The BIG Man is 5!!

5 years ago today, my sweet Logan James was born! 14 hours of labor, 10 minutes of pushing, and 1 wonderful epidural later, at 3:58 pm my 8 lb. 13 oz, 21 inch baby boy was born! Having only 2 veins versus 3 veins in his umbilical cord and having it wrapped around his neck 3 times, I was unable to hold him until after 9:00 that evening. I was a mom, which soon proved to be more stressful and painful than I ever imagined! Logan never got enough food through nursing and often spit up most of his food. After adding Zantac, Soy formula, and rice cereal to his diet, plus making it through three months of Colic, he was a wonderful baby! As for me....When Logan was 1 week old I was in the ER! I began hemorrhaging and running a fever of 103.9. After 4 days in the hospital, a fever averaging 103 degrees, 5 antibiotics, a cooling bed, no eating, 24 hour supervision, ultrasounds, and sleepless nights, I was eventually released. It was later determined that some of the placenta was still attached to my uterine wall, thus causing an infection! And of course the same excuse was repeated throughout my stay in the hospital and even in the weeks afterward..."It is because you are a red head!" Supposedly red heads are at greater risk of infection, low blood pressure, bleeding, passing out, and many more issues!

Logan shares his birthday with Abe Lincoln, or as he says it "Haberham Lincoln." He requested a party at school consisting of cupcakes (because "cake is not allowed" ~ per Logan), Capri Sun, and goodie bags! I was able to take about 45 minutes off of work to celebrate his birthday with his pre-k friends! Logan thought everything was the coolest and required me taking a picture!

The Birthday Boy!

Logan and his pre-k friends!

Later in the evening we celebrated Logan's birthday by eating pizza and cupcakes! We invited several family members, but some were unable to make it to the party. Gigi and Papa let us celebrate at their house with Papa Dan and Rachel and of course Sid, Liam, Lainey, and I. Logan got so many presents he wasn't sure what to play with first! Grandma Barbara and Great Grandma Smithson were unable to make it to the family party, but they sent a lot of gifts. He is having a blast with all of his cool new toys...that he really didn't need because we already have a ton of toys at our house! Thank you to everyone for the awesome gifts. His birthday wish ~ "Mom won't yell at me when I do things I am not suppose to do!" AHHH...way to make me feel like a loser! Thanks Logan James!

Logan showing off his new Power Rangers!

Papa Dan. Logan, and the Red Ranger helmet.

Logan making his birthday wish.

Papa Dan and Lainey Bug

Liam eating a cupcake...yum!

Today I also had a follow up doctor appointment with the endocrinologist. Blah! For some reason my prolactin levels are still elevated (prolactin causes you to lactate, when you are nursing and sometimes when you are not nursing). They were actually higher than they were in September and November when they were last tested! I will continue taking the Cabergoline to help with this issue. My iron was still low even though I am taking a daily iron pill. My estrogen was still low, but not as low as before (was 7, now 22, should be around 500). Hopefully my prolactin levels will decrease and as a result the estrogen increase. If that does not happen, it will be determined that my pituitary gland is no longer working and I will be put on estrogen. My vitamin D also continues to be low...lower than it was in September...and with me taking 5,000 units per day and an addition 50,000 units per week to total 85,000 units per week! The recommended level of vitamin D is at least 32...mine is 19. I guess I will have to lay outside in the nude....just kidding....I don't want my neighbors to move or die for that matter! :)

I have also gained a bad amount of weight...Not cool since I have been trying to lose weight! Hopefully since the doctor has taken me off of one of the two birth controls I have been taking to raise my estrogen, I might lose some weight!

I also went to the Health Department today for Lainey's WIC checks. I did not have to wait very long before they called my number! Hallelujah! Of course I had several little people come up and give me hugs because they know me from school. I was just thankful that it was fairly calm around the Health Department. I also saw my friend Cindy's husband. On his off days he is the police officer on duty for the Health Department. Talking to him made the time go by so much faster! Thanks Sean for making the time fly by and more bearable!

The nurse at the Health Department said that although Dr. Caplan wrote a prescription for Alimentum and Polycose, I would get more from receiving checks for Alimentum without Polycose. The nurse wants me to try to get Medicaid to pay for the Polycose and more cans of Alimentum per month. She had tons of questions about Lainey and her nutritional needs. It always amazes me to talk to people in the medical field who are completely out of the loop when it comes to CF. I allowed her to give me nutritional advice, but also told her that I would only follow what Lainey's dietitian at the CF Center says because she works with CF on a daily basis. The next time I go back for WIC checks, Lainey will be 1! Yea, no Health Department for 3 months!!

Look for more birthday pictures next week! On Monday, Logan is having his birthday party at Monkey Joe's!

DeAnn

Relief!

This week has been wild! Saturday Lainey went tailgating for the first time at the Georgia game. She stayed in Gigi and Papa's motor home due to the heat, but didn't miss a thing. She watched everyone and everything going on around her! We had a blast.

On Monday we received a letter and a card stating Lainey's approval for Medicaid through the Katie Beckett/Deeming Wavier. Lainey's Medicaid goes back to the day she was born, meaning every one of her bills is being covered 100%. This is such a relief since she accumulated a number of bills being in the hospital for 29 days. In addition, when receiving Medicaid, you automatically qualify for WIC. After 2 hours of sitting in the local Health Department with some of the children that attend Fair Street School where I work, we received numerous vouchers that are good until November. Each month we will be able to get 8 cans of Alimentum formula. This is approximately $250.00 worth of formula! Since I am a post-partum mom, I receive a box of cereal, 4 bottles of juice, one dozen eggs, 3 gallons of milk, and 2 pounds of cheese each month until Lainey is 6 months old. She will continue to get WIC vouchers until she is 5 as long as we continue to receive Medicaid. This is this answer to many of my prayers!

Along with all of the other wild things going on this week, we have changed Lainey's enzymes again. Now she is taking 2 Ultrase enzymes before each meal. I am not so sure they are any better than what she was on before, but we are willing to try anything to make our princess's life better! It seems as though she is having more bowel movements than before. With each bowel movement, her little bottom gets more raw and bleeds. We have been through more tubes of "butt cream" than we can count! After running out of samples of Ultrase given to us by Lainey's CF doctor, we picked some up at the pharmacy.....and this is where additional WILD things occurred! Somehow the pharmacist misunderstood the doctor when he called in the prescription. The prescription I picked up was Ultrase, but not the dosage she had been taking. Ultrase MT 12 was filled for Lainey. Not paying much attention, I picked up the enzymes from the pharmacy and packed them in Lainey's luggage for her trip with Gigi and Papa. After using the new enzymes for a day, my mom made me aware of the numerous differences in the new prescription when compared to the samples given to us by the doctor. After researching the different types of Ultrase enzymes via the internet, Sid and I realized a major difference. We advised mom to cease the new prescription and continue using the samples. On Thursday I confirmed our concerns with Dr. Caplan. Although he called in a specific prescription, the pharmacist filled it with a similar, yet stronger dosage than prescribed. We were giving Lainey 2 capsules of the new prescription, which gave her 15,000 more units of the active ingredient than needed for someone her size! No wonder mom hadn't changed any poopy diapers! Her doctor said that she was absorbing fat like we want, but the new prescription was also causing her to absorb her own waste! NOT COOL! We are thankful that mom caught this when she did or we could have one sick little girl on our hands. Currently we are still working with the pharmacy to "fix" this mix-up. This has definitely taught me to check all of her medications very carefully before administering them.

This weekend will continue our WILD week as we have been cleaning and preparing our house for Dayna's baby shower on Sunday. Knowing that I am beat when I get home and that I have the kids all day by myself on the weekends, my mother-in-law hired a maid to clean my house! This was an awesome surprise and my house is happy to have had a deep cleaning! In addition to the cleaning, Sid and his mother worked hard to make our yard look beautiful. I find it humorous to know that now I would rather have my house cleaned than go shopping for new clothes!!!

Thursday the boys underwent their Cystic Fibrosis tests. WOW! It took 4 adults to hold Logan down long enough to get 3 vials of blood. Liam was upset for a few seconds and then all was cool! I'm not sure he feels pain! :) It is recommended that siblings of children with Cystic Fibrosis are also tested. Hopefully we will have good news ~ neither boy has Cystic Fibrosis. The test will not only let us know if either boy has Cystic Fibrosis, but will alert us if they are carriers of the Cystic Fibrosis gene mutations effecting Lainey. We should have their results within the next couple of weeks.

Today I received my Cystic Fibrosis test results for last Thursday's test. The results confirmed my contribution of the delta F508 gene. This is the gene all Cystic Fibrosis patients carry. The mutation of the gene can also be another delta F508 or one of the other 1500 + mutations. Since Lainey has one delta F508 and one R560T mutation, we now know that Sid is the carrier of the "odd" mutation. I think we should have known that Sid would have been the one with the "odd" mutation!! The purpose of my being tested was solely for determining which of us carried which gene. In addition to finding out this information, I also learned that my prolactin level is high. My doctor is sending me to an endocrinologist for further testing. I am hoping this helps in finding the cause behind losing my hair, lactating, and several other odd symptoms I have had for a while.

On Wednesday Lainey's has an appointment at the Cystic Fibrosis Center. We are praying that she weighs at least 13 pounds and that her lungs are clear of bacteria. This would be a gain of 2 1/2 pounds. She is really growing in length, but is still skinny! She is finally wearing 0 to 3 month clothes ~ and she will be 4 months old on Saturday the 20th!

Sunday, September 21st is Lainey's Baptism. We are inviting all friends and family who wish to attend to join us at 10:55 am in the Sanctuary of Gainesville First United Methodist Church.

Thank you for all of your prayers! Please continue to pray for us as we receive news on the boys' Cystic Fibrosis test results and in Lainey's appointment at the Cystic Fibrosis Center.

DeAnn

Lainey's Baptism and other GOOD news!

Life at the Smithson house has been wild! Logan has started pre-k at Enota Multiple Intelligences Academy, Liam continues to keep the daycare workers on their toes at the Wee Elephants Daycare for Gainesville City Employees, and Lainey is having the time of her life hanging with Gigi and Papa every day! Sid is in school 4 days a week and works 12 hour shifts the other 3 days, yet manages to make A's and B's in his classes!! He is going to be an awesome Nurse....one day! I am spending everyday with kids, kids, and MORE kids! After dropping off my own three kids each morning, I go to work to teach 20 first graders! Although the weekends are long and often quite stressful, I am beginning to take on the challenge of caring for 3 children on my own with a little "risk-taking!" For all who know my need for organization, mess-free environments, and scheduling, I am proud to announce that I, DeAnn Smithson, let my kids play with Play Dough this past weekend! They could not mix the colors, but they didn't care because mom was actually letting them play with something that might potentially cause a huge mess (not to mention Liam might make it a new meal!) As Logan would quote the chunky boy on the AIG commercial...."Things are looking up!"

Lainey is being Baptized and we are happy to invite anyone whom would like to attend! Lainey will be Baptized on Sunday, September 21, 2008. The church service is at Gainesville First United Methodist Church and begins at 10:55 am. Our preacher, Dr. Terry Walton, will be performing his non-traditional, yet overwhelmingly personal baptism. He has his traditions of lighting a candle to show the baby the "light of the World," taking the baby around the congregation for each to greet her with a smile and a touch, and giving the baby a taste of salt to experience the "salt of the Earth." Lainey is sure to enjoy and benefit from the extra salt offered by Dr. Walton! Sid and I are thrilled to profess our faith and promise to raise Lainey in a Christian home. For it is this faith that has pulled us through the tough times, given us the strength to persevere, and filled us with the wisdom we need in order to follow God's intentions. We would be honored to share this special day with all of our friends and family.

Good News! Our family has been approved for the Katie Beckett/Deeming Waiver. This waiver is designed for families with children with special needs whom do not qualify for Government assistance due to income. Through this waiver we qualify for WIC and Medicaid. WIC will take away the burden of paying $26 every four days for formula by giving us vouchers to use as our method of payment. Medicaid will cover all of Lainey's hospital, doctor, and pharmacy bills that are not covered by insurance. This is HUGE! The copay paid each time we take her to the doctor (usually twice a month), the 10% of hospital stays not covered by insurance, the $25 for each of her 4-5 prescriptions per month, as well as any other equipment we may need, will be completely consumed by Medicaid! We feel like an enormous weight has been lifted from our shoulders, and for this we are thankful.

Although we have changed brands of enzymes several times in the past 3 weeks, we now feel as though we have found the culprit of Lainey's recent issues. Lately she has had a lot of gas, stomach aches, spitting up, fatty stools, and small amounts of weight gain. In conversations with Lainey's dietitian, by accident (although good), we found our mistake. Sid and I watched the nurses in the hospital crush Lainey's Prevacid tablet before feeding it to her. After a little research, it was determined that crushing the tablets deactivated the antacid, thus no help to Lainey at all! Now she is taking 1 Prevacid capsule twice a day along with her Creon. We mix the beads with applesauce and serve it all at once. It has been amazing how settled her stomach sounds, the fewer number of stools per day, little to no spitting up, and an overall happy baby we have! It is our hope that through these changes, we will see a greater weight gain at her next Cystic Fibrosis appointment on September 17th!

Thank you for following Lainey's progress. We are fortunate to have such a sound and supportive group of people in our lives. Lainey has finally had the chance to be held by Sid's dad, Papa Noel...and boy did she like it! Her grandma Barbara and Gigi have been spoiling her with all of the cute things the stores have to offer little girls! Papa Dwight and his ticking valve put her to sleep in no time. Although Papa Dan isn't as comfortable taking care of babies, he has given Lainey and I time to bond by taking Logan and Liam out on the lake and to the pool. For an extra set of hands on the occasional weekend, Grandma Carolyn and Papa David have been here! PLEASE come to visit Lainey if you want....soon we will have to limit visitors due to the "wintertime bugs!"