Clinic today...

Trying to blow pfts for the first time!


Making a "funny" face before pfts!

What a looonnnggg day. Zoe had to be at CF clinic at 10:30, then ENT at 2:30. CF clinic visit: weight did NOT increase at all. Not one ounce. She is exactly the same as she was last July. We feed her the highest calorie/fat diet possible. With the exception of the supplemental drinks that would be awesome IF she would drink ANY of them. But of course, she doesn't like any of them. Her nutritionist said today, "Well, you are already pulling all my tricks....let's brainstorm...". So her and Zoe's doc talked and came up with a couple of things to 'try'.

We are switching her Zantac to Prevacid. Sometimes one works better/different than the other as far as working with the enzymes to utilize the fats/calories better. We are also adding 500 mg. DHA. They are scheduling her a follow-up in 6 weeks with CF clinic and G.I..

She also did pft's for the very FIRST time today! It was quite funny! She didn't get the having to push your breath out for a full 3 seconds down very well. Even with her only pushing out to 1 1/2 seconds, they were able to get a prelim. # of FEV1 = 102. They said they won't use her numbers in her records until she is 'good' at the technique.

ENT appt. went great! Her nose looks great! So we don't have to go back to ENT for 3 months.

So, that was our day, I'm tiried, going to go cuddle up in bed and watch a funny movie, need to laugh.

My kids left today...

My parents stoll my kids!!! Honestly, they took them home with them for 4 1/2 weeks. Well, they took.....Austin 15, Alex 12, Madison 11, Sydney Kaye 7.....I think I might have a heart attack!!! :) Just kidding....but....being without my kiddos for ......yep....you guessed...a LONG time to ME....almost 5 weeks!!! I think I might go CRAZY!!!! Sooooo..... it is me, Scott....and Zoe. That is it. Oh my gosh. My house hasn't been this empty in.....hell....I can't remember when. Uggghhh.
Soooo, if you are on my calling list....BEWARE.... I may be calling much more OFTEN than usual.
MY PARENTS HIGHJACKING MY KIDS!

On another note, Zoe has her CF appt. tomorrow, and her ENT appt. All in the same day! Please pray that she has had a weight increase....other wise, we will be discussing WEIGHT...Uggghh.

Have a nice night....take care of YOU and YOURS....
Love,
Jada

A CF Reality

Last night at 8:00 p.m., a small, sweet, adorable 7 year old boy named Garren, received a double lung transplant. He has Cystic Fibrosis. His lungs were almost useless....he had to have a transplant. He has been on the waiting list for 6 months. A double edged sword this is. We are grateful, excited and blessed that Garren gets a new chance at life.....we all know it is also a sad day...for the family that lost their child.
I met Garren and his mom (Victoria) in 2006 when I joined cysticfibrosis.com (my main support group). We call him G-man on the site! :) He is a trooper!
Please visit his caring bridge site http://www.caringbridge.org/visit/gmantxfund, say a prayer for him and his family.
Jada

A very nice Saturday....

My parents are in town...I am soooo happy! I love being around them. We took some good pics by the water on our walk today. We live by the marsh...it is a nice walk to see the water.

My parents and I talked about CF alot tonight. They have all but convinced me to write a book about CF, our story, but also the knowledge that we have learned on our own. I know that when Zoe was diagnosed, we were handed a 'book' about CF. Well, I have to tell you, most of the things that actually PERTAIN to Zoe's CF, we have learned by doing our own research. Not from those silly handouts they gave us at clinic. Soooo...we will see...who knows??

Enjoy the pics of our day! I really hope and pray that you all are having a BEAUTIFUL weekend like we are. We feel very blessed right now...NO COUGH...Yeah!!!!!!!!!!!!!!!! Love Ya'll!!!

A Lovely Blog Award

I just realized last night that I needed to post my lovely blog award.....sometimes I'm just a little sloooowww on figuring these things out. Ugghh.

I feel so honored...I have received 2 of these from new blog friends! Wow! Thank you guys!

First one is from M...http://acure4lilchris.blogspot.com/.....the second one is from Jessie...http://www.breezysbravery.com/.

The award is for those that step out of their comfort zone and meet new blogging buddies. Everyone I have met through blogging already has one....so I'll just say....lovely meeting you all...you all have LOVELY blogs!!! :)

Have a Lovely day....

Jada

Playing with my blog!

In case you didn't notice....today I have been 'playing' with my blog. I want to be able to change out things on it....you know....like when you get the 'urge' to change the living room furniture around! :) At first I was looking into paying someone to make me a beautiful blog like so many I have seen....but money talks...and considering we are trying to conserve to pay things like....BILLS...I decided to do TONS of research on the internet to see if there was anything I could do myself. Soooooo I will keep playing with all this new info I keep finding until I get it right. Please bear with me.

Zoe is still 'cough', 'throat-clearing', 'runny-nose', FREE!! How awesome is that??? It has been a surreal few weeks. I did weigh her today. 40.5 lbs. Ugghhh. She weighed almost 43 lbs. 2 months ago. Being the first time since before diagnosis dealing with not gaining weight...it has me a little worried. I don't want this to be an issue. I don't want to even THINK about a g-tube. Yeah, I'm in denial, call it what it is. I want to 'fix' everything myself...but I can't FORCE her to eat/drink. How frustrating is it that a cf'er requires so much more calories/fat than normal kiddos.

My mom and dad get here the 27th. I can't wait! I love being with them. They are so encouraging to me. I need to be near them so much more as I get older. Hmmmm. Why does it work that way? When we are younger, have all that time with them, we don't want to have anything to do with parents, then when we get older, can't seem to get together very often, we CRAVE, NEED, CHERISH that time with them. Seems a bit backwards if you ask me!

Take care of YOU and YOURS......
Love,
Jada

Zoe's first dentist appt.

Today was the day! She had been in a dentist office a few times with her siblings, but just to watch. Because of her major oral adversions and being afraid of people doing anything to her that might hurt, we had decided to wait until she was older and could understand it a bit more.

The x-rays did not happen. She gagged when the nurse tried to put them in. Thank God we found a new dentist office that works with little kids in a very calm, patient manner. They were super! She just told Zoe, "It's ok, now you know what they look like, maybe we will try again next time.".

Then we went to her room, passed by Austin's room where he was at the moment being cleaned. I thought it would be a good idea to show him to her. Guess not, because to her it looked like some woman with a mask was leaning over her brother with a "Pokey, sharp" thing. Hence, her melting down into a teary eyed crying session when we walked into her room.

The lady was super nice though, managed to talk her through cleaning her teeth (with her own toothbrush-she wouldn't let her use the electric one). Then she brushed the flouride on her teeth. The dentist, also a wonderful sweet lady, came in to look at her teeth then. The little brown spots that I was concerned about, turned out to be plaque. I first noticed them after her first sinus surgery. I thought it was something they put in her mouth during the surgery that did it. Turns out, apparantly, when your teeth are exposed to air for longer periods of times, like when under sedation and intubated, the plaque can turn color. Nothing for us to get to worried over, just keep brushing like we do. And do an over the counter flouride rinse at night right before bed. She didn't have any cavities!

Oh also, something else I learned....we always brush her teeth right after nebs and /or meds. That is a no-no. Figures. She is supposed to rinse her mouth with water, then 30 minutes later do the brushing. When you brush the teeth immediately after meds, it just grinds the meds into the teeth. Lovely. So, something else to remember....30 minutes after meds/nebs. UGGGHHH!! I told Mel, I think I will set a timer...it will be dubbed the "TEETHBRUSHING" timer.

She did NOT want a picture taken of her time at the dentist, but I snuck one in anyways. You can tell how thrilled she was with the whole dentist thing.

Have a blessed day,

Jada