I guess no news is good news, right?!

Sooooooo, it has obviously been over a year since I have updated! Sydney has had a great past year overall. She did get sick in October with H1N1 and missed a week of school for that but she got over it well and didn't miss anymore school until the second to last week of school in May! She loved first grade and is now loving second grade too! She has been very blessed to have wonderful teachers. She also turned 7 over the summer, not quite sure how that can be!

CF-wise, not much has changed. Sydney did start taking the Zenpep enzyme over the summer. She was taking Creon but was at her maximum dose and started having tummy aches and lost 2 pounds between quarterly clinic visits. We were very concerned about this but within days of starting Zenpep she told us that she felt like they were working much better for her than the Creon and within about 4 weeks she gained back her weight. She could still stand to gain a couple more pounds but she is back in the 50% bmi range, so we are pleased. I think that is the only change in meds. At her annual clinic visit in July, she did her first full PFT (Pulmonary Function Test) in "the box" and she did really well with it. She will continue to do these at her annual appointments and do the basic PFT's at quarterly visits. Her lung function is well over 100% still, I am thinking FEV1 was around 120.

Thanks for checking in on Sydney!

Doing Treatments with her new PINK vest


Doing full PFT's in "the box" at her annual CF Clinic visit


Ready to jump on the trampoline!

Our Sweet Girl!

Sydney and her little brother Andrew (age 4)

Surgery went well!

Sydney's surgery went well on Monday, she was home within a few hours to recover. Her huge tonsils are gone and it turned out that there were only a few small polyps in her sinuses, which have been removed. The real sinus trouble was caused by bones that had scarred over with tissue since her last surgery. They were almost completely blocking her sinus cavities. The bones were removed so Sydney will not have this problem again. I think this is good news, but will find out more from the doctor at her follow-up appointment since we just spoke with him briefly during her post-op recovery and we were pretty distracted by her and not thinking clearly enough to ask more questions. At this point, she is on OTC pain meds every 2 hours and I feel that she is doing really well considering what was done to her. She has been eating a little bit of food every few hours: soup, sour cream & onion pringles, marshmellow, milk, pop tart and goldfish crackers. She has been drinking alot of fluid and enjoying popsicles too. We are hoping and praying that her recovery continues to go well and that she is able to start school next week on Thursday, August 13th. She is very excited about school.

Thanks for prayers!

Prayers Please!

Wow, I just realized that I haven't updated in a LONG time! This summer has been really busy for Sydney and I hope to update more on her summer soon. For now, I am asking for prayer for Sydney as she is scheduled to have her 2nd sinus surgery (polyp removal) on Monday, August 3rd. She will also have a tonsillectomy at that time. Her symptoms have been relatively mild but present none-the-less over the past 4-5 months. She has complained frequently of headaches and her energy level has decreased since school ended, very rapidly over the past few weeks. We feel fortunate that she has avoided the terrible sinus infections she used to have chronically but we are disappointed that polyps have returned. We are asking for prayers that the surgery will go well, that her recovery will go well and that her health will improve.

Thank you for prayers, I will update on the surgery as soon as I can!

Once again, no news is good news!

We have been really busy these days with activities for the kids and enjoying the nice weather. Here is some of what has happened since my last post. The next day, Sydney's tooth was bothering her so much that we had to pull it out. She wasn't excited about this but I figured that it was better for me to do it than having to take her to the dentist the next morning. Thankfully, the dentist office gave me some numbing gel and the tooth just popped right out with a little twist! Here is Sydney afterwards:



And of course her little brother wanted me to take a picture of his teeth during the excitement too...


Over the past weekend, we had a garage sale at our house during the city-wide garage sale. Sydney had a "snack shop" to raise money for the CFF. It was super windy outside so her snack shop was in the garage and she had so much fun doing it. She raised $40.25 for Great Strides and was really excited about it. We were really proud of her for fighting her disease. She did such a great job with "customer service" and even explained to people why she was raising money for Cystic Fibrosis.

The last bit of excitement at our house has been swim lessons! Although you can't tell it from this picture, Sydney has been swimming without help from her teacher or floaties! She went from barely letting go of her teacher to swimming the entire length of the pool twice with no help! We are really excited for her. When I asked her what happened that she is swimming so well now she said, "I learned to trust myself that I can do it". Gotta love that kind of thinking!

Thanks for checking in on our girl!

He is Risen - Happy Easter!

Sydney has been having a wonderful Easter Weekend full of time with family and friends and she has also been reflecting on the meaning of the holiday: Jesus Christ's resurrection from the dead and His glorious promises of eternal life for all who believe in Him. And of course, there were Easter Eggs!

Sydney and Drew all ready to decorate eggs

The weather was so nice that we were able to do this outside

Sydney's health is in good shape now, her cough is gone and she has no congestion...we are very thankful and praying that this continues. We have been able to decrease her treatments back to her normal amount, which gives her an extra 30-45 minutes of "free time" each day. She is doing really well with swimming lessons and is enjoying the warmer weather we have had here in NE Indiana for the past few days. All in all, things are very good for Sydney with the exception of one tiny little problem...

her loose bottom tooth will not fall out! Please ignore the broccoli in her teeth, her mommy chose dinnertime to take this picture because her tooth was bothering her so much while she was trying to eat! I had forgotten how sometimes teeth seem to just hang on by a thread, this one won't give up. We are really hoping this tooth will fall out SOON because it is starting to drive us all crazy!

She seems much better now...

although she is still coughing a little. Her lungs sound clear but she still has post-nasal drainage which is causing her to cough so we are keeping up with increased Vest sessions to keep her lungs nice and clear. Her ears seem to be all better now and she was able to go swimming this weekend. She is starting a 6 week session (twice a week) of swimming lessons tonight and we are really hoping that she will be confidently swimming before summer comes. Lastly, she woke up very excited this morning because there was some white stuff covering our yard:

Quick Update

It is only Wednesday but it sure feels like it has been many days since I last updated because I have been really sick with a head/chest cold. Of course, it always makes us nervous for Sydney to be around someone who is coughing up a storm from sickness, especially living in the same house with that person. I was basically out of commission for the past few days so Sydney's Daddy has been in charge of all treatments and most care. Thankfully, she seems to be avoiding whatever yucky cold I have but she is still trying to get healthier herself. Yesterday she came home from school crying because her ear hurt so bad, so her Daddy drove her to the pediatrician with 2 instructions from me: 1. do no leave without an antibiotic and 2. have her wait in the hallway rather than the waiting room. I also sent her most recent culture report so the doctor could use it to choose the antibiotic. I know the moms out there understand how hard it can be to let our husbands take over the care-taker duties! He has done a really good job though and deserves a pat on the back! It turns out that she has a double ear infection but her lungs sounded nice and clear, so that was actually a relief to us all. She is feeling much better today and begged to go back to school saying "the kids can't catch an ear infection from me".


And now for the funny piece of schoolwork that Sydney brought home the other day:


Translation: I want a boy friend at the end of my rainbow....