The woes of CF......

Today’s clinic visits started at 1:30 with pulmonology. I was dreading the weigh in, thinking that she probably held her own, but didn’t gain. Nope, she has officially LOST weight now. I almost cried right there on the spot.

After a long discussion with Pulm., Nutrition, Research, G.I., this is what they have decided to do…….

Pulmonology has ordered:

1. CF Respiratory Screen (much to Zoe’s resp. nurses surprise, Zoe coughed a nice thick, mucousy cough when she went to swab her, so got what she called an awesome “gooby”! Her nurse was so excited to get that from Zoe, she ran it to the lab herself!)
2. Hemoglobin A1C
3. Glucose/insulin tolerance test – 2 hour ( to check for CFRD-Cystic Fibrosis Related Diabetes)
4. Continue on her oral Bactrim for an extra 2 weeks, finish the 2 weeks of inhaled antibiotic, Gentamicin.

G. I. has ordered:

1. Vitamin A Assay
2. Vitamin E Assay
3. Calcifediol (250H Vitamin D-3) Assay
4. CBC, PLT and Diff
5. C-Reactive Protein
6. Hepatic function Panel>1 yr.
7. Prealbumin Assay
8. Tissue Transglutaminase IGA/IGG
9. IGA Immunoglobulin Assay
10. Fecal Fat, Quantitive 48 hour

The big thing was to try to get all this all scheduled at the same time. Thank God, our research specialist, Rena, was there. She is awesome! She was at one of Zoe’s blood draws and saw first hand how hard of a stick she is, and that she turned as white as a sheet, almost fainted.
She pulled some strings, got Zoe her glucose test for 8:30 Tuesday (they are backed up until the end of May)! They also will do an I.V. so, instead of them having to find a vein 3 times for the glucose test, then again for all the other blood work, they will just access the I.V. Thank you Rena, only ONE stick. Also, they will be able to insert a NG tube to give her the glucose syrup if she won’t drink it herself. We knew this might be an issue considering she won’t drink anything except water. I am going to try to use syringes, telling her it is a medicine that she HAS to take, that normally works…..but it is 4 ounces…a lot to put through a syringe.

Also, starting Thursday I have to do a detail food log, exactly how much she eats (measuring everything), what I added to it (butter, cheese, etc…) the exact amount of fat and calories she ate. We do this for 5 days. On the last 2 days (Sunday and Monday) we also have to collect ALL her stools in these containers they gave me and freeze them. I turn them all in ( to a different lab) on Tuesday when we go in for the glucose testing and blood work. Mind you, all these tests on Tuesday, are on her 5 year birthday. Ugghh. Doesn’t CF suck? I think we might tell her birthday is another day. She is still young enough where we can get away with that.

I really appreciate that her doctors are checking all possible causes of no weight gain/weight loss before just immediately putting in a g-tube. If all these tests come out fine, then they said we talk about g-tube.

I have a lot to blog about…..my parents party….going to Mels…..but I am kind of down tonight after todays Dr. appts…..so, thought I would just update on our little Zoe tonight. Please continue to hold her in prayer……thank you from the bottom of our hearts….

Love,
Jada & Scott

The past week

The Jenkins Family March 21st, 2009

My house is back to its normal status. The kids are all home. My parents and sister have gone back to Tn. It is different around here…we had 5 weeks with just Scott, Zoe and myself. Then a week with all my kids, my parents, my sister & her 3 kids.

The big secret that I couldn’t blog about, was a surprise party that we have been planning for 3 months! My parents read my blog….soooo…I’ve not been able to write about it at all!!

Everything went perfectly. Noelle and I stayed up very late for 4 nights doing a scrap book for them, it turned out beautifully. We also wrote questions like….what was your favorite car….what was your favorite song as a teen….which one of us kids gave you the most “headaches” growing up….which one of us kids was the most accident prone….what was your favorite house….what was your favorite saying your mom and/or dad said….etc…??? We put them in a bowl, then Saturday night we all gathered around them and asked them the ??, it was awesome! We all had a blast, talking and laughing about the past! I am proud to say that I didn’t make the most “headaches” or “accident” ones!!!!

My parents were completely surprised, they really had NO idea about it. Eight out of ten of us kids (with their families) came! I had 40+ people in my house for 2 days! I LOVED it! My little brother and his very lovely, 7 month pregnant wife, flew in Thursday night from Dallas. It was great having them here with us. Having Noelle here and Patrick was so much fun for me, I love having family around. It was sad to see them all leave.

My mom cried for 20 minutes after the initial “surprise-shock”. She hugged everyone forever. Dad just kept saying, “I can’t look at mom, or I’ll start crying too”. It truly was a gathering that they will never forget, nor will I
.
On another note, our little Zoe is sick. She has an extremely wet, junky cough. She is choking on mucus everytime she coughs. So….for the first time since her sinus surgery (3 months ago), she is on antibiotics. Oral Bactrim and Nebbed Gentamycin. If any of you cf’ers have ever nebbed Gent., you know how HORRIBLE it smells and tastes. Poor Zoe. 2 times a day added on to her other nebs. I feel so bad for her sometimes, having to sit for 2 hours in the morning, then an hour at night. Hopefully this will knock it out quickly.
Then of course, she isn’t eating quite as well, being sick. Her CF and G.I. appts. Are next Tuesday to do her weight check. Just GREAT. She hadn’t gained anything still as of last week before she got sick, so being sick sure isn’t going to help any.
Thank you for keeping her in your thoughts and prayers.

Laundry is calling….take care.
Jada

Kids are home....

Sorry I haven’t updated in a bit…but things are a little wild around here right now.
The ‘missing’ kids returned safely Friday night! Yeah! They had the best time with their grandparents! My sister, Noelle, and her 3 little girls are staying with us all week. We have had a lot of fun! We ran out to the beach yesterday in hopes of sun, so she could get a couple of pics of her and the girls. It got all cloudy & windy on the way. So we stayed just long enough to get the pics and let the girls pick up some seashells.
Today is our 9th wedding anniversary! Nine years sure can go by fast! Happy Anniversary Honey! I love you forever and always!!
Zoe woke up with a 101 fever this morning….so we are watching that. She had a couple of coughing attacks in Wal-Mart yesterday….uggghhh. If her cough increases then I will be calling her clinic.
If anyone listens to the radio program “The Wall Street Journal This Morning”, tomorrow morning, Thursday, Gordon Deal will be airing a program “The Longest Commute”. Guess who will be in it???Yes, my husband! We have NO idea what Gordon is going to say….just hoping he puts some focus on CF, for the awareness. This is a NATIONWIDE program, so the awareness could be awesome!
Take care of you and yours…..
Jada

Scary days....

I haven't posted on this subject...mainly because we were just so scared. Scott was sent home at 9 a.m. Thursday morning...they said his computer was 'flagged' by I.T. They took his badge, keys, computer, and sent him home. We have been trying to keep super busy around the house, doing 'fix-up' things that we never have time to do....meanwhile...wondering what the heck is going on.
We have some very good friends, who the husband works with I.T. people, tell us...no worries...big companies do this all the time. They are looking for people that might be 'selling' company info. Well, needless to say, Scott doesn't do that. So, for 6 days now, we have been wondering, going stir crazy....does Scott have a job...are we going to be jobless, homeless, insuranceless, etc...
We got the call at 4:15 this afternoon.....it's all FINE. Sure. We go through pure HELL for 6 days....wondering...and it's all FINE. He reports back to work in the morning. Big companies = SCARY.
All I have to say is.....THANK YOU GOD!!!!!!!!!!!! Thank you....the people that did know about thiss...for praying for us. We have a job still.
On another note....the kids get back Friday night! Yeah! We miss them! Zoe REALLY misses them. She needs someone else to play with besides mommy and daddy.
She has started coughing/clearing her throat more in the last couple of days. We will just watch for now....see if it progresses.
Better get some sleep....take care of YOU and YOURS....
Love,
Jada

Grilled Cheese Hearts

Soooo...I have become creative...trying to find ways to get Zoe to eat good fattening food! Here is a picture of tonights dinner for her....tomato soup made with 1/2 & 1/2 and real butter, grilled cheese with real butter, 3 slices of Land of Lakes American Cheese, cut into perfect little hearts for her..... She ate both of the hearts and a few sips of soup....she likes to dip her sandwich...just doesn't eat much of it. As you can see by the picture...she still will only drink WATER....uggghhh

We have been doing all sorts of things around here lately. Scott is painting our bedroom. Yeah! It was a nasty, burnt yellow, baby diaper poop color before. YUCK!!! Of course all of us cf'ers can relate to the nasty color! So, now it is like this.....3 walls are a turquoise color...the other wall(behind the headboard) is chocolate brown. Our comforter is the exact turquoise color....I bought a pillow to go on the bed that is the brown swirled with the turquoise. I love the soft blues like this...feels very tropical, soothing to my soul.

The kids are having a GREAT time at my parents. They got 12 inches of snow last night! They are in snow heaven!! They don't even hardly miss me. View from my Dad and Mom's deck!

Zoe is doing well. A few coughs here and there. Nothing to write home about. Her appt. is looming in the distance....about her weight. We will see.

Hope you all have a lovely evening....take care of YOU and YOURS.....

Love,

Jada