, DeAnn Smithson, let my kids play with Play Dough this past weekend! They could not mix the colors, but they didn't care because mom was actually letting them play with something that might potentially cause a huge mess (not to mention Liam might make it a new meal!) As Logan would quote the chunky boy on the AIG commercial...."Things are looking up!"

Lainey is being Baptized and we are happy to invite anyone whom would like to attend! Lainey will be Baptized on Sunday, September 21, 2008. The church service is at Gainesville First United Methodist Church and begins at 10:55 am. Our preacher, Dr. Terry Walton, will be performing his non-traditional, yet overwhelmingly personal baptism. He has his traditions of lighting a candle to show the baby the "light of the World," taking the baby around the congregation for each to greet her with a smile and a touch, and giving the baby a taste of salt to experience the "salt of the Earth." Lainey is sure to enjoy and benefit from the extra salt offered by Dr. Walton! Sid and I are thrilled to profess our faith and promise to raise Lainey in a Christian home. For it is this faith that has pulled us through the tough times, given us the strength to persevere, and filled us with the wisdom we need in order to follow God's intentions. We would be honored to share this special day with all of our friends and family.

Good News! Our family has been approved for the Katie Beckett/Deeming Waiver. This waiver is designed for families with children with special needs whom do not qualify for Government assistance due to income. Through this waiver we qualify for WIC and Medicaid. WIC will take away the burden of paying $26 every four days for formula by giving us vouchers to use as our method of payment. Medicaid will cover all of Lainey's hospital, doctor, and pharmacy bills that are not covered by insurance. This is HUGE! The copay paid each time we take her to the doctor (usually twice a month), the 10% of hospital stays not covered by insurance, the $25 for each of her 4-5 prescriptions per month, as well as any other equipment we may need, will be completely consumed by Medicaid! We feel like an enormous weight has been lifted from our shoulders, and for this we are thankful.

Although we have changed brands of enzymes several times in the past 3 weeks, we now feel as though we have found the culprit of Lainey's recent issues. Lately she has had a lot of gas, stomach aches, spitting up, fatty stools, and small amounts of weight gain. In conversations with Lainey's dietitian, by accident (although good), we found our mistake. Sid and I watched the nurses in the hospital crush Lainey's Prevacid tablet before feeding it to her. After a little research, it was determined that crushing the tablets deactivated the antacid, thus no help to Lainey at all! Now she is taking 1 Prevacid capsule twice a day along with her Creon. We mix the beads with applesauce and serve it all at once. It has been amazing how settled her stomach sounds, the fewer number of stools per day, little to no spitting up, and an overall happy baby we have! It is our hope that through these changes, we will see a greater weight gain at her next Cystic Fibrosis appointment on September 17th!

Thank you for following Lainey's progress. We are fortunate to have such a sound and supportive group of people in our lives. Lainey has finally had the chance to be held by Sid's dad, Papa Noel...and boy did she like it! Her grandma Barbara and Gigi have been spoiling her with all of the cute things the stores have to offer little girls! Papa Dwight and his ticking valve put her to sleep in no time. Although Papa Dan isn't as comfortable taking care of babies, he has given Lainey and I time to bond by taking Logan and Liam out on the lake and to the pool. For an extra set of hands on the occasional weekend, Grandma Carolyn and Papa David have been here! PLEASE come to visit Lainey if you want....soon we will have to limit visitors due to the "wintertime bugs!"

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

Lainey is HOME!!!

Thank you for all of your prayers...God told the doctor to let her come home!!! It was a huge surprise when my mom, mother-in-law, and I arrived at Egleston this morning with a cooler FULL of breast milk (the night nurse said they needed more) and we were told that Lainey was going home!!! I know the doctor did not make the decision to send her home on her own...it had to be God being pressured by everyone's prayers! Since this was an unexpected turn of events, we did not have her car seat, diaper bag, going home outfit, or her dad. Discharging from the hospital tends to take forever, therefore Sid was able to drop our boys off with Papa and head down to Egleston to pick up his girls! After several pages of instructions, 4 prescriptions, 3 doctors appointments, and visits from 6 different people who have taken care of Lainey with instructions of their own, at 4:00 we were finally walking out the NICU doors ~ Lainey's home for the past 25 days! Although getting home was rough due to the traffic and not one pharmacy in Gainesville having the enzymes she needs before each meal due to her Cystic Fibrosis ~ we finally made it! We know it won't be easy with the many trips to the doctors at Egleston as well as to the pharmacy for the 240 enzymes pills she needs each month, but we are thrilled to be home ~ all 5 of us! Thanks again for all of your thoughts and prayers. Please keep them coming ~ Lainey's Cystic Fibrosis is a lifelong disease. We would love for everyone to meet her, so look for us out and about in town, or give us a call and come visit!
Sincerely,
DeAnn, Sid, Logan, Liam, and LAINEY Smithson

P.S. Lainey will already be a month old on Friday ~ times flies even when you are not having fun!!

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

Bad News

Hello! I am sorry that I haven't posted an update in a while. My parents have been an awesome help! They spent the $4.75 a gallon on diesel and took the kids and I to Stone Mountain for the week in their motor home. Stone Mountain camp grounds is about 10 minutes away from Egleston ~ much better than the hour plus ride from Gainesville! Being there gave my boys the opportunity to play and have a "mini vacation,"while I was able to spend more time with Lainey. On Monday they began feeding her 5ccs of milk. They also moved her to her own room in the NICU. Having your own room is the last place to move before going home! They have increased her feedings each day, every 3 hours. She has been very sleepy and not waking to feed, thus much encouragement has been needed! The fear of her having a feeding tube has made us pressure her to EAT! Last night was the first night she ate voluntarily, we think because they lowered the amount of IV nutrition she is receiving (and the pressure from us!) We did learn yesterday morning that Lainey does have Cystic Fibrosis. We don't know much about the illness, but we will soon have an appointment with the Cystic Fibrosis Center here at Egleston. The doctor did explain that most babies present the illness with respiratory issues, but Lainey's happened to present itself with digestive problems. Although this is what sent us here (digestive problems due to Cystic Fibrosis), the doctors do not think she will have to take enzymes to breakdown her food ~ at least for the time being. As long as she continues to eat, poop, and gain weight (something that is difficult for CF babies), then she will be on the right track for going home. If Lainey continues to do well, the doctors are hoping to release her on Friday. This has been very hard for us, but we have decided that God must have a plan for us and our new baby girl. Please continue to keep us in your thoughts and prayers. We definitely need them and we have truly felt them in our most desperate times. Thank you all so much for everything.
Much Love,
DeAnn, Sid, Logan, Liam, and Lainey Smithson

Lainey is getting to EAT!

Hello everyone! I just wanted to update everyone on Lainey's progress. She is now 13 days old, 11 of which she has spent in the NICU, 9 of the 11 days have been at Egleston. Thursday she finally pooped! Yeah! Her first few poops, although not much, were completely on her own without help from irrigation. They began irrigation Thursday afternoon with the help of Mucomyst in her t-tube (the tube in her stomach.) After the Mucomyst irrigation, the real stuff began! All of the meconium that had blocked her intestines was finally coming out. Yesterday the nurse took her og tube out (the one in her mouth that was cleaning out her stomach.) This was awesome because now she was able to cry and it was one less tube coming out of her little body! Today she made even more progress. At noon she began feedings of 5 ccs of breast milk every 3 hours. Although 5 ccs is only 1/6th of an ounce, it is still food...which she has not had since she was 2 days old! They also moved her to her very own room! Now we have to make sure she can digest the milk and continue to poop. Each day they will increase the amount she can eat as long as she shows progress! It feels great to be able to report good news to everyone. I know it is possible due to the amount of people who have been thinking about and praying for Lainey and our family. We truly appreciate everything! Please continue to pray for us and hopefully my next email will say that we are bringing her home!
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey