Getting ready for the holidays

So, we're all decorated, and Alli's been to see Santa 3 times already!  On Alli's list is a dreamlite, a stuffy, (thanks to the infomercials on Sprout) and some surprises.  She has also requested a sheep for Lauren...  Maxi, our elf made her grand appearance last Sunday, and has been flying back to the North Pole nightly to report the girl's behavior to Santa.  She's even left Alli a note.  Alli was very excited to receive this special "mini" note.  She had to take it to school that morning and share it with her class.
 Alli is so kind hearted.   She's very sensitive to and perceptive about other people's needs and tries to always be motherly and take care of people.  Every time we see one of the Salvation Army bell ringers, she insists that we donate.  She has even said "take it out of my money."  In our hurry to get out the door in the mornings, I forgot her naptime mat and pillow pet on Monday, and her cup today.  Her response both times was "It's ok Mommy, I'm not upset with you.  You have a lot in your head.  Don't worry about me."  I'm so proud of her for being so understanding and compassionate.  Sometimes, her reactions really surprise me, in a good way, and I feel so proud!
Last week, we went for Lauren's 4 month check up at the pediatrician.  She did good considering she had to get 2 shots and an oral vaccine (she doesn't mind the oral vaccine since it's sweet).
Here are her stats:
weight: 12lbs 9.5oz (17th percentile)
height: 24.25in (35th percentile)
head circ.: 16in (29th percentile)
Last week we also received the results from Lauren's genetic mapping.  Lauren's mutation is known as the delta F508 mutation.  To have CF, you must have 2 copies of a defective CF gene.  There are close to 1000 possible different mutations.  Lauren has 2 copies of the delta F508 gene.  The good news is that this is the most common CF mutation, so the majority of research done focuses on this.  80% of people with CF have at least 1 copy of this gene.  50% of those folks have 2 copies.  There are 5 classes of CF mutations, 1-5.  1,2, and 3 are considered "more severe."  "More Severe" meaning both the digestive tract and the lungs are involved.  Lauren's mutation falls into the Class 2, so is considered to be more severe.  I knew in my head this was going to be the case, but was hoping and praying that it wasn't.  We won't know how involved her lungs will be until she gets sick.  Not much changes now that we know this information.  Once she gets older, it will mean there will be certain drugs that will be tailored for her specific type of CF.  Most of these drugs are in clinical trials now.

Our immediate prayer is that God continues to protect Lauren from getting sick.  With the cold and flu season upon us, it's becoming increasingly harder to keep her away from sick people.  Our other prayer is that one of these drugs that are in the pipeline will be the magic cure.  We're trying to take things one day at a time.  We know God has big plans for Lauren, and are looking forward to Him revealing them to us.

 

Happy Thanksgiving!

There are so many things we are thankful for this year...
our Lord and Savior who has us wrapped safely in his hands even when we question him
our 2 sweet girls
our family and their support
our friends and their support
the love and support of our church
Lauren and Alli's teachers and school, who have bent over backwards for us
our home
our neighbors
our jobs
our health insurance
the list could go on and on..
Since Lauren's birth and diagnosis we have been overwhelmed with prayers, love, and support, and we couldn't thank everyone enough!

With all of that being said, things are going well in the Sielicki Household.  Surprisingly, we have all managed to stay well amongst all those who have unfortunately come down with colds, flu, and stomach viruses so far...that has been our prayer to keep us all as healthy as possible to keep Lauren healthy.  We received some of Lauren's blood work results.  The CBC, metabolic panel, and vitamins A, E, and K levels were all good.  Her vitamin D level was on the slightly low side, so the doctor is consulting with the nutritionist to see what, if anything we should do.  We should be getting her genetic mapping back early next week.  On a good note, I weighed Lauren last night and she's up to 13lbs!!  I had to weight with her 3 times because I couldn't believe it myself.  She's gained about a pound and a half in 2 weeks!  I guess increasing her calories is really helping!
Within the past week, she's started being more vocal, can sit up (assisted), is grasping toys, and is starting to get the hang of rolling over!  We also let her try a little rice cereal...she's not so sure about it.
Alli is doing great.  Now that Lauren can do a little more, she enjoys playing with her.  She has become quite independent.  We're starting to work on tying her own shoes.  She now has chores she does for an allowance.  She loves clearing the dinner dishes and making her bed...I'm sure that won't last!!  She only has 2 weeks left of gymnastics this semester.  I think we'll let her continue in January since she is enjoying it so much. 

Quick doctor's visit update

Lauren went for her big appointment on Tues.  She's doing well.  She weighed 11.29lbs (with clothes on), and was 23 in. long.  She's still in the 10th percentile for weight, so they've changed the way we mix her formula so that she gets more calories.  They also added Xantac in to her drug regimen.  She also had a routine throat culture done, her first Synagis shot, and blood work.  It was a long morning!  Lauren was quite the trooper through it all. 
I was really anxious about the blood work.  I have heard that sticking infants is very difficult, so heard many horror stories.  Luckily, that wasn't our experience.  They did have to stick her twice, but that wasn't because they missed her vein, it was because the one they hit was a slow bleeder, and they had to fill 3 purple cap tubes.  If they wouldn't have stuck her the second time, we probably would have been there 20 minutes.  Instead, we were only there maybe 5.  Lauren fussed when they put the turnicate on her arm, but as for the actual stick, she didn't even flinch...that was probably because my job was to dip her binky in sugar water, and she loved that!
We should start hearing back from the routine blood work (cbc, metabollic panel, vitamin levels) this week.  We aren't anticipating anything out of the ordinary for that.  It should be a baseline for her.  The genetic testing will probably take 4-6 weeks to get back.  Once we know the mutation(s) she has, we can get an idea of the severity of the cf.  The drug companies are also tailoring drugs for mutation specific cf cases, so will know which drugs she will be eligible to take.  Although, that won't start until age 2 at the earliest.  All of these drugs are so new, they haven't yet been tested in the infant population.
Thanks so much for your prayers!

Birthday Week, Skating, and Happy Halloween

So, last week Chris and I both turned 35 (and Lauren also turned 3 months old)!  We can now run for president.  What a milestone!!  We had quiet birthdays with dinner at home with the girls.  The Buzzell's came over on Thursday for Chris' birthday and to watch the Wake Forest game.  Luckily, we won!

Alli went to a skating birthday party for twin girls in her class at school.  It was most of the kids first time skating.  The song "Another one bites the dust" comes to mind...  Actually, Alli did a good job, and it wore her out.

 The girls had a great time trick-or-treating last night.  After I picked them up at school, I changed them into their costumes and first we went trunk-or-treating at First Baptist Clemson, then we walked to downtown Clemson and trick-or-treated at the stores/restaurants, then we headed home, had dinner and Alli headed out to a few of the neighbors.  She got a bucket full!  Daddy even decided to dress up.  Alli decided to be Tinkerbell and Lauren was a bumble bee. 

Lastly, an update on Lauren...she's doing well.  I weighed her last night and she's around 11lbs.  It looks like she'll be in 3 month clothes a little longer (she's long and lean)!  We got good news on Wed.  The Synagis Vaccine (RSV) was approved through the insurance!  She will get her first dose on Tuesday when we go to the pulmonologist for a check up.  Tuesday will be a rough one... not only will she get the shot, but they will also be drawing blood for a cbc, metabolic panel, vitamin level check, and the genetic mapping.  It's hard enough to have to watch her get shots, I'm not sure how I'll do having to watch her getting blood drawn too.  I'm praying that it'll be easy on her.

As for milesones, she's doing really well holding up her head, she laughs and coos. She's not too much of a fan of tummy time.  We're working on that to get her to start rolling over.   Here's a picture we got of her "reading."

Can you tell which one is Alli and which is Lauren?

Hiking Table Rock and Tailgating with The Richardson's

My parents came up a few weekends ago, and we decided to pack a picnic lunch and go to Table Rock since it was so close, yet we had never been.  Alli loves picnics, and always has energy to spend!  Lauren pretty much slept the entire time except when it was time to eat.

We tailgated with the Richardson's for the Georgia Tech game.  All had a great time.  Alli was happy to have Kenlee there to play with.  And~Clemson won!  Lauren stayed home with my parents.

Just an update

Lauren had good check-ups at both the pulmonologist and pediatrician.  The pulmonologist was happy with her weight gain, and said she looked good.  We did the paperwork for the nebulizer and they sent us home with one as a just in case.  We also got the ball rolling on insurance approval for the Synagis Vaccine.  The Synagis Vaccine is a monthly RSV (respiratory syncytial virus) vaccine that is given to "high risk" kids.  RSV causes only a cold in adults, but in preemies, babies younger than 3 mos., and babies with chronic problems, like Lauren, it can cause serious upper respiratory problems that can lead to long hospitalizations.  The vaccine is given monthly during RSV season (which in SC it runs from Nov-March).  Pending insurance approval, Lauren will get her first dose in early Nov. in conjunction with her next  pulmonologist visit.  The reason insurance approval is such an issue is because it costs $2000/dose, so over the season is $10,000!! We did not have blood drawn this time for the genetic mapping.  The lab was working on the logistics of getting her blood sample to Johns Hopkins to do the mapping, so will have that done in Nov.  The pediatrican was also happy with Lauren's progress.  She had to get 3 shots, and 1 oral vaccine.  She did much better than I did.  She only cried for a second.  Here are her stats:
Height: 21.85 in (10th-25th percentile)
Weight: 9lbs 10oz (10th-25th percentile)

Lauren was baptized on Sunday, Sept. 30th.  We were blessed with our family and friends there.  Lauren and Alli both did great.  Lauren only fussed when the first splash of water touched her head.  She's not a fan of getting wet.  I on the other hand, was a bad momma.  I forgot to put diapers in the diaper bag, so we had none, and of course Lauren pooped.  I went to the church nursery and asked to use a diaper... they handed me whatever they could find, which happened to be size 3 diapers...Lauren's just now out of the newborn size, so the diaper came up under her arms, but it worked!

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

Lauren's Here!

Our sweet, precious Lauren Grace Sielicki was born on Wed., July 25th at 1:56pm.  She weighed 6lbs, 13oz. and was 19 3/4 in. long.  This delivery was much easier.  It was a scheduled c-section.  My parents came up to stay with Alli while we were in the hospital.  We headed home with Lauren on Sat.  Alli has been so excited and is a wonderful big sister.  She's very loving and protective of Lauren.  So far, Lauren's been a pretty easy baby.  She seems to be pretty laid back.  We went to the pediatrician for her 2 week check up on Aug. 8th, and everything seemed good with her except she had lost a little more weight.  When we left the hospital, she was down to 6lbs, 7.9oz.  At her check-up, she was down to 6lbs, 4.9oz.  The pediatrician was a little concerned, but we decided to bump up her in take.  She was also up to 21in long.  We went back to the doctor last Mon. for a weight check, and she was up to 6lbs, 9oz.  The pediatrician was pleased with that.  We also received the news that one of her newborn screenings came back abnormal.  She was retested on Monday, and we are prayerfully awaiting the results.  Besides that bit of stress we are all doing well, and know that God has Lauren and us in his hands.