Lainey's Cystic Fibrosis Journey

SNOW much fun!!

Thanks to "anticipated" snow, the kids and I were released from school early on Thursday. As anticipated, the snow began around 2:30 and continued into the night. The next morning we woke up to a winter wonderland (well for Georgia this is a winter wonderland). No school on Friday! Woo Hoo!!

Snow on the house.

Snow in the front yard.

After Lainey laid down to take a nap, the boys and I went out to play in the snow. We played for about 2 hours. Thanks to our ski bibs, everything stayed warm except our face! We had to play as much as possible because we may not get another snow day in Georgia this year!

The boys playing in the playhouse.


Logan on the sled.


Logan James

Liam Scott

Liam trying to bend over but having a difficult time due to the numerous layers of clothing!

Logan in the playhouse.

Logan and Liam

Sledding Fun!

We had a blast and hope we have another snow day this year!!

Back to the Grind

Well, it is over.......my break that is! Today was the kids' first day back to school and my first day back to work since December 18th! This morning went a little too smooth and I was sure the day was going to end in a disastrous event, but so far so good.....and the kids are in bed so we should be in the clear.



Sid and I rang in the New Year by sitting at the end of our bed watching Dick Clarke and drinking an amaretto sour........and listening to Liam beg to go to Time Square because he "really like(s) balloons!" Shortly after the we rang in 2010, Sid went to bed because he was scheduled to work in ICU new year's day.....bound to be a happenin' place after all of the new year's eve parties! Liam and I stayed up and danced to some of the music groups that performed for the Las Vegas New Year's Party. Liam crashed around 1:00 am and I called it a day shortly after. Woo Hoo.....another eventful new year's eve at the Smithson household!



With the new year, brought the dropping of Lainey's Deeming Waiver Medicaid. We have applied, been denied, appealed the denial, denied again, requested a court hearing, and denied a court hearing......now Lainey has been dropped! So, here we go again! I am currently working on a new application for the Deeming Waiver, the same thing she was just denied several times. I will become their worst nightmare until Lainey is approved. It is totally ridiculous that I actually work, pay my bills, have insurance, and take care of my child.......yet get no assistance with her astronomical medical bills, medications, and supplements. Ugh! I am sure if I quit working, got rid of my husband, stopped paying my bills, and no longer took care of my children, everything would be handed to me with no questions asked! I really could gripe about this for hours, but instead I am going to spend that time filling out all of the required paperwork so that Lainey's case is heard again! Since she can only yell a handful of words, someone has to be her advocate!



This year I am just asking for good health....for everyone in our home!! Hopefully 2010 will be a ton better than 2009!



Now, I am off to keep my resolution of exercising....Wii Fit, Here I come!



DeAnn

Time Flies!

So, no excuses.......well, other than I have been enjoying the kids, going on vacations, monogramming a ton, house sitting for my parents, teaching, getting back into school routines, visiting the hospital with Lainey, and Christmas shopping!

This past summer flew by so quickly that I am not sure if I even took a breath! This first half of the school year is already gone....and I don't really know where I have been! I haven't blogged since the little minute of down time I had while we were vacationing at the beach. I am not sure if I even know where to begin! So, if you feel so inclined to sit down and catch up on life at the Smithson household, then prepare yourself for about half an hour of reading and a gazillion pictures!!!
Since my last post, The Graduate, Sid has graduated, received his diploma, and passed the National Boards for Nursing. He will begin his RN program sometime early next year. He is still currently working in ICU, and we are hoping that he soon gets some assignments that pay a little more.....especially with the hefty day care bill, which I will mention later in this post. Sid's schedule is much better than it has ever been, with him working 3 days early in the week, leaving a day or two for overtime and then having the weekends off! The kids are really enjoying having dad home more!

At the end of June, we vacationed in Flagler Beach, Florida for two weeks! The first week of our vacation Sid had to work, so Papa Dan drove the camper, the 3 kids, and I to Florida. The second week Sid joined us for some much needed R & R! We also had a wonderful visit from Sid's dad, Noel! He drove from Texas to Florida to hang with us for a few days. It is always great to visit with everyone at the beach. After leaving the beach, we headed up to Jacksonville, Florida to visit with more family for the 4th of July. We camped at my Uncle David and Aunt Nina's house on the St. John's River. They know how to throw a great party! Below are a few pictures of our trip!

Our camper at Gamble Rogers State Recreation Park in Flagler Beach, Florida.

My niece, Lilly Anne......hangin' out in the kiddie pool.

The Free Bug - Lainey after a long, sandy day at the beach.

Sid's 36th birthday party at the beach.

My sister, Dayna and brother-in-law, Brad. This was our date night without the kids at Snack Jack!

Dayna and I at the Pirate's Cove Mini Golf.

Lainey, Liam, and Logan on the beach.

The Three Stooges!

Mommy's Surfer Girl

My parents - aka: Papa and Gigi

My Grandma Lil hanging out by the pool at Uncle David and Aunt Nina's house on the 4th of July.

After our two week trip to Florida, we only had a few weeks left of our summer break. We spent our time staying busy with shopping for back to school, birthday parties, swimming, and camp!

While we were shopping, Logan found this cute BUG!

Lainey and Kaylah - Kaylah's 1st birthday!

Kaylah's brother, Dawson, also had his birthday party at the same time and he turned 5!

Logan enjoying Dawson and Kaylah's party at the park!

Lainey floating around the pool - Aaaaahhh, the life of a 1 year old!

Liam's new addition for a little over 8 weeks! Of course he won't hurt himself when jumping off of the top bunk......that is what he said, but that was not the case! It was not a matter of IF Liam would ever break a bone, it was a matter of WHEN! And we are sure this won't be the last time!

Dawson and Logan went to Camp Elachee and had a blast!

Dawson(5), Logan(5), Liam(3), Kaylah(12 months), and Lainey(13 months)

I babysat Dawson and Kaylah on the last day of camp....needless to say, I got a lot of stares with this crew of 5!!

Liam at Build-A-Bear for Reagan's 3rd birthday party.

Liam and Reagan

Lainey at Reagan's party

The birthday cake was awesome!!

In August the kids and I started back to school. Logan started kindergarten and Liam and Lainey started day care. Although Liam was use to day care, Lainey was not. We were worried to death about the amount of germs she would be exposed to at the day care. She took to day care instantly and looked forward to going every day. We were happy that she settled in so well, although our $1000 per month day care bill didn't settle so well with us!! I guess you gotta do whatcha' gotta do!!

Logan's first day of kindergarten.

Shortly after school started, it was time for Gainesville's annual Touch-A-Truck. The boys have always loved going to Touch-A-Truck. Despite all of the loud horns, Lainey also enjoyed it!

Logan testing out the front seat of an ambulance.

Liam sporting a Hall County Fire Department helmet!

The boys!

Watch out....Liam and Logan driving the sanitation truck may lead you somewhere other than the dump!

Lainey enjoying the view from her stroller!

For Labor Day, my sister Dayna, her husband Brad, and their daughter Lilly, joined our family for a weekend of camping at River Forks Park in Gainesville. Mom and dad finally got home from their month and a half long trip and visited for a few meals at the camp ground. The kids were so glad to see Gigi and Papa!

My niece, Lilly Anne

Papa and Lainey

Of course Gigi and Papa made it back into town for the beginning of the football season for the University of Georgia. Since they are members of the Bulldog RV Club in Athens, we joined them for a few pre-game tailgating parties! Their motor home is the place to be before a Georgia home game!

Lainey and Gigi

Lainey sporting her Georgia gear!

Lainey had several CF visits, but on September 21st she had her first major check-up. This visit consisted of labs, chest x-rays, urine analysis, and lung function tests. All things checked out great and she had even gained a considerable amount of weight!

Waiting on the doctor!

Lainey getting into things.....NO!! Not Lainey!! She would never get into anything!! Ha!

Lainey participated in her first CF walk in Athens, Georgia on October 17th. Our team, Life for Lainey and Lanie, had many supporters. Although the weather was not to be desired, rainy and cold, we still had a great time! Our team was in the top 5 for raising the most money! Woo Hoo! We learned a lot through participating in this walk and know what we need to do for future walks to aid in raising more money. Thank you to everyone who supported Lainey with a donation. I still have some thank you notes that you should be getting in the mail soon!! I guess it is better Late than Never!

Team Life for Lainey and Lanie

Lainey and Lanie - read about how we met Lanie's family here!

Lainey and Lanie at their CF walk.

I made their shirts since we couldn't find any small enough for them.

Check out my monogramming blog here!

The VIP!

Gigi and Liam at Loco's after the CF walk.

The last week in October, our family, my birth mother and her husband, and my nephew went on a Disney Cruise. This cruise was our 2008 Christmas present from Carolyn and David. What a Christmas present!!! We had a blast! If these pictures make you want to go on a cruise, just let me know - Carolyn and David have a travel business - LML Travel - they would be glad to hook you up!!

The Disney Wonder

Lainey, Liam, and Sid at the Cast Away Party!

Mason, Liam, and Logan watching Cinderella on the Big screen.

Lainey enjoying the view of Nassau while eating her breakfast!

Nassau, Bahamas

Sid and I in the Bahamas!

Trick-or-Treating on the cruise.....Logan the Transformer!

Spider Liam

Fairy Lainey and I

The Boys

Lainey

Chip and Dale with Logan, Lainey, Sid, and Liam

Logan

The Cast Away Cay......Disney's private island.

Lainey in her yellow polka dot bikini!

Pirate Logan.....Pirate night on the cruise!

Lainey enjoying her hot dog.

On Noverember 18th, my niece Lilly Anne turned 1! Dayna and Brad had a big celebrarion for Lilly Anne!! We had a blast celebrating with our sweet Lilly Anne.

Lainey at Lilly Anne's party!

Lilly Anne's cool birthday cake!

Dayna, Lilly Anne, and Brad

Lilly Anne digging into her cake!

Logan's kindergarten class had a Thanksgiving program and it was wonderful. He was a Pilgrim and had 2 speaking parts! The program was so cute and I was a very proud mommy!!

Pilgrim Logan James

Logan's kindergarten class

Logan

For the Thanksgiving break we decided to go to Stone Mountain Park with my parents, my grandparents, my sister's family, and my aunt and uncle and their family. My sister and I are teachers and with the deficit in Georgia the teachers have been furloughed 3 days. Two of our furlough days happened to fall the week of Thanksgiving, allowing for a long vacation! Woo Hoo for long vacations, Boo Hoo for smaller pay checks!!

This much needed vacation turned into everything but a vacation. We arrived at Stone Mountain Park on Sunday, November 22 and ended up at the Children's Healthcare Of Atlanta ER with Lainey on the same day. Lainey was running a fever of 101.8, her oxygen was 89, her nose was runny, eyes were watering, her skin was gray, she was whiney, and she was coughing a ton. After failing the initial outpatient assessment, they sent Lainey for a chest x-ray. The chest x-ray was horrible. They admitted her right away. Our stay lasted for 19 days!!! Lainey had pneumonia, the flu, staph, MRSA, pseudomonas, and other bacterias in her right lung. She had a bronchoicscope, but it was no good due to a miscommuntication between the lab and the microbiology team. They were unable to grow any of the bacteria due to this mishap. The first week of treatment was also no good. They started from scratch with new antibiotices the second week and had huge improvements. While Lainey was in the hospital she became the proud new owner of a Smart Vest. She does vest therapy 4 times a day for 30 minutes each time. She also has Albuterol, saline, and Pulmozyme nebs to do several times a day. Needless to say, Lainey no longer goes to day care! We are currently looking for someone to come into our home to care for her while we are working....and that is not an easy task! Here are some pictures from her hosptial stay.....they are small because I took them with my cell phone!

November 22 - ER

1st day at Egleston

Vest Therapy with mom!

Hanging out in the hospital crib!

Lainey telling her baby "shhhhh..."!

Lainey and Resident McDreamy

Lainey - Smitten after hanging out with Resident McDreamy!

Lainey in one of her many cute Christmas outfits!

Lainey watching TV from the rocking chair in her room.

Lainey and her froggy

Watching TV again!

Lainey visiting with her brother!

Well, our wish came true and we made it home from the hospital before Christmas. The kids, Sid, and I had a lovely Christmas with our family. We all got way more than we needed, but were truly blessed to be able to spend the season with the ones we love. This year was a blast at our house on Christmas Day. The kids are now at an age where they are starting to enjoy all the hype of Santa and their gifts on Christmas morning! After spending the morning at our house, we went to Gigi and Papa's house to hang with them as well as Dayna, Brad, and Lilly Anne. The day after Christmas we went to Grandma Dorothy and Pop's house and then to Grandpa Bob and Grandma Lil's house. It was great seeing all of our family. We are lucky and truly blessed to have such a close-knit family.

Our Christmas Tree

Gifts!!

Liam opening his presents.

Lainey in her new treament chair!

Logan and Liam opening their BIG gift!!

WOO HOO!! A trampoline!! Thank you Gigi and Papa Santa!!

Logan and his new Handy Manny motorcycle!

Lainey and Daddy opening gifts

Lainey Bug playing with her new toys

Logan posing in front of his loot!

Lilly Anne standing on her presents!

Lainey Bug!!

My parents....aka: Gigi and Papa

Ok, so I hope your eyes aren't bleeding from reading this long post! This about sums up the past 6 months in the life of the Smithsons. It is my new year resolution to keep this blog up to date. A big thank you to everyone for everything you have done for us this year! We are truly blessed to know each and every one of you. We hope that everyone has a wonderful finish to 2009 and a beautiful beginning to 2010!!

With Love,

DeAnn