Friday, March 27, 2009
Brittney, the woman on the other end of the phone, explained that she had spent a couple hours reading my blog and viewing all of the pictures. Although she was hesitant about calling, she gave it a go. As you read on you will realize that God works in mysterious ways..........His work is never "Just a coincidence!"
Go to google, type in 'infants with cystic fibrosis in gainesville, ga'. Choose the 'images' button and our photo appears in the middle of the screen. Choose the 'blogs' button and we are the first blog listed. This is how the God's plan began to touch our lives.
Brittney has a 3 year old son, Landon, who seems to be in good health. On February 18, 2009 her daughter, Lanie, was born. YES, her name is Lanie! Sounds just like my Lainey, but spelled differently. A couple weeks after Lanie was born, Brittney and her husband received a call about the concerning results of the newborn screening. She took Lanie to have several sweat test, only to receive the confirmation that she indeed does have Cystic Fibrosis. As any mother, Brittney was concerned, overwhelmed, grief stricken, scared, and looking for answers. It is at this time when her mother-in-law did a google search for 'infants with cystic fibrosis in gainesville, ga'. After finding our blog on Lainey's cystic fibrosis, Brittney's mother-in-law insisted she check it out.
Brittney spent several hours checking out our blog and pictures, when she realized something for the first time. She knows my husband, Sid. Brittney and Sid worked together at the nursing home and he had trained her! She had also seen him at the hospital a week prior. She came to our house for Logan's baby shower! She knew she could call us!
Our phone conversation went on for about two hours. We had so much to share, so many similarities. Both of our precious girls are named Lainey or Lanie! Our boys also have "L" names! She lives in Lula which is just a hop, skip, and a jump from Gainesville! We both are committed to finding a cure for CF! I felt the presence of God within our conversation. He brought us together for the much needed support we both desperately need.
Lanie, Brittney's daughter, has had issues with foul smelling and loose stools. Lanie is also constantly looking for more food! After having her stool tested, she was told that there was no fat found! This is awesome for Brittney and Lanie! She knows that Lanie has Delta F508, but the other mutation is unknown. I shared as much information with her that I could think of.........I just had so many questions for her! Although we live very close to each other, we see different pediatricians. Her pediatrician sent Lanie to the Scottish Rite Cystic Fibrosis Center, while our Lainey goes to the Egleston Cystic Fibrosis Center. We spoke about trying to get her Lanie changed to the Egelston location because it is closer, but we aren't sure if Dr. Caplan would be able to keep Lainey and Lanie straight!
Brittney and I plan on working together to raise money for the Great Strides Walk in Athens, Georgia on October 17th. I feel so much better now that I have someone to help me! Any ideas on a team name for our Lainey and Lanie?
God is so good! HE has so many ways, some subtle and other grandiose, to show his love, care, guidance, support, and commitment. I am truly blessed to be HIS child and to have benefited from his sacrifices. Thank you God for bringing Brittney's family and our family together. Through HIM and my blog, I am thankful our story has provided comfort to others as well as created new friendships. HIS plan will bring great things!
Sunday, March 22, 2009
Well, yellow seems to be Lainey's Zone. The yellow zone means she is at risk and her weight needs to be monitored closely. She only gained 6 ounces and did not get any taller. She now weighs 18 lbs. 12.1 oz and is still 28 1/4 inches long. All she needed to gain was 1 pound and she would have been in green....barely, but she would have been there! Lainey's goal weight for next month's appointment is 19 lbs. 4 oz and to keep a pace of gaining one and a half pounds per month. Lainey's lungs sounded awesome! Although she was screaming like no body's business while the doctor was checking her ears, nose, eyes, and throat, he assured me that her crying was also part of his assessment. He said that if someone with CF can cry as hard as she was without coughing, then they have very little mucous in their lungs! Wow, that is a great feeling!
I often feel like I answer the question, "How is Lainey doing?" with the same answer. "She is doing well. We are always trying to get her weight up and keep her from getting sick." I usually get the response, "Well, she looks great! She weighs more than my kids did...she looks big to me...." Unless you have a child with CF, it IS hard to see why we are working so very hard to get Lainey to the 50th percentile. The bigger the better, for a child with CF. Our doctor tells us that he would like Lainey to be a little on the chunky side. The bigger she is, the more room her lungs have to grow. Being bigger also makes her heart and lungs work harder, thus making them stronger. The first three years of her life will give us an idea of how CF will effect her health in the future. Yes she does look big...her height is in the 85th percentile, her head is in the 95th percentile, and her belly is usually distended.....with that, it is easy to look past her skinny arms, legs, and booty! Yes she does look good and if I saw her with other children, I would think she was just as healthy as the kid next to her. If only more people were aware of Cystic Fibrosis!
With this frustration came a call from the Cystic Fibrosis Foundation. I spoke with Sara whom is in charge of the Great Strides Walk in Atlanta and Athens. With her help I will begin a team for the October 17th walk in Athens, Georgia. Living in Gainesville all of my life and knowing a ton of people between my parents, my sister, my husband, and I, I am hoping for a huge response. Thankfully we have many connections in Gainesville, one being that of a friend, Joel, who works for a local talk radio station. With his gracious offer to help in any way, I am sure we will be able to reach even more people. My only concern is, How will I have time to raise money and start a team with everything I have going on? Well, I manage to make things happen that I never imagined I could do so I am planning on adding this to my list! If you have any ideas, suggestions, etc. on how to organize and raise money for such a worthy cause, please share your wisdom!
Finally Gigi and Papa are home! Last week was "awful" for Logan since they were not in town! Because of their "mini vacation", we needed to find someone to take care of Lainey while I worked and Sid finished this quarter's finals. A HUGE thanks goes out to Mrs. Martha for taking care of our Lainey Bug! Mrs. Martha is only the second "non-family" member to watch Lainey for us. We are quite particular is who watches her for fear the person will not understand the importance of her health requirements. We invest a lot in her health and we hope any caregiver of hers will do the same, although we know that is hard to find. Mrs. Martha was awesome and Lainey was comfortable with her new arrangements in no time! Mrs. Martha.....ANYTHING you need monogrammed, it is yours.....just let me know and it is done!!! Thank you so much for caring for Lainey this past week.
"Thank you Mrs. Martha!"
Tomorrow Lainey will be going to an appointment with an occupational therapist. This will be her first therapy since she was in the hospital at birth and it is offered by our local agency, "Babies Can't Wait". I am very interested to see what they will be working on with Lainey. I will update later on her therapy. Until then, I have posted a "big girl" picture of Lainey below!
Sunday, March 15, 2009
The Party Bug!
Grandpa is checking out all of his guests.
Papa and Lainey......hey, I know she needs to gain weight, but beer?! At least wait until college!
Wrong bottle, Lainey!
My niece, Lilly Anne
Donn, Dean, Diane (my mom, aka Gigi), David, Dennis, and Grandpa Bob.
These are my mom's brothers. My mom is the oldest, then David, Dennis, Dean, and Donn. Mom and Donn are 15 years apart in age, but she, David, and Dennis are all within 28 months of each other. Dean was born 10 years later, then Donn another 5 years after Dean.
Yes, all 5 of them have names that begin with "D". We all have a "thing" with using the same letter to begin our children's name. My sister and I also have "D" names; DeAnn and Dayna. My cousins are Blake, Bradd, and Brooke......Ryan and Rachel.........Emily, Erin, Evan, and Elizabeth...........my dad's parent's are Dorothy and Dave................and our kid's are Logan, Liam, and Lainey...............CRAZY, I know!
Lainey posing for a few close-ups!
Hopefully I will get back to blogging more this week. I have been checking on all of my blog friends, but I have not had time to leave comments or make a post. Gigi and Papa are out of town this week, so Lainey has a new sitter! A HUGE thanks to Mrs. Martha and her husband for watching Lainey this week. Martha works part time at my school and this week happens to be her week off! YEA! On Friday it will be time for another monthly visit to the CF Center! Hopefully Lainey will weigh over 19 lbs!
Please keep us in your thoughts this week, as we have a ton going on! Sid has nursing finals this week, my parents are out of town, therefore I will have to cook for my family, I will be working on getting rid of this bronchitis, Logan has picture day (this is a BIG deal for my 5 year old....he must look good in his pre-k class picture!), Liam is getting over a double ear infection (STILL), and Lainey is going for her 10 month check-up at the CF Center. Thank you!
Friday, March 6, 2009
Sid and I were down stairs making bottles, cleaning the kitchen, and preparing for the kids to go to their Papa Dan's and Lainey and I to go to my grandparent's house. Our 5 year old, Logan, was already asleep, Lainey was sleeping in her swing, and we had just put Liam in bed for the umpteenth time, when I said, "I hope Liam isn't up there sitting on my desk eating Nerds! It is all of a sudden too quiet. Maybe you should check on him!"
Sid went upstairs only to find the biggest mess ever! Not only were there toys all over the room, but Liam had found the ONE and ONLY RED PERMANENT SHARPIE MARKER on my desk. Needless to say, one Sharpie marker can do A LOT of damage! Luckily Sid took care of the situation....in fear I would hurt Liam!!
By the looks of things, Liam is out to get Lainey and I! He only wrote on my desk, my papers, my night stand, a picture frame of mine with a picture of me in it, Lainey's baby doll, Lainey's baby monitor, and the carpet closest to my desk! In addition to the red marker, he also decided to squeeze a brand new bottle of Lainey's baby lotion all over the floor in front of my side of the bed and all over a decorative bed pillow!
I give my husband props for dealing with the child in a fairly calm manner (he is still alive) and for using numerous alcohol prep pads and a bottle of fingernail polish remover to get rid of most of the red marker. He even got out the carpet cleaner to remove the lotion...and he HATES that big cleaner!! Thank you honey!
Lesson Learned: Put the 2 year old in a cage when you want him to stay in one place!!! Just kidding, but we are looking into some different methods of keeping him safe. This is just one of many dangerous/damaging tricks he has pulled....and I am sure it won't be the last! I am also sure he would probably continue to act like this even if he wasn't the middle child! Until then.....no writing utensils within a 2 year olds climbing range!!
Some books and the carpet with more red marker!
Thursday, March 5, 2009
Grandpa Bob and Grandma Lil
DeAnn & family
Wednesday, March 4, 2009
Lainey is also having some issues with sinus drainage. She has had a slimy, green nose and the beginning of an ear infection in her right ear. She was running a fever on Monday, so I called her CF doctor. Of course Lainey is now on the old standby ~ Bactrim! With the combination of the Bactrim and the eye drops she was prescribed, Vigamox, her eyes are looking much better!
I am hoping everyone is well soon because this weekend the boys are going to hang out with their Papa Dan and I am going to my grandparent's house in South Georgia. I will be taking Lainey, but she is really easy to deal with even though she requires numerous meds and CPT. Maybe I will get to relax and actually hang out with adults! I always enjoy visiting with my grandparents. I am very lucky to still have both grandparents on my dad's side as well as my mother's side of the family!
Please pray that everyone is well soon, therefore I can keep my plans of relaxing and hanging out with my grandparents this weekend!
Sunday, March 1, 2009