A "Rock'in " Party and a much needed BREAK!

This past weekend, our family went to a "Rock'in" 1st Birthday Party! Campbell Rock turned 1 and we were there to help her celebrate. Campbell's mom, Josie, and I were in kindergarten together. We always had a blast and we NEVER got into any trouble!

For Campbell's 1st Birthday it was asked of the guests to donate money for Lainey's cause at the Cystic Fibrosis Foundation in lieu of gifts. This was such an honor! At the party, Sid told a little about Lainey's journey with Cystic Fibrosis, but not without shedding a few tears. Retelling, hearing, thinking about, subtle reminders of, and the reality of what Lainey has been through in these past 10 1/2 months along with the nagging monsters of CF pulling at your strings on a minute by minute basis, will bring me to tears. Sharing Lainey's story is very important to us, as well as Lainey's future. We truly appreciate Josie, Marcus, and Campbell sharing the "birthday spotlight" with Lainey. Below are a few pictures of Campbell's big day!

Lainey loved playing with the stacking boxes!

The Birthday Girl!

Marcus, Campbell, and Josie

"I don't like this Stink'in Hat!"

Lainey and Campbell checking each other out!

YUMMY Cake!

Lainey Bug!

Today begins the second best time of the year for a teacher........SPRING BREAK!! The first best time of the year is summer break! The camper is packed, the Expedition is packed, and the kids are raring to go! Although we aren't going far, since Stone Mountain is only an hour and a half away, we are just happy to be going! Unfortunately, Sid has to work on Friday and needs to be at school on Tuesday. My daddy is driving our camper to Stone Mountain today, then coming back to Gainesville to pack his motor home, only to head back to Stone Mountain to camp with us! I will be flying solo with the three kids tonight and all day Friday, but fortunately my parents will be there to help.

I wish my sister was able to camp with us, but her husband's surgery got in the way of the plans! On Tuesday he will be having 4 to 5 teeth pulled and a large section of his lower jaw removed. This surgery is a result of the spot he found in his mouth (mentioned in this post on my sister's blog), which turned out to be ameloblastoma. They will be coming out to Stone Mountain to spend the night on Monday since they need to be at Emory for Brad's surgery that is scheduled for 5:00 am on Tuesday. The best part is that I will get to hang out with my niece Lilly Anne while they are at the hospital! YEA!

With our season passes to Stone Mountain, we are able to come and go in the park as we please. The boys are looking forward to the 4-D theater (dinosaurs are the theme), the train, putt-putt, Sky Hike, Katy's restaurant, the sky buckets, funnel cake, and their favorite ~ the Laser Show!! Our friends Cindy, Sean, Dawson, and Kaylah will be coming to visit us at Stone Mountain on Saturday. They came last year when we were here for Spring Break (Cindy and I were pregnant with our girls) and we had a blast! Of ALL things, my favorite part about going to Stone Mountain is the BREAK! We do not have internet, our phones don't work well in the park, no cable tv, no school......just family time and going to bed early! Maybe I'll be able to catch up on some much needed rest.

Another cool thing about our trip is our photo session with Eileen Swaney for the Littlest Heroes Project! We are so excited about documenting Lainey's personality with some candid shots in our own element!

We will be back home on Wednesday, so look for some life from us then! Have a good weekend!

DeAnn

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

Lainey's 2nd CF appointment

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

Lainey's transfer to Egleston

Hello All. Thank you so much for all of your thoughts and prayers. We are just having to take things one day at a time. Today, Sunday May 25th, Lainey had surgery at Egleston. She is 5 days old and has yet to have her first bowel movement. They believed that there was a spot in which her colon was not connected, therefore she wasn't able to go to the bathroom. After opening her, they realized that everything is connected. This is great because they did not have to cut or sew her colon. The issue that continues to be a problem is that the meconium (the first stool a baby has made from amniotic fluid and stomach bile) is unusually thick. The doctors were unable to manipulate the bowel in a way that would allow the meconium to pass through the colon. They put a tube into her colon to allow them to loosen the meconium with special liquids and for them to be released. This is a step they take before an ilestomy (similar to a colostomy, but it can be reversed). They are hoping that this will loosen things up enough so that she can begin having bowel movements. This will take approximately 4 days to occur. After passing her first few bowel movements, feeding will be presented. She may have to be tube fed if she does not tolerate breast milk or formula. They are calling her condition, Meconium ileus. With what the doctor saw, she thinks Lainey has a classic case of Cystic Fibrosis. A geneticists will test Lainey for Cystic Fibrosis some time this week. We will most likely be at Egleston for 3 weeks, but it could be longer if she has difficulty with feedings. It could also take longer if they find it to be true that she has Cystic Fibrosis. I know this is a lot and maybe more than you would like to take in, therefore you can understand how difficult this has been on our family. Our dreams (and my checklist) of bringing her home from the hospital on Saturday changed into following her in the Angel II transport to Egleston. All we can say is thank you for everything. I know that your thoughts and prayers have helped her and will continue to help her and our family through this difficult time. Thank you again for everything.

DeAnn and family

Meconium ileus: Obstruction of the intestine (ileus) due to overly thick meconium, the dark sticky stuff that is normally present in the intestine at birth and, after trypsin and other enzymes from the pancreas have acted on it, is normally passed in the feces after birth. Meconium ileus results from a deficiency of trypsin and other digestive enzymes from the pancreas, as in cystic fibrosis (fibrocystic disease of the pancreas, mucoviscidosis).