My Thankful Thoughts

Yes, yes, yes... Christmas is right around the corner, but while it is still November, I wanted to get you caught up on what is going on with Leah as I reflect on some of the many things I am thankful for.

Kindergarten

Leah is in full day Kindergarten and LOVING it!!!  She looks forward to going to school and seeing her teacher and her friends.  Even if she has to "work" while she is there (that is what she calls it), she goes eagerly and is learning so much!

Mrs. Buell

I think she might just be the BEST kindergarten teacher ever!!  I am confident that there are four wonderful Kindergarten teachers at Heritage Trail, but I was really hoping that Leah was going to be put in Mrs. Buell's classroom.  When we were talking with the principal before school, we asked for two things in Leah's teacher: 

• A teacher who is willing to make a strong effort to help create a safe environment for Leah. 
  
• A teacher who is good at communicating and willing to communicate regularly.  
  

Mrs. Buell goes over and beyond to create a safe environment for Leah at school.  This includes regular hand-washing, not just for Leah, but the whole class.  Following the three foot rule by moving a sick child away from Leah.  Allowing Leah to have her own set of supplies.  Let's just say that antibacterial soap and disinfecting wipes are a prevalent and regular part of the daily routine.  She also created a simple communication log that she fills out every day that focuses on two things - whether Leah is coughing during the day and how much Leah ate while at school.  These are a few examples of the many ways that she has helped make school a safe place for Leah, especially focusing on infection control.  We are so thankful for her.  On top of that, Mrs. Buell makes learning so fun!  She is one of our favorite teachers we have had the privilege of working with.

Other Staff at Heritage Trail 

Especially Mrs. Smith & Mrs. Anderson
Mrs. Smith is the teacher's aide in Leah's classroom.  Just like Mrs. Buell, she goes over and beyond to watch out for Leah and make school a safe place for her.  For example, every morning she wipes down Leah's special spot that she goes for her medicine.  They set up a chair out in the hallway so Leah does not need to go into the nurse's office to get her medicine and be exposed to any of the sick children in there.  I volunteer in the classroom and have seen Mrs. Smith in action.  She is so good with the kids.  Put Mrs. Smith together with Mrs. Buell and you have an outstanding team!! Their love and care for the students is evident.  We are so very thankful for both of them.

Mrs. Anderson is the school nurse.  We are thankful that she is there watching out for Leah and taking care of her.  Every day, Leah visits her to take her enzymes before snack and lunch.  She has been very good at communicating with us if they have any concerns about Leah during the school day.  We feel confident that the staff at Heritage Trail is doing their part to protect Leah's health to the best of their abilities.

Our CF Care Center Team

We are so thankful for our CF Care Center Team at Advocate Children's Hospital in Oak Lawn, IL.  They are fantastic!!  Dr. Akhter is so good with kids.  Leah enjoys seeing him and wants to make him proud.  She couldn't wait to show off her very first PFT results at our last visit.  Our nurse Jeanne is always willing to answer my many questions until I have a good grasp on what is going on.  We love how these two and the rest of the team work together to offer the best care possible.  We appreciate how they take time to listen and care for us as a family to help us manage Leah's health most effectively.

Rocket ships

Leah started doing Pulmonary Function Tests (PFT) at her last CF clinic visit.  This test is done to track how her lungs are functioning.  As she blows into the tube, she "blows" a rocket ship into space on the computer making this test fun and enjoyable.  And yes, she does have a competitive spirit that seems to run in our family, so she did the test the maximum times allowed.

Regular CF Clinic visits and culture tests

Every three months, Leah goes in for regular clinic visits to provide her with the best care possible for her CF.  At these visits, she has a culture taken to check for any bad bacteria growing in her respiratory track.  We were pretty shocked and surprised when we heard the results of her latest culture.  She tested positive for two bacteria infections, Staphyloccus aureus (Staph) and Pseudomonas aeruginosa (PA).  We were really hoping she would be older before she began fighting these infections.  Looking at her, you would never know that her little body is fighting these dangerous infections.  Thankfully, it has not slowed her down at all.  We are thankful that our CF center knows that to provide the best care, they perform these culture tests regularly in order to catch any infections early, regardless of whether any symptoms are evident.

TOBI and other antibiotics

We are thankful for the medicines that are available today to treat these infections.  Leah is currently finishing up TOBI, a 28 day inhaled medication to treat the Pseudo infection.  Right now, the infections are in Leah's airways and have not settled into her lungs, so we are hopeful that the antibiotics will be able to rid her body of these infections.  After she finishes the TOBI, we will have another culture taken to determine what our next course of action should be.  Please pray with us that the culture will come back negative for both of these bacteria.

Compliant and feisty spirit

Leah is such a trooper and a fighter.  She is really good about doing her treatments, even when we have to increase or add different treatments into her routine.  We are so thankful that Leah is willing to endure all of this with a mostly pleasant, happy spirit. 

Grace Bible Church

We are thankful to be part of a church that stands by us and cares for us as we fight this disease.  They help keep us grounded in our faith as we trust God with Leah.  We appreciate the dear people who are part of our lives, who love our little Leah, who ask questions, and pray for us.    

Our family

We are so thankful to have an amazing family that support us without wavering.  They walk with us on this journey as we hope and pray for a cure for Leah.  We just returned from a great trip out to South Carolina to visit with Phil's family for Thanksgiving.  Yes, we decided to share the goofy family photo.  We did get some really nice ones, but this one has so much character, we had to share.  Fun times!  Our girls LOVE playing with their cousins, whether it is here in the Chicagoland area or they have to drive across the country.  It is always worth it!!   

Leah's Front Line Facebook page

We are thankful for the many people who support Leah and pray for Leah.  We appreciate the outpouring of support, even from people that we have never met!

Leah's Front Line team

Words can not say enough of how thankful we are for the many, many people who walk with us, volunteer, raise funds, and donate money to support our efforts to find a cure for Cystic Fibrosis.  We are so humbled by the way people have rallied around to help us add more tomorrows every day for our Leah!  We appreciate each and every one of you!!