Having A Ball!

Friday was Lainey's 11 month clinic visit. She is finally in the GREEN!!! She was 20 pounds and .02 ounces! Her length was 28 1/2 inches, putting her BMI in the 50th percentile. The antibiotics she has been taking seem to be doing the trick. Dr. Caplan said her lungs sound clear! Yea! We will begin introducing Pediasure, again. This time we will put a little at a time into her bottle to gradually wean her from the formula. I will also begin introducing a sippy cup. It is a pet peeve of mine to see kids older than 15 months drinking out of a bottle, therefore I must begin working with Lainey. Dr. Caplan said that Lainey will come back next month for her 1 year checkup, then we can begin scheduling appointments a little further apart! I won't know what do not having to go to the CF Center every month!

As for now, all of Lainey's meds will stay the same. The only change in Lainey's routine is to begin introducing Pediasure.....after she finishes the antibiotics. Dr. Caplan is unsure about introducing whole milk since it only has 20 calories and due to the milk protein allergy Lainey had when she was in the hospital. We are hoping that she continues to gain a lot of weight now that she is eating table foods. Lainey is taking a liking to french fries ~ salty and fattening ~ just what the doctor ordered!

Lainey and Gigi

A not-so-happy Lainey! She was ready for everyone to leave her alone!

Lainey was a happy girl after everyone quit "bothering"her!

On Wednesday, Logan began PeeWee T-Ball! Although it is called PeeWee, Logan was not so "PeeWee" looking compared to the other children! This team is for 4 and 5 year old boys and girls. Logan just turned 5 but looks like an eight year old out on the field! After practice he said, "Mom I love t-ball and I learned a lot!" Unfortunately Liam is too young to play t-ball. He wanted to play with the big kids so bad that he threw a major fit! When all of the t-ball kids were off the field, my dad (aka Papa the Coach) called him out and told him to run around all of the bases! He was faster than any of the other kids! It was awesome because he crashed when we put him to bed!

Logan is wearing Papa's blue hat. They were learning to catch ground balls.

Liam played on the playground while Logan practiced!

Logan telling his new friends that his "name tag says that his name is Logan, but it is really Peter!" He wants his name to be Peter because he wants to be like Peter Pan!

On Saturday morning the Gainesville Parks and Recreation had their annual T-Ball, Softball, Baseball parade! It took longer to get the teams in groups than it did to see the complete parade from start to finish, but Logan had a blast. Liam and Lainey enjoyed watching their big brother walking in the parade!

Dawson and Logan at the parade.

There were 520 kids and 100 volunteer coaches!

Logan dancing to the music the DJ was playing!

Lainey watching all of the kids!

In addition to the fun time we had at the parade, my mom and I headed to a bridal shower and my dad took the boys to the park. Lainey was the hit of the party! Of course she smiled at everyone and chowed down on the homemade french toast!

This next week brings a lot of fun and not-so-fun things! Not-so-fun ~ CRCT testing! My first grade students will have to take a three hour test on Tuesday, Wednesday, and Thursday. BLAH! It is so hard for them to sit still for that long, since we only get one break in the middle of the test each day. Also, progress reports go home on Thursday, so I have a lot of work ahead! Fun ~ Lainey will be 11 months tomorrow. Time is flying by! Liam's birthday is Friday! I can't believe he will be 3! Liam is also going on a field trip to Elachee Nature Center with his day care class. We have been telling him that he will be able to go to camp this summer at Elachee if he goes pee pee and poo poo on the potty! Hopefully this trip will encourage him to use the potty so I can catch a break with buying diapers! This week also brings a wedding. My brother-in-law's brother is getting married. We love Chris and Kelly and are very excited for the two of them! It seems like just yesterday when they got engaged (although it was really July 4th)! The best thing of all ~ Sid's long clinical days are over! From now until he graduates, his clinicals will be 8 hours, so he will be finished with school Monday through Thursday by 3:00 in the afternoon! Now he will be able to go to Logan's t-ball practice and spend more time with the kids and I.

For now, I am off to my busy week! I will post pictures from our many events hopefully by Sunday!

DeAnn

Spring Fun!

It is that time of year again....Spring Break! Only, this kind of weather is not that of Spring! Yes, rain, 60 degree weather, pollen, and a week out of school is an indication that spring is here, but SNOW and freezing temperatures?

Our plan to camp at Stone Mountain park during part of our Spring Break was with hopes of good weather. When we left town on Thursday, we were far from having good weather! With thunderstorms, flooding, and tornado warnings, our vacation had an interesting start. Thanks to my dad, our camper was already set up in our camping spot when my parents, the kids, and I arrived at Stone Mountain around 9:00 Thursday evening. Sid was scheduled to work on Friday, therefore we left him at home!

It was rainy all day on Friday and I was stuck in the camper with 3 kids...one which was feeling less than par. Lainey looked as if she had pink eye and was running a low grade fever which caused her to be very sleepy. After a call to her CF doctor, Dr. Caplan, we had a prescription for eye drops and Bactrim. Sid finally made it to Stone Mountain around 8:45 and boy was I happy to see him!

On Saturday we had beautiful weather. Our friends Cindy and Sean, along with their kids Dawson and Kaylah joined us for a day of fun at Stone Mountain. We had a blast meeting Bob and Larry from the Veggietales, making bugs, riding the train, picnicing, shopping, watching the Back Yard Circus, grilling out, and viewing the Laser Show. The best part was when we tried to fit 11 people into my Ford Expedition EL! It is designed to seat 8 people...we managed to fit 11 and we could have fit more! We had about a 2 mile drive within the park to get from our camp site to the Laser Show lawn, so we were not cramped for long. Yes, we could have driven 2 cars, but it is VERY hard to park...plus my mother has a handicap pass, making parking a breeze! Sid and Sean sat in the front, Papa, Lainey, and Liam sat in the middle, Gigi, Dawson, Cindy, Kaylah, Logan, and I sat in the last row, and we filled the back with a wagon, double stroller, and a gazillion blankets! I think it took us loner to get in and out of the car than it did for the 30 minute Laser Show, but we had a ball!

Sunday was much colder, but the sun was out for most of the day. We took my parents over to Stone Mountain park and did a little shopping and playing. Everyone started breaking down around 1:00 because they were cold and hungry, so we went back to our campers. Shortly after we ate lunch Lainey began acting sick again. She started throwing up and was running a fever. Needless to say, she did not hold down much and was very lethargic. Sid watched Lainey and the boys during their nap time, while mom and I went to Target! We rarely get to go shopping without kids and it was so much fun to get out by ourselves!

Monday Lainey was still feeling crummy, but not throwing up. We had to call Eileen, our Littlest Heroes Project photographer, to cancel our session. I really wanted to have our pictures taken, but I wanted Lainey to feel up to it, plus it was super cold outside. The wind was blowing 45 miles per hour and it was 42 degrees! My sister and her husband had dropped Lilly Anne off at mom and dad's motor home around 9:00 while they went to Brad's pre-op. We all ate dinner together and I got some cute pictures of the girls, Gigi and Papa, and all the grandkids! I also managed to fit in a trip to Hobby Lobby, Marshalls, and T.J. Maxx(of course this was when the kids were taking a nap.)

Brad and Dayna left around 5:00 Tuesday morning for his surgery. Sid left for school shortly afterwards. The kids and I were in for the morning due to extremely cold weather and SNOW! Snow on Spring Break is wrong! I packed up the camper while the kids played, watched movies, and ate, and ate, and ate! Sid finally got back from school around 2:15. He worked on hitching the camper to the Expedition, putting away hoses, and preparing to leave while I took the boys to roast marshmallows and make smores. The boys had a bunch of firey, sticky, chocolaty, sugar high of a time! We hated to leave, but Sid had to be back for his 12 hour clinical on Wednesday and Thursday, and work again on Friday, Saturday, and Sunday. BLAH!

Brad's surgery went well. The doctor pulled 4 teeth and removed a large portion of his lower jaw bone. He was lucky in that the tumor was contained to one area. For two weeks he will be out of work and they will begin looking into options for replacement teeth. Dayna and Brad are very glad to have this tumor removed and the surgery out of the way. He is doing well and hanging out at home while vegging on ice cream and pain meds!

Well, just a few more days left of my Spring Break and then back to the grind! I had so many pictures from our Stone Mountain trip, that I made a slide show. Enjoy the pictures!

Make video montages at www.OneTrueMedia.com

DeAnn

What's Up Doc?

This has been a week of doctor visits for Logan, Lainey, Papa, and Gigi. Some reports were better than others. Some things we heard from the doctors we questioned and are still questioning. Hopefully now we will have a break from going to the doctor....at least for a couple of weeks!

Logan had his 5 year old checkup at the pediatrician's office on Thursday. He was above the 90th percentile for his height and weight! Although he is a big boy, weighing in at 64 pounds, the doctor was not concerned. He is also 45 1/2 inches tall, thus balancing his weight. Keeping him active and teaching him healthy eating habits is our main goal. Logan loves to eat, but he is also all boy ~ meaning he is always on the go! In addition to a full exam, Logan was the lucky recipient of 4 shots in the thigh! Needless to say this meant cornering him, carrying him to the table, and holding him down. He is still complaining about the pain in his legs from the shots! I am sure we will still hear about it for at least two more weeks! Other than yearly flu shots, he is finished with vaccinations until he is ten! Yeah....except I am not sure I will be able to wrestle him when he is ten if it is this difficult when he is five!

Lainey also had her checkup at the pediatrician's office on Thursday, as well as her monthly clinic visit at the Cystic Fibrosis Center on Friday. Dr. Onal, the pediatrician, is extremely thorough and is in complete awe of Lainey and her accomplishments ~ developmentally and with her health. Lainey hated his assessment of her ears, mouth, and stomach. She cried like I have never heard her cry before and continue to whimper even after his exam. Everything with exception of her eyes and a possible ear infection, checked out to be great. Dr. Onal has prescribed eye drops for Lainey's eyes and has referred her to a pediatric opthamologist. He suspects clogged tear ducts, but isn't convinced that what her eyes are producing isn't mucus related to the Cystic Fibrosis. Lainey didn't have to have any shots for her 9 month visit! YEAH!

Our visit to the Cystic Fibrosis Center was the best visit we have ever had. Lainey gained 2 lbs. 5.3 oz since her last visit in January, bringing her up to 18 lbs. 6.8 oz! Woo Hoo! 30 calorie Alimentum with Polycose Powder is our new BEST friend. She also grew another inch and is now measuring 28 1/4 inches long! Although she is still in the YELLOW ~ at risk, monitor carefully range, we are so close to seeing the GREEN! Dr. Caplan and Liz (the dietitian) were completely thrilled with her progress. From his examination, Dr. Caplan didn't think Lainey had an ear infection as suspected by Dr. Onal. He also acted as if it was completely normal that Lainey's eyes were draining and was somewhat confused about her going to the pediatric opthamologist. I am not sure if she should go or not.....Is it a CF thing ~ clumpy, yellowish-green junk in the corners of her eyes, and tears falling from the outside corners of her eyes? Is it necessary for her to go the pediatric opthamologist? Should she try the drops, then decide if the pediatric opthamologist is the next step? Ahhhhh.....Questions, but no answers.......yet! Not one thing about Lainey's medications or diet changed as a result of her visit today! The dietitian said she was fine with Lainey eating more high calorie table foods and drinking less formula. This was great news since Lainey is only consuming about 20 oz of formula from her bottle. We usually sneak formula into other meals through rice cereal, just to pack on the calories! The doctors have a goal of Lainey gaining 1 lb. 5 oz. by her next clinic visit on March 20th, bringing her to 20lbs!!! We are up for the challenge....now we have to get Lainey on board!

To kill several birds with one stone, Gigi and Papa scheduled their appointments for the same time as Lainey's. On Friday morning we left Gainesville at 8:30 am to head to Egleston and Emory. Papa dropped Lainey and I off at the CF Center at 9:50 and they headed over to Emory for their echocardiograms. *** My dad, Papa, had his aorta replaced in February of 2000 due to a tear in the mitral valve causing the blood to go around the aorta rather than through it to the heart. After his surgery, one of his lungs collapsed. Although the surgery and several days afterwards were emotionally and physically draining for all of us, he recovered remarkably well after being release from the hospital. *** The doctors continue to check on my dad's valve and high blood pressure. He went back to work shortly after his heart surgery and worked ridiculous hours. He was stressed out and it the stress showed it's ugly face by causing problems with his new valve. During that time he was diagnosed with stage 1 rectal cancer. He underwent surgery in October 2005 and now has a permanent colostomy. He caught the cancer early enough that he did not need chemotherapy. With the cancer added more stress to his new valve. The doctors now perform yearly echocardiograms to keep a check on the valve.

Lainey's CF clinic was over around 12:00, but Papa and Gigi had finished their echos, and were waiting to see their doctor in the Adult Cardiac Clinic at Emory. Finally my dad decided he had made me wait long enough and he came to pick Lainey and I up at the CF Center at 1:00. I would have walked to Emory, but it was pouring and we were under a flood watch! In the meantime, mom and dad's doctor was busy and she sent mom to the lab for several tests. After parking and traveling to the lab, she was still waiting. After the lab my mom was scheduled for a chest x-ray in the radiology building! Needless to say, this was nowhere close to her clinic. We waited for 30 minutes only to get a call from her doctor saying she was ready to see both her and dad! Without the x-ray we went back to the cardiac clinic! I am not sure exactly how long their appointment took because Lainey and I took a nap in the waiting room! We went back to radiology after mom and dad's clinic, only to wait an hour before my dad went to find out what was taking so long. They didn't have mom's paperwork because they had filed it after she left the first time! Amazingly enough it only took 10 minutes until they called mom back for her x-ray after speaking with my dad! We were finally finished with all of our appointments by 4:30! By the time we sat in rush hour traffic, picked Liam up at Aunt Dayna's house, and picked Logan up at Chick-fil-A where he was hanging out with his friend, it was 6:30 when we got to my parent's house!

Papa got a good report...well, according to what he is telling us! Gigi.....well, hers was not what we would have liked to hear. Her disease is progressing (read more about it here). The doctors are unsure if it is her heart that is causing her problems or if it is the secondary pulmonary hypertension. She is now on Lasix to assist in lowering the amount of fluid in her body. The amount of fluid in her body causes more pressure on her heart, thus making it work harder. If the Lasix works, then mom should feel better (less fatigued and less out of breath) by Monday. This means that her heart is the causing the majority of her problems. In saying this, there isn't much the doctors can do. The harder her heart works, the harder her heart gets, thus not working properly. IF the Lasix don't make her feel better, then it is the secondary pulmonary hypertension that is causing her to feel as she does. The doctors can do a few things for this, such as changing some of her medications and introducing some intense medications like Flolan. There are very few options left for my mom. We know she is a strong woman and will fight until the end. As anyone would, I hate hearing that there are few options left for my mom. She and I are best friends. We call each other at least 5 times a day and unless my parents are out of town, I usually see her everyday. Several years ago I vowed to myself to do for her what ever she needed. I also decided that I would spend as much time with her as possible. She and I have grown so close. We are always finishing each other's sentences, we have the same mannerisms, and we often say the same exact thing at the same exact time.

At times I am glad my husband is in the medical field, but at other times I absolutely hate what he knows. He tries very hard to cover up his feelings and answer my questions honestly. After shedding many tears last night, I have decided to look at some of my vows from several years ago. My vows will continue to stay the same, but I will be adding a few new ones. One vow is to come home on time from work 3 days a week (I often work until 5:00 when I am finished at 3:30). In doing this, mom and I will be able to go shopping. It will also provide her with a break from watching Logan and Lainey for an additional hour and a half. Another vow is to do even more to help her...whether it be to pick up groceries, pick up her medications, take her out to places she needs or wants to go, wash her dogs, vacuum, etc. I want her to be less stressed, less worn out, less out of breath....so she can be here for more years to come. I also vow to not dwell on "what mights" and "what ifs". I will enjoy the time we have together....and try not to focus on what I will do with myself when the time comes.

With all of the news we received at the numerous doctor appointments over the past few days, I can say that we are overall thankful for what God has given us. We still have each other and we are still hanging in there! Thank you for all of your prayers for our family. Please continue to pray for Lainey and my mom, Gigi! We feel all of your prayers daily!

With Love,

DeAnn

Counting Calories and Having Fun!

So......Just how many calories are there in a plastic spoon?

Lainey's new favorite thing ~ eating her spoon when she is tired of drinking formula or eating baby food!

This weekend the boys, Lainey, and I went to the local Home Show with my parents. Our home is fairly new, so I don't really know why I went other than it was an escape from the house! In addition to the escape, it meant that I had two other people helping me with my children for at least a couple of hours. Although one would think the home show would be boring to a 5 year old, almost 3 year old, and a 9 month old, the kids had a blast! They were some of the only, if not the only, kids at the home show. They racked up gathering free "goodies" from each booth! We now have mini flashlights, foam baseballs, potted flowers, notepads, pens, crayons, bandaids, coloring books, candy, and much more! I went to the Home Show several years ago and won a patio table and chairs, so that is always incentive for me. No such luck this year! I didn't win anything, but having a day of entertainment made me feel like a winner! Thanks mom and dad for getting all 4 of us out of the house! We had fun at the Home Show and enjoyed some yummy food at Brad's Grill (compliments of Gigi and Papa)!

The Bug!

Logan and the frog at the Home Show!

Liam did not want his picture taken....but here he is with the frog!

This week brings several appointments. We were suppose to go to the pediatrician's office and the CF Center last week, but our plans changed. The pediatrician was sick on Thursday, therefore Logan's 5 year checkup and Lainey's 9 month check up were cancelled. We are now scheduled to go this Thursday morning. I rescheduled Lainey's CF appointment because the boys were still under the weather from having Strep Throat. We will be going this Friday for her appointment at the CF Center, while Gigi and Papa go for their checkup at the cardiac clinic at Emory. This works out perfect because we can take one vehicle to Atlanta since the CF Center and Emory are next door to each other. I am also happy we are going the same day as my parents because now I do not have to find a babysitter for Lainey! Since my parents take care of Lainey, when they are traveling, at the doctor, or are sick, I must find another place for Lainey...or take a day off of work. I like being home with Lainey, but I am trying to save my days for our Disney Cruise in October and incase Lainey were to get sick. Thanks to Josie's mom, Kay, Lainey usually has a place to stay when Gigi and Papa are not available!

Please pray for good visits at both the pediatrician's office and at Lainey's CF clinic. We are hoping that Lainey has met our goal of 18 lbs! Check back later this week for updates on our visits! :)

BYE!

The Smithsons

PediaBlah!

A PediaSure - Free Girl!

Needless to say, the PediaSure was not a hit! Lainey absolutely hates PediaSure ~ Strawberry and Vanilla. The first time I introduced the strawberry PediaSure, she drank it all. I was ecstatic, until the next feeding. She refused to open her mouth although I know she had to be starving. As a last resort I tried giving her Alimentum again...and that worked!





This weekend was horrible because I fought with her over every feeding, not to mention that Sid worked 6:30 am to 7:30 pm on both Saturday and Sunday. It also rained and the boys were wild! Lainey was extremely sleepy and somewhat lethargic, therefore I decided to stay put at the house. Can you say cabin fever? By Sunday afternoon I was sure someone in our house would be hurt if we did not have a break from each other! Thank goodness for Papa Dwight...he picked Logan up and took him to work in the motor home and then back to their house. It is amazing how well behaved Liam can be when he doesn't have an audience!





Gigi and Papa came over to eat chicken enchiladas with us on Sunday evening. Gigi worked her magic and was able to get Lainey to eat 4 oz of formula and eat a HUGE bowl of rice cereal! Gigi can always get people to eat...just look at Sid, Logan, Dayna, and I! Thanks to her, the four of us are always trying to watch our weight! Unfortunately, Liam wasn't letting her talk him into eating. He ate four cereal straws, a cup of Gold Fish crackers, and drank 5 cups of chocolate milk for the day. Lainey gladly shared her PediaSure with Liam and he drank about 4 oz. We are planning to continue giving Liam the PediaSure when he refuses to eat, especially since he has lost 5 + pounds since April! We really need to have him retested for CF, I just can't bring myself to torturing him again! I nominate Sid to take Liam for the bloodwork! :)





The CF doctor, Dr. Caplan, called today to check on Lainey. He was sure she would love the PediaSure, but since she didn't he adjusted her diet again. She is now drinking 27 calorie formula. She ate well today at Gigi's house, so hopefully she will continue eating. Her goal weight for our Friday CF visit is 17 lbs., but I know we won't even be close. We will be lucky if she weighs 16 lbs. since she has lost 4 + oz. in the past few days. If it were possible, I would gladly give her some of my hunger and weight!





Today Lainey received her 2nd flu shot. She has now completed her flu vaccination. On Wednesday she will get her Synagis shot. Friday we will go to the CF Center for her monthly checkup. My new insurnace company will not like us after Friday! The suggested pick of insurance was the HRA plan. The first $1750 of medical bills is paid out of our "pot" of money, then we have to pay $1250 until we meet our out of pocket deductible. Since Lainey has Medicaid as secondary insurance, I am assuming/hoping it will pick up the $1250 out of pocket portion. We will have met all of our deductibles and out of pocket expenses by Friday if not before then! The thing I am nervous about is what mom heard on tv today. She heard that some doctors can refuse HRA patients unless it is an emergency because the insurance company will only pay them at a very discounted rate. I am praying this is not the case since we will have met everything with only 16 days into this new insurance policy! Why do they have to make insurance so complicated? AHHHHH!





Hopefully the 27 calorie formula will fatten Lainey enough to at least reach 16 lbs. by Friday and that our new insurance will be the right choice for the kids and I this year. Please pray that all goes well with all the appointments this week. I know I can count my blessings if all I have to worry about with Lainey's CF is poop, eating, gaining weight, and insurance! There is so much we have to be thankful for!





With Lots of Love,


The Smithsons