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

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

When it rains, it pours....and we are in a monsoon!

Liam tailgating at the Georgia game.

The Smithsons definitely love each other, but we have been spreading more than love! Liam had a fever of 101.4 on Sunday night, leaving us no choice but to resort to our emergency plans on Monday morning....Gigi and Papa! Thankfully they were able to watch him while Sid was at school and I was at work. How it breaks my heart to go to work instead of taking care of my children when they are sick! In all efforts to save my sick leave for a "rainy" day, I had no choice but to leave him at mom and dad's house. Fortunately we had previously scheduled an appointment with Liam's ENT that was conveniently scheduled for 3:30 on Monday! This appointment was scheduled to discuss and determine Liam's need for the removal of his tonsils. With one AHHHHHH, Dr. Stewart confirmed Liam's second case of tonsillitis in a month. He had just completed his 10 day round of antibiotics for bronchitis! We have scheduled to have his tonsils removed, a bilateral earwax removal, removal of his adenoids (which were removed last December, but are growing back in the form of scar tissue), and to place new ear tubes (this will be the third pair!) His surgery is on Wednesday, October 15th at 6:00 a.m. Hopefully this will be the answer! Dr. Stewart thinks this should solve his problems with constant ear infections, respiratory infections, and throat infections, as well as improving his speech, snoring, and constant drooling. If only it would help with Liam's anger management!

Lainey at the Georgia game!

Wednesday is also a big day for Lainey! She will be receiving the first of eight Synagis shots for the prevention of serious illness related to RSV. The home health care nurse will come to mom and dad's house to bring a digital scale and administer her Synagis shot. Two days before each shot we will call the suppliers of Synagis to report her weight. Knowing her exact wight is vital in determining the correct dosage of Synagis. Each shot costs $2300! The doctor wanted these shots to begin in September and last through April. Obviously the insurance company didn't agree with the doctor, thus the reason for beginning a month later! After an appeal from the distributors of Synagis, the insurance company agreed to continue Lainey's monthly shots through April 14th.

The sick Logan James!

Last night Logan went with Gigi and Papa in the "big bus" to begin tailgating at "the Georgia." Around 10:30 mom called to report that Logan was complaining of a headache, had a fever, and was throwing up! At least he made it to the toilet when he felt sick! This happened to be exactly two weeks from his confirmed case of strep throat, and just four days from the completion of antibiotics! Now we are hoping Liam does not get this stomach bug which could possibly postpone his surgery. Although Logan is feeling a little better, he is still feverish as I type!

"Oh really?"

Wednesday evening when I finally got around to opening the mail, I found a packed envelope from the endocrinologist. I had blood work drawn two weeks ago and an MRI brain scan one week ago, with no call from her. It was then when I understood why she had not called me with my results! She mailed fifteen pages of test results and prescriptions. With the 3 tubes of my blood they found several things. My red blood count, hemoglobin, hemocrit, and Ferritin was low. It was determined that I am anemic, therefore I am now taking iron supplements daily. It was also determined that my vitamin D levels were low. Once a week I take 50,000 units of vitamin D. My serum prolactin level was high, so I am now taking medication twice a week to lower these levels. Neither the doctor nor I know what has caused these level to be higher than normal, therefore I will have it checked regularly. My estrogen level was also extremely low. For a female of my age, the reference range is 19 - 528 (and should be at the higher end). The test showed my estrogen level to be 7, that of a postmenopausal female with no treatment. This low estrogen level may be related to the elevated prolactin level and will be monitored through blood tests. Last, but not least, my kidney function was low. Tests on my kidney function will be performed regularly to rule out chronic kidney disease. The other tests were normal, including the MRI brain scan. I was worried they might not find a brain!

Lainey and Uncle Brad hanging out in Gigi and Papa's motor home.

On Monday Lainey will go see Dr. Caplan for her monthly visit. Maybe she will weigh 13 and one half pounds...this is my goal! She has been eating rice cereal daily, which has helped lower the number of poopy diapers we change per day! Mom and dad will watch the boys since they are out of school on Monday for Columbus Day, while my friend, Jenn, Lainey, and I go to the CF Center. I will try to report about Lainey's doctor visit and Liam's surgery on Wednesday.

Thanks again for all of your prayers! Hopefully we will get a break with illnesses, for the sake of our health and wallet! In addition to the amount we are spending on numerous doctor visits, we were just informed by Liam's daycare that the fees are increasing. We will pay an additional $40 per week beginning in November. This will bring the total to $525 per month, not including his lunch and snacks! We are thankful that mom and dad are able to watch Lainey! Daycare for the two of them would cost roughly $1100 per month. Due to this increase, Sid will be picking up a few hours on Monday and Tuesday after school. It makes it harder on all of us when Sid has to work more hours, but we just thank God that we have that as an option when times get rough! Although it is hard to see at times, God really is Good! Continue praying for us ~ especially for Liam during his surgery on Wednesday and Lainey with the beginning of her Synagis shots.

Much Love,

The Smithsons

Growing

Today we went to the Cystic Fibrosis Center for Lainey's 3rd visit. Since this time last month Lainey has grown 1/2 inch and gained 1 1/2 pounds. She is now 23 1/2 inches long and 10 lbs. 15.9 oz! Still not the 3 lbs. they had wanted to see (she is still in the 10th percentile for weight), but we are working on that. Due to the frequency and consistancy of her bowel movements, it has been concluded that changes with her enzymes need to be made if we wish to see an increase in weight. To assist in weight gain, Dr. Caplan decided to try upping her enzymes to 2 per meal and taken in applesauce. Originally we tried the applesauce, but it was way too difficult to feed it to a newborn. Now she is loving the addition of applesauce and doesn't seem to mind the new requirement! The thoughts behind the applesauce are that the enzymes will make it to the small intestine before the formula. This is important because the enzymes aid in digestion, fat and vitiamin absorption, and in the end ~ weight gain. If after a week of using this new regimine we don't see any changes in the number of bowel movements she has per day (4 or less), we will then change to another brand of enyzmes. As we have learned, this is a trial and error situation. Every person with CF is different and their body's needs are constantly changing.
As for Lainey's lungs, all is clear. We have been worried about her lately with her sinus drainage, cough, sneezing, and stuffy nose. Thanks to the antibiotics and chest physical therapy, Dr. Caplan was happy to report that all sounded nornmal in her little chest. We will be working very hard in the following months through the cold and flu season to keep the germs away. These will be challenging months, especially with myself working with 20 first graders, Logan in school, Liam in daycare, and Sid working in the ICU. Hopefully we can keep any and all illnesses to ourselves! To aid in her protection against RSV, Lainey will begin taking Synagis. This is very expensive and will take from September to April for Lainey to receive the entire dose. A nurse will come to the house once a month to give Lainey her shot. We will have to weigh her on a digital baby scale (they will provide) and call in her weight to assure she receives the appropriate dosage. Thank goodness for insurance!
Overall, today's visit was great. She is continuing to grow, have good chest sounds, and most importantly, she seems completely content with everything! The doctor did send CF testing kits home for us to collect cell samples from Logan and Liam. We are not sure how long it takes to receive the results, but we will keep everyone posted. I will be tested at Lainey's next visit. On September 17, both Gigi (my mom for those of you who do not know that Gigi is her name to Logan, Liam, Lainey, all of their friends, as well as their teachers) and Lainey have appointments in the same area. We will go to mom's cardiologist at Emory first and then to Lainey's CF appointment.
Thank you for all of the encouraging words, thoughts, and prayers. Please help us pray for good health and an uneventful winter in relation to Lainey's CF progression. We are lucky to have such wonderful friends and family, for they are the ones that keep us strong! Thanks to my parents, Lainey will have a more protected winter by staying at their house.