A new week, No answers and an Un-sure Mom...

The last few days have been pretty up and down. My mood has dropped and I have become frustrated and worried. I am down right DONE with waiting. Waiting for tests, waiting for Jack to eat more, waiting to figure out whats really going on with MY baby.

Why do I feel so alone? I am left in the dark and there is no light switch.

Yesterday was President's day, to me it was a much needed day off. Besides all the days I have taken off, this one was scheduled. It was nice to sleep in, play with the boys (I'm not going to lie, I wanted to ring their necks like a dish rag!) clean the house and make a nice dinner. All in all, I LOVED it... every single second!

So, I ask. Why do our moods change so quickly? Why do we feel so happy, careless and free one minute then BANG... so down the next? For your own information I do see a Doctor and I do take crazy meds why? Cuz I AM GOING INSANE!

Sorry for such a yucky post, just felt the need to clear the air!

Love to you all,
The Mama

Frustration...Anticipation...Acceptance

Hidey Ho...

Update? Here we go!

Yesterday Jack had an appointment with our FAVORITE Doctor... Dr. B! As I mentioned below, he still has an earache and now his throat is sore AND he just finished his 10th day of antibiotics. I was also really looking forward to having a minute to talk directly to Dr. B about my FRUSTRATION with waiting! When he first came in, he checked Jack up & down, round & round! He is soooo good with my kids and especially little Jack who is so sick of Docs! (Did I mention that I really like him?) Okay, I really like him!

NO ear infection!!! The sore throat is from left-over blisters that are not healed but do not need to be treated!!! I was so happy to hear NO meds!!!

Now... the ANTICIPATED yet dreaded topic, the 2nd half of Jacks genetic test is still being carefully watched in the lab, I picture it like this...

Dr. B reassured us that we are not forgotten in the physics world, he said that the 1st half of the test is the one that only takes ONE week and we did get the info in that week! Ok... I guess I will force myself to have a little more patience. He also told us to ACCEPT that Jack has CF and that these tests we are waiting on are just to tell us how we are going to treat it.

*****I WAS AFRAID OF THAT*****

I guess I kinda knew in my heart though..............sigh................

We also found out that the head DOC at the CF clinic is following Jack very carefully. She has another patient with the same symptoms and numbers. I take that to be a good thing seeing how she is following them both and comparing their tests and so forth!

On a lighter note... my little guy gained 4lbs, I was sooo excited!!! According to the Dr. it's a good thing so when he starts losing, he's ahead 4lbs and he's not losing from square one *bittersweet*smile*

This is all I have for now, thanks for your thoughts and prayers,

The Mom

Prayer Corner...

Just wanted to remind everyone to keep praying for Jackee!

Just because the Doctors have left us hanging we don't want any of you to leave us too!

We are STILL waiting! Notice I didn't say "patiently" this time?

On another note... Jack still has his ear infection and now a sore throat (according to him, ONLY when he swallows) we will have our TRUSTED Doctor, Dr. B check it out later today!

Thanks to everyone who checks up on us! We love you ALL, The Mom

Happy uhhh.... Valentines Day!

Today is VALENTINES DAY, it's a day for LOVE! I also think it's a day for THANKFULNESS...


I am THANKFUL that I have an AMAZING Husband and 3 WONDERFUL Boy's to LOVE!

Benj, Jaden, Jack & Jensen... You make my heart beat! I love you all so much!

Today is also, ALMOST 3 weeks since Jack's genetic tests.

As you can imagine, I feel like this...

I have lost patience and now I'm just flat out pissed!

Here's to hoping they'll be here soon...

"Some" results are in...

Almost EACH & EVERY prayer has been answered!!!

So far the test results are making us believe NO CYSTIC FIBROSIS! That's right... it's looking more and more like Jackee DOES NOT HAVE CF! The Doctor is NOT 100% positive just yet and he is still waiting on a few more results. At this point, IF Jack has it... it is a MILD case! The rest of the results won't be in til the end of the week but for now, we are CELEBRATING because this news is GREAT either way we look at it!

For now... I LOVE YOU ALL, I am so THANKFUL for the love and support you have shown us!

Lot's of Love, A very HOPEFUL Mom

A much anticipated Monday!

Well here we are, Monday already!
Let's sum up the weekend before we talk about what we are waiting on today!

Friday I took Jack to the Doctor to confirm that he did have an ear infection. He was started on antibiotics and we continued the Tylenol for pain.

By Saturday morning things were looking up and Jack was off to spend the day with Grandma Barb. Later, when it was time to come home, Jack informed me that he had to sleep over at Grandma Barb's because he needed to go to church and work with her (USHER). I kept trying to talk him into staying home with me but he wouldn't. After spending some time together we ironed his church clothes and I dropped him off!

Sunday was fun, the boys and I went to Aunt Lydia's for Byron's birthday party. By 5:30, the boys and I were in our pj's watching the Super Bowl together! I was a little bummed that we weren't out partying but, it ended up being just perfect. Thanks Jaden for explaining the ENTIRE game to me! SIDE NOTE: At the beginning of the game Jack said "I know how to play football! You just grab the ball, tackle everyone, then touch the base!!!" I love how innocent he is!!!

After a great weekend... today is the day the genetic test results should be in. Actually, they should have been in LAST Wednesday but I've started to notice... people don't rush if it's not their OWN child they are reading tests for! Good thing we have a GREAT DOC!

Hopefully I'll be updating later today with GOOD NEWS!

Loves to All,
The Mom

FrEaKy FrIdAy...

Well, little Jackee has an ear infection. He has been in pain all night and it has rolled over into today. He insisted on going to school for his Valentines Day party and since it's short day, I let him. In the meantime I called to get him an appointment with his Pediatrician but HE and ALL the Doctors in the Office are FULL!

FrEaKy FrEaKiN FrIdAy!!!

I guess I will work the rest of the day, 4 more hours and take him to the instacare.

Lesson for the day, DON'T WAIT TO TAKE YOUR BABY INTO THE DOCTOR NO MATTER HOW MINIMAL YOU MAKE THINK IT IS!!!

Until then...

Lot's of Love,

The Mom

I just wanna ride the ride...

On Wednesday Ben and I took Jack to the Immunologist. We were referred to him due to Jacks recently diagnosed "OAT allergy." Can I just tell you what a waste of time that visit was? We sat there for EVER waiting to get in, then to be seen, then to be tested and then to be seen AGAIN... I was so frustrated!!!


When the Doctor finally came in he said "the test came back NEGATIVE for the oat allergy. In fact, he has NO allergies"... AMAZING news! Then he says "I don't think he has Cystic Fibrosis but I am just a dumb immunologist." WHAT?!?!?!? You mean to tell me that YOU, one out of 4 Doctors, think he doesn't have CF?


Here is where we go up and down, round and round, A G A I N!!! Thus the title of this post!

The Immunologist requested a scope of Jacks throat, he will chart his concerns, send them to our Pediatrician and advises us to contact Dr. B!

*WAIT...... did you just say my Son may not have CF?*

AND again, follow up with our Ped.

A few hours later I call Dr. B's office hoping for results on the GENETIC TEST and nothing! 1 week has turned into 10 days and now I'm advised to wait til Monday, yup.... Monday, oh well we have a weight check that day anyway! The Immunologist contacted Dr. B directly (that was nice) to express his concerns. Dr. B thinks the scope is a good idea but not for a few months. AND there is a chance Jack's genetic testing may provide proof that he does NOT have CF.

Again WHAT?!?!?!?!?

"Don't get your hope up" I was advised.

Well guess what? It is the weekend and I am going to be HAPPY and HOPEFUL at least until Monday. SO THERE!

Love to you all, The Mom

Good News, I think!!!

One of the tests we have been waiting on came back today!!!

Pancreatic Elastase:
a digestive enzyme secreted exclusively by the human pancreas.

Jack's is NORMAL! I don't know too much other than it's good news! Hopefully this will put off treatments!

Love to all,
The HAPPY Mom

Update? Documentation? YOU decide!

Still waiting...
We are waiting and wondering and our patience is being tested!!!
Hopefully the GENETIC TEST RESULTS will come in today!

In other news... I don't know if I mentioned this before but, one of the tests during this mess came back positive for an allergy to OATS. Weird? I know!

Anyway, the allergy has been put on the back burner since the diagnosis of CF. Last night Jack asked for some cheerios and without a question I gave him some! It wasn't long before he had ripped all his clothes off and was an itchy mess! I decided to look at the Cheerios box and read the ingredients: OAT this and OAT that!

Oh my gosh... could his allergy be showing thru all of a sudden or am I just putting the puzzle together?

I contacted our Pediatrician's Office and was told that the itchiness is probably from the OATS. So, what can we do? NO MORE CHEERIOS for Jack, that's all!

Today is going to be good!

Hopefully we get some answers soon, until then...

Love to all,

The Mom