"Everyone needs a place to call their own"

Thursday, July 29, 2010

I'm on a mission...

So since I decided I was going to start homeschooling Ayla, I have been going non-stop!  I have been craigslist-ing, ebay-ing and shopping around for everything I "need." Or should I say.....want!

Why do I have to do this??  Every time I get a new idea in my head I have to go way overboard in making everything perfect and orderly.

Why can't I just do this at my kitchen table like most people start out?? Oh-no!! That would be entirely too easy!!

So right now in our house we have 2 spare bedrooms, so I tell myself: "why not make her a school room?"

So I want to get a desk, chair, rug, easel, books, teachers guide, peg boards, storage bins...ya know..the "necessities" ;0)   Because it can't just be functional...it has to be adorable!!

Okay so I am totally making fun of myself, but it's true.  My husband is about to do an "intervention" for my spending addiction.

I want to be organized and want her to be excited when she sees the final product.  Since I am new to this whole thing...having everything I need makes me feel more confident.

I still have some items to buy and I may be picking up an Uber-Cute little childs desk tomorrow..

It's ONLY $15.00 -that's good right?? The price totally justifies it!!  Who could pass that up?

Certainly not me!!!


Monday, July 26, 2010

High Hopes~

So as of July 23rd we officially started "trying" to get pregnant again.  Because of insurance purposes we had to wait until then.  We are hoping that I will get pregnant soon and that we will have a successful pregnancy!
Please join with us in prayer for a healthy baby when the time is right!


Thursday, July 22, 2010

Homeschool.....Why it's right for us!

This week I have been doing a lot of research on home school curriculum's, styles of learning and much more.  I have been thinking about it a lot, since kids in our area are getting ready to head back to school for another year of learning.

I want Ayla to start learning along with everyone else.  She has developed into quite the little sponge in her young life.  Sucking up everything she hears and sees.  I really believe she will have a love for learning.

And I want to find a curriculum that nurtures that.  I have read that the early years of teaching for a child is crucial to developing the type learner they will be.  If it's all facts and no fun, then there is a big chance learning won't be enjoyable to the child.

I want Ayla to love to learn, I want her to be different than her mama.  When I was in school it was a lot of time lines to memorize and centered more around the date an event was happening-than what really took place.  Not that dates and facts aren't important.  But I really think I would have retained a lot more of what I learned in school if I had felt connected to the story in some way...instead of remembering the date it happened and that's all for my upcoming quiz.  Let's face it most of what school focus' on these days are standardized testing!  And I don't want Ayla's entire schooling to be preparation for one big test and no real lessons she will remember and learn from.

And that's why I'm pretty sure Home school is right for us.  It's not right for everyone, and I have to say the School's in our area are highly awarded and some of the best in the state.

I was wondering the other day if Ayla didn't have CF would I even have considered this.  And I'm not really sure what the answer is to that question.  But I know that home school offers the ability for her to stay on her routine with treatments and medicines & for me to be able to monitor her meals.  And let's face it....she will avoid a lot of bugs and germs being in her environment.

Now don't go thinking I'm one of those mom's who shelters her child from other kid's in fear of the sniffles.  We do play dates with other kids and she has many cousins who she sees often.  And socialization is very important for Ayla.  She has always been one of those kids who doesn't have an attachment to much...just keep her around people and she's content.  And home school will not hinder her from that.  There are many mom's groups who get the kids together to do fun lessons or field trips and we will be participating.  Ayla really has a love for people and I love that about her.

How long will I home school her?  Until it's not right for her anymore.  If Ayla gets bigger and wants to be part of the school soccer team or go to the Prom...who am I to stop her?  But for now I think she will really love it.

I am looking into a few different curriculum's...both bible based & very different but the two I am most interested in is Before Five In A Row (BFIAR) and Classical Conditioning.  Each offer very different approaches but there are things I like about each of them.  For example Classical Conditioning offers once a week Co-Op where actual teachers work with students, they get to be with other kids-do arts and crafts and it's a great resource for mom's too.  BFIAR offers teaching through books that you might read your child anyway.  They take children's books (or more mature books whatever the age group) and pull lessons from each area of study out.  The lessons are laid out for you and it's FUN!  There are no textbooks, just words from authors who love their subject instead of a committee of people who put out a book that includes a list of facts they think my child needs to know.  BFIAR covers those same facts and happenings but in a way that Ayla will take away memories & emotion-and carry them with her through life.

I am getting really excited about this, as a stay at home mom- we are all looking for a "purpose" or something besides cooking and cleaning that gives us worth.  And I feel like this is just that for me.

It's funny because years ago I would have never saw myself doing this, a teacher was something I never wanted to be.  But that's what having kids will do for you.  Completely change you in ways you never thought possible.

So thanks Ayla for giving mommy a purpose and I look forward to learning with you!


Wednesday, July 21, 2010

CF Mom's Group & New Science from the CFF

One of the most encouraging things about last night's meeting was seeing the Foundation's Pipeline of new Drugs to treat CF and how it's evolved in the last 7 years!!

Below is the Pipeline from 2003 (No drugs in phase 3 trials)

Below is the Pipeline for 2010!! To many drugs in phase 3 to count in phase 3!
Just look at how far we've come!! This progress is your money from Great Strides and other fundraisers hard at work!!

Last night's meeting was the largest group that has ever gathered for a mom's group (10 mom's and grandmas) and my first ever.   I have to admit I was very enticed by the members of the foundation coming to the meeting.  But once I got there and got to meet some local faces of CF mom's I was very glad I came.  I have been reluctant in the past to attend these meetings something about bonding with women over our sick kids turned me off.  But I was wrong!  I learned so much last night from mom's who had been where I was, and about medicines Ayla was taking.  These meetings are well of knowledge that I had been missing out on!!  And the ladies were all women I could see myself be-friending.  So needless to say I changed my tune!!

Claudia Werner gave the Science update after dinner and it was encouraging!! The first thing she spoke about was the pipelines above.  

She told us that:        
  • 20% of Drugs that make it to Phase 1 -get to patients
  • 50% of Drugs that make it to Phase 2-get to patients
  • AND 80% of Drugs that make it to Phase 3-get to patients 
That's great news for us waiting for the VX-770 & Corrector 809.  I asked a question I had been wondering since hearing about this "control":
Would CF patients still have to take enzymes and do other treatments once this comes out?
And the answer was to my understanding that this drug if approved would STOP CF in it's tracks.  If you have a young child who doesn't have lots of lung damage, their lung and pancreatic function could greatly be affected.  So there is a possibility that Ayla will not have to take enzymes once these drugs are approved!!  It won't fix what's broken....and won't take CF away but our kids won't die of CF they will die with CF.  
She then went on to tell us that Dr. Beall from the CF foundation said that this drug will affect all organs positively.  
This should give all of us such fuel for Great Strides 2011, I know I will work to make next year be the year that we fund the "control drugs" for CF.  Trials of the combination of VX770 & 809 should begin within a year!!

It really was a great night, we talked about homeschooling, stages of life for CF kids, Doctors, fundraising efforts and lots of other things.  I know I will be attending other meetings and am excited about that.  

We are so close to making CF=Cure Found-  It's very exciting and on the top of my prayer list! 

I wanted to share everything I heard, I'm sure I forgot some of it-so much information to process.  But it really is great to know that the foundation is working diligently toward this goal.  And if you look above you can see progress is being made.  

It's definitely something to be excited about if you live with CF.  Our kids, friends, brothers, sisters, aunts, uncles, moms, dads and all people with CF could be given a new lease on life!  

I desperately want to be able to tell Ayla when she's old enough to understand the miracle of the cure that was created especially for her.  


Friday, July 16, 2010

Flash Me Friday: My Favorite Piece of Artwork

Flash me fridays gives readers a chance to peek into the lives of others, see where they live, what they like...this week's flash is....Your favorite piece of artwork!

This is my fake "Starry Night" by Van Gogh

I love it, I got it from an art shop for 80$, no real special meaning to it- just liked the colors and the price.

Fills up a large space quite nicely!~

Thursday, July 15, 2010

BIG News from the Horse's Mouth!!

I spoke with my contact at the Cystic Fibrosis Foundation about a lot of things today, but the main topic was the corrector drug that is in phase 2 of clinical trials right now (CLICK HERE FOR MORE INFO ABOUT DRUGS).

These drugs will improve lung function for people with CF and give CF'ers a "normal" life-span!! This will not be a "cure" but will liken CF to what Asthma looks like.

She said that Dr. Beall from the CF foundation stood up in front of CF volunteers (many of them parents) and stated that he believes the corrector drug will be going the FDA for approval by 2012!!  She said that they are seeing so much great data back from the clinicals: average person experiencing 9-12% increased lung function!! And one 28 year old she met had 20% improvement!!

Tears flow to think about never having to hear the words "Life Span" again!  CF parents.....can you just imagine???!!!

My contact and her boss from National are coming to our area for a CF mom's group in Pensacola next week.  She personally invited me to come to hear in more depth what this news means for us!  This will be my first CF mom's group meeting and I'm excited about it.

I will be sure to pass it along!  What a great day!!

2012 People!!! Thats a year and a half!!
Please join me in prayer for the Dr's and researchers working on this, this would be a true miracle for our family and for so many others!!

Tuesday, July 13, 2010

Look Who's Crafty!

A good friend of mine showed me how to make these tie-blankets, and I'm so excited to have finished my first one!
Pretty Cute-huh? 
It's really big, adult size perfect for snuggling!!

Monday, July 12, 2010


Well......I thought I had it all figured out in my last post...I just knew Ayla's fever had to be related to her ears....Well I was wrong!
I took her to the Dr. this morning and his first concern was MONO after seeing a badly infected throat and knowing her symptoms.  That would not be good considering MONO affects the liver and spleen.  And Ayla doesn't need anything else affecting those organs!
So he ordered blood-work and it came back negative for MONO (whew!), but her white blood cells were elevated. So the poor thing has Tonsillitis....she's got some new meds and hopefully they will work and she will be all back to normal very soon.
The past few days we have been cooped up inside and she's been doing a lot of resting...Stinks because we have some friends in town and we can't hang out :0( But so glad this fever was not a mystery and the root of the problem was found.
So tired of my baby being sick!

Sunday, July 11, 2010

ENT and Ear-Infections.....

It looks like we will be visiting a Ear, Nose & Throat Dr. in the near future with Ayla.  She has had multiple ear infections over the last 6 months, like at least 4-5.
Last month at clinic the Dr's put her on a new Rx to try and get rid of this fluid in her ears and her cold and it worked great but as soon as she was done with it...we slowly began to see symptoms return.
This weekend started with a tummy ache Friday that led to a full blown fever Saturday and i can hear the crackle of congestion in her nose again :(  Each morning she has awaken with a fever of about 100.3 and complaining of tummy pains.  She has tried to throw up but nothing is really coming out.  She is not eating like normal but some throughout the day.
So last night I called in to Pulmonologist on call and they advised me to start her back on zithromax (she had another 5 day cycle) and get to the pediatrician Monday.  And get a referral to a pediatric ENT as soon as we can.  We don't want Ayla to be on antibiotics for extended periods of time and this is obviously just a "band-aid" to the real problem.
Over the last few months she has even began to have issues hearing as well...she always says: "whuyasay" aka: What did you say?  It's so cute...but she has been saying it so much now that phrase has turned into a slur for her now...
So hopefully tomorrow we will get some answers..her pediatrician is very leery of tubes...he thinks to many Dr's give tubes without cause...but I think we can see we have a real problem here...
So I will update after our appointment Monday, as for today we are just hanging out..I can see an improvement already today from the zithromax....but once the Motrin wears off....she's DONE!

Thursday, July 1, 2010

Clinic Update

Ayla had Clinic appointments with both GI (Liver) & CF Dr's yesterday.  Our morning appointment was with GI she got weighed, and her blood pressure and O2 stats checked...those were all good!

Ayla's GI Dr came in shortly after and was so pleased with her appearance, out of his mouth: "She looks the best I've ever seen her!" -this made mommy super happy!

He asked about her BM's, belly pain and distention (large tummy)....I was happy to report that she was have none of those except for BM's (haha)!!

When the Dr asked Ayla if he could check her tummy, she said "yes" and climbed on the table and laid back.  While he was pushing and feeling for her liver and spleen size and locations he said "She's so good!" She is such a pro at all this!!

He was so impressed with her that he didn't want to change anything!  He did order labs for liver enzymes and vitamin levels.  Her labs from previous months have been good...not normal but still very good and not "progressive" in his words!

He left the room with a smile on his face!

INTERMISSION................(we had 4 hours to kill in between appointments...so what was there to do???? Shopping of course!) -I got these cute Sandals...they've been on my wish list for a few months now!

Our afternoon appointment was with CF clinic....we didn't have to be weighed or anything like that b/c it was already in the system from that morning...

Our Dr. came in the room and was so pleased with her weight gain....Did I mention she gained 3 lbs in 4 months?? GO AYLA!!!

She asked about the Zenpep (enzymes) and I told her that they seemed to really help, since Ayla is now going to the bathroom 2-3 times a day and they are very formed and grease-less!!

She ordered a new RX for her cough/cold since it seems to be a persistent little bug and hasn't gone away with the first two.

She also mentioned Ayla may need to see an ENT about her ears, since she's had 3-4 ear infections in the last 6 months...so we will talk to pediatrician about that soon.

And then performed the throat swab...they know not to even get that out until right before with Ayla...b/c once she sees the tubes she's officially PO'D!!

But it was over in a matter of seconds and after some consoling she was ready to make the 4 hour drive home....

She was so very exhausted she slept the entire drive home....wow!!

It's so nice when Clinic goes smoothly~ Thank God for that and Ayla's health!!