Sydney Anne

I guess no news is good news, right?!

2010-08-29T17:47:00.001-07:00

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!

2009-08-05T06:05:00.000-07:00

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!

2009-07-31T06:51:00.000-07:00

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!

2009-04-30T06:32:00.000-07:00

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!

2009-04-12T18:34:00.000-07:00

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...

2009-04-06T05:41:00.000-07:00

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

2009-04-01T14:37:00.000-07:00

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....

Cough came and went and is back again!

2009-03-30T15:58:00.000-07:00

Sydney's cough (as mentioned in the previous post) was gone within a day or two...however she is now coughing again and this one sounds more productive. It started back up 2 days ago over the weekend. Of course I also have a nasty cough/cold thing going on, so she probably got it from me. Her energy is pretty good and she looks good so we will continue to kee a close eye on her and continue doing extra vest treatments in hopes of avoiding something serious. I worry about her getting pneumonia since she started to get it last September. In other news, she came home from school with a very interesting piece of schoolwork in her backpack. I will try to scan it in tonight and share it here because it is pretty funny! Thanks for continued prayers!

Sydney still has a slight cough

2009-03-23T17:50:00.000-07:00

Sydney still has a slight cough, this would be day 4 or 5, which sounds worse than it is considering she only coughs a few times throughout the day (but her baseline is no cough). On Friday, she only coughed a few times but begged me to let her stay home because she said she felt tired and achy. She did rest most of the morning so I think it was really good she stayed home even though it was a half-day of school (parent/teacher conferences). She seemed pretty well on Saturday and Sunday, only coughing a few times each but today she woke up coughing a little more and she had a low-grade fever this morning. We have increased her vest treatments, will keep a close eye on her and are praying hard that she gets over this quickly so she can enjoy some fun things over the rest of her Spring Break!

CF Clinic Report came...

2009-03-19T10:53:00.001-07:00

and everything looks great! Her nutrition levels were all good and she didn't culture anything that needs treating so we couldn't ask for much more! Today and tomorrow are 1/2 days of school and next week is spring break and we are sticking around home this time so we are hoping to find lots of ways to have fun around here! Also, Sydney has developed a little cough (it is going around her school right now, as I heard first-hand yesterday while having lunch with Sydney) so we will be increasing her treatments until it is gone to make sure it doesn't turn into anything serious, so that is great timing with spring break. Here are a couple more pictures from her appointment:

Picking out a sticker after being a good girl (and after sanitizing her hands, of course!)

Pretending she's the doctor

Sydney has fun almost everywhere she goes, even CF Clinic!

Annual Clinic (aka Birthday Visit) Update

2009-03-05T09:44:00.000-08:00

Sydney goes to Riley Children's Hospital in Indianapolis, IN every 3 months for a Cystic Fibrosis Clinic check-up. Once a year this visit is called the "birthday visit" and this is when they do regular clinic testing (throat culture and lung function test) along with extra testing (bloodwork, xrays, urine sample) and we meet with everyone on the CF Care Team (pulmonologist, respiratory therapist, dietician, and social worker). It is a long and thorough visit. At yesterday's appointment Sydney didn't have to do an x-ray because she had one in November, so that was nice because it saved us a little time. We started out with the Respiratory Therapist, who asked Sydney all about her medications (Sydney did a great job telling her about them, when she does them, the neb cups, etc) and her Vest treatments (Sydney was able to tell her the settings) and then Sydney did PFT's (Pulmonary Function Tests - lung function). She did a great job with the PFT's and her FEV1 was nice and high at 115. Over 90 is considered normal, so we like her high number and hope to keep it high! After that we spent some time with the CF nurse, dietician and social worker. Sydney did great with her throat culture, she even has a silly "throat culture song" that she made up about a year ago which she sang to the nurse. After this we went to the lab for bloodwork. Thankfully Sydney had "magic cream" (EMLA) on her arm which made the blood-draw easy and painless. During the draw, Sydney asked "Will I feel them testing my blood because it is part of my body?" Of course we couldn't help but chuckle at that question. Then Sydney got to "Make Lemonade" in a cup, which she thinks is pretty funny! Next we had a quick lunch then met with Sydney's CF doctor. Her lungs sounded great, her BMI is good (they like people with CF to have a BMI over 50 and Sydney's was 73). This morning when I asked Sydney what her favorite part of the whole clinic was she said "the blood-draw because that was cool!" Of course that was the part Derek and I were dreading the most, go figure!

All in all, the appointment went great, but the true measure of the appointment will be the throat culture & bloodwork test results which we will get over the next couple of weeks.

First Stop, PFT's (playing the bowling game)

Next, check-in with nurse and do a Throat Culture (check for bacteria):

Then to the lab for Blood Work (check vitamin/nutrition levels):

Sydney was all excited to tell her kindergarten class about the events of this appointment and she tried to draw a picture of the blood draw but couldn't make one she was happy with. Then she remembered that I had taken these pictures so she asked me to print them out for her to take. After I printed them, she was so excited about them that she decided to mount them onto construction paper to make them look "nicer". Gotta love this girl!

Science Fair Pictures

2009-02-24T14:53:00.001-08:00

The "Reserve Grand Champion" with her project:

She was super excited about the trophy!

The judges asked Sydney why she chose "dolphins" and this is a big part of the reason:

Thanks for sharing in our Science Fair excitement!

Sydney's voice still sounds really bad and she is definately congested. Her lungs sound nice and clear but we have increased her treatments and are praying that she is over this soon!

Here is a local blog that posted some pictures from the Science Fair:

Exciting News for Sydney!

2009-02-23T16:08:00.000-08:00

I am so excited to say that Sydney got 2nd place in the Kindergarten Science Fair!!! She worked really hard on doing research (at the library and online) for her dolphin poster and once she completed the poster she practiced her presentation over and over and then today it all paid off! She was so happy after school when I picked her up. Bless her heart because she got the "family cold" over the weekend and her voice was pretty much gone but she was all smiles. I will pick her project up tomorrow evening after the open house and take a picture of it to share here.

Please be praying that Sydney will get over this cold quickly and easily. She has her annual ("birthday") clinic visit next week and we are really hoping that she will be well by then!

Keeping Hope Alive

2009-02-16T06:56:00.000-08:00

Having a child with special needs is definately not easy. We love Sydney with all of our hearts but we certainly expel a great deal of energy trying to take good care of her and sometimes that can be very overwhelming. Not to mention times when her health is affected by CF, those times are so discouraging. Below is an article about "Keeping Hope Alive" that I really like. I do have to note though that even when times aren't "Tough" as far as Sydney's health, everyday life with CF (for the caretaker or for the person with CF) can still be "tough". However, I really like the idea of focusing on the things that ARE good in our lives...and there are many of them! To be quite honest, there are days when we (Derek and I) pretty much hate the Vest that Sydney uses for at least 30 minutes each day, on the flipside we feel very thankful that Sydney is able to benefit from it, especially when many people aren't able to have one. So when I feel like thinking "I hate this thing" I try to remind myself "how lucky we are to have this" instead. The same goes for the enzymes she must take each time she eats, the nebulized medication she takes daily and on and on. We feel strongly that having a positive attitude about treatments and medical care will teach and encourage Sydney to do the same.

Thank you Lisa for letting me share your well-written article and thank you for the encouragement you give to many.

Keeping Hope Alive During Tough Times

by Lisa C. Greene

I pull into the carpool lane to pick my kids up from school and am yet again touched by the sight of a seeing-eye dog with a bright pink lunch pail hanging from her mouth as she trots alongside a young girl in a wheelchair.

And then there is the computer-generated voice that says "Amen!" at just the right moment during church. I am inspired by the young family in the front row as they minister to the physical and spiritual needs of their disabled son who is barely visible amidst the medical equipment that surrounds him. It would be so easy not to go to church but there they are, week after week.

How do these families and others like them keep their hope alive in the face of such daunting challenges?

I am no stranger to hope- or hopelessness for that matter. Both of our children were born with cystic fibrosis. CF is a genetic disease that causes the mucous in the lungs to become thick and sticky which causes lung infections, scar tissue and eventual lung failure. The median life-expectancy is currently about 37 years of age and rapidly climbing due to great advances in medical technology.

There is great hope for the future of those living with cystic fibrosis and I am generally optimistic about my children's future. But I know of a beautiful young lady who recently died from the disease at the tender age of twelve. And the many pills, medical treatments and hospital visits that my two children endure serve as a bleak reminder of our race against time with this progressive disease.

Sometimes the icy fingers of hopelessness hide in the shadows around my heart, waiting for a beat to falter so they can enter. But I don't let hopelessness sneak in. I can't. My children depend on me. Not only am I their caregiver, but also their role model. They will pick up on my cues as they learn to navigate their own way through a lifetime filled with the trials that their illness will impose upon them. If I model hope, they will be hopeful. If I model despair, then they will be hopeless. So, how do we keep our hope alive even when we don't feel very hopeful?

Throughout my "CF journey" I have had many teachers encourage me, inspire me and lead the way. And I have noticed they all have one thing in common: gratitude.

A little research on gratitude turned up some interesting things. It is not clear why some people are naturally more positive than others. Perhaps it's genetic. But it is clear that purposely focusing on what we are thankful for, instead of what we are upset about, will help us feel more optimistic about the future as well as more loving, forgiving, joyful, healthy and, of course, hopeful in the present.

Anabel Stenzel, co-author with twin sister Isabel of the book "The Power of Two," says: "Because of my CF, I have received many gifts: resilience, closeness with loved ones, the amazing people one meets in the CF community, and the maturity and depth that living with a chronic and life-threatening disease can bring. Despite living with progressive lung disease that required me to have a lung transplant at age 28, I have learned, loved, seen, heard, eaten, walked, talked, touched, thanked, hoped and dreamed in my lifetime. And I have no regrets."

Ana and Isa are living examples of counting our blessings one by one. The good news is that an attitude of gratitude is a choice. Anyone can be more thankful with a little awareness and effort. Here's how:

1. Pay attention to your thoughts. Make the decision to replace negative thoughts with positive ones. For example, say "I am thankful for having medical insurance" rather than "What a hassle this insurance company is!" Repeat over and over as necessary!

2. Stay in the present. Focusing on the challenges of the past or on what might happen in the future can rob your joy today. What are you grateful for right now? Clean clothes? A loving family? Food on the table? Start with the simple things in life that we often take for granted.

3. Take five minutes each day to meditate on one or two things you are thankful for. What blessings did your day hold? A meaningful moment with a loved one? A beautiful sunset? A word of encouragement given or received? A job well done?

4. Begin a "gratitude journal." Write down one different thing that you are thankful for each day for three weeks. Notice how much happier you feel. Then, keep going.

5. Share your blessings each day with your family- especially your children. Ask them what their blessings were, too. An attitude of gratitude is contagious!

Sometimes it can be difficult to muster up the will to count our blessings. Here are some tips for keeping our hope alive during those especially hard times:

- Keep your expectations reasonable. Hoping for a cure can keep us going but can be devastating when it doesn't happen. Miracles can happen! And it's also important to stay grounded in reality. Having faith with reasonable expectations helps us stay balanced.

- Take the time to grieve: Bad things happen. And when they do, we understandably respond with shock, anger and despair. The way to acceptance is through these emotions by allowing ourselves the time and space to grieve. The key is to find a balance and not get stuck.

Elise Free, mom of a two-year-old girl with CF nicknamed "Froggy" explains:

"There are levels to my own grief: One day I feel elation that Froggy lives in a time of progressive medicine, and in the next second, sorrow that we were so unlucky to be the one in being a carrier of a defective gene, passing on something dreadful to our child.

And then there is the warm wash of gratefulness leading me to appreciate every moment with a monumental love powered by the knowledge that life is fragile and our time together is measured in breaths.

We have been given an opportunity: to see life in a dark light, a constant balance of pain and peace, hope and devastation, sorrow and joy. And maybe that is the purpose of life, to find the balance, to accept the reality, but live in the hope."

- Faith filled folks have more hope! When times are really tough, we need something to hold on to- some sort of anchor in the storm. We can find comfort in knowing that there is something bigger than us in all of this; that there is some meaning and purpose for it all- even if we don't know what that might be.

So, how do we keep our hope alive? Marla, mom of sweet baby Emma (who has cystic fibrosis), sums this up for us perfectly: "I look at my daughter's face. Seeing her beautiful smile gives me hope."

Originally published in PARENTGUIDE, December 2008. Reprinted with permission.

********* Lisa C. Greene is the mom of two kids with cystic fibrosis, a parent educator and co-author with Foster Cline MD of the book "Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Other Special Needs." For information, free audio and articles, visit http://www.ParentingChildrenWithHealthIssues.com.

Daddy Daughter Dance!

2009-02-15T18:15:00.000-08:00

Tonight was the 1950's Daddy Daughter Dance put on by our Parks & Rec. Department and Sydney was SO excited all day long! She has been looking forward to this for weeks. Here are some pictures of the fun:

Getting Ready for the Dance

Posing

Little Brother Andrew wanted in on the picture fun

Posing with her "date"

My 3 favorite blessings

Showing off her special corsage from Daddy

Having a fun time with Daddy

Making Special Memories

Cold Air & Lungs

2009-02-06T09:12:00.000-08:00

It has been a very cold winter for us in NE Indiana. The temperatures have gotten well below zero many times. Of course this doesn't stop Sydney from wanting to play outside in the snow, even when it is -15 degrees outside. I have been concerned about how the cold air might effect her lungs, especially after hearing warnings on the news about very cold air not being good for people with lung issues. This is the first year that "cold air" has even been on my radar so when I found this topic being discussed on a Cystic Fibrosis messageboard recently, I figured it was time to take it seriously. With a little research, I have come to the conclusion that there are a number of reasons that make very cold air potentially harmful for people with CF. Here is one article that briefly explains what cold air does to the respiratory system.
http://www.drgreene.com/21_55.html

For us, keeping Sydney indoors all winter just isn't an option. She loves playing in the snow and so does the rest of her family. So I started searching for options for keeping her mouth/nose covered and found different masks (ski-type masks and face masks that look like hospital masks) but finally after LOTS of searching I found a good solution for Sydney:

This is called a Balaclava and the brand is Turtle Fur, it gets really good reviews. We ordered this from an ebay seller for just under $15 with shipping. It can be worn under a hat. Sydney really likes it and we think it will be good for her to wear when she wants to spend hours outside in the freezing cold snow!

Just a quick update!

2009-01-22T11:57:00.000-08:00

Sydney has been a little run-down this week but we are hoping it is just lack of sunshine rather than sickness. I think everyone in our house feels a bit tired and cabin-feverish. She has been keeping busy with school, gymnastics and playing in the snow. She has even gotten lucky over the past couple of weeks and had some school delays and cancellations. Her sinuses continue to be very clear and she has pretty much had no nasal congestion, which just amazes us.

Sydney has some really fun things coming up in February. She is very excited to do her first Science Fair project and has chosen to do a poster on Dolphins. The kindergarteners do posters on something they like and she likes dolphins (among many other things!). We have started our research and here are the questions Sydney wants to find answers for:

How do they breathe under water?
Why do they swim and not walk?
Do dolphins have hair?
What do they eat?
Where do the sleep?
Where do they go to the bathroom?

Another fun thing for Sydney coming in February is the Daddy Daughter Dance. It has a 50's theme, so Sydney will get to wear a Poodle Skirt. She is going to love getting all dressed up and going to a dance with her Daddy!

All in all, she is doing great! I will try to put a few pictures on here soon!

Back 2 School

2009-01-05T13:35:00.000-08:00

Sydney went back to school today after having lots of fun on Christmas Break. She was excited to go back but said that it was too early to be awake when I went in to her room at 7:15 to get her going on her Vest treatment. I have to agree about it being early, considering that we slept in most days until 8:30 or 9:00 but it is time to get back to reality! Here are some pictures of the fun Sydney has had over the past couple of weeks:

Decorating her Christmas Tree:

Ready for her class Christmas Party:

Decorating Cookies:

Making home-made ornaments with Cousin Madison

"Happy Birthday Jesus" cake on Christmas Eve

Ready for Christmas Eve Church Service

Ballerina Doll from Santa on Christmas morning

Laughing at the underwear Santa put in Drew's stocking

Lunch at the rollerdome with a friend

Our Girl Is Doing Great!

2008-12-19T20:16:00.000-08:00

Sydney has been doing great! We are just still so amazed at how great her sinuses are doing! She is so excited for Christmas, of course! Her class Christmas Party was yesterday, she got all dressed up in her pretty Christmas dress and had a great time!

In other news, Sydney's Daddy's appendix ruptured on December 2nd, so this month has been pretty weird for our family. He had emergency surgery in the middle of the night and then spent 5 more nights in the hospital. He is slowly but surely feeling better and we are SO thankful to still have him with us! Sydney was so upset when I told her about it. I started off by telling her that his tummy hurt really badly but he had surgery to make it feel better. Right away she started crying hard and said "Is that because part of his tummy swelled up and popped?" I was so confused because she was pretty right about that and I wondered if someone had told her. My mom took her to school that morning and my good friend picked her up from school that afternoon, so I was thinking maybe one of them? It turns out that she remembered a book I read to her at one of her doctor appointments a few months ago about a little girl whose appendix ruptured and had to have surgery...she has a much better memory than I do!

Last but not least, being that it is almost Christmas, I leave you with some pictures from our Thanksgiving Getaway! We stayed at the Carribean Cover Waterpark in Indianapolis for 2 nights then went to the Children's Museum before heading home. We had a great time!

Sydney loved all of the water sprayers:

Andrew loved this little waterslide:

Playing with their arcade prizes in the room:

Our boys at Thanksgiving Dinner:

She was so excited to have a "fancy" Thanksgiving Dinner:

Our Family at Thanksgiving Dinner:

Doing a craft in the playroom after T-Giving Dinner:

Digging for dino bones:

Momma dino protecting her eggs:

Andrew's favorite part of the museum:

Of course, a picture in front of the glass sculpture:

Finally...Follow-Up Clinic Went Well

2008-11-28T15:29:00.001-08:00

Sorry it has taken me so long to update on Sydney's follow-up appointment in November, things are finally starting to settle down at our house now so here goes...

Sydney's follow-up appointment went great! She started off by blowing fantastic PFT's, which showed that her lungs are functioning very well (you can see how well at the end of this update). She had gained about 1.5 pounds and grown 3/4" since October which puts her BMI at 74%tile which is great (above 50% is important for kids with CF so we like to have some "cushion"!) and then she had an x-ray done and her lungs looked good and sounded good. Overall Dr. Howenstine was very pleased so Sydney will be going back again in February for a regular clinic appointment!

Interestingly, while we were on our mini-vacation we stopped doing the sinus rinses because we didn't think a couple of days without them would be a problem...she started having sinus congestion on day 2 and by day 3 she was very congested. So, now we know to always bring the nasal rinse "kit" with us.

We had a great time away for Thanksgiving, I will try to get some pictures on here soon. And now for the best part of the appointment...

This is Sydney's PFT (Pulmonary Function Test) result. The green triangular line is considered "normal lung function" for her age/size. The black line is what she blew. Her FEV1 was 122.

Clinic Follow-Up tomorrow

2008-11-25T11:28:00.001-08:00

Sydney has a follow-up appointment at Riley Children's Hospital in Indianapolis tomorrow. After being pretty sick in September and October with sinus infection, ear infection, chest cold, the beginning of pneumonia, etc. she seems to be doing really well now, so we have every reason to believe she will get a good report tomorrow and would appreciate prayers for that. Since the appointment is the day before Thanksgiving and Sydney doesn't have school for the rest of the week, we have decided to stay in Indianapolis for a couple of nights and have some fun! We will be staying at the indoor waterpark for two nights then going to the children's museum before we head home on Friday. Sydney knows we are going to spend "the night" at a hotel and is VERY excited to go swimming but she doesn't yet know the other details yet. I think she will enjoy the suprise of the waterpark and children's museum and it will help make the trip to Riley much more fun!

I am pretty sure I remember the hotel having WiFi but if not, I may not update until we are home. We hope everyone has a wonderful Thanksgiving!

Not much to report...

2008-11-16T16:06:00.000-08:00

which is always a good thing! Sydney has been doing really well. She is back to her typical routine of doing her vest for 30 minutes in the morning and doing Pulmozyme in the nebulizer in the evening. We are still doing a morning sinus rinse and an evening sinus rinse and she is doing wonderfully with swallowing capsules. She has even started swallowing one of her bigger capsules, which is a probiotic. She takes other supplements that come in capsules even larger than her enzyme capsules but for now we are only having her swallow the probiotic so that we don't have to pour it into yogurt to serve it to her (no more buying plain yogurt - yay!). The others big capsules we still put in applesauce and call it her "vitamin cocktail". She really doesn't like swallowing the big probiotic so once she is more used it to we will start adding the rest of her supplements into the swallow pile.

I have to say that we are thrilled with how well her sinuses have been the past couple of weeks. We can tell the Pulmozyme is working wonderfully at thinning the mucus in her sinuses and the sinus rinses have been washing out mostly clear mucus. This is amazing to us!

Thanks for checking in on our girl!

Teaching Kids How to Swallow Capsules & Update on Sydney

2008-11-07T11:36:00.000-08:00

I have 2 really good pages in pdf format on teaching kids how to swallow capsules. I tried to find a way to attach them to this blog but couldn't figure it out. If you would like me to email them to you just send me an email: kellimmyers@hotmail.com

For the update, Sydney seems to be doing really well! Her sinuses have cleared up wonderfully and while we have no real scientific proof, we believe the GSE & Xylitol deserve the credit. She has never been able to get rid of the thick, greenish/brownish nasal congestion without antibiotics, until now! We plan on doing sinus rinses with GSE & Xylitol throughout the rest of the cold/flu season.

Big News: Sydney is swallowing capsules!

2008-11-03T16:35:00.001-08:00

This is incrediby exciting to Derek and I because for the past 4.5 years, we have had to open up each capsule and pour the beads from the capsule into applesauce. Considering that Sydney takes around 20 capsules throughout her day, it will be wonderful not having to open each one. Sydney has to have enzymes everytime she eats a meal or a snack so this means that we have to be prepared with cups of applesauce everytime we leave the house (not to mention making sure we don't forget the enzymes!). I cannot tell you the number of times we have forgotten applesauce cups which led to stressfully searching out an alternative to serve the beads in such as a ketchup packet, jelly packet, etc as long as it is something acidic it will work. She is really proud of herself too! Today, after I got her to swallow 3 capsules, she got to call her Daddy and tell him what she had done and then she had him listen to her swallow one over the phone! Tonight at dinner, we laid her enzyme capsules on the table next to her cup of water and she picked up one at a time and swallowed them...it felt like a miracle!

For those who don't already know, she takes the digestive enzymes when she eats because her pancreas is affected by thick and sticky mucus which keeps it from secreting the digestive enzymes that help our bodies digest and absorb fat, protein and carbohydrates. The enzyme beads needs to be taken just after they are put in the applesauce and once she has taken them, the enzymes are good for about an hour (we consider them good for 45 minutes to play it safe). We are very thankful for the enzymes!

Here is how we served her enzymes over the past 3+ years:

Those are Solo 1oz. cups from GFS and they worked really well for us. The beads in the cup on the right are from one enzyme capsule of Creon10.

Happy Halloween!

2008-11-01T14:06:00.001-07:00

Sydney loves Halloween (what kid doesn't?) and this year she was planning on dressing up as a "lovebug" but at the very last minute she changed her mind and decided to be "Belle". She had a great time taking her little brother Drew (2 years old) around the neighborhood and then back home to pass out candy.

"Belle":

Sydney with her future husband:

Trick-or-treating:

Posing with the pumpkin she designed:

Passing out candy with her brother:

Sinus Rinses

2008-10-30T17:56:00.000-07:00

Sydney has chronic sinusitis and has already had one sinus surgery (February 2008). It is very frustating and we work hard to take good care of her sinuses in hopes to avoid letting them get so badly infected that she needs surgery again. One thing that really helps keep the thick mucus from building up is doing sinus rinses. Sydney has been doing these twice a day since mid-September (once a day since October 2007). These rinses are somewhat similar to a netipot, but has a little more force and power than the neti which uses gravity. She uses the Neilmed Sinus Rinse bottle with Neilmed Saline packets (and we add GSE & Xylitol as mentioned in the previous post to control bacteria growth). Sydney doesn't mind doing the rinses at all, sometimes she asks for one because it brings her so much relief. Here is a video of her doing a rinse during a time when her sinuses where pretty clear which means not much comes of her nose. Happy Watching!

Doing much better, but still having some sinus trouble...

2008-10-27T10:27:00.000-07:00

In an effort to keep Sydney's CF Journal more up-to-date, I am going to try keeping it here on a blog. I have copied and pasted her entire journal up to this point below, all 4+ years of it! This blog will include her CF updates along with general happenings in her life.

Sydney has been doing pretty well since her clinic appointment. Her sinuses cleared up nicely with the Augmentin and she was able to start Pulmozyme a week after her clinic appointment. Since then, she has been doing her vest treatment in the moring and in the evening, she has been nebbing Albuterol, then Pulmozyme, then doing her vest. She likes the Pulmozyme better than albuterol because it "smells nice and tastes yummy". Gotta love that girl! She has been doing so well with the added treatments and was disappointed when we cut out the morning Albuterol treatment! About 5 days after finishing her Augmentin, Sydney's congestion started to come back again, which is a bummer. We started adding Grapefruit Seed Extract (GSE) to her saline washes though and have noticed an improvement in the amount of mucus and the mucus is less greenish/brownish. GSE is really an amazing thing. I have been reading about it since just shortly after Sydney was diagnosed with CF in 2004 when my dad suggested we look into it. It has natural antibacterial properties. We have used it to make household cleaning solution and we have put it in the vaporizer as well. I am also planning on adding Xylitol to her saline washes because it has been shown to be effective against bacteria frequently found in sinuses too. It seems to work well with GSE because they work differently. There is a product called Xlear that uses this combination but it is only a little squirt, which doesn't do much for someone with Sydney's extreme sinus issues. We have been using Xlear for about a year though. You can find lots of information on GSE and Xylitol if you do a google search. I am hoping this combination does the trick for Sydney. She will return to clinic for her followup on November 26th.

Archived Journal June 2004 - October 2008

2008-10-27T08:45:00.000-07:00

October 9, 2008
I haven't updated in awhile so I will start with mid-September. Sydney got a head cold that produced a lot of post-nasal drainage and then turned into a chest cold giving Sydney a very nasty cough. Sydney stayed home from school on a Thursday and Friday and the cough got really nasty over the weekend. It actually started to sound a little better on Monday, less productive and slightly less freqent but my gut told me to have her checked out anyway. When the pediatrician (not her normal pediatrician, who was out of the office) listened to her chest, right away he said she has Pneumonia, took her pulse ox (which was 96, hers is normally 100) and sent Sydney off for an xray. The xray turned out to look pretty good and the doctor said that if he were to look at them before listening to the lungs he wouldn't suspect anything was wrong. So we had caught the pnemonia just in time. I was somewhat panicked about the thought of a hospital admission but she did an oral antibiotic (Zithromax) and was back to school on the following Thursday. We are so thankful that she was able to recover from it so quickly and that her lungs looked very good. She is not completely in the clear though which catches us up to her CF Clinic appointment yesterday.

The appointment went well overall. Sydney has a sinus infection and an ear infection, which we suspected (took her to the pediatrician 2 days before this appointment). The sinus infection gives her an incredible amount of very thick mucus, most of which drains post-nasally (down her throat) and she does not like to cough it up because that makes her gag and sometimes vomit. Thankfully, she is very willing to do sinus rinses (Neilmed Sinus Rinse, similar to a Neti Pot) which sends 8 ounces of saline up her nose, through her sinus cavities and brings out a lot of the thick mucus, which helps with her post-nasal cough. She dealt with this last year for most of October - February until she had sinus surgery. At her clinic appointment yesterday we were able to put together a strong plan to get her back to her normal health and hopefully avoid another winter of chronic sinus infections. She started on an oral antibiotic last night (Augmentin), started taking Xopenex (a nebulized medication to open her airways) twice a day this morning and will start taking once a day Pulmozyme (a nebulized medication that helps thin the mucus) as soon as insurance approves it. Pulmozyme costs around $3,000 per month and requires preauthorization so hopefully that will not take long. She will also continue with increased airway clearance with her Vest, which means 60+ minutes a day rather than her normal 30 minutes a day. Once her health is back to normal, she will most likely continue with Pulmozyme indefinately. We are very hopeful that the Pulmozyme will not only preserve her great lung condition but that it will also help her avoid the thick mucus in her sinuses. Sydney will see Dr. Howenstine again late November (the day before Thanksgiving actually!) for a follow-up.

Although this treatment plan is very time consuming (1.5 - 2 hours a day) I am very excited about being able to improve her health and feel confident that Sydney is going to improve quickly. She is such a special little girl and she wants to feel better so she will do whatever it takes. It is my prayer that she will improve quickly and that our family will find ways to have fun together and bond more while we do her long treatments with her. Thank you so much for your prayers, our family appreciates them very much!

August 29, 2008
Sydney has been in Kindergarted for over 2 weeks now and it has been going great! Before school started, I met with her teacher, the school nurse and principal to discuss Cystic Fibrosis and how it affects Sydney, came up with a plan for taking enzymes at school and came up with a few actions to make things "less germy" for Sydney (her own supply box, cup for drinking rather than the fountain, etc). All in all, I felt very at peace about sending her despite years of worry and concern (thanks for all of the prayers about this, they definately worked!). Sydney has been enjoying school, she loves her teacher and has done great with the long days. She will be starting dance and gmynastics next week, so we are hoping that she transitions well into those activities making her days even longer. She has had some sinus congestion over the past week along with the rest of our family, but her congestion is so much thicker and it even started to make her gag a little, just like it had been doing this past winter, fall, and summer before her sinus surgery. I think we nipped it in the bud though by doing sinus rinses twice a day, those really are amazing! Also, one last bit of good news, Sydney has been gaining weight! She hasn't been eating much food at school so we have been feeding her a full lunch as soon as she gets home then her supper 3 hours later, so she gets a lot of food in the evening. It seems like she has gained at least a pound, maybe 2 since we started doing this 2.5 weeks ago! She has her next clinic appointment on October 8, so I will update again after that! Thanks for your prayers, they are working!

July 23, 2008
Just a quick update on Sydney's clinic results. She didn't culture anything that needs treated (which is always a huge relief!) and her FEV1 was 102% on her PFT's (which means her lungs are functioning higher than normal). Both things are great news but of course, the constant struggle is always her weight! Her BMI is currently 54% and while that is "okay" because anything above 50% is considered good, we would like for her to have a little more cushion in there! We are choosing not to worry about it and are leaving it in God's hands.

Sydney will start kindergarten in 3 weeks (wow!) so we are getting our CF information ready so we can pass it along to her teacher, school nurse, etc. Sydney is so excited about kindergarten!

Please say a prayer for her health, thanks!

July 10, 2008
Sydney had her quarterly CF clinic yesterday and it went pretty well. Her health has been good since her sinus surgery and she has grown a little since then. She did well on her PFT's (lung function test) but when Dr. Howenstine compared her past 3 PFT's she saw a trend with her small airways not functioning as well as we might hope for. It is really hard to tell how accurate PFT's are at age 5 but since she has been pretty consistant over the past year, it seems like hers are pretty reliable. So, Dr. Howenstine would like to see Sydney add Pulmozyme (which is inhaled with a nebulizer to thin mucus in her lungs) to her regime. Interestingly, I have asked about Pulmozyme at every CF Clinic Appointment over the last year or two...except yesterday! Sydney has been doing so well that It just didn't even occur to me to ask about it so I found it ironic that Dr. Howenstine now wants to put her on it. Anyway, in many cases (Sydney's included) people take Pulmozyme not expecting to see changes/results but as mainainance treatment. The studies are showing that it can be a major contributor to maintaining lung function. It is a treatment that once started, patients rarely stop. Obviously we are all about keeping our girl healthy, we want her lungs to stay strong and clear. She will be starting it in the fall, after our next clinic appointment in October. Starting it then will give her a chance to adjust to the new routine of Kindergarten (all-day and starts August 14!) and give mom and dad a chance to decide how we want to work it into our daily routine.

On another note, Sydney is now FIVE! She turned 5 while we were on vacation at Disney World with all of our "Myers Family". She had a great time there and keeps asking when are we going to go back. She also had her first dance recital in May and graduated from Preschool in May, both we very exciting events for her! The past 5 years with Sydney have been amazing, exciting, fun, tiring, and sometimes scary. We have learned more from her than we ever could have imagined and we appreciate the perspective we gain from her and her disease. Four years ago, when she was diagnosed with CF, we really didn't know what the future would look like but I can tell you that I had visions of frequent hospital stays, lots of medications and illness. While we know we haven't completely dodged those things, we do feel very fortunate that Sydney has been able to maintain such good health and spirit and we feel confident that God has honored the many prayers said for Sydney. Your prayers have been a blessing to our family and we are so thankful for them!

April 15, 2008
Just a quick update to let you know that Sydney is doing really well! Her culture report from her clinic appointment in March came back showing that she isn't growing any threatening bacteria and she has gained a pound with her first month-long round of appetite stimulant! It was wonderful to hear her say "I am hungry"! She will do another month of it mid-May and we are hopeful for more weight gain then too! She had a great time in Florida although she didn't get much salt-water in her sinuses as we had joked about because the water was TOO COLD! Just before we left for spring break, we went to our first parent-teacher conference and it was a lot of fun and tonight we will be going to kindergarten roundup. I know most parents are excited about these things and it is especially exciting to us because we worried about how Sydney would do health-wise in school for so long (okay, Mommy probably worried alot more than Daddy!) but we have so much hope after she has had such a great year in preschool this year! Sydney has so many big milestones coming up in the next few months and we are so happy for her!

March 13, 2008
Sydney had her CF clinic appointement yesterday and it went pretty well. We were concerned that her weight may have gone down from her last appointment in December and were glad to learn that it went up (just a few ounces). She has had little to no appetite for food for a very long time so we are going to try an appetite stimulant to see if that might improve her appetite and help her gain some more weight. She still have a healthy BMI but she is at the bottom of the healthy range so we would feel better if she could go up some more.

Her lungs sounded clear, her lung function was great and we discussed the use of pulmozyme (which we discuss at every appointment) but have decided to hold off for now. Sydney was great at the appointment and Derek and I discussed how much she has changed over the past 3+ years of going to the CF clinic. It used to be such a challenge to take a little toddler!

Next week we will be heading south for a week in Florida! We are sure that a week of salt water in her nose/sinuses will be a good thing and Sydney is SO excited to return to Sandestin.

March 4, 2008
Sydney had her first post-op followup today and it went well. The doctor was pleased with her recovery thus far and much to Sydney's excitement gave her the "go" on blowing her nose. He said the soreness she still has in her neck is normal and may last another week or two. It has decreased over the past day or two, which is good. She also still sounds somewhat stuffy, which is due to swelling and scabbing in her sinuses. The stuffiness may last another couple of weeks as well. The doctor will see her again in April to be sure that she has healed well. If she hasn't healed well enough, there is a possibility that he will need to do another much smaller procedure which will clean out leftover scabbing in her sinuses. So for now, we are keeping her sinuses nice and moist with sinus rinses twice a day and saline sprays throughout the day. The news we were most pleased with was that no "scary CF bacterias" showed up in the cultures done on her chest tube or sinus infection! We always worry that something might be lurking in there and while this isn't a 100% guarentee that there isn't something lurking in there, it is a pretty good indication that for now things are good! Amen to that!

Sydney has really enjoyed and appreciated all of the prayers, well wishes, cards and gifts of cheer. It really has done her spirit good (and Mommy's and Daddy's) to know that she has so many people who care about her.

She has a clinic appointment on March 12, so we will update shortly after that!

February 26, 2008
Sydney had her adenoidectomy and sinus surgery yesterday. It went really well overall. Sydney was so brave during the pre-operation stuff and to our suprise when they took her back to surgery, they had her walk back without us! It was so hard seeing her little body walk out of the room wearing a tiny hospital gown and carrying "Unis" her unicorn knowing what was going to be done to her. Anyway, we were told surgery would take about 1.5 hours and it ended up being more like 2 hours because her sinuses were so bad. They were full of thick infection worse than the doctor has ever seen and she had a polyp in one of her cavities that was so big it filled almost the entire cavity. The infection was so big it was making her sinuses buldge into her nasal pasages...yikes! The doctor took a lot of pictures (he said more than he usually takes because they were so bad) and it was amazing to see what was in there. He said it was a good thing we didn't wait any longer and that she should feel much better once she recovers. He also said her adenoids were big, but that it was definately the "CF sinuses" that were giving her so much trouble. She is to continue with her daily sinus rinses indefinately and he wants to see her every 3 months for awhile to keep an eye on her since they were so bad. It will be interesting to see how this affects her overall well-being once she recovers, it gives me hope even though I hate what CF has already done to her sinuses.

Also, he is getting a culture of her huge sinus infection and he suctioned out some tissue in her lungs with the breathing tube to get a culture of as well. Hopefully there won't be any dangerous bacteria in her culture.

Right now, Sydney seems to be doing pretty well. She is still uncomfortable, mainly tired and slightly cranky but she is eating some food and wanting to play. She will see her doctor again next week for a check-up and should be back to normal by then!

January 22, 2008
Sydney had her Sinus CT Scan done at Caylor Nickel Hospital in Bluffton today. It went really well. She almost chickened out right at the last minute when she saw the "bed" and the "big camera" but after I laid down and took a ride, she realized that it wasn't a big deal so with proof and a promise of picking a toy out from the gift shop downstairs, she got on and laid down. She laid really still and was able to get a good scan. It took about 10 minutes and Sydney said "it was easy and I almost fell asleep while I was watching the lights". She was such a good girl and I was proud of her! She picked out a stuffed Unicorn (purple and pink) and named her Unis (Unis the Unicorn).

Overall, she is less congested than she was a week ago so the antibiotics seemed to be helping. When I took a peek at the scans, I could see that her sinus cavities were completely gray and I believe they should be black (empty) butI think gray is better than white (full) but the radiologist wouldn't comment and I am not a doctor so I could be completely off!

So now we wait another month until the big appointment and pray that her congestion continues to improve in the meantime!

January 15, 2008
I took Sydney to see the ENT today because she seemed to have another sinus infection. She had one in November/December that lasted 6 weeks then she was clear as a whistle for 3 weeks but it is back. She has had numerous sinus infections and ear infections over the past 1.5 years too. Soooooo, I wasn't suprised by the suggestion of taking her adenoids out but hadn't really even thought of her having a sinus "procedure" The dr. apparently noticed my anxiety level rising so he kept saying "this is a procedure, not surgery" I think to make me feel better! He is thinking that she most likely has polyps in her sinuses which are contributing to the infections. She will have a sinus CT next week, which I suppose will confirm (or not) that? Then he explained the rare but SERIOUS possible complications, which about made me hyperventilate! But I am actually relieved in a big way because this gives me hope that she may not have to deal with this so much. With the infections, her appetite decreases, her energy level decreases, she gags on the thick post nasal drainage, coughs, etc just alot of crappy things that I want to stop!
Next Tuesday, 1/22 she will have a sinus CT, then blood work done 5 days prior to the "procedures" which are scheduled for 2/25 (wish it wasn't so far away) and she will be on Omnicef until then. The "procedures" will be done outpatient, he said we will be there for 3-4 hours...

The good news is that overall Sydney is feeling pretty well! She is very bothered by the post-nasal drainage because it is so thick but otherwise she seems to be doing well. We are hopefull that her antibiotics will kick in soon and the post-nasal drainage will stop. Thanks for keeping Sydney in your prayers! I will try to keep this updated as we get more information.

January 6, 2008
Happy New Year! We hope it is a great year for everyone! So far, it has been good for us...Sydney's test results came back and everything looked good! She is excited about going back to preschool tomorrow after having 2 weeks off for Christmas Break and getting back to her other fun activities like dance class and MOPPETS. Her next CF Clinic appointment is in early March, just a couple of weeks before we return to Sandestin for another beach vacation, Sydney is so excited to spend a week down there and get to see some of her friends from Ohio! I will try to update before her next appointment!

December 15, 2007
Sydney had her "annual" clinic appointment on 12/12 and it went pretty well. She did great with the blood draw, xray, throat culture and peeing in a cup for the first time! It took a bit of discussion to get her to agree to the "cup" but eventually she came to understand that checking out the "things" our bodies make (like blood and urine) help us to know how our body is working. She thought it was especially funny when the lady who took her urine asked "did you bring me lemonaid?"! Anyway, Sydney has been very congested since the beginning of November but her lungs sound clear and they looked great in the xray. She is taking a round of antibiotics to hopefully help clear her sinus infection. We have been really glad that will all of the head congestion, she hasn't had an ear infection. She has been taking Mucinex to help clear out the mucus and daily sinus rinses with the Neilmed Sinus Rinse kit which helps clean out a LOT of mucus from her sinuses along with Rhinocort. She has gained some weight since her last appointment and her BMI is in the 70's (above 50 is what they want for all patients with CF) so we were happy with that. We are waiting on the reults of her bloodwork and culture and are planning on getting good results for those!

Despite the congestion that has lasted for more than 6 weeks (for she and little brother Andrew!) Sydney has been able to keep up with most of her activities. I think she missed one day of preschool and one dance class but otherwise has kept up the action which is great news! Right now, the big topic is Christmas! Her Christmas list gets longer everyday and she has been doing a "countdown to Christmas" filling in a part of Santa's beard each morning. If you haven't already seen them, I attached a couple of recent video clips of Sydney playing at home to the 2006 Video Clips link on the homepage and yes I know it is 2007!

Thanks for checking in on our girl! We all appreciate your prayers and good thoughts! We hope you have a Merry Christmas and a Happy New Year! Our next update will most likely be in 2008!

October 8, 2007
Just checking in to let you know that Sydney is doing well! She had a head cold towards the end of September but only had to miss one day of preschool for it! She is SO busy these days with 3 days of preschool, dance class (which she just loves, of course!), MOPPETS, and playdates. We are definately on the go a lot these days but that is great for her since Sydney loves to keep busy! We hope and pray that she will get through this cold/flu season with no major sickness so she can keep enjoying all of her activities! Thanks for checking in on her!

September 9, 2007
Sydney had her CF Clinic appointment 2 weeks ago and it went pretty well. Her height and weight are good, her pft's are good, her throat culture results were good (no bacteria to treat) and her lungs sounded good! Can't ask for much more than that! Her next clinic appointment is in December.

She also visited an ENT this past week because she has had 4 ear infections along with chronic sinus congestion over the past year. We were concerned that she might have developed nasal polyps, which are common in people with CF. We scheduled this appointment in August after she had a double ear infection in July that took 2 rounds of antibiotics an a nasal spray to clear. It seemed like the nasal spray (Rhinocort) really did the trick for her head congestion and she hasn't had any congestion since a day 2 or 3 of being on that. So, as we expected her ENT thought her ears looked good, her hearing was good and didn't see any polyps in her nose. We are now prepared to act though if her congestion or ear infections do return.

After her clinic appointment, we were officially on vacation! We spent 2 nights at the Caribbean Cove Waterpark in Indianapolis then we loaded up the car and headed down to Sandestin, FL where we spent 7 wonderful nights! Sydney had a great time at the waterpark and just LOVED Sandestin where she was able to spend a lot of time on the beautiful beach, swim in the ocean, swim in the pool, play on the neat playground, bond with her Great Aunt Lynn, eat delicious food, take a dolphin cruis, etc etc. Just a few days after we returned from vacation to "the real world", Sydney started preschool. She was so excited about it and just loves it. We were very proud of her for being such a big girl and are so happy she is able to enjoy preschool because there was a time when we worried that she might not be able to go because of having Cystic Fibrosis. We just hope and pray that her good health continues so she can enjoy all of the fun things in life like vacations and preschool!

June 7, 2007
This is just a small update on Sydney. She has been doing really well this spring and even managed to gain over a pound. However, she had a virus that gave her a teriibly sore throat, high fever and no appetite for 3 days which caused to her lose the weight she had gained! So, we are now working on putting that weight back on her. She will be seeing a GI Specialist at Riley this month because we want to explore a few possible reasons for her lack of weight gain and hopefully just rule some things out. All in all, she is doing really well and enjoying the warm weather.

Great Strides went super this year! We fell short of our walksite goal of raising $93,000 by raising only $80,000 which was disappointing but yet exciting at the same time because that is still a lot of money! Team Sydney raised just under $10,000 this year by splitting into 3 teams: Team Sydney, B-Team Sydney and Team Zimmer. The walk itself was fantastic and we are looking forward to putting together another great walk next year.

Last night, Derek and I had the opportunity to meet Boomer Esiason who is not only a former NFL great but also dad of Gunnar Esiason who is 16 years old with Cystic Fibrosis. It was neat to hear all of the amazing things Boomer does for Cystic Fibrosis with the Boomer Esiason Foundation. It is so encouraging to know that there are people like Boomer with so much power and influence out there fighting CF with us.

Sydney will be back to Riley for CF clinic in August and we will update on her GI appointment this month. Otherwise, no news is good news! Thanks for prayers and well wishes!

April 22, 2007
Sydney had a clinic aapointment this past week. Her lungs were clear and her lung functions were good but she has still not gained any weight. She will be seeing a GI doctor in a few weeks to start exploring possible reasons for her lack of weight gain. We are hoping and praying that we will be able to get this fixed soon because weight gain is an important part of good health for a person with CF. Sydney has also been fighting chronic sinus congestion since February. She had a double ear infection a few weeks ago and her congestion seemed to go away with the antibiotics, however it came back about a week later and Dr. Howenstine says she has a sinus infection and put her on a 20-day course of antibiotics. So, all in all the appointment was about half good and half not so good. On the outside, Sydney seems to be doing really well. She is active, happy and enjoying the good things in life (swim lessons, sand boxes, swinging on the swings and playing with friends). It is our hope and prayer to get her inside to match her outside so she can keep this up for a long time.

February 10, 2007
Sydney's clinic appointment in January went pretty well. Her lungs were clear and her lung function was good. She hasn't gained much weight since her last appointment so we are still giving her a high fat diet. It isn't easy to give someone a high fat diet and a healthy diet at the same time but we are trying. We did find that she had a height growth spurt though and that was great news! She has gone from the 10th percentile in height to the 25th percentile. We are very happy about that. She also didn't culutre and threatening bacteria's which is always good news.

Sydney has been keeping busy this winter and even with all of her activites and exposure she has been able to avoid most sicknesses that have been going around. She is currently going to MOPPETS twice a month which is children's program for the Mothers of Preschoolers group, we go swimming every Friday, take Andrew to Wee Read at the library on Thursdays, goes to the youth group at church on Wednesday evenings and Sunday School on Sunday mornings...as you can tell the girl is on the go! We are thankful for prayers and know that with God's grace Sydney will continue to be healthy and be able to live a long happy life!

Please be sure to check out the Great Strides 2007 page and look for updates and information. We have been working on Great Strides 2007 since September 2006 and as Walk Chair, I am really excited about it!

December 5, 2006
I am really sorry to have gotten so far behind with this journal, the kids just keep me really busy! Sydney's last CF Clinic appointment was in October and it went pretty well. She ws in the middle of a chest cold that gave her a pretty junky cough but Dr. Howenstine at Riley thought her lungs sounded great and her nose looked good. The doctor said the cough may last up to 3 weeks and luckily it was gone after 2 weeks. The downside to the appointment was that Sydney had lost a little weight (almost 1 pound) since July and although it was most likely related to her cold, it did disappoint us all because we work really hard trying to get/keep weight on her. Sydney had her 3-year well exam in November (a little late!) and her weight had gone up 1/2 pound since her CF Clinic in October so once again, we were happy about the gain but sorry that it wasn't more. So just recently Sydney has begun a very high calorie nutritional supplement called Scandishake. She takes one of these a day in addition to 2 Carnation Instant Breakfasts. We are really hoping this will help her gain some weight.

All in all, Sydney is doing just great. She has been having a really fun fall and loved seeing her family for Thanksgiving. After going to most of the season games, she was even able to go watch our local high school team play in the Indiana State Football Championship. She had a blast at the game although I think she would say that she had the most fun swimming at the hotel pool or watching the fireworks at the tree lighting in Indianapolis! We are really excited that she has been so healthy this fall because she has been participating in 3-4 toddler activites per week (and we all know how germy toddlers are!)

Sydney's next CF Clinic is on January 10, 2007 so this will be our last update for the 2006 year unless something comes up before then. We hope everyone has a Merry Christmas and a Happy New Year!!

July 12, 2006
Sydney's culture results came back and she did not culture PA! Thanks for the prayers, they are working!

July 5, 2006
Sydney had her "annual clinic" today. It was loooong but went well. Her PFT's (Pulmonary/Lung Function Test) were good - both of the top 2 numbers were over 130% and the bottom number was unmeasurable because she doesn't do the pft properly enough to get a reading on that one (I think that is small airways?). Her weight was up a little and she is finally over 30 pounds (50th%) and shegrew a tad bit but is still short at just under 36 inches (14th%) which gives her a BMI of 84% - which is really good. We really wonder if she will always be short and also if she would be taller if she had been diagnosed sooner. Her chest x-ray showed healthy/clear lungs so we are just waiting on the culture results and hoping they come back clear of any bacteria. No change in meds/treatments so she is still taking enzymes, prevacid and sometimes glycolax (stool softner) and doing her vest (which she now dislikes).Prayers for clear culture results would be great! We are always worried about Pseudomonas (PA) showing up and she will officially be considered PA- free this October after 2 years of clear cultures.

Sydney has been having a great summer and her biggest news is that she is now a "Big Sis"! She loves her little brother Andrew (who was born May 3, without Cystic Fibrosis) and he sure loves her too. It has been amazing and wonderful for us to see her in the full glory of her "big sisterness"! Other than taking care of her brother, Sydney has been busy swimming, playing outdoors, going to Toddler Time at the library, and doing various other summer activities.

April 21, 2006
Sydney had her quarterly CF clinic visit 2 days ago and it went very well. She started off by taking a Pulmonary Function Test (PFT) and she did a GREAT job! She got 2 really good readings that said her FEV1 was 115% and 119% which means that her lungs are functioning higher than 100% (according to her age, weight and height). This was GREAT NEWS to us, looks like her constant running around is really paying off! After that, she did her throat culture to check for any threatening bacterias (results will be in next week). Then she was checked out by her CF doctor who said her lungs sound nice and clear, her nose looked clear and was very happy with her PFT results. She has gained weight since her last appointment but not quite as much as we had hoped (she weighs 29.2 pounds) and it seems as though she may be having some trouble with absorbing foods lately so we are now giving her Prevacid once a day which may help control stomach acid to help the enzymes work more effectively. Hopefully we will see some good results from that soon. Lastly, she had blood drawn to check her Vitamin A levels again since they have been a little high over the past year. We decided to do a complete vitamin check to make sure none of her levels have dropped too low since she has been off all vitamin supplements for many months now. Those results will be in next week. All in all, it was a good appointment. We are really happy to be at the end of cold/flu season so we can relax a little bit and pray for Sydney to keep up her good health. Thanks for checking in on her!

March 30, 2006
Hello, just another quick update to let you know that Sydney is doing really well. Since the last update, she has been sick twice. Her first illness was the 24-hour flu, which thankfully came and went within 24 hours and her second illness was a virus of some sort that gave her a high fever, nasal/sinus congestion and a headache that lasted approximately 48 hours. Other than those 2 minor illnesses, she has been very healthy and enjoying life. She is finished with gymnastics now, has another 4 weeks of Toddler Time at the library and is enjoying the warmer weather that spring is finally bringing us. She is also VERY excited about becoming a "Big Sis" soon. Thank you for keeping her in your prayers - it is working!!

Be sure to check out the link on our homepage for Great Strides 2006 information! Team Sydney is back in action!!!

February 10, 2006
Just wanted to give a quick update on Sydney's reports: she has only cultured Staph this time, which is a HUGE relief. We are always worried about Pseudomonas or other bugs and although we don't like it that she has Staph, it does not seem to be causing any problems and we are not going to treat it at this time. Her Vitamin A levels are still higher than normal but they have come down. Normal is anything between .2-.5 and her level is now .63 which is down from .75 in July. So we will continue cutting out Vitamin A for now. Sydney was able to start her Toddler Time class at the library this past week and had a blast! She will also be starting Gymnastics on the 16th and can't wait to work on her sommersault! Please pray that she stays in good health! Thanks!

February 2, 2006
Sydney had her quarterly CF clinic visit yesterday and although it was a long visit (2 hours), it went well overall. She started off with her first try at taking a Pulmonary Function Test (PFT). She has taken an infant PFT in the past, which is much different than a regular PFT because the infants are put to sleep, then their lungs are filled with air and then the air is pushed out and the volume of the air is measured to calculate lung capacity (among other things). The regular PFT does the same thing, except the patient has to fill their own lungs with air then blow it out into a tube. Most patients don't start giving good PFT's until they are 5 or 6 years old since it requires a lot of compliance (and toddlers just aren't very compliant, are they?!) but we have been practicing with Sydney for a while and she seemed very interested in trying so we decided to give it a shot. She did really well and although she did not give a perfect sample, she was close and we are hoping that she will be able to do so during the next appointment or 2. Her FEV1 was 84% which would mean that her lungs are functioning at 84% capacity if she was able to give a good sample. We assume that her actual lung function is higher since this was her first try and of course we hope it is more like 100% and at this time we have no reason to believe that it isn't. We are very happy to know that she is close to doing a good PFT because it gives us one more measure to keep an eye on and look for changes in her health (sometimes a drop in lung function can be seen before other signs of infection, mucus build-up, etc. show). After her PFT, we saw the pulmonologist. We have been concerned with a cough that Sydney has had since she got over Croup a week and a half ago but the doctors said that her lungs sounded great and that we should expect her cough to be gone in a couple of days because it is just some nasal congestion. So we will continue squirting saline spray into her nose and sucking out any drainage with the aspirator. Sydney was such a big girl during the appointment. She was very cooperative and did a great job taking deep breaths while having her lungs listened to. She also had a sputum culture taken and did very well with that. We spent some time discussing Sydney's overall CF treatments and our long-term plans for her. Basically, since CF affects every person so differently, there are many different treatments/medications that are used from person to person some which are used less and some which are more common. Sydney is considered "low maintenance" right now because she only takes enzymes with food and daily CPT (her Vest) with no long-term nebulized meds. I just wanted some reassurance that we were doing everything possible to meet her CF needs right now since I know that many kids with CF are doing more treatments on a regular basis. We got that reassurance and feel very comfortable with her treatment regime. For the most part, "the proof is in the pudding" because despite the occasional virus/cold she has managed to stay very healthy while having a great time living! The one "concern" we left the appointment with is that her weight has dropped almost a pound from her last appointment in October. We feel that some of that loss is due to her not eating for 3 days while she had Croup but it seems like we also need to really beef up her diet to help her gain. After the visit with the pulomologist, Sydney had some blood drawn to check her vitamin A levels, which were high last July. Once again, she was a very big girl and didn't even cry. After the blood draw we were out the door! We will get the results from the sputum culture and blood draw in a week. We are praying that she doesn't culture any threatening bacteria and that her Vitamin A levels are back in the normal range now. We will update again once we get the results. Thanks for the prayers and support, it really helps!
Wait! I almost forgot to mention one of the fun parts of the appointment! I was able to meet an online friend that I have been emailing for over a year and a half now. Amanda and her son Ethan (2 years old with CF) were also at Riley for their quarterly visit. It was really neat to finally get to see them in person because she has been a great support to me! You can read more about Ethan at his website.

January 26, 2006
Hello! Well, for the first update of the year - I will tell you that Sydney has been sick!! BUT, the good news is that she is doing much better now. She coughed 5 or 6 times on Friday (1/20) so I knew she was probably coming down with something. By Saturday morning, she was coughing/barking like a seal, which I knew was a sure sign of Croup. So, after reading about it online, I called Riley Children's Hospital to speak with the Pulmonologist (lung doctor) on call and pretty much confirmed what I already knew - which was that it was most likely Croup and that there isn't anything we can do other than try to make her comfortable while the virus takes its course. She had a low-grade fever off and on during the whole weekend and almost no appetite but the girl was a real trooper about taking multiple steam baths, Motrin and using the "nose sucker" (aka Nasal Aspirator). By Monday, the "barkiness" was pretty much gone and she was left with head congestion, a cough and low-grade fever - although she was playing up a storm anyway. She still has a slight cough today but we are keeping a close ear (stethoscope) on her lungs and they sound good so far. We are going to keep her in "isolation" (away from other kids and public places) to try to avoid a secondary infection for another week or so, which will be just about the time she heads down to Riley for her quarterly CF Clinic visit - on February 1st - good timing! We are hoping that she is doing better by then because she is due to start up another session of Toddler Time at the library and a Toddler Gymnastics Class, which are very important to her! Thanks for checking in on her and keeping in your prayers! We hope to update with better news next week!

December 5, 2005
Sydney has continued to do well. Around the middle of November, we were able to get some information about the CF mutation Sydney has that had been previously unidentified (her gene mutations were just known as DF508 and unknown). By going through a company that actually reads the coding of the CFTR protein (rather than scanning the protein to look for more common mutations) we were able to find an actual name for the second mutation(c.2751G>A). This doesn't tell us a whole lot about her particular case of CF but we did find out that there is at least one other known case with the same mutations involved. Finding the name of the mutation also gave us the ability to have amniocentesis done to tell if Sydney's little brother/sister-to-be has CF or not. We found out today that the baby does not have CF! Woohoo! Now, back to Sydney, her lungs have been clear and she has been enjoying the Indiana snow! She had a great Thanksgiving and loved seeing so many of her family members. She is also VERY excited about Christmas and keeps talking about Santa Claus putting presents under the tree for her! She never ceases to amaze us or make us laugh! Thanks for all of the prayers we continue to get - we appreciate it and will try to update again soon!

November 2, 2005
We just got the call with Sydney's culture results and there was NO PSEUDOMONAS!! That is what we were hoping to hear so we are very happy! It has now been over a year since her last culture that showed Pseudomonas. Gooooo Sydney! We hope to update soon with a general report of how Sydney is doing!

October 30, 2005
Well, it sure has been a while since this has been updated and we are sorry about that. We are really going to try to make more of an effort to put an update on at least one a month... Sydney had her quarterly visit at Riley Children's Hospital this past Wednesday and the appointment went very well. Her lungs sounded nice and clear and she weighed in at 28.8 pounds which puts her at the 57th percentile! We were very pleased about this and so was Dr. Howenstine. There have been studies that recently show that there is a direct correlation between weight and lung function. In a basic description, it seems that children that are in the normal/high range on the growth charts for weight at age five are found to have a higher lung function at age ten (than those who are lower on the growth charts). So we are definatley wanting to get/keep Sydney as high up on the growth charts as possible. Sydney had a throat culture taken and we will get the results in a few days. We are hoping that it will be clear of Pseudomonas once again. If all goes well, her next visit will be on February 1, 2006. Thank you very much for keeping Sydney in your prayers. We will update on the culture results when we have them this week.

July 19, 2005
We got the results from Sydney's sputum culture and she DID NOT culture pseudomonas! This is always a relief for us to hear. Her vitamin levels came back good except her Vitamin A, which was a bit high, so we have reduced her multi-vitamin a little and she will have her levels re-checked in 6 months. Sydney has had her Vest for 5 days now and is doing a great job with it! She likes to show it off to friends/family and loves to make silly noises while using it. She is currently doing one 30 minute Vest treatment everyday.

July 6, 2005
Sydney had her "birthday visit" today and it went VERY well! We were dreading this appointment but she was such a big girl that it turned out to be a really easy one. First we met with her respiratory therapist(RT) who went over a few things with us then measured her to see if she is big enough for The Vest and it turns out that she is! This is very exciting for us because the Vest will make doing her Chest Percussion Therapy treatments much easier for us all - which will hopefully lead to being able to them longer and more often. Sydney liked this part of the visit because her RT gave her Dora and Elmo stickers! After meeting with the RT, Sydney was sent to the CF Clinic where she was weighed and measured, gave a sputum culture, her lungs were listened to and her treatments were discussed. She has continued to climb up the charts for growth and is now above the 50th percentile for height and between the 25th and 50th percentile for weight (which is a HUGE improvement from a year ago when she was 5th for weight and 10th for height!). Her lungs also sounded good and clear. We will get the results of the sputum culture in a week. We then we back over to see Sydney's RT so that Sydney could try out the Vest to make sure she likes it (and would use it). Sydney loved the Vest! While back with the RT, Sydney was able to watch an older girl (16ish) with CF doing her PFTs (lung function test). She seemed very interested in what the girl was doing. Next and Last, we were sent up to the bloodwork lab where they drew lots of blood. The blood is used to check nutritional levels and we will get the results from that within a couple of weeks. Sydney was great for the blood draw and had a MUCH better experience this time compared to her experience a year ago. Throughout the appointments Sydney had a really good time - she was even talking about her day after we got home! We have realized that she really is growing up! We would like to thank everyone who is so supportive of us and we will update with the test results as we have them.

June 20, 2005
Sydney celebrated her SECOND birthday this past week (6/15) and has been really enjoying her life as a two-year-old! Her health has been very good so far this summer and she seems to be getting much bigger! Her next CF Clinic appointment is coming up on July 6 -which we are all pretty much dreading because it is her "Birthday Appointment" which is a nice name for the annual appointment that involves some extra testing - bloodwork, etc. We pray that will go smoothly and Sydney will get back good results!

April 28, 2005
Sydney had her CF clinic appointent at Riley Children's Hospital last week and it went pretty well (if we don't count having to strap her down to put the IV in while 3 nurses and both Derek and I hold her still for about 10 minutes!) although it was a LONG day! We got to Riley at 10:30 for the CT Scan and just barely got done with that in time to head up to the CF Clinic for our 2:00 appointent. When we got to the clinic, we met with her pulmonologist who told us that she was pleased with the looks of Sydney's lungs. We had been very concerned about them because she had been coughing for almost 4 weeks (the cough started right after she had the stomach flu) however her DR. told us that Sydney's lungs basically looked like lungs they would see for a child her age without CF. This was GREAT NEWS to our ears! After listening to her chest (which sounded very clear) it was determined that her cough was more upper-respiratoy than lower. At this point, she is not even coughing anymore (and hasn't coughed for 5 days!!) We were a little disappointed to find that she had not gained any weight since her clinic appt. in January but we weren't too suprised since she had gone through a major bought of the stomach flu (her CF DR thinks it was actaully rotovirus) in March. We have increased her enzymes by one (now taking 5 Creon5 with meals and 3-4 Creon5 with snacks). We got the results of her sputum culture a couple of days ago and were very happy to hear that she didn't culture pseudomonas!! Since she hasn't cultured it for 6 months (3 clear cultures) and her CT Scan didn't show any signs of it hiding in her lungs, we will not be giving her TOBI until she cultures is again - hopefully never!!! We are all very happy about this!

Derek and I have been working hard on Great Strides the past couple of months! So far, we have over 30 members of Team Sydney who will be walking with us. We had a fundraiser this week at East of Chicago (local pizza place) and it was really fun! We had some really nice signs and table tents made for us (thanks to www.thirdweb.com) and it was really neat to see people reading about Team Sydney and Cystic Fibrosis throughout the night as we worked.

We continue to be amazed and so appreciative of all the support we are recieving from family, friends, members of our community and even from people we don't know! We are so blessed! Thank you!

April 9, 2005
Well, Sydney has a quite a time over the past few weeks. Right after our last update, she got the stomach flu. It was 4 days of vomitting, high fevers (105.5 was the highest we saw) and general achiness/discomfort. Shortly after getting over the stomach flu, she got a cough. It started as a dry cough and after a few days turned into a wet, mucusy cough...and she still has it. She went in to the pediatrician's office yesterday so that we could get an opinion on how to handle this because we don't want to run out and put her on antibiotics if she doesn't really need them (since she has already been on them 5 times in the past year) but we also don't want to let it go so much that it turns into pneumonia. SO, after having a chest x-ray that shows no signs of pneumonia we have decided to wait it out a little longer and are praying that it goes away on its own. Her next CF clinic visit in coming up on April 20th where she will have a CAT Scan done, which will give us a really good idea what is going on in her lungs. She seems to be feeling very well and is really enjoying the nice spring weather we have been blessed with.

March 19, 2005
Whew! Sydney's website was temporarily lost in Cyberspace but luckily we managed to retrieve it! Sydney is doing really well right now. She did have a cold that lasted for just over 3 weeks and just a day before we were going to have to seriously consider taking her to Riley, she woke up completely over the cold! The power of prayer is awesome! She hasn't had any troubles since then and has been keeping very busy with her toddler activities (Wee Read, Tots in Motion, play dates, etc). She has been enjoying the warmer weather and takes every opportunity to play outside. She loves to watch birds fly in the sky and just recently, we spotted her holding her baby doll up over her head to show her baby the birds flying above. She was "oooohing and aaaahing" to her baby and pointing to the birds with the baby's arms. It really touches our hearts to see her playing like that and we pray that she is able to have her own children someday.

One bit of wonderful news is that we were approved for assistance from the TOBI Foundation! The foundation will cover all but $10 of our over $500 (per month!) co-pay for TOBI!!! We received this news just a week before it was time to order our next months supply, so we were very happy about that!! Of course, we are praying that Sydney's next culture in April with be free of pseudomonas, which will mean that she will be off of TOBI until she cultures it again (hopefully never!)

Derek and I have been very busy making plans for the upcoming Great Strides Walk! We are very excited about it and will be sending out letters to family & friends soon. Our goal for Team Sydney is to raise $5,000 so we will need lots of help from everyone! It is going to be a great time and the money raised will help Sydney and thousands of others with CF get better treatments and eventually a CURE for CF!! Woohoo! Be sure to check back for more information and progress updates on Team Sydney (as well as on Sydney herself!).

January 29. 2005
It is a whole new year for the Myers' Family and we are sure hoping it is a better one than 2004! So far, it has been going pretty well. Sydney had her appointment at Riley on the 19th and although it was very stressful for us, the results were pretty good. Her sputum culture came back with no Pseudomonas again, for which we were DO relieved!! I just cannot even tell you how anxious we start to feel when we know the results are due to come anytime, it is really not a good feeling. It is a great feeling however when they come back and are good! She does still have some staph (aureus) growing in her lungs but it is still not causing any problems. She had a lung function test done again and her function levels are all in the normal ranges, although some of them have gone down a little bit since her lung function test done in August and we are not sure why yet. She has her next CF Clinic appointment on April 20th and will be having a CAT Scan done to see if there are any signs of infection/scarring in her lungs (which may be the cause of the decrease in lung function). Dr. Howenstine wants her to continue to take TOBI (28 days on/28 days off) until her next appointment in case there is still Pseudomonas hiding in her lungs. We are working on getting some assistance with paying for TOBI (as most people already know, we had some major decreases in insurance benefits this year making one month of TOBI cost over $500 out-of-pocket) so hopefully something will come through soon!

We want to continue to say thanks for all of the prayers, emails, cards, etc that we have been recieving! Your support means more than you will ever know and gives us so much hope!

Also, we would like to send out a special Thanks! to the staff at Brown Elementary in Hilliard, OH for their special gift that came at just the right time! We miss everyone at Brown so much and really appreciate your thoughtfulness. You have been a blessing to our family in many ways.

December 27, 2004
Sydney is doing very well and has so far managed to avoid getting the flu/colds that are going around. She had her 18-month appointment with her pediatrician on December 15th and weighed 22 pounds 12 ounces (25th%). She also had a sputum culture done and a week later when we got the results, we found out that she did not culture Pseudomonas!!! This was the best news we have had in a long time!! We moved into our new house on the 15th after her appointment with her pediatrician and Sydney is having a great time exploring and playing now that she has more room to do so. She has her quarterly CF clinic visit on January 19th at Riley and will be having another sputum culture taken as well as a Pulmonary Function Test (PFT) done.

November 11, 2004
Sydney had an appointment for her flu shot today at her pediatrician's office. The shot went well. She also had a weight check and has gained 2 pounds 3 ounces over the past month!! She has grown 1/2 inch too! So, she is now at 50th% for height and 30th% for weight!!! That is the best news we have had in a while - Praise God!!

She is doing pretty well overall, although she seems to get congested easily now that fall weather is here. We are always worried that she is getting sick, but hasn't been sick yet. She is always her normal cheery self, even when congested. She just had her last session of Wee Read at the library until it starts again in February and is very excited to move into her new house. She knows right where her room is and will go in and point while saying "dis" if you ask her where her room is!

We continue to feel blessed by the gifts, cards, emails and especially prayers that we recieve. We are asking for a specific prayer right now, that Sydney is able to get rid of the Pseudomonas that is/was growing in her lungs. We are praying that she will get rid of it and keep rid of it for many years (especially since there is a Pseudomonas vaccine in the pipeline now). Thank you very much for continuing to to pray for her.

October 18, 2004
We just got the call from Riley with the results of Sydney's sputum culture. Unfortunately, she has cultured pseudomonas again. She will be doing another 28-day round of TOBI (inhaled antibiotic given twice a day) and 14 days of Cipro (oral antibiotic). She has also developed a little cough and there is no way to know whether that is from the pseudomonas, a cold virus, or something else. If the cough doesn't get better, we may need to start giving her Albuterol which helps open her airways, making breathing easier. We are asking that everyone pray for her health and that she get rid of (and keep rid of) the pseudomonas. For now we will keep praying, begin the two antibiotics and do her Chest Percussion Therepy (CPT) twice a day (rather than once a day).

October 12, 2004
Sydney's appointment at Riley went well today. We met with Dr. Howenstine and really liked her. She checked Syd's nose, ears, lungs (with stethoscope) and belly. She said that all looked/sounded good. Sydney has only gained about 8 ounces over the past 2 months (although she grew about an inch) so we have decided to increase her enzymes and give her Carnation Instant Breakfast (CIB) with her Whole Milk. Increasing the enzymes and giving her CIB will help her get more calories and should help her put on some weight. She is in the 28th% for height and 8th% for weight and our goal would be to get those two closer together. She also had her sputum taken and we should get the results of that in a week. We are praying that there will be no pseudomonas in there! Our next appointment is scheduled for Mid-January and she will be having another Pulmonary Function Test (PFT) at that time. Hopefully there will be no need for us to have an appointment at Riley in the meantime!!

We would like to continue to give thanks to our friends and family who have been sending us cards, donations, gifts and most importantly prayers. Your support and love means so much and gives us great comfort. We have been keeping everything we are given so that Sydney will always know how much she is loved.

October 8, 2004
Sydney has been doing very well. She is extremely active and has become quite the little handful!! :) We decided to change doctors at the Riley CF Clinic (she will now be seeing Dr. Howenstine, who is the head of the clinic - and we are VERY excited about that!). When we changed doctors, we also had to change her next appointment date, so we will be going to Riley in 4 days, on October 12. We are praying that when they check Sydney's sputum (mucus) she will not culture (grow) Pseudomonas or Staph. I will update on the appointment and culture when the results are in (which will be approximately 5 days after the appointment. Thank you for all of the prayers and continued support!

August 25, 2004
We got the results from Sydney's previous Sputum culture today. At this time, no Pseudomonas cultured in her sputum. That is definately a good sign, although it does not mean that she is definately Pseudomonas-Free (because the pseudomonas is known to hide). She will have another culture at her next appointment on October 20th and we will hope that again no Pseudomonas cultures then. Also, we got the news that she did culture Staphylococcus Aureus (Staph) again. We did not know that she cultured this the first time and we were a bit upset about the Staph (and more upset that we didn't know about it until now) but we were told that it is the most common bacteria found in CF patients and that because it is relatively easy to get rid of, they don't treat it unless it causes a problem because they don't like to use antibiotics unless necessary since CF patients typically use many antibiotics. So, we got some *sorta good news* and some not-so-good news at the same time. It is just seems like we are fighting an uphill battle right now.

Again, she is not considered sick and the Staph is not contagious (to anyone who does not have CF).

Aside from all of this, Sydney is doing wonderful. She continues to be VERY happy and everyone who sees her and knows her *secret* is amazed because by looking at her and watching her, she seems perfectly healthy. We feel totally blessed to have such a special gift in our lives, she is an amazing gift, that is for sure!

August 18, 2004
We had our second appointment at Riley Children's Hospital today. It went very well. Sydney had her first Pulmonary Function Test (PFT) and her lungs are functioning normally at this time! That was great news to our ears. They also took another sputum culture (to test her mucus/phlegm for pseudomonas and/or other bacteria). Dr. Kim, her CF doctor seems to think there is a good chance the pseudomonas is only growing in her throat. We will get the results of this test back next week and if she does not have pseudmonas this time, then she will be taken off the TOBI (she is already finished with her round of Bactrim). She continues to gain weight and is now up to 19 pounds, 8 ounces!! What a big girl! She has also grown almost a half of an inch. The enzymes seem to be really helping her out. Her appetite is wonderful and she loves to eat. At the appointment, we were shown how to do the Pitty Pats and have started doing them once a day (for a short session). We are mainly doing them now to help her get used to them so that if she were to get sick or if her lung function were to decrease, we will be able to do them with her already being used to them. She seems to like them so far as they are sort of relaxing for her. So, the prayers have been working and we continue to ask for them. A special thanks to our friend Julie, who put together a bag of toys for Sydney to play with at her appointments. They really helped her get through the long day!

Taking TOBI to fight Pseudomonas

August 12, 2004
We found out the results of Sydney's genetic test a few days ago. When a person has CF they have two mutated genes (one from Dad and the other from Mom). Sydney has a DeltaF508 (the most common and most severe mutation) and an unidentified mutation. At this time, we don't know which mutation came from who. As far as the unidentified mutation, that means that the mutation is not common enough to be given a name. Right now, there are something like 900 named mutations (the number varies depending on what you read!). We do know that most often the DeltaF508 can bring with it all of the CF symptoms. For statistics, it is something like 60% of people with CF have 2 copies of the DeltaF508 (so they usually have ALL of the typical CF symptoms too). So, we are hoping and praying that her other mutation is a mild one and will help her prognosis.

Sydney has been taking Bactrim (oral antibiotic) and TOBI (inhaled antibiotic) for over a week now to try to get rid of the pseudomonas. She has been coughing some lately (and she didn't used to cough) so we don't know if it is because the mucus is getting thick in her lungs now, or if it is from the TOBI or what. She seems to feel fine and we are just taking things a day at a time. She is doing really well with the TOBI, she sits in her swing and watches a video while the nebulizer does its thing. What a good little girl! Sydney's good friend, Julie, put together "Sydney's Special Box" which is full of all kinds of neat things that Sydney can play with during her treatments and doctor appointments. Thank you Julie!!

We will be heading to Riley on August 18th and Sydney will have her first Pulmonary Function Test (PFT) which will tell us how her lungs are functioning. Derek and I will also be learning how to do Chest Percussion Therapy (CPT's aka Pitty Pats).

August 2, 2004
Derek and I have decided to continue taking Sydney to Riley Children’s Hospital in Indianapolis. We made this decision after weighing the pros and cons and for now, Riley has more pro’s for us because they offer equipment for infants that Lutheran Children’s Hospital does not have. On July 30, we got a phone call from Sydney’s CF nurse at Riley (Judy Hollingsworth) regarding some of the tests they ran on Sydney at our previous visit. Judy told us that Sydney’s nutrition looks really good. Her vitamin levels were all average (which is great because often patients who have only been taking enzymes for a few weeks will have very depleted vitamin levels). On the down side, we were also told that Sydney has cultured Pseudomonas Aeruginosa in her lungs. Pseudomonas is a type of bacteria that is often found in the lungs of patients with CF. It can be tricky to get rid of, so Sydney will be doing a 28-day round of an antibiotic (TOBI) that will be given through a nebulizer and a 2-week round of Bactrum (an oral antibiotic). Having Pseudomonas is definitely not a good thing, but it may not be bad either. It can mean that Sydney will be more prone to respiratory infections but it may not affect her for a long time, or at all. We are hoping to be able to get rid of it, but only time will tell. Also, Sydney is not considered “sick” at this time and Pseudomonas is not something that someone (without CF) can catch from her.

Many people have asked if we have a Trust Fund for Sydney so they can send money for her treatment. Of course, we are not soliciting for money but we have now opened a Fund for Sydney. When Sydney was diagnosed, one of the first things we were told is that CF is one of the most expensive disorders to have and because we want only the best care for Sydney we will graciously accept monetary gifts (any money received will be used for her treatment and care only). For those who have requested this information, funds for Sydney can be sent to:
First Bank of Berne
Attn: Larry I. or Sharon N.
102 W. Main Street
Berne, IN 46711Checks written to:Sydney Myers in care of First Bank of Berne
We want to thank everyone for his or her prayers and supportive words (cards, emails, phone calls, visits, etc). It really means a lot to us to know that so many people are praying for Sydney and for us, especially right now when we are still feeling devastated by this diagnosis.

July 21, 2004
Today we met with most of the CF care team at Riley Children’s Hospital in Indianapolis. We were really pleased with the way the appointment went, but are waiting until we meet with the complete CF care team at Lutheran Children’s Hospital to make a decision. At today’s appointment we met with the team coordinator (who schedules the individual appointments with the team members), the pulmonary doctor (lungs), the dietician, and one of the respiratory therapists. They took a culture from Sydney’s throat to check for any existing bacteria (this is something that will be done at most of her appointments because it is helpful to know what may be growing in her mucus). They also drew blood for genetic testing to find out which two DNA mutations she has inherited from Derek and I (which may be helpful for treatment) and they drew blood to check her nutritional status (to make sure she is now absorbing proper amounts of vitamins, etc. with the help of the enzymes she is taking.) She has gained another 4 ounces over the past week, which is really good and they listened to her lungs and tell us that they sound good right now.

No matter which clinic we choose to take Sydney to, we will be starting Percussion Chest Therapy (aka Pitty Pats) within the next month. This is important to start now even though she isn’t showing any respiratory symptoms because it will not only help prevent bacteria growth (because it helps thin the mucus in the lungs and thick mucus can harbor bacteria growth) but also because it is important for her to get used to this as part of her routine so that if she does get a respiratory infection it is easy to continue or increase. Eventually, she will be able to wear a vest that will do the Pitty Pats for us.

One main thing that was stressed in her appointment today was PREVENTION. There are many things we can do to help prevent Sydney from becoming sick. A big one is good hygiene. Anyone who is in any contact with Sydney needs to make sure they wash their hands frequently and doesn’t try to kiss her (not easy to do since she is so kissable!). We also will have to keep our eye on her when she is playing with other kids and toys. Right now this isn’t easy because she puts everything in her mouth. We will also have to try our best to keep her away from kids that are sick since she is at an increased risk from sickness. We will all be getting Flu Vaccines this year and every year on because while influenza may not be harmful to most people, it can be very harmful for Sydney. Hopefully most (if not all) of our family will be getting the vaccine too.
So for now, as Benjamin Franklin says, we will take “An ounce of prevention for a pound of cure” if it means that Sydney’s lungs will be in good shape WHEN a cure for CF is found.
July 2, 2004Today we met with some of Sydney’s CF Care Team – a pulmonary (lung) doctor and his nurse. The appointment was mainly a consultation for us to get the game plan in order. We were given some more information (book and video) about CF and were able to get some answers for questions we had. The doctor listened to her lungs (he says they sound really good right now). He was also able to check her stool (he was pleased with the appearance, which means that she is absorbing the fat/protein/vitamins now) and she has gained 4 ounces in the past week. The good stools and weight gain are both signs that the enzymes are working for her. Our next doctor appointment (July 14) will be with her pediatrician for her 13-month shots/exam and for a consultation about the CF Care Centers we are considering for Sydney. The local center is at Lutheran Hospital in Fort Wayne (where her pediatrician is located) and they have approximately 45 CF patients. The other choice is Riley Hospital in Indianapolis where they have approximately 400 patients. There are both advantages and disadvantages to both so that is what we will be discussing during the consultation. As a side note to this, our pediatrician told us that she believes Riley may be a better place for us to go (larger, more cutting edge technology, etc) but is checking into both facilities in the meantime to supply us with as much information as possible. We will be meeting with an entire CF team (respiratory therapist, lung doctor, pharmacist, nutritionist, social worker, etc) in August.
In the meantime, we have been looking into some holistic ways to supplement her medical treatment. So, she is taking some vitamin and mineral supplements along with the enzymes and vitamins from the doctors. Sydney is doing very well right now. She has been having all kinds of fun and doesn’t mind the additions to her daily routine.

June 24, 2004Our lives were forever changed this week. To make a VERY LONG story short, we found out on Wednesday (June 23) that our daughter, Sydney has Cystic Fibrosis (CF). This obviously came as a HUGE shock to us and although it is not a parent’s worse nightmare, it is pretty high up there on the nightmare list and has been somewhat traumatic for us to learn. At this time, we are still in the process of learning about CF ourselves, but what we can tell you is that it is not a fatal disease, although it can mean a shortened life span for Sydney. CF is a genetic disorder (not contagious) that Sydney has had since she was conceived. As we have found out, Derek and I are both recessive carriers for the CF gene and when 2 people that have the recessive gene have children, there is a 25% chance that each child will have CF. As for statistics, approximately 1 in 400 marriages unite 2 carriers of this recessive gene (many of which marriages will produce no children with CF since the chance is 25% per child) and 1 in 3,200 Caucasian babies are born with CF.

CF is commonly associated with respiratory infections. However, it also affects other organs in the body – mainly digestive organs. For the time being, Sydney is being treated with vitamin and enzyme therapy that provide extra nutrients and will help her body properly break down nutrients so they can be absorbed and put to use in her body. She has continually gone down in size on the growth charts (weighed 18 pounds at one-year which puts her in the 5th percentile for weight) and we now know that her small size is mainly due to her body not being able to digest and absorb the nutrients properly. We will be meeting with several specialists over the next few weeks/months to determine what other course of action to take to prevent/treat possible respiratory problems she may have now or in her future. It is likely that along with the vitamin and enzymes, Sydney will also need daily breathing treatments and other forms of therapy for the rest of her life.

As you can only imagine, this has been an awful lot for Derek and I to take in and we are working towards accepting this. We could have never imagined that in taking her to see her pediatrician on the 23rd that we would be leaving the Children’s Hospital the next day with our daughter having Cystic Fibrosis. Sydney is doing wonderful and doesn’t seem to have a clue that she may not be quite as healthy as we thought. For those who do not know Sydney as well, if I had to use one word to describe her, I would choose sweet. Of course, she is also beautiful, intelligent, funny, and I could go on forever but I would choose sweet because she is just such a loving little girl. She loves her family, friends, doggie, toys, and blankies by giving them frequent hugs and making an "ahhhh" sound. Just recently, she attended the first birthday party for a friend of hers and there were 3 other babies about the same age as Sydney. She had a great time hugging them and when she couldn’t hug them, she just put her arm around them while they were playing! Of course, if someone had asked us a few days ago to describe Sydney, "Perfect" would definitely be one of the words that we would use to sum her up. With the initial shock of finding out that she has CF, we naturally second guessed whether that word could be used for her now. Of course, now that we are working towards getting to know our daughter a little better (better than we did a few days ago) it is obvious once again, that she is certainly still perfect. After all, she is a creation of God, she just happens to be a little different than most of the population (which is surely not a bad thing!).

What we are asking for at this time is prayers that Sydney have a mild form of CF so that she can live a near normal, long, happy life. We also need prayers for the progression of a cure for CF. From what we understand this is something that is very likely to happen in Sydney’s lifetime and the sooner the better. Lastly, we ask that you would pray for Derek and I along with the rest of our family who are also feeling a bit devastated by this news. If you could just send up a little prayer for all/any of these matters (and anything else you would like to add) whenever you think of us, that would be wonderful. We believe strongly in the power of prayer and know that God will answer them and that we will be taken care of. Also, please feel free to forward this message on to anyone who you feel would volunteer prayer for us.

For some peace of mind, please know that other than doing the forms of therapy, there is a good chance that Sydney will live a normal life as far as physical/mental activities. She looks and acts like a healthy, happy, active toddler and as far as she knows, this is what she is. If you would like to read more about CF, the best website out there is Cystic Fibrosis Foundation: www.CFF.org. The CFF is working towards creating a cure for CF and from what we understand this could possibly happen over the next 10 years. Thank you for reading this and even more thanks for your prayers and positive thoughts. We feel so blessed to have the support of so many people.

Love and Blessings,Derek, Kelli and Sydney Myers

Diagnosis Story

2004-06-24T16:52:00.000-07:00

Sydney was born on June 15, 2003 and diagnosed with CF on June 23, 2004 just a week after her first birthday, here is the message we sent to friends and family at that time....

Dear Friends & Family,
Our lives were forever changed this week. To make a VERY LONG story short, we found out on Wednesday (June 23) that our daughter, Sydney has Cystic Fibrosis (CF). This obviously came as a HUGE shock to us and although it is not a parent’s worst nightmare, it is pretty high up there on the nightmare list and has been somewhat traumatic for us to learn. At this time, we are still in the process of learning about CF ourselves, but what we can tell you is that it is not a fatal disease, although it can mean a shortened life span for Sydney. CF is a genetic disorder (not contagious) that Sydney has had since she was conceived. As we have found out, Derek and I are both recessive carriers for the CF gene and when 2 people that have the recessive gene have children, there is a 25% chance that each child will have CF. As for statistics, approximately 1 in 400 marriages unite 2 carriers of this recessive gene (many of which marriages will produce no children with CF since the chance is 25% per child) and 1 in 3,200 Caucasian babies are born with CF. CF is commonly associated with respiratory infections. However, it also affects other organs in the body – mainly digestive organs. For the time being, Sydney is being treated with vitamin and enzyme therapy that provide extra nutrients and will help her body properly break down nutrients so they can be absorbed and put to use in her body. She has continually gone down in size on the growth charts (weighed 18 pounds at one-year which puts her in the 5th percentile for weight) and we now know that her small size is mainly due to her body not being able to digest and absorb the nutrients properly. We will be meeting with several specialists over the next few weeks/months to determine what other course of action to take to prevent/treat possible respiratory problems she may have now or in her future. It is likely that along with the vitamin and enzymes, Sydney will also need daily breathing treatments and other forms of therapy for the rest of her life. As you can only imagine, this has been an awful lot for Derek and I to take in and we are working towards accepting this. We could have never imagined that in taking her to see her pediatrician on the 23rd that we would be leaving the Children’s Hospital the next day with our daughter having Cystic Fibrosis. Sydney is doing wonderful and doesn’t seem to have a clue that she may not be quite as healthy as we thought. For those who do not know Sydney as well, if I had to use one word to describe her, I would choose sweet. Of course, she is also beautiful, intelligent, funny, and I could go on forever but I would choose sweet because she is just such a loving little girl. She loves her family, friends, doggie, toys, and blankies by giving them frequent hugs and making an "ahhhh" sound. Just recently, she attended the first birthday party for a friend of hers and there were 3 other babies about the same age as Sydney. She had a great time hugging them and when she couldn’t hug them, she just put her arm around them while they were playing! Of course, if someone had asked us a few days ago to describe Sydney, "Perfect" would definitely be one of the words that we would use to sum her up. With the initial shock of finding out that she has CF, we naturally second guessed whether that word could be used for her now. Of course, now that we are working towards getting to know our daughter a little better (better than we did a few days ago) it is obvious once again, that she is certainly still perfect. After all, she is a creation of God, she just happens to be a little different than most of the population (which is surely not a bad thing!).What we are asking for at this time is prayers that Sydney have a mild form of CF so that she can live a near normal, long, happy life. We also need prayers for the progression of a cure for CF. From what we understand this is something that is very likely to happen in Sydney’s lifetime and the sooner the better. Lastly, we ask that you would pray for Derek and I along with the rest of our family who are also feeling a bit devastated by this news. If you could just send up a little prayer for all/any of these matters (and anything else you would like to add) whenever you think of us, that would be wonderful. We believe strongly in the power of prayer and know that God will answer them and that we will be taken care of. Also, please feel free to forward this message on to anyone who you feel would volunteer prayer for us.For some peace of mind, please know that other than doing the forms of therapy, there is a good chance that Sydney will live a normal life as far as physical/mental activities. She looks and acts like a healthy, happy, active toddler and as far as she knows, this is what she is. If you would like to read more about CF, the best website out there is Cystic Fibrosis Foundation: www.CFF.org. The CFF is working towards creating a cure for CF and from what we understand this could possibly happen over the next 10 years. Thank you for reading this and even more thanks for your prayers and positive thoughts. We feel so blessed to have the support of so many people.