Thursday Factoid

CF patients have daily airway clearance therapy to help move the thick, sticky mucous out of their lungs. This can be done manually, either by cupping the hands or with the aid of a percussor cup, or a machine such as The Vest can be used.

 Sarah recieves airway clearance twice a day for 30mins as normal care. When she gets sick we do it 3-4 times a day. Right now we use percussor cups and when she is big enough she will receive a vest to do it for her.

Another Factoid

CF doesn't only affect the respiratory system.  It also affects the digestive system - the abnormally thick mucus a CF patient's body produces clogs the pancreas and disrupts the flow of natural enzymes which help break down and absorb food.  Artificial enzymes help replace those that the body fails to make.

This is Sarah's biggest problem. She takes enzymes before she eats anything or drinks her bottles. Because her body doesn't know to absorb food with out the enzymes she has trouble putting on weight. She is quite a bit smaller than her sisters were at this age. She is now 10months old and at her last weigh in at 9.5 mths old she wasn't yet 16lbs. 

CF Factiod

CF patients have daily airway clearance therapy to help move the thick, sticky mucous out of their lungs.  This can be done manually, either by cupping the hands or with the aid of a percussor cup, or a machine such as The Vest can be used.

More than 45% of the CF patient population is age 18 or older.

New fact

The gene responsible for cystic fibrosis was only discovered in 1989

May is Cystic Fibrosis Awareness Month

In honor of May being Cystic Fibrosis awareness month I am going to do my best to post a fact a day. I k ow I have already missed a bunch ,but I will start now. About 30,000 people in the US and about 70,000 people worldwide have cystic fibrosis.

Happy 4th Birthday Brooke

4 years ago today my life forever changed...

I became a Mom for the first time to a beautiful baby girl. You weighed 8lbs 10oz and 20in long. I will never forget the way I felt when I held you for the very first time. It was a moment I had waited for such a long time. You were just breathtaking...Before I knew it you had learned to roll, sleep through the night, sit, crawl and walk. I cherished every moment. I was so proud of you. Time just seemed to fly by and you were turning ONE...

Daddy made a joke at your first birthday party that you were going to be a big sister, little did we know how true that was. The morning of your Best friend Katie's birthday, party mommy found out that I was going to have another baby. You learned so much you second year of life. You learned to talk and now it is hard to get you to stop, but I love every word. December 2009 when you were 20 months old you became a big sister.

It didn't take you long before you learned to say "Emma." I new right away that you were going to be a great big sister. As we watched you turn two I felt so lucky that God had bless us with two beautiful little girls.

Two's were a fun year and we learned what a leader you are. I also learned that you can have quite the little temper. :) We have our good days and our bad day, but life goes on, but when you give me a hug and say "I Love You Mommy" I forget all the trivial things in life and remember how lucky I am to be YOUR mom! Two's didn't last forever and you were soon Three.

Of course Three was a big year as well, You became a big sister once again. You started taking Dance classes and enjoy every moment of it. You have really started to understand who Jesus is and how he lives in your heart. You are a ball of fire and I love your spirit. You think of yourself as a big girl now and so do I. When I look at pictures sometimes it is hard for me to believe that you are growing up so fast. Now here you are turning 4 and I still think you are the sweetest, loving, most beautiful, "big" girl I know. God created you with his hands and we sit in amazement as we watch you grow into the world around you. People tell me all the time how precious and beautiful you are and I can't wait to watch you grow into an amazing young woman. Words can not express how your presence has changed this world and our lives forever. You never cease to amaze us with your courage and strength. You are the sweetest gift God has ever given and our love for you is immeasurable.

Happy 4th Birthday Brooke!!!

Great Strides Walk

You might need to scroll to the bottom of the page and turn off the music player before you watch this video.

Our family will be walking in the CF Great Strides walk in October to raise awareness and money to find a cure for Cystic Fibrosis. Here is the Video I made for Sarah. Our team name will be "Saving Sarah" enjoy.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Genetic Testing is back

I am very happy to say that Brooke and Emma's genetic testing came back and they do not have Cystic Fibrosis like Sarah. They each are carriers and have one of the mutations that Sarah has. So Brooke has one strand, Emma has another strand and Sarah has both.
When you go through something like this there is no way you are not going to worry. So I am pleased to say that they are in the clear.

BlueBonnets 2012

Latest CF update

I took Sarah to the CF Clinic on Thursday and over all it was a wonderful appointment. They were very happy with how she is doing over all. The only concern they had at this moment was that she had dropped on the growth curve a bit. Not a anything that raises alarms, but something to keep an eye on. So Yeah for good news.

A whole new life

February has changed everything for us as a family. We had been waiting on some testing to come back on Sarah. At this point we still had no idea what was going on with our baby girl. I recieved a phone call from her PCP that some testing had come back and we needed to call a # that was given to me and make an appointment with the pulmonologist. What? I call and spoke with a nurse and I asked her if she was able to tell me what the test results were because at this point I still did not know. That was when my life changed forever. She said, "Sarah has tested positive for Cystic Fibrosis." I think that my heart stopped for a minute.

• So I am sure some of you are asking what is Cystic Fibrosis or know as CF?

Cystic fibrosis (CF) is a genetic disorder that particularly affects the lungs and digestive system and makes kids who have it more vulnerable to repeated lung infections. The current life expectancy for someone with CF is 37. They are making great strides everyday to improve this #.

• What does this mean for Sarah?

Well we are not really sure what the future holds for Sarah. Right now she has pretty much only had digestive issues. She is on a high calorie formula to help her gain weight, multi vitamins since people with CF have a hard time absorbing, pancreatic enzymes, and acid reflux meds to go with the enzymes. Last month she was also started on a Nebulizer twice a day plus Chest Physiothearpy (CPT) twice a day.

We are taking it day by and and we know that we are being held in God's loving arms. He will guide us through each step of this journey. Tomorrow Sarah has her third visit to the CF Clinic.

• What about Brooke and Emma?

Each parent has to be a carrier of CF in order to pass it on to a child. So that means with each kid there is a 25% chance they are going to have CF, 50% that they are a carrier and have no symptoms of CF, 25% chance that they don't get the genes at all. We had Brooke and Emma tested 6weeks ago today. It takes 6-8weeks to get the results back. It took 7weeks for Sarah's test results to come in. So I am expecting to hear back next week.

Feb Catch up

Here is some photos from Feb.

Random Pictures to catch up
This was new years eve. Some friends of ours moved here from the Kingwood area a bit before us and this is there youngest son Samuel and he is a week younger than Sarah.Here is Samuel on the left (a week younger than Sarah) and another little friend who is 12weeks in this picture. Sarah was 5.5mths.

Sarah in the hospital. I asked for this hat since she had to have her IV started in her head.

Sarah at church on 1-1-12

Sarah and a friend Hartley from Church. Hartley is 7days younger than Sarah.

Brooke walking Emma to Sunday School

Jason turned 30 on Jan 23rd, so I asked some youth to help me fill his office full of balloons. This is what he found when he got to church Sunday morning. :)

Another picture of Sarah in the hospital during her stay in Jan. If you look close you can see the IV on the left side of her head.

Brooke ready for her first dance class of 2012

Precious feet

Watching the Bearkats in the championship game!

Sweet Sisters

Long overdue update

So our computer has been on the fritz. So I haven't been able to update. But Sarah is still trucking along. She had another hospital stay in Jan for failure to thrive. For some unknown reason she is not getting the nourishment that she needs. Her body just doesn't want to absorb. Although She weighed in today at 13lbs 7oz. This is after she is now on 24cal neocate formula and adding coconut oil. We tried rice cereal and that was a no go. She screamed the entire time she ate and then would be like that for 30-45mins afterwards. Today we tried some apple sauce and had some better luck. We are still not sure what is causing all of the screams and the failure to thrive. I just pray that we figure it out for her sake. She also had an evaluation with ECI today. She is not meeting all of her milestones. She is unable to roll and sit. She also doesn't reach for toys like she should. It was noted today that she also doesn't put weight on her hands. She just started to put weight on her legs. She used to do this before she started having all these problems but then stopped and is jsut now doing that again. She will have a physical theapist come out to the house once a week to work with her. I wish it was more, but for now that will have to do. I also wish that she would sleep through the night, or heck even just a bit more than she does now.

Brooke is doing well and loves dance. I can't believe that is is going to be 4 in April. I will be getting her signed up for Pre-k in March hoping that she will get in.

Emma turned 2 on New years Eve. She is a ball of fire and is "2" in every form. She is a climber and keeps us on our toes. She is in live with Minnie Mouse and tries so hard to keep up with Brooke. She is talking more and more. Although right now it is hard to really understand some of what she says it is super cute to hear her call out for Brooke. They are best friends right now and I hope it always stays that way.

Jason turned 30 on Jan 23rd and I got several youth together and filled his office full of Balloons. It was awesome. His parents bought him a 42in flat screen tv which is great.

Me, Well I am just doing my best to keep things together. Taking care of a husband, 3 kids and a dog is a full time job, but I wouldn't change it for the world. I love my life.