Check-up info!

Thank you to everyone that kept Lexi in your prayers.  Her check-up today was really good.  Her pulmonary function test was 102!  Yay!!:)

They did see a lot of nasal congestion and think it may be partly from allergies b/c of the dark circles under her eyes as well.  We are going to try some Zyrtec to take sparingly b/c it can really help with allergies but if taken more than a week at a time can dry up secretions and make them impossible to cough up.

Also, Lexi's prothrombin time labs have been elevated for a couple of years now.   This level tells how long it takes her blood to clot and this test is often used to tell if someone's vitamin k is where it needs to be.  She has taken vitamin k off and on but every time this level it checked it has remained abnormal.  The nutritionist seemed pretty concerned about this especially because Lexi has started bruising more easily.  So, we are going to restart a higher dose of vitamin k and recheck labs in 3 months.  I pray they are normal.  The nutritionist seems to think there is something else wrong causing this level to be abnormal...but I pray she is wrong.

Praising the Lord tonight and we are so thankful for Lexi's health!

Let us Pray...

Lexi goes to UNC on Tues for a check-up.  We have just completed four weeks of Septra and Refampin.  Her cough is so much better.  She still has a little mucus in her lungs, but I am hoping it is the change in weather.  Help me pray for clear lungs and clear upper respiratory cultures.

We gotta sick little girl...

Please say a prayer for Lexi.  She has had a cough that has been worsening for 2.5 weeks.  She has had some sinus congestion, but no other symptoms.  Usually this means a CF exaserbation...oh no!  I called UNC this week and they have seen a lot of sick kids this week.  They decided to go ahead and put her on four weeks of Rifampin and Septra. 

I get a call today and Reed has had to pick Lexi up from school.  She is so sick with a stomach virus.  She has thrown up all day.  This is not what we need.  We do not need this to weaken her little body.  We need all of her cells fighting for her lungs.
Please say a prayer for her healing.

If your not vaccinated...a hand shake is all you get:)

Good morning my dear friends and family.  I am in need of your help.:)  We need to get vaccinated!!!

As you all have probably heard, the whooping cough is back in full force.  There were numerous cases diagnosed last year in Wayne and other surrounding counties.  These cases have been fairly healthy people with no other health issues.  Thank God, the CF community hasn't had a case yet. 

There has now been a death due to this disease and the Center for Disease Control and the Cystic Fibrosis Foundation is urging everyone to get vaccinated.  Most importantly those that work in the health or education field, the elderly and those that care for the elderly, anyone that would be around an infant or small children, and ABSOLUTELY EVERYONE that would be in contact with someone with Cystic Fibrosis!

I am begging you to please get vaccinated as soon as possible.  If Lexi or one of the new babies that the Coley family is expecting were to catch this, it very probably would be fatal!  And it would be dumb to not get a simple shot that would protect those we love.

I called the Wayne County Health Department today.  They are giving vaccines Mon-Thurs 7-11:30am and 1-5pm.  The cost is only $35 and they will file your insurance.

Thank you for your help.

The saying in the medical field is this..."If a person has not been vaccinated, they should not kiss or hug your child!"  We love baby sugar too much to not do this!  Lets do it, people:)

BIG, BIG NEWS!!!!

We have had lots of great news in our almost 9 years of dealing with CF.  God has worked in so many ways thru our Lexi Loo.  He healed her liver, preventing her from having to have a liver transplant.  At her one year birthday, not only had 75% of Lexi's small intestines grown back...but she was ALIVE!!!  The doctors said she wouldn't live to see her first birthday:)  Now we have another "Great News Moment"!  Lexis upper respiratory culture came back completely negative! 

NEGATIVE!!!!!!!

I could shout it from a mountain!!

She has never had a completely negative lung culture.  There was always at least a little mold, or a little Staph, or a little Pseudomonas.  Most of the time all three.

We have made some tremendous sacrifices over the past few years.  We have changed all of the products we used to unscented, we clean vigorously to prevent dust and bacteria from being in our home, and biggest/hardest of all... we ask our friends and family to do the same.

We really have focused on this more since Lexi's allergy testing in May.  We had to change more products that we thought were unscented but still contained some allergy causing chemicals.  We try very hard to avoid smoke outside and don't let people who have been smoking come in contact with Lexi.  We don't go to homes where there have been inside animals.  I even had my sitter this summer use shampoo, deodorant, soap, and lotion that I bought for her.  She even put my clothes on to prevent her washing detergent from bothering Lexi...and guess what she was HAPPY to do it:)  Thanks Kerri. 

And guess what....thanks to our hard work diligently doing Lexi's treatments and the great people in our lives...IT HAS PAID OFF!!!!

Praising the Lord tonight...with out Him, Lexi wouldn't be here!

And as of now...she is healthier than ever!

Cystic Fibrosis is the illness with an unusual name
Affecting kids lives is its ultimate aim
If you want to know just what it can do
Then let it come and live in you
People say “what I go through is unbelievably hard”
...

But theres plenty out there dealt a lot worser card
Im happy, optimistic, grateful and strong
And with my friends and family life will be prosperous and long
It’s an illness we should never forget or ignore
And with todays gene technology surely its time for that cure
This girl has a secret and you better believe
She'll fight all her life for whats everyones right…
To breathe

Yay, good results!

Lexi had a really good check-up today.  We are so happy.  She has had this little cough since June 30th that seemed to linger, but it is better now.  She hardly even coughed during her pulmonary function test.  Her results were 101%...which is great!  Her weight is good and her lungs sounded pretty clear.  Thanks for all of the prayers.  Now we wait for her upper respiratory cultures to come back.  Keep praying that is good as well. 

PRAISING THE LORD tonight!!!!!!!!!!!!!!!!

CF check up tomorrow!

Lexi goes to UNC tomorrow for her check up.  Please keep her in your prayers.  :)

The results are in.

Well the results are in...and the news is good:)  Lexi's upper respiratory cultures came back pretty good.  She has some Staph and mold growing...not good, but not new either.  She often has both of these in her lungs at any given time.  This is wonderful news that she isn't growing anything strange...but it still doesn't explain Lexi's persistent cough. 

The doctors have decided to treat with Refampin and Septra for 4 weeks to hopefully take care of this crazy cough.  Say a little prayer each day that it will. 

Cough, Cough, Cough...

Please keep Lexi in your prayers.  She has struggled with a minor cough since Febuary.  We have tried to wait it out, hoped her inhaled Cayston would help, and finally completed a three week course of Septra.  None of these things worked, infact her cough seems to have worsened some:(

We go to UNC tomorrow for an unscheduled check up.  Please pray that all goes well.  CF can be so confusing.  I am never sure if her cough is common and to be expected...or something more. 

Thank you:)

A post from another CF parent...

This is a repost from another cf parent.
Some thoughts from us parents of CFers ... this is exactly what it’s like.... There are so many people that have no clue how lonely CF can be and how hard it is to be a parent and yet be so powerless! It is like you are standing by a lake and watching your child struggle to stay above water and you have no idea how to swim!
We live every day hoping for a ...cure. We live in fear that our children won’t live long enough to experience it. We watch our kids take pill after pill and medication after medication every day. We do physiotherapy treatments which include nebulizer treatments several times a day. We give our children 15 different medications each day and that’s when they are well. When they are sick they are in the hospital for at least 2 weeks on IV antibiotics. We watch our children scream as they get held down poked and prodded by the staff there. We watch the tears run down their faces as they look at us as if we are the ones hurting them.
Our children develop bacteria that take over their lungs. It makes them work so much harder to breathe. It makes their lives shorter than they already are. Our children have an over abundance of mucus in their bodies, it overtakes their system. Some of our children cannot run around all day, they get out of breath easily. Even though our children are so sick, they always seem to smile even at the hardest times.
We listen to the comments from people that think our children “look” healthy, therefore they must be fine. But yet their lives are withering away right before our eyes.
We get dirty looks from people when our children cough so bad that they vomit. Our children are not contagious. We stay awake all hours of the night listening to our children cough so hard that they can’t even get a breath in between the spasms.
We stay in the hospital holding them, waiting for them to get better, hoping that they aren’t too weak to fight. We live in fear because we know one day our children will get sick and won’t get better. We pray it won’t be this time.
We watch families we know lose their children to this battle. We pray every day that we never have to go through that pain that we won’t have to hold our children until they take their last breath. We hold on to hope even when things seem impossible.
We sometimes feel useless. We fight everyday with our children, right by our sides in the hope that we will not lose this battle. We keep fighting for our children. We stay strong for them. We are the parents of a child with Cystic Fibrosis

Our Biggest Challenge is NOT resenting Cystic Fibrosis, BUT learning to live with it!