Fun times...

So we decided to take advantage of the warm weather & have some much needed fun this weekend. We had a blast & I am so thankful that I was able to spend this time with my kiddos!!! These pics are backwards as we went to the beach on Saturday & the Zoo on Sunday...but both were of equal fun & even though I am burnt to a crisp we actually accomplished getting Isabel to enjoy herself in the water...so heres the pics!!! I still don't have a day for either the CT or the perfusion scan so I will post as soon as I know more about that. She seems to be doing a little better even though today she had this cough that sounded like the winds of a hurricane & she is producing more mucus I'm sure that antibiotic is kicking some tail in those precious little lungs of hers!!!

This is Isabel posing!!! She is so prissy & has such a little attitude! I am sure that in a few years I will look back & wonder why this made me smile but for now it's cute & I wouldn't have it any other way!

Once again....showing that Isatude as I call it...it's our word for her "spunk"

These here would be the 3 kids entering the zoo!! Maxton came ith us & had some laughs. He is oh so cute also. Since I don't have any boys I pretend he is my adopted son! His mommy has also adopted our kids & we vow that they will forever by raised together....haha!

at this point of time she is just testing the sand to see how she liks it....shes not really into dirt!

Holly will jump right in though....nothing will hold her back.

Here's Holly taking a much needed break. Her meds can cause a sever sensitivity to sun so we were extra careful to keep her lathered up to be protected from those uv rays....she still got a small burn on her back though.



This is my favorite picture...the beach in the background & her looking oh so innocent!

& the results are.....

We will wait for the antibiotics to work thier way through her immune system & kill some more buggies....sometimes within the next 2 weeks we will have a ct scan then after that is complete & we wait for the results we will anticipate that she will be breathing a little easier from being medicated we will proceed with a ventilation perfusion scan & then we will wait for the results of that. Then we will see the doctor again...the best part of all of this is the waiting. As you can see, I'm thrilled to be waiting. Right now life is a game of waiting. I can't explain the feeling of waiting to hear what will be the next step in your childs health care based on certain results of medical testing. It can be some of the most frustrating & trying times a parent will go through. It's like being lost somewhere that you can't ask for directions until you are at the end of the road then having to turn back around to travel the path again. But we will continue to pray & I have faith that this is something that will quickly disolve & we will have no worries after the meds kick in & this will be mothing more than a distant unpleasant memory.

Speaking of memories....today we went to the mall after clinic was done, great stress reliever. Let the kids play in the play area (yuck, I know germ city) & let them ride on some $0.75 rides & it's pure bliss to see that smile light up the room from the children!!!! Then the mommies went & got a hair cut....& highlighted since it's been an ever so stressful week we deserve it I think...here are some pictures of todays FUN!!!

This is the sign that we are doing something right!!!!

Our kids love each other

Isabel striking a pose....this was just too darn cute to pass up

Max in a state of shock.....you mean this moves....well yeah if you put money in it!!!!!

Then there's the mommies hair cut!!!!!

So, that's all for now folks----->be back for more later....maybe a happier post coming this weekend!

Again

Would it be too much to ask for more at home time like this.......

& for a little less of this

We will be in clinic today to do PFT's & see how well the antibiotics have worked so far....& this is why our lovely life is up & down right now. I have slept 3 hours in the past 3 days because I am still working, while taking care of sick children during the day & trying to allow my princess to enjoy some of the funner things in life just in case this leads to yet another agonizing hospital stay with IV tubes coming out of her precious little arms. I know shes worried also because she is constantly speaking about things she would like to pack to take to the hospital with us this time....it's sad when your 5 year old knows what she needs for a basic hospital stay.

I know it could be worse & theres people out there that have so many more problems & battle so much more but for once I just want a break.

Sick again

Well, Holly was seen yesturday & she has a lung infection. It's her left lung again, not to my surprise because this is a lung that likes to cause trouble. Against my better judgement I am still allowing her to go on the field trip to the zoo today. I will be there with Isabel so I feel comfortable that she's going to have a good time. We will be seen in clinic on Friday. They took some sputum samples to be tested for MRSA & pseudo.....let's pray that this isn't what it is....we have been free of that for a while & I don't want to go back down that road. They put her on Bactrim & Zithro....we will wait & see how it works. I will post some more when I know more of what's going one. Right now we just have to play it out.

The waiting game

Holly had another soccer game--she did well overall. She actually kicked the ball this time!!! I am so proud of her. Isabel has the stomach virus.....yuck! Holly is also sick...she has a fever. She will be seen tomorrow by her ped & the clinic on Friday....please pray that this is just the stomach virus. Im just thinking of the could bes & the maybes...can't help but to think about those. Now we just sit back & play the waiting game...waiting for the test to come back, waiting for the docs decision. CF is just something that becomes more visible in our lives every day. Today I had to tell Holly that she might miss her field trip to the zoo because I don't know what is going to happen at the doctors visit. She cried, she just wants to be a normal 5 year old & play with her friends...instead shes scared of getting an IV or having to be admitted...it's really heartbreaking but shes tough!!!! Here are some pics from her game!

Still praying

I just wanted to post a pic of the Lawrenson family so people can put a face to the people they are praying so hard for!!!! Last I heard from thier blog there was no updates...It had been 8 hours & it has now been almost 10---keep praying

New lungs=New life

Start praying...immediately!!!! Tricia is being prepped for surgury for her new lungs...let's hope they fit like a glove, that she recovers quickly & that Everything will go perfectly. Please also pray for thier family as they have several people driving from out of town to be with Nate & Gwyn as Tricia goes through surgery. This will mean a whole new life for Tricia & mean that Nate will leave that hospital with both of his girls!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Holly has a little cough but she is doing well other than that. I am calling the clinic in regards to her shortness of breath. I am sure that it's nothing. Her last MRSA culture was negative & PA was negative also but you never know. We can't be too careful & after the coughing up blood episode a couple of weeks ago we need to be careful.

You can check on Tricia & thier family at www.cfhusband.blogspot.com

Breathe?

Holly had her second soccer game of the season. She is just loving it! This was bit of a doozy for her though. She spent most of the game on the side lines catching her breath which wasn't at all pleasant for her or to watch for that matter. She still kicked on though...she even managed to kick the ball in the correct direction this time, I am so proud of her for that.

Summer is coming...in South East GA I believe that summer is pretty much year round but we hit 89 today, yes I know--it's scorching & some people up north are still wearing thier coats!

In other news my brother will be going to take some college classes...he passed his GED & I am so very proud of him words can't even express how I feel about what he is doing with himself! This may not sound like much to many but for the few who know...my brother is kind of the rebel in the family & has no freedom right now.......maybe he's actually learning!

I still have yet to make the appointment for Holly to get into the cardiologist & the CF clinic will probably be calling to beg for some spit samples soon...the joy of CF!!! We are going to start our fundraising for our Great strides walk soon. Our team has already registered....Holly's Hope!!!! If you want to donate go to www.cff.org/greatstrides. All Cfer's deserve more tomorrows & thats what Great Strides is all about.

If you were wondering about Tricia's new lungs....they weren't the right fit for her so please keep them in your prayers that she will be able to be transplanted soon. Also, please pray for Holly to breath a little easier & to gain a few pounds. She's literally losing like shes on a crash diet!