I'm an Aunt again!!!

My youngest brother and his lovely wife had their first baby this week! Her name is Stella Nicole Jenkins, weighed 6 lbs. 11 oz. They are on cloud 9! Patrick is the last one of us ( out of 10 kids) to have a baby, so it was pretty exciting! She is beautiful!

By the way....recognize that purple bracelet??? It sais 'Breathe', the other side sais "Cure Cystic Fibrosis'....Patrick and Misty both wear one for Zoe.....I had them made and sell them....if anyone wants any, just let me know!

Zoe had her ENT appt. on Thursday....she had come down with a cold the beginning of the week, but I haven't called clinic because she really isn't coughing. It seems to be all in the nasal passages. Granted, it could progress, but we decided to wait and let her ENT look. She agreed, it is all sinusitis right now. She did give me a script for Bactrim, if she doesn't improve, or develops a cough, we will start it. Her culture from last week grew Staph. We'll take that. At least it wasn't her MRSA. Other than that, we go back to Cf clinic, GI, and ENT all in July.

Have a wonderful weekend.....take care of you and yours....

Jada

Good News Finally!!

YEAH!!!!!!!!!!!!! Zoe gained 2 whole pounds!!!!!!!!!!! In just over 6 weeks!!! Truly a lot of answered prayers!....and a lot of food!!! That puts her BMI at 54 %...they want it to be a minimum of 50 %, so we are good for now!!!

I did discover Haagen Dazs Icecream though! Did you know that the chocolate peanut butter has 23 grams of fat in just 1/2 cup!! OMG! She LOVES it!!

They don't need to see her until July now. We just have to keep stuffing her.....and pray that her culture comes back clean. Hopefully then we can have a few months break...she needs it.

Thank you all for your thoughts and prayers.....
Jada

Great Strides Walk

Princess Zoe


Zoe made a Mommy's Day Craft

Benjamin Alex


Our team shirts

My sis, Sharonda & neice, Chelsey

Caleb & Austin finished First

Sydney, Dad, Zoe-Home Depot project




Ben&Jerrys-CFF ladies, Austin, Alex,Madison



Nicole(Bonefish Grille) & son
Reece (his first fundraiser!!!:)

Mandy, Rielly, MiKaela, David
(Bonefish for Zoe)

The table at Ben and Jerry’s was great! They had a great turn out all day. It is awesome because we got to talk to practically everyone about CF! We made about $250.00! Met several wonderful families that came to the walk that next Saturday.
There was around 200 or so at the walk. They think they will have made around 55-60 thousand! It was a lot of fun. Zoe doesn’t do the walk, she and I stay and talk to people, oh, and she EATS while everyone else is getting exercise! My sister and her daughter came with some of her co-workers, the friends we have at Bonefish Grille came, families with their kids from the Christian School….it was so nice to see people there to walk for our Zoe!
We have started going bowling on Sunday afternoons as a family (on Sundays it is only 99 cents a game). It has been a blast! Even with Zoe just throwing her ball down at the end, she still ended up yesterday with a score of 83! Yes, bumpers are an AMAZING help!
Zoe’s appt. is Friday. I am very interested to hear what all the docs have to say. Also to see if she has finally gained any weight.
Hope everyone is having a lovely spring!
Jada

Fundraising Time of Year!!

I am so excited! Last year I did a table at Ben and Jerrys for free icecream day....they were debating which charity to let do it this year....to be fair and all....well....they are letting me do it AGAIN!!!!!! Yeah! When customers go through the line to get their icecream, they send them all to my table to get their '10% off' key tag for B&J for the year, sooooooo, they have to look at my CFF stuff! Since they got their icecream free, most of them will donate something. Last year we made almost $400.00!
I also was in my favorite local Mexican rest. yesterday, talked to them about selling the pin-ups at the register. They talked about it and said YES!! So, tomorrow I will be dropping off posters I made tonight and the pin-ups. They all just adore Zoe, they even have her card taped to their wall right next to the check out!
As far as Zoe's tests, still waiting. Will let you all know as soon as I know something.
Have a great night!
Jada

Yesterdays results

Yesterday was Zoe’s “Official” 5th Birthday….but she thinks it was last Saturday. We celebrated it early for several reasons….Scott left Monday for Tulsa on business for 2 weeks and yesterday she had the 2 hour blood glucose test w/ an i.v., we didn’t want her to relate another birthday to the hospital. I doubt she remembers her 1st birthday, but, it happened while in hospital for 2 weeks when she was diagnosed.

So, her birthday was great! She had a Princess cake and Princess presents. Today she even received a wonderful present from Kaylee and her terrific grandma(Kayleesgrandma)!!!

We got to the CRC (Clinical Research Center) at Wolfson Childrens Hospital (Zoe’s normal hospital) at 8:30 am…she was NPO since 9 pm the night before. I had put the EMLA cream on 4 areas of her arms. The nurse she had (who is in charge of the CRC) was awesome! She was able to get a vein first try! Zoe still had a lot of anxiety before the needle going in….but when she realized it was over and didn’t hurt…she looked up from crying, smiled and said, “So, do I get stickers now???” We all laughed.

Then the blood drawing started. That was a lot of blood. You can see by the pictures how many tubes there was. They used everyone of those. After they got all the blood they needed for all the labs, they drew the first draw for the glucose testing. It is called a ‘fasting’ draw, fasting being because she was NPO since 9 the night before. The nurse put it in the tester, I looked at her, she said, it’s high. Uggghh.

Now, she had to drink the glucose syrup. That went a lot better than I thought it would….I used an oral syringe, gave it to her like a medicine. She got it all in within 2 minutes! Then we wait for 1 hour to take the next draw. Her brother, Austin, our oldest daughter, Tara, and her boyfriend came to be with us, so that was a nice distraction for Zoe.

Next draw……she said, it’s high. I think I wanted to run in the bathroom and scream, cry, kick, you name it. I had fully expected to go in to the CRC, do this test just as a ‘ruling’ out test. I really did not think she would test high.

Her last draw was borderline. I said, “So, where does this leave us???” She called Zoe’s clinic, who said they will wait on all the other blood work, like the insulin levels, IGA levels and A1C levels. Then all her docs will discuss all the results and decide what/if there is anything that needs to be diagnosed or decided on. The blood work will take 2 weeks. So, the waiting has begun.

Tomorrow morning Zoe and I have a short meet/greet/ speech at a highschool for fundraising for our walk. Hopefully I can do this gracefully without crying.

Well, I need to go read a book to Zoe and cuddle her into bed…..

Good night all….take care of you and yours………

Jada

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