"Everyone needs a place to call their own"

Tuesday, June 29, 2010

CF & Liver Clinic tomorrow!

So I am preparing everything to leave in a few hours.  It's a four hour drive to Gainesville, FL.  Ayla sees the Dr's @ Shands Hospital @ University of FL (Go Gators!)
We always go down the day before and stay in a hotel so it's not so crazy the day of.  Also so it would be near impossible to drive down day of with an early morning appointment.
She has not been to either clinic in about 4 months, our last months appointments had to be rescheduled.  I am always both excited and fearful of what the Dr's will say or hear.  She has had quite a few ear infections in the last few months and is nursing a cough and cold now.
But her weight has definitely went up since we were last there, so that's going to be good to see where she stands on the infamous "growth-chart."
I will post an update with all details from our visit, prayers for good things!

Monday, June 28, 2010

Home-Made French Toast Sticks!

A facebook friend of mine gave me this recipe....it was such a hit with Ayla I thought I'd share with all of you!

Take 100% whole wheat bread (not enriched) cut into strips and dip it in a mixture of egg, half and half, and Cinnamon, and grill in pan..I used a little coconut oil in the pan...dip into pure maple syrup...enjoy!

Cut up some extra so you can freeze and have this tasty breakfast anytime!

Thanks for the Idea Kacie, this is a great home-made spin on those packaged versions you see in-store!


Sunday, June 27, 2010

Ayla's Ballet and Tap Recital....

She was a little shy at first....the video is a little shaky, but she's the one not moving much...haha.
It was so cute <3

Saturday, June 26, 2010

Rest In Peace...another sweet life lost to CF

This little guy was 7 years old....he lost his battle late Thursday to Prune Belly Syndrome and Cystic Fibrosis...

I hate to admit it but when I see things like this sometimes I don't even want to read the blog post that it came from.  It's really selfish but when I see my daughter and how alive she is...it's too hard to ponder the thought that this could be her.  And that's what happens when the killer that CF is shows itself in ways like this...taking little Connor away from his family and this world...it's just not fair!

There have been so many things in my life that haven't went according to plan..and didn't make sense to me..and this is yet another one...This little boy lived only 7 years and fought his entire life to stay alive and be healthy.

It's so heartbreaking to see this sweet face and know that he suffered from the same disease that my Ayla lives with..Why must some live to be old and gray with this disease and other's pass away so young?

Month's ago I read Connor's mom blog and felt for this mother knowing that her son would not live even another year is unimaginable to me!  I have been watching as other CF parents have posted about his updates and knowing the end was near for this little one...was just so hard.

I have felt so many different things...the way I deal with most things is to not speak of it...some people feel that if they don't acknowledge things in life they aren't giving that thought life....and that's where I have been.  Afraid to write about it...afraid to post about it...because if I did I was admitting it was possible for Ayla.

But I decided this morning to get out of my head and write about this and honor Connor and his life.  The thought that this could happen to Ayla is a thought that never really escapes me anyway.  And I wanted to do my part along with the other CF bloggers to lift up the Jones' family in prayer.

You can make a donation in Connor's name to the Cystic Fibrosis Foundation

Please join with me in prayer for his family and his precious parents.
And for the government to somehow see that this disease NEEDS federal funding for research.
And for the scientists and researchers diligently working toward a cure for CF.

Rest In Peace & Breathe Easy Little One,

Monday, June 21, 2010

My New Thing.....

So recently a family friend gave me this gadget called the Beaba-Cooker (you can get one @ Williams-Sonoma)...
This is what it looks like...

Before I got this little-jewel I had been asking around all over facebook and Cystic Life for advice & recipes on feeding my little one "better" food.  I had been gathering items and making a list for the next time I went to the grocery store, to buy as much organic foods as I could. 

When I was given the Beaba-Cooker I got really excited because this gave me a way to quickly cook (in less than 15 minutes) a nutritious high-calorie meal for Ayla.  This is so neat because in the book it says to use the leftover water from steaming to blend food to your desired texture....but I added organic half
half to my baby sweet potatoes...blended them with skins on and added Cinnamon and pure cane sugar...I tried them and wanted them all for myself!!

This is just one example of the food you can quickly cook with this thing...there are fruit and yogurt blends all kinds of veggie ideas and so much more!  You can leave steamed veggies or fruits whole or blend them for a yummy treat!  Did I mention this is an awesome baby food maker?

I have gotten on this kick, of wanting to offer better foods to my family...not like a diet but just more "real" food.  Less packaging, less preservatives, more organic foods for the whole family.  I'm trying to make more of the "treats" I give Ayla....and if not they are organic snacks with all natural ingredients.  

I haven't been doing this for long, but already feel so much pride when I give her something I made fresh for her, instead of opening a packaged pizza or Ice cream sandwich!  

Since Ayla has mostly the GI side of Cystic Fibrosis and knowing that sugars are bad for people with digestive problems....this new way of eating will surely improve her tummy-issues!

And with this cooker it's so much easier than I expected.  I was also surprised when I left Publix spending less than $150.00 on all organic foods!  

So I just had to share this gadget with all of you, because I am so excited about it!  
What to cook next???


Father's Day

We had such a great Father's Day! We spent most of the day with Larry's family.  His grandpa's 90th birthday was also celebrated.  We had about 13 of Karen's (MIL) side of the family in.  We swam, ate and relaxed by their pool.

Larry's father's day present which I bought last week was given to him early.  I am usually really bad at waiting until the actual event that I bought the gift for but this year I was determined.  I didn't think about the fact that Ayla (the child who is always watching) was with me when I bought it....Later that day....she decides to tell daddy....."Daddy, we got you a watch!" -So needless to say it was a memory-made and Larry loved the watch.
Here's a picture of it, Nice huh?

The rest of the day was spent over at my dad's.  We dropped by to give him a little gift and hang out for a bit.  We were so very tired from "poolin it."  After that we came home got Ayla in bed by 730 and we watched a movie and relaxed on our new couch.  We are lovin it! 

At the end of the day I thought about how much has changed since last father's day....so much has changed for the better.  I had to say a prayer and thank God for the husband and family I have, I am so very lucky!
Happy Father's Day Larry, we love you so much!


Friday, June 11, 2010

My Appointment Update

I had my post-op appointment today, it went good.  Everything looked normal and we were given the "green-light!"
Now we just gotta wait 30 days for insurance to kick-in!

Dr E. had ordered some tests and had the results, most of them came back negative except for one....apparently I have another "bad gene" other than being a Df508 (cf carrier).....it's a genetic mutation that makes you more susceptible to having miss-carriages, stillbirths and other problems related to pregnancy...it's called MTHFR (Google it for tons of info)

So I have to admit that was a shock!  I thought my genes couldn't get any worse!  BUT....there is an upside!  Unlike the Cystic Fibrosis gene I carry there is a treatment for this.  All I have to do is as soon as I get a positive at-home test, I begin a daily regimen of baby Aspirin.  I guess this problem is associated with blood clotting and Aspirin will help to thin the blood.  They just started doing this tests 2 years ago!!
What a blessing that they do!!

So please keep us in your prayers that God will bless us with a healthy child SOON!


Wednesday, June 9, 2010

Post-Op Appointment Tomorrow

Tomorrow is the day.....I have been looking forward this appointment since my procedure (read last post for full story).  She did some "routine" blood-work and I have been anxious about those results.  
I am also excited to talk to her about when we can "try" again.  I'm always anxious about going to the OBGYN- although my Dr. couldn't be more comforting when it comes to the news I've received while in her care.  I still feel afraid of getting more bad news.  I'm sure it will be that way when we get pregnant again even more now-after what happened.  
But I am still hopeful that it will be a good appointment and all my tests will have come back "normal" and we have "The Green Light" if ya know what i mean... :)  
And if that's the case....we will then have to wait on Insurance....ugh! Did I mention I have been shopping for a policy?  For those of you who are part of a "group plan" -Thank your lucky stars!!
"Because maternity for individuals officially SUCKS!"
I am going to be paying almost 400$ a month for insurance that only pays 50% of my maternity costs after my $1500 deductible...can you say.....CROOKS?  But luckily we are eligible to enroll for one person group rate in August- so we will be doing that-FO SHO!


Monday, June 7, 2010

I've added pages to my blog!

So I was playing with my blog trying to fix some things I messed up...(still haven't figured out why sometimes my pics are where they are supposed to be and sometimes that and blog I follow are all underneath my posts)...but while attempting to fix that I figured out how to add pages to blogger.  Not that it's hard or anything-I just hadn't made any changes to my blog in so long.

But anyways....I've added 4 pages to my blog:

  • Ayla's Story (very lengthy..)
  • About Cystic Fibrosis
  • About Billiary Attresia
  • Why I blog?
Check them out if you have extra reading time on your hands!


Friday, June 4, 2010

under construction

my blog's appearance is changing....it's a work in progress...so bare with me...my page elements are all out of wack...just scroll down to see all items/pics on blog regularly...its got them on top of each other for some reason...not sure how to fix it...


Thursday, June 3, 2010

News I've been dreading to deliver....

I haven't blogged in a while....I know...I'm sure those of you who read this were expecting exciting baby updates to come from me.  And that's part of the reason I haven't written.  I haven't had anything good to say, we have been going through a lot these last couple of weeks and I didn't have the words or the desire to share.
For those of you who are close to me know that I am the type of person who really withdraws when things get tough.  I have preferred texts to phone calls these past couple of weeks from pretty much everyone.  I just haven't had the energy to make those loved ones feel that I am "okay."  When I wasn't sure I was.
I will stop explaining and just say it.  I lost the baby last week.  I went in for what should have been a "boring checkup" and it turned out to be another appointment @ my OB where I received the shock of my life.  First learning of Ayla's abdominal "mass" and now to hear no heart-beat and see no movement from my 2nd pregnancy.
After more testing to confirm the miss-carriage, my Dr. scheduled me to have a D and C.  She said based on the ultrasound this most likely happened around 13 weeks.  I had no signs or symptoms, I was very much at peace with the health concerns for this child.  It felt like a punch in the stomach.
I had the procedure about a week ago and recovered well.  I went to my sisters home in Knoxville for a few days to rest and have "girl-time."
I got home today and looked on the fridge and saw the only evidence that I was ever pregnant for a 2nd time...my one and only ultrasound picture at six weeks.  It's hardly nothing to look at, but something i will treasure forever.
I am feeling positive about trying again but very fearful about many things...including CF, and now miss-carrying.  I am eager for my post-op appointment to hear what my Dr. recommends and find out when we can try again..
Thank you to all of our friends and family who have been praying for us!

Ayla Appt Update: We did not make it to her appointments due to the above, they were re-scheduled for June 30th.   She is doing well and had so much fun with her cousins Gavin & Nolen!