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.
Liam trying to bend over but having a difficult time due to the numerous layers of clothing!
Logan in the playhouse.
Logan and Liam
We had a blast and hope we have another snow day this year!!
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!
Donations can be made in honor of Lainey to the Cystic Fibrosis Foundation (http://www.cff.org/). Any and All donations to the Cystic Fibrosis Foundation help the foundation to be one step closer to finding a cure for CF, ultimately saving our baby girl's life from this life long illness. Thank you for your donations!
Click below to view and donate through Lainey's Great Strides page. You can also join our team from Lainey's page!
Sid and I married June 8, 2002. We decided to start a family and had our first son, Logan, in February of 2004. Shortly after in April 2006, our second son Liam was born. Wanting a girl, we knew we would have another child. We got pregnant sooner than we wanted, but were thrilled to learn we were having a girl! Lainey was born in May 2008. Our family was perfect with 3 healthy children ~ or so we thought. Lainey did not have a bowel movement within the first 48 hours of life. Through x-rays the doctors found what they thought to be a blocked colon. She was taken to the NICU and transported to Egleston a few days later. She had surgery at 5 days old. Her bowels were blocked and it was suspected she had Cystic Fibrosis. After several weeks we learned that in fact Lainey does have Cystic Fibrosis. Through this disease, we have learned and grown a lot as parents. We are ready to share everything we learn to help inform others about Cystic Fibrosis. To learn more, visit www.cff.org.
Weight 28 lbs. 9 oz. Length 35 inches Digestive Nexium 15 mg capsule ~ 2 daily
Fer-In-Sol (iron) ~ .3 ml - 2 times daily
Aquadeks Vitamins ~ 1 ml - 2 times daily
Zenpep ~ 2 before each snack/meal Septra ~ 1 tsp - 2 times daily Cyproheptadine ~ 2.5 ml - 2 to 3 times daily Respiratory Albuterol ~ 2 times or more per day as needed
Saline 7% ~ 2 times daily
Pulmozyme ~ 1 time daily
Vest Therapy ~ 30 minutes 4 times daily
CPT (Chest Physiotherapy Treatment) ~ 30 minutes 2 times daily as needed
Weight Gainers Vital Jr. 24 oz. per day
Boost 10 oz. per day
1/4 tsp. of Salt in foods/drinks
Lainey's Gene Mutations
Delta F508 R560T
Cystic Fibrosis can do many things to us, but it can't take away our will to live, the love we give and receive, the faith we hold in our hearts, and most importantly our inner strength.