Clemson Tailgating

My best friend, Amy came from Memphis last week.  I was so glad to see her.  Even though we don't see each other often, each time we see each other it's like we never left.  I'm so lucky to have a friend like that.  We decided to tailgate so she could really experience Clemson football. We had a great time!  The Buzzells joined us too!

So, I started back to work on Monday.  I'm still having mixed emotions about it.  Leaving Lauren Monday was probably one of the hardest things I've had to do.  She's at First Baptist Clemson, where Alli is, so I feel good about that.  The pulmonologist gave us the green light to let Lauren try daycare since it's a small church one, so we'll see how she does...our prayer is that she continues to stay healthy and her cf is the mildest possible.  The daycare is bending over backwards to accomodate Lauren, and I really can't ask for more than that.

Alli is doing great in preK-4.  She's learning a lot this year so far, and we are pleased.  Alli is a great big sister.  She is very protective of Lauren.  She knows Lauren is sick, but is still having a hard time understanding that it's pretty serious.  She's had some allergy issues this week, so we have tried to keep the 2 as separated as possible, in case Alli does have a slight cold...I can tell this is going to be very difficult because Alli loves being around Lauren.

Lauren is doing well. She's at 9lbs 10oz!  She finally made it into 0-3mos clothes!  We're all getting used to our new routine.  Thankfully, Lauren's pretty happy-go-lucky.  The only time she fusses is when she's hungry...but, who doesn't?

Lauren's got a busy week with doctor's appointments next week.  On Tuesday, she goes back to Dr. Snodgrass, the pulmonologist for a check up.  I believe they will draw blood to do her genotyping.  This is where they will determine the type of cf mutation she has.  There is a correlation between the type of cf and severity of the disease.  Finding this out will also determine most effective medications in the future.  We will also be ordering the nebulizer (just to go ahead and have for when she needs it)...hopefully, insurance will not be an issue.   On Thursday, she goes to her pediatrician for her 2 month check up and shots...poor thing!  We did get back the results from her throat culture and they were as expected, nothing concerning.  She will have this done every 3 months as a check of what is going on in her lungs.  The test they did to check how her pancreas is functioning also came back as they expected...it's not functioning properly, so that's why she's taking the enzymes to help her absorb food.

Our Cystic Fibrosis Journey

Lauren's 2nd screen came back abnormal again, so we were scheduled to have a sweat test at GHS.  The sweat test is the "gold standard" for diagnosing cystic fibrosis.  The pediatrician's office thought it would be a good idea for both girls to be tested although Alli has shown no symptoms.  Both girls did really well.  The sweat test consisted of electrodes being placed on their arms to stimulate them to sweat, then a collection device was taped to their arms, and the sweat was tested for the amount of sodium chloride present.  A high level indicates cystic fibrosis.  After the sweat test was completed, we had an appointment at the pediatric pulmonologist to get the results and make a plan.  Unfortunately, Lauren's result was positive for cf.  Alli's was fine.  The pulmonologist sat down with us for quite a long time, and discussed where we would go from here.  The cf diagnosis explains her slow weight gain, so she was put on pancreatic enzymes to supplement what her pancreas isn't producing.  She was also put on a "super" vitamin since she doesn't absorb nutrients well.  We give her the enzymes mixed with applesauce before each bottle to help her digest and absorb what she's eating.  She's really liking the applesauce.  We went back to the pulmonologist last Tues., and she had gained 4 ounces in 4 days, so they were quite pleased.  We also dropped off a poop culture so they could check how well her pancreas is functioning.  She also had a baseline throat culture done.  Since she had done so well in weight gain, we don't have to go back for a month!
Since being on the enzymes, she seems to be gaining weight.  She hit 8lbs over the weekend...maybe we'll get to wear some of the 0-3 mos clothes soon!  We're getting into a routine with giving the medicine.  The doctor told us to treat her like any other new baby, but to just be careful in exposing her to sick kids.  Another facet of cf is that cf people don't produce much mucus in their lungs like us, so that makes them more susceptible to lung infections because the bugs get stuck in the sticky mucus they do have in their lungs.
We have told Alli what is going on with Lauren, but she doesn't understand the seriousness of the disease because Lauren doesn't look sick.  That's what's hard for us too.  The past 2 weeks have been a roller coaster for us.  It's hard as a mom to know there is something wrong with your child, but their is nothing you can do to change things. 
The prognosis for Lauren is good.  The pulmonologist told us he expected Lauren to have a college fund, a wedding fund, and to even have kids.  We were relieved to hear this.  Cf has come a long way in treatments even in the past 5 years.  We now know this diagnosis is not the end of the world...it just changes the way we do things at our house.  The pulmonologist has even given us the green light for Lauren to go to the same church daycare Alli goes to, so she will start Sept. 17, and we'll see how things go.
Our prayer is that Lauren has as few symptoms as possible, and that she stays as healthy as possible.  We know that God has big plans for Lauren, and he has Lauren and us in the palm of his hands.  Please continue to pray for us and Lauren.  For more info on CF or to donate:  www.cff.org