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

Lainey's List

Lainey's List

Life with CF.........

1. Lainey was my third pregnancy in 4 years! I had ALL day sickness for about 4 months and that is when Zofran became my best friend! I gained a lot more weight with her than I did with my other two pregnancies. I had placenta previa and a large bulging blood vessel in my right leg which could be quite painful at times. Other than feeling exhausted (who wouldn't be with a 3 year old boy, 1 year old boy, teaching 21 first graders, and being pregnant), I had an easy 2nd half of my pregnancy. I opted out of all blood tests since my two boys are healthy, plus nothing would have changed my mind about keeping my baby girl! My awesome OBGYN let me see her sweet face on the 3 - D ultrasound machine at each appointment!

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2. Lainey Noelle Smithson was born Tuesday, May 20, 2008 via a scheduled c-section. She weighed 7 lbs. 3 oz. and was 19 1/2 inches long. She was absolutely perfect!

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3. Lainey was great at nursing. She ate and slept....we were loving the nurses waiting on us! The doctors mentioned being concerned that she had not had her first bowel movement...I was excited because I remembered how much I hate the first ones with my two sons! The nurses tried forcing her to drink formula and performed rectal stimulation trying to get her to pass her first stools. She did not seem to be in pain and was not bothered by the attempts from the nurses.

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4. When Lainey was 2 days old, the doctor ordered an x-ray of her bowels. At this point I was still unconcerned because I always had issues using the restroom as a child. She was still acting okay until late afternoon. She began spitting up yellow stomach bile (the nurse told me it was just spit up) and her stomach was distended. It was apparent that she was beginning to feel uncomfortable. The doctor believed that Lainey had a bowel obstruction, possibly atresias (we never saw the blockage in the 3 - D ultrasounds, although her stomach was noticeably larger toward the end of my pregnancy...but my boy's stomachs were large also). They whisked her away to the NICU. She stayed in the NICU in Gainesville for 2 days until the Angel II ambulance transported her to Egleston Children's Hospital.

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5. Lainey had surgery on Sunday, May 25, 2008 on what we believed to be a bowel obstruction, possible Hirschprung's, with the chance of atresias. Although we were nervous, we were sure they would be able to fix her and we would be leaving several days later. The surgery took longer than we anticipated. The doctor informed us that Lainey had meconium ileus and it look like a classic case found in children with Cystic Fibrosis. We were devastated. They had not said anything about Cystic Fibrosis. The meconium was so thick that the doctors were unable to push any through the intestines. They placed a t-tube in her bowels rather than an illestomy, in hopes that it would be enough to drain the meconium.

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6. Lainey was a trooper through her surgery. The evening after her surgery she needed a blood transfusion, but was doing well otherwise. She finally passed her first stool at 9 days old, although it was less than 1/4 tsp! On June 5th (Lainey was 16 days old) I spent the night with her at the hospital. The next morning the doctor came in the room to inform me of her having Cystic Fibrosis; Delta F508 and R560T mutations. I will never forget the feeling of finding out such devastating news after getting such little sleep and not having any family with me at the time.

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7. Lainey was introduced to her enzymes and applesauce for the first time when she was 20 days old. Although having difficulty gaining weight kept her in the hospital longer than we wanted, she was released on June 18th after being in the hospital for 29 days.

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8. Lainey takes one Ultrase MT18 (equivalent to 4 Ultrase) with each meal or snack. She takes 1 ml of Vitamax Vitamins per day, 2 ~ .3 ml of Fer-In-Sol (iron) per day, and 2 ~ Prevacid 15 mg capsules per day for acid reflux. She is also on a 30 calorie Alimentum and Polycose diet (regular formula or breast milk is 20 calories) with 1/4 tsp of salt in each bottle. She drinks approximately 20 oz. of formula per day and eats a bowl of 30 calorie rice cereal with 2 jars of food. We add 1 TBS of vegetable oil per jar of baby food.

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9. Lainey gets 2 ~ 30 minute CPT (chest physiotherapy) sessions per day....and she loves it! :)

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10. Lainey has taken Bactrim 2 times for a green runny nose, but that is the only antibiotic she has taken outside of her hospital stay. She currently receives Synagis shots once a month to help prevent RSV. These shots are given by a home health care nurse who comes to our house...or Gigi's depending on where Lainey is hanging out!

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11. Lainey goes to the Cystic Fibrosis Center at Egleston Children's Hospital in Atlanta once a month and goes for regular checkups at her pediatrician's office here in Gainesville.

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12. Lainey is babbling up a storm, sitting up, scooting, and into EVERYTHING in her reach! She is always smiling, laughing, and overall a very happy 9 month old baby. She has taught a lot of people in our small town A LOT about Cystic Fibrosis and will hopefully continue to spread awareness through her story.

Thanks for keeping up with our sweet Lainey Bug's story!

Here are some pictures of our Lainey Bug from our trip to Target and playing at home!

Our Flower Bug

Bunny Bug!

Happy Bug!

Smiley Bug!

Silly Bug!

Babbling Bug!

Have a good week!

The Smithsons
Sid, DeAnn, Logan, Liam, and Lainey

The Christmas Bug

Here are a few pictures of Lainey, the Christmas Bug!

Firsts

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

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

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

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

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

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

Liam ~ "One tough cookie!"

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

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

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

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

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

Love Always,

DeAnn and family

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!

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