Can You Guess......

............what I got today? Ummmmmmmmmmmm........Keep thinking..................

...................You are getting closer................................look to the left as you are thinking................

...................Ohhhhhhhhh Yeah, baby! I think you guessed it!

I got my ears pierced today!! Now all I have to do is put diamond earrings on my Christmas List to Santa!

Today I took Lainey to have her ears pierced. After seeing tons of needles and tubes in her when she was at Egleston, this venture was a piece of cake! She cried when the ear piercing gun made a loud sound, then all was cool! Lainey was a tough as nails. One minute of crying, MAX! We are still working on getting the marker off of her earlobe, but she looks so cute with her new jewels!

Georgia Girl

"Mom made this Georgia dress for me, but today I am embarrassed to wear it! Florida kicked our bootie!" ....Maybe next year......

Too Many Treats!

Halloween with the Smithsons was WILD, but fun! Sid had to work until 7:15, so I took the kids out for an afternoon of costume wearing, candy gettin', cavity producing fun ~ also known as Trick-or-Treating! Several of our friend also joined us for some Trick-or-Treating excitement. The first place we visited for candy was the square in Gainesville. After the square, we hit the drive-thru at Chick-fil-A and headed for Gigi and Papa's house to eat, although they were not there to check us out in our Trick-or-Treat duds! Our last big stop was at the mall. It was crazy! I saw way too many of my students while walking through the sea of people at the mall. Sid was able to catch up with us at the mall and he was thrilled to be at the Gainesville Mall along with everyone else! Following our trip to the mall, we visited a few neighbors for some last minute candy gathering before calling it a night! Logan had such a blast that he asked, "Mom, can we go Trick-or-Treating again next year?" Sounds like a good plan! It was fun, but the kind of fun I can handle only once a year!

Lainey is here...just can't see her behind Cookie Monster Liam! Logan was the poster child for the new super hero ~ "Chunky Spider Man" ~ who says you have to be fit to be a hero? Katelynn was the Hungry Caterpillar...eating the paper just to get to the lollipop! Iron Man Dawson was enjoying the extra weight his muscles added, while his sister Kaylah the blooming flower, slept through the entire event!

Mom and her boys!

Watch Out! It is Spider Logan!



Cookie Monster Liam eating candy..........imagine, Liam eating only junk food!



"Lainey Bug" trying to take off!

"No Liam! I'm not a Real bug! Please do not smush me!"

This ladybug has brought more than luck into our house....she is a blessing from above!

And why did we spend the money to dress Liam up as a monster? He doesn't need a costume for the title of "monster!"

......eating MORE candy!

This is the last time we saw all of Liam's costume.....

.......we now have the "Stripping Monster!" And yes, he is eating another piece of candy!

Don't confuse this with a gang symbol....it is his web shooter (since his mom would not spend the $29.99 for the "real" web shooter at Wal-Mart!)

The "Plugged Bug!"


Sugar Crash! Too much fun for a little bug!

The Smithson Pumpkins

On Monday we went to the Pumpkin Patch at our church! It was voted the best photo spot in Gainesville! What the sign didn't say or guarentee...the pumpkins were great at having their pictures taken, sitting still the entire time....the kids on the other hand, were not as cooperative! Not only was it cold and windy, but the excitement of tons of orange things that look like balls laying in one area, was more than Sid and I could handle! Logan was impressed he could carry even the "biggest" pumpkins without droppppp....ing them, oops! Liam was just interested in how far the small pumpkins could travel when thrown with the wind! Needless to say, we left Lainey in the car due to the weather, took a few pictures, picked out a few pumpkins, and headed home! Pictures at home are just as cute, right? Took some convincing for me, but soon became the best idea Sid had ever .... and I mean ever, thought of!

Logan James and the "biggest" pumpkin...at least in his 4 year old eyes!

"Ummmm.....I wonder how far this one will go?" thought the cute, little innocent Liam!

The warmer "pumpkin patch."

Liam had enough of all the pumpkin stuff ... Lainey and Logan were debating on whether or not they are really related to Liam!

Who needs those boys in the picture... when you have me!

Watch out! There is a "Bug" in the pumpkin patch!

Our Little Pumpkin Girl!

We hope you enjoyed the pictures as much and more than we had taking them! Check back this weekend for more pictures of the kids during an afternoon full of Trick-or-Treating! We have an "action" packed afternoon planned as we Trick-or-Treat with a few of our friends!

Much Love,

DeAnn

Church Bug

Lainey before attending church!

She is finally able to wear the pretty dress Aunt Dayna gave her!

Snug as 3 Bugs in a Rug!

Logan, Lainey, and Liam in the blankets Great Aunt Shirley made!

The kids love blankets . . . and these blankets have been numerous places in the past two weeks since getting them in the mail! Thanks a bunch Great Aunt Shirley!

"Frog Boy" Liam at our church's Trunk - or - Treat.

Georgia is missing out not having this "Big" guy on their team! Logan was "scaring" everyone at Trunk - or - Treat with his muscles!

"Lainey Bug" has lost her wings, but continues to be full of smiles!

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

When it rains, it pours....and we are in a monsoon!

Liam tailgating at the Georgia game.

The Smithsons definitely love each other, but we have been spreading more than love! Liam had a fever of 101.4 on Sunday night, leaving us no choice but to resort to our emergency plans on Monday morning....Gigi and Papa! Thankfully they were able to watch him while Sid was at school and I was at work. How it breaks my heart to go to work instead of taking care of my children when they are sick! In all efforts to save my sick leave for a "rainy" day, I had no choice but to leave him at mom and dad's house. Fortunately we had previously scheduled an appointment with Liam's ENT that was conveniently scheduled for 3:30 on Monday! This appointment was scheduled to discuss and determine Liam's need for the removal of his tonsils. With one AHHHHHH, Dr. Stewart confirmed Liam's second case of tonsillitis in a month. He had just completed his 10 day round of antibiotics for bronchitis! We have scheduled to have his tonsils removed, a bilateral earwax removal, removal of his adenoids (which were removed last December, but are growing back in the form of scar tissue), and to place new ear tubes (this will be the third pair!) His surgery is on Wednesday, October 15th at 6:00 a.m. Hopefully this will be the answer! Dr. Stewart thinks this should solve his problems with constant ear infections, respiratory infections, and throat infections, as well as improving his speech, snoring, and constant drooling. If only it would help with Liam's anger management!

Lainey at the Georgia game!

Wednesday is also a big day for Lainey! She will be receiving the first of eight Synagis shots for the prevention of serious illness related to RSV. The home health care nurse will come to mom and dad's house to bring a digital scale and administer her Synagis shot. Two days before each shot we will call the suppliers of Synagis to report her weight. Knowing her exact wight is vital in determining the correct dosage of Synagis. Each shot costs $2300! The doctor wanted these shots to begin in September and last through April. Obviously the insurance company didn't agree with the doctor, thus the reason for beginning a month later! After an appeal from the distributors of Synagis, the insurance company agreed to continue Lainey's monthly shots through April 14th.

The sick Logan James!

Last night Logan went with Gigi and Papa in the "big bus" to begin tailgating at "the Georgia." Around 10:30 mom called to report that Logan was complaining of a headache, had a fever, and was throwing up! At least he made it to the toilet when he felt sick! This happened to be exactly two weeks from his confirmed case of strep throat, and just four days from the completion of antibiotics! Now we are hoping Liam does not get this stomach bug which could possibly postpone his surgery. Although Logan is feeling a little better, he is still feverish as I type!

"Oh really?"

Wednesday evening when I finally got around to opening the mail, I found a packed envelope from the endocrinologist. I had blood work drawn two weeks ago and an MRI brain scan one week ago, with no call from her. It was then when I understood why she had not called me with my results! She mailed fifteen pages of test results and prescriptions. With the 3 tubes of my blood they found several things. My red blood count, hemoglobin, hemocrit, and Ferritin was low. It was determined that I am anemic, therefore I am now taking iron supplements daily. It was also determined that my vitamin D levels were low. Once a week I take 50,000 units of vitamin D. My serum prolactin level was high, so I am now taking medication twice a week to lower these levels. Neither the doctor nor I know what has caused these level to be higher than normal, therefore I will have it checked regularly. My estrogen level was also extremely low. For a female of my age, the reference range is 19 - 528 (and should be at the higher end). The test showed my estrogen level to be 7, that of a postmenopausal female with no treatment. This low estrogen level may be related to the elevated prolactin level and will be monitored through blood tests. Last, but not least, my kidney function was low. Tests on my kidney function will be performed regularly to rule out chronic kidney disease. The other tests were normal, including the MRI brain scan. I was worried they might not find a brain!

Lainey and Uncle Brad hanging out in Gigi and Papa's motor home.

On Monday Lainey will go see Dr. Caplan for her monthly visit. Maybe she will weigh 13 and one half pounds...this is my goal! She has been eating rice cereal daily, which has helped lower the number of poopy diapers we change per day! Mom and dad will watch the boys since they are out of school on Monday for Columbus Day, while my friend, Jenn, Lainey, and I go to the CF Center. I will try to report about Lainey's doctor visit and Liam's surgery on Wednesday.

Thanks again for all of your prayers! Hopefully we will get a break with illnesses, for the sake of our health and wallet! In addition to the amount we are spending on numerous doctor visits, we were just informed by Liam's daycare that the fees are increasing. We will pay an additional $40 per week beginning in November. This will bring the total to $525 per month, not including his lunch and snacks! We are thankful that mom and dad are able to watch Lainey! Daycare for the two of them would cost roughly $1100 per month. Due to this increase, Sid will be picking up a few hours on Monday and Tuesday after school. It makes it harder on all of us when Sid has to work more hours, but we just thank God that we have that as an option when times get rough! Although it is hard to see at times, God really is Good! Continue praying for us ~ especially for Liam during his surgery on Wednesday and Lainey with the beginning of her Synagis shots.

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?!

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!