We have an UP-date...

I just received a call from Primary's GI Clinic. Dr. Molly O'Gorman requested the scope for Jack's tummy. We have to be there at 6am on Tuesday the 19th. Jack will be under general anesthesia for 1 hour. We should be able to go home around noon. Remember to pray for him! Love, The Mom

This is late...

I am so sorry for not posting this before now BUT as most of you know, I sent messages and called everyone within a 3 second window as fast as I could! Jack's Cystic Fibrosis genetic tests came back FINALLY!!! When I called the lab to see if the results were back I was lucky enough to talk to that same nice caring guy I have blogged about prior to now. He said "your Doctor will get a fax and let you know the results BUT... I'm sure not going to keep you waiting any longer then you already have. Your Son DOES NOT have cystic fibrosis!!!!!!!" I couldn't even process what he said I was crying so hard. Next step... back to GI to watch weight gain and loss and schedule for a scope. BUT, before that step... we celebrated as a Family at the Movies! Thanks everyone for following and continuing to follow. Please keep the prayers coming! Love, An ECSTATIC Mom

To my Human Angel, Jackee

These are the lyrics to a song by Train. They explain just how much I plan on protecting my baby thru all of this!

I wanna take you with me

to life with no more yesterdays

we can start again awake and so excited

and change the way we always push

I'll open up and be your parachute

and I'll never let you down

so open up and be my human angel

and we'll only hit the ground

RUNNING

and when the world gets sharp and tries to cut you down to size

and makes you feel like giving in

oh, I will stay, I will rain, I will wash the words and pain away

and I will chase away the way we push

the way we pull

you're beautiful

I'll open up and be your parachute

and I'll never let you down

so open up and be my human angel

and we'll only hit the ground

RUNNING

and if it feels like we may drop

it will stop

so don't look down

it wouldn't be the same without you

this life is too good to give up on

I'll open up and be your parachute

and I'll never let you down

so open up and be my human angel

and we'll only hit the ground

and we're gonna hit the ground

RUNNING

Not much to update except...

... more of my, I'm done waiting, done being nice, done, done, done... ATTITUDE!

So sorry to my followers for the "tude" it is what it is when you're the Mother Bear!!

Ok so, I decided it was time to stop asking my slammed busy Pediatrician and his slammed busy Nurse to check for results. I retrieved the phone number to the lab that has possession of MY child's blood and gave them a call. AGAIN, it was NOT nice... did ya think it would be? Ha Ha!!!

After the Lab technician had his head chewed off for telling me that Jack's blood work was pending, he began to apologize. He actually was an incredibly sweet guy. He told me the process of breaking down EVERY gene in our bodies, from head to toe... how many's and what colors! THEN (this is the part I liked... and it's also the part that adds time to this test) they lab technician DOUBLE checks EVERYTHING that is abnormal. That sweet guy also told me that the results will be here NO LATER than Tuesday March 22nd. I sure hope he understands what a promise like that means to this Mom!

Oh ya, little Jack is playing Machine Pitch Baseball this year for the Chicago Cubs! He would LOVE to see any of his blog followers cheer him on!!!

Love,
The Mom

GI Clinic Visit March 9th, 2011

Last Wednesday Jack had his appointment with the GI Doctor at Primary's GI clinic. I wasn't looking forward to this appointment at all. First, I had a feeling it would be a waste of time and Second, I DO NOT love the Doctor. She is very rough and cold. I feel like you are another number to her, another problem that she can cattle in and out quickly.



Both things I felt happened immediately, no new news and an abrasive rude Doc!

What a WASTE!

Most of you who know me, know that I learned from my Mom to NOT take any ones crap. (Thanks Mom) So, after a few careless words from Dr. Evil (ha ha) I grabbed my purse and told the boys "Come on we are leaving." She instantly changed her attitude and began to tell me "I know you are stressed, I see scared Parent's like you all the time etc." I interrupted her and said "I don't care if you see Parent's that are worried and stressed all the time. This time, this hour it's ME and MY Son. You don't know how I feel and you better never compare one scared Mother to another. I am done her and I will return to my Pediatrician." Boy did she mellow out quick! She started spitting out apologies and reasons why and this & that. Then she begged me to give her a chance to help us. I think I made it pretty clear that she is treading deep waters!

*Deep Breath*

Now that that's out of the way :) Dr. *BLANK* said that Jackee has gained 1lb from Jan 19th to March 9th. That is GREAT! She said she doesn't care about the pounds he has gained and lost in between! Because the genetics are STILL NOT BACK we are still at a wall. No good news, no bad news. Jack was also started on a new medicine that he takes 3 x per day to stimulate his appetite. I have noticed him to be a little hungrier BUT, it makes him so sleepy. When I say sleepy, I mean 1-2 hour naps after each dose. According to the Doctor he will get used to it but it may take up to 3 months. I have to just throw my hands in the air and say "WHATEVER" with a BIG smile!

I sure hope everyone is doing good and enjoying this beautiful SPRING weather!

Love,

The Mama

Day Since...

Well here we are March 1st, 2011...

58 days since my concerns became REAL

40 days since GI Clinic

39 days since Upper GI Series

38 days since Cystic Fibrosis / Sweat Chloride Test

38 days since FIRST notification of high result on Sweat Test

35 days since Cystic Fibrosis was CONFIRMED

29 days since Genetic Tests

21 days since 1st HALF of Genetic Test Results came back that gave us some HOPE.

9 days til our Doctor gets back from AFRICA (Really... traveling on your own time? ha ha)

6 days since we've been to the Doctor

5 days since Jack's missed school

2 days since he last complained of Stomach Pain

and...... DRUM ROLL

5 minutes since I last inquired about the SECOND half of his Genetic Test!

Today is a good day! In fact, this week has been good so far! I think after the rough week that we had in the BANKS house... last week, not much can get worse. I know, I know... I'm tempting fate by asking for more. Ha, well bring it on we are armed and ready! OK, don't!

The good news... with it being March we are that much closer to SPRING!!! Yippee!!!

I sure hope everyone is enjoying a little bit of sunshine here and there, when you can!

Life is SIMPLE.

Love,

The Mom

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

Weekends are better...

"Feeling are much like waves, we can't keep them from coming but we can choose which ones to surf."

For some reason since Jack has been diagnosed with CF, I feel like weekends are "emotionally easier."

Jack spent this past weekend with his Daddy, I always miss him but this weekend it was a lot different. For the past few months Jack and I have spent countless hours together trying to figure all this out. The waiting at Doctor Offices, Hospitals or even just driving, has given Jack and I some amazing bonding time (not that we were lackin :) anyway, I think I've just gotten comfortable with him literally hanging on me! As a Mom, even when you trust the Man you are sharing your child with, it is hard to let go. Rather it be for a few hours or for the weekend, it's still hard. I will admit sometimes I get to the point where I say "I NEED A BREAK" but a few short minutes after they walk out the door I begin to miss them! This weekend was sooooo relaxing and nice, thanks to some much needed one on one time with my Husband whom I ADORE! By Sunday morning we had Jaden and Jensen home with us and the count-down was on for Jack to come home. I swear what was an hour seemed more like 10 hours. I kept myself busy doing the very thing my Mom used to tell me "NEVER DO" *I was wishing time away* Then all of a sudden it was 8pm and my beautiful baby walked thru the door, hugged me and said "I missed you Mama" that was it. My home was now complete, my Husband and Children all home, safe and happy. The only sad part, it was all just in time for the weekend to end. The good part... we were together!

The reason I feel weekends are less emotional, there are NO clinics, NO test results, NO office visits etc. It almost feels like all of this is a dream. And then... in the middle of NO WHERE, Monday comes and dangles "worry," "confusion" and "sadness" from a string, right in front of your face.

We are looking forward to NEXT weekend but in the meantime, we are patiently waiting for more test results. We are looking forward to answers and a treatment plan.

Thank you, Thank you, Thank you... each and everyone of you that have: thought about us, cared about us, checked on us, prayed for us, cooked for us, babysat for us, spoiled us and loved us! We knew we had great people in our lives but we never imagined how many. For those of you I have not responded to nor answered your calls, please don't be offended. I appreciate EVERYTHING!

"The smallest act of kindness is worth more than the grandest intention."

Until next time...LOVES to all,
The Mama

HOW DO I GET OFF THIS RIDE?!

The Diagnosis ~
Up and down, around and around, out of control and going wayyy too fast! That's how some parents describe how they felt when swirling around in the medical maelstrom that follows a child's diagnosis of Cystic Fibrosis. *EXACTLY HOW I FEEL*

Some simple things that can make a BIG difference ~
* Positive support from Family & Friends
* Support from CF communities
* Focus on Faith
* Blog
* Read inspiring books
* Take time to do fun things

Understanding Guilt ~
* It is my fault that my child got sick
* I must make sure my child is happy all the time
* It is my job to make my other children healthy
* It is selfish or wrong to take time for myself
* The family is a mess and it's my fault
* I need to try harder

Avoiding Bumps in the Road ~
Parenting isn't for the faint-hearted! Raising throughout their developmental stages is tricky enough; parents of kids with CF have to face additional challenges along the way.
When we know where the bumps and potholes are, it becomes a lot easier to avoid them!

The Good News ~
Just like a roller coaster, the "newly diagnosed" ride eventually slows down and stops. Even in the toughest of circumstances, life has a way of becoming routine. You will find a new "normal." and you'll be able to look back and say, "As scary as that experience was, I survived!"

January 24th UPDATE

Today our Doctor is back in town!!! Yippee, Welcome home, we missed you and need you!

At 4:30 today we had our appointment with Dr. B. Jaden, Jack and I loaded up and off we went!

I figured that he would request to re-do the sweat test or possibly say "nothing to worry about." However, he had figured on telling us a totally different thing.
He began to tell me a little about CF and then confirmed that Jack has it. He asked the Med Student working with him to take my boys out of the room so we could talk in private. He told me the good, the bad and the ugly.

Then he asked if I wanted him to talk to anyone else or even have him assist us in telling the boys. (Something we chose to do because they were concerned when they saw me crying). Ben and Kenzie (Jack's Dad) came right away and we had the opportunity to ask alot of questions. I have no idea what is next but I'll keep ya posted!

Loves to all,
The MoM

January 21st UPDATE

The sweat chloride test went ok! I couldn't tell if Jack was really un-comfortable or if he was just sick of tests, either way he HATED IT but remained strong!

After the test they informed us that we would have results that evening. Because our Pediatrician was out of town in Africa (I know, perfect timing huh?) I was given the results by another Doctor in his office. She stated that he tested high for CF but not to stress because she doesn't know much about it and if she remembered correctly the numbers were ONLY "high borderline." AND... that was the wonderful helpless information I was given at 4:45 on Friday Jan. 21st 2011.

FOR NOW, Loves to all,
The MoM

January 20th UPDATE

Jack had his Upper GI Series with Barium yesterday. Lucky for us we had an AMAZING Nurse and a very KNOWLEDGEABLE Doc! Jack was a trooper and drank the Barium as if it were soda!
The test took about 20 minutes and we were done! The best part of today's test, we had results immediately. NOTHING was found--no swallowing difficulties, gastro-esophageal reflux, ulcers, abnormal growths, scars, narrowing of the GI tract, hiatal hernia, or diverticulitis. It also gave us reassurance that his bowels are not backed up. In other words, MORE ELIMINATION!!!
Tomorrow morning bright and early, we go back to Primary's for a Sweat Chloride Test to ELIMINATE Cystic Fibrosis.

Love to you all,
The MoM

The Beginning...

As many of you know we have been concerned about Jack's weight for awhile now.

Long story short... When Jack was born he weighed 8lbs 1oz, when he came home 2 days later he was 7lbs even. Jack's weight has been an issue from the beginning, but when he was 2 months and 3 weeks he was finally back at his birth weight.

The first time I recall an issue (which I thought WAS NOT the flu) was December 29th, 2005. Jack puked so many times that he became dehydrated. "It's a normal flu bug" is what the Doctors would tell us.

Over time Jack seemed to get the flu constantly however, he never had a fever or any other symptoms of flu. The biggest NON symptom... Nobody around him ever got sick.

By the time jack was four he was in the 90th percentile for weight and 95th for height! What a turnaround for our little Jackl! His cheeks filled in and he started to look chubby.

In the last year Jack's puking episodes and stomach aches have become more frequent, averaging about 6 weeks in between. He has been losing weight and in the last 6 months he went from the 25th percentile to the 3rd percentile and lost 1 pound without gaining an ounce.

We have a new Pediatrician who seems to be on top of things, He's run lots of tests for process of elimination. Side Note: Jack feels like a pin cushion or in his case a pin bone, since he has no cushion.

On January 19th we spent the morning at Primary Children's GI clinic. We were lucky enough to see both the Nurse Practitioner Deborah Lenner and the Doctor, Mary O' Gorman. They did a thorough exam of our little Jack and discovered that his lymph nodes are abnormally large. So, on top of the other stuff that's going on now the concern has shifted and, off to the lab for more blood work. After another session of process of elimination they may request to remove them however, the labs will take 2 weeks to get all of them back. Some will results will trickle in daily and the GI Clinic keep us informed at all times.

On January 20th we went for an Upper GI Series to see Jack's little insides.

As for now, these are the only updates I have. We are praying for Jack's health, for answers and for God to settle our minds and comfort us during this time.

Thanks for the concern you have shown us!

Love,
The MoM