Friday, February 27, 2009

A Non-Olivia video that is too funny!!


AFV: a VERY Talkative Baby 12 Months Old! - Click here for another funny movie.

I promise I will post some videos of Olivia this weekend! My friend saw this and it had me cracking up so I had to share it! Look how she really thinks she is talking to them like they have a clue what she is saying! I love it!

I don't know if you pay attention to my Twitter...

I had to call Olivia's Clinic/Pulmonologist because Olivia has a bad cough. She coughs everyday so I don't think much about a cough here and there, but yesterday morning she started coughing more than normal. By the time we picked her up from daycare it sounded really "productive" for lack of a better word and it seemed like it was hurting her. I had to do one additional Xopenex treatment right before I went to bed and once in the middle of the night. The doctor said that if her cough persists until Monday, we are to call them and they will either phone in a prescription or have her come in. She has Clinic on Wednesday, so she will get checked out next week regardless.

Monday, February 23, 2009

I have a question for you guys.

I have gotten two comments about Olivia's bronchoscopy that has me wondering a couple of things of CF'ers and parents of CF'ers.

1. What age did you/your child start getting bronchoscopies?

2. How often do you get them done?

Olivia had her first bronch done in October when she was 7 1/2 months old. Her doctors wanted to do it because she had been fighting off a respiratory infection for two months. The mucous that they cleaned out of her lungs didn't grow anything abnormal, but they were surprised by the amount of mucous because her lungs sounded so clear. They told us to schedule her next one during the summer so that when she starts school (in about 4 years) her YEARLY BRONCH won't interfere.

Olivia's List

Christy @ Color Me Healthy encouraged everyone to do a quick meet and greet since our "CF family" is growing! I'm feeling a little talkative so this might be a little wordy.
  1. I had a textbook pregnancy while carrying Olivia. I gained a good amount of weight, but the doctors weren't concerned. I declined getting tested for CF because no one on either side of the family had it and Chris and I honestly knew nothing about it. I'm still okay with my decision to not get tested because it would have caused me to be stressed out for the duration of pregnancy since we had no clue what to expect.
  2. Olivia was born on March 10, 2008 at 5:28 pm via cesarean. I was induced, but never got past 1 cm dilation. She was 9 lbs 3oz and 21 inches long.
  3. Olivia was moved to the NICU on March 11 for meconium ileus.
  4. About 3 days in, they told us that she most likely had Hirschsprung's Disease or Cystic Fibrosis (for those who aren't already experts). They felt like it was probably Hirschsprung's and we just hoped and prayed that it wasn't.
  5. After she passed the meconium her weight was 7lbs 14 oz.
  6. She was sent home with us on March 23 - Easter Sunday.
  7. We struggled with feedings and weight for the first 2-3 weeks. I was breastfeeding her and her hunger was never satisfied. She would feed 17 times a day (no joke) sometimes for an hour and a half (so raw!!).
  8. She had a prolapsed rectum for the first month whenever she would have a bowel movement. It hasn't shown it's ugly "face" in a while.
  9. She was deemed as "Failure to Thrive" and they did her sweat test on April 9. On April 11, her pediatrician called us with the news that Olivia had CF (delta F508 and 3859 delta C). They immediately put her Pancrecarb and she finally got full!!
  10. She has monthly Clinic appointments and is currently getting monthly RSV shots.
  11. She was hospitalized in October for 6 days. She had an upper respiratory infection that wouldn't go away.
  12. She had her first bronchoscopy on October 28 and then had her first PICC line placed on October 29. She was such a trooper through it all. Her next bronch will be done over the summer.
  13. She got Salmonella poisoning over Christmas.
  14. In the past year she has been on the following antibiotics: Cipro (once), Bactrim (three times), Augmentin (once) and Rocephin (via PICC line).
  15. Her current meds are listed on the sidebar (like always).
  16. She will be celebrating her First Birthday soon and I'm planning a big hoopla for her!

I hope you all had a great weekend and a great week ahead of you!!

Saturday, February 21, 2009

Two videos from the Aquarium.

Olivia is watching the penguins...and I look a little mental.  
I'm just feeding off her excitement.
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Olivia is checking out the fishies!!
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I am now going to collapse into my comfortable bed.  

I hope you guys are having a great weekend!

Our great day at the Tennessee Aquarium

Here is Olivia preparing for complete sensory overload.
We are outside the StingRay Exhibit.  You can touch them, but we figured it would be best not to on this trip.  
She got enough enjoyment watching them swim.
Here is the hubby, Chris, looking dapper.

The happy family...

Olivia will always take time for a snuggle with daddy.

Olivia LOVED the Penguin exhibit. 

Can you see the total excitement in her eyes?  It was her favorite part!

Chris is protecting Olivia in the Shark Tank.  Can you see Jaws over his shoulder?
Mommy being silly.  

Olivia is enjoying meal break...

Which she passed out immediately after.

After a good power nap, she checked out the sturgeon, trout, giant catfish, etc...
Bye-Bye Tennessee Aquarium.  We had a great time!!!

One Tired Tooters!

I took these pictures last night.  I guess Olivia knew we had a big day planned for her today and wanted to rest up.  She was completely asleep by 8:15 pm!!





I don't think it's possible to love this little girl more than I do!!

Thursday, February 19, 2009

Can you say eww!

Her doctor said it was probably Hand/Fecal Contamination. He spoke with the Infectious Disease doctor at the hospital who said she probably touched somewhere that is normally covered by a diaper and then put her hand in her mouth. Even if she didn't get poo on her hand, she could get the E. Coli germs. So it's apparently pretty common...and nasty.

I guess I'm done freaking out.

One of the nurses called me back and told me they would most likely be putting her back on Prevacid. She might be refluxing, so that's an easy fix! SHe is going to make sure the doctor calls me back today in any case.

Any info about E. Coli?

I called Clinic to find out if Olivia's sputum sample (taken on 2/4) had grown any pseudomonas and it did not. They said the reason that they hadn't called was the one of her doctors has Olivia's chart on his desk - not something I wanted to hear. She didn't grow any pseudomonas, but it's the second time now that she has grown E. Coli. He will be calling before the end of the week so I guess it's nothing urgent or serious. I am still a little unnerved because everything I've looked at on the "evil internet" has said that E. Coli can cause pneumonia and that's all I'm finding. Olivia has been on Augmentin since February 11, so I'm hoping that would maybe kill off the E. Coli.

Does anyone have any info about what this might mean? What could E. Coli cause/lead to? Do I need to be worried?

I just want the doctor to call me and fill me in.

Wednesday, February 18, 2009

Any bands looking for a new drummer?

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A shout out to my peeps

Olivia wants to say "hello" to you!

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*Sorry for my awful appearance - it has been a long day!

Olivia eating...again.

Yet another video of Olivia eating.  

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Fun with her Laugh and Learn Home

She was being so funny with her Laugh and Learn Home, but I knew that if I went and got the camera I would miss it. My cell phone was there so I grabbed it, which explains the quality.

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**Some of these videos are put up for "scrapbooking" purposes for Olivia and also so that our families can see what she's up to. Non-family members probably don't find all the videos that entertaining.

Monday, February 16, 2009

Valentine's Day Video

Olivia in action on her first Valentine's Day. I don't know why she laughs every time she looks at the picture of Chris and me or what her obsession is with the "Bat Phone".

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Friday, February 13, 2009

Totally Awesome!!

I sometimes surf the CafePress webpage to read funny shirts. Well, I was there a minute ago and they have a whole section of shirts, license plate holders, bibs, etc. all about Cystic Fibrosis!! I saw a couple of things that I want!! Check out the link!!

Happy Valentine's Day (a smidge early)

I know today is Friday the 13th (ooooh spooky), but I wanted to wish everyone an early Happy Valentine's Day!!


Thursday, February 12, 2009

1st Birthday coming up!

We have decided that we will be celebrating Olivia's First Birthday on Saturday March 7. Her actual birthday is March 10 (and I fully plan on being a big, weepy mess!) I ordered the decorations for her party from Celebrate Express. This is the plate I ordered (and cups, napkins, invitations, etc.). It's by Bunnies by the Bay (the company that make her favorite stuffed animals - BunBun, BonBon and LillyMae). I have a co-worker who's wife does a FANTASTIC job making and decorating cakes so she is coming up with something great based on the decorations! I can't wait to see it and Olivia when she gets to dig in!



Wednesday, February 11, 2009

Poor Tooters-

Olivia had to go to the doctor this morning because she got pink-eye. When I picked her up yesterday from daycare her right eye had a little yellow goo in the corner. This morning when I went to wake her up, it was all crusted shut - so off to the doctor we went. She also ended up having a sinus infection/mild upper respiratory infection so I'm happy actually happy caught the pink-eye! She was prescribed eyedrops and put on Augmentin (flavored for free by Walgreens) for the respiratory infection.

Tuesday, February 10, 2009

CPT and TOBI

Here is Olivia getting her CPT (while totally passed out). 

Here's Tooters getting her TOBI treatment (still passed out - which makes it much easier!!)

Hanging before daycare...




Daddy Time!

Olivia loves spending time with Daddy!!

Laughter and Smiles

I was talking to my mom on the phone on Sunday and Olivia grabbed the phone (which she always does). She loves to "talk" to whoever is on the phone. She was laughing which in turn had mom and I laughing.

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This is an oldie, but GREATIE!! This one the first time I captured Olivia's smile on film (April 2008). It always makes me smile!

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Sunday, February 8, 2009

Saturday Night Fun

We went to our friend's, Shawn and Janis,  house last night for some fun and delicious homemade pizza.  Olivia and her friend, Emily, posed for some very cute pictures for us.  Look they have matching jammies!!!








Friday, February 6, 2009

Paper Shredder

This is us allowing Olivia to destroy the paper liner waiting for them to give her Synagis shot.  She was very bored and this was keeping her entertained.

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Thursday, February 5, 2009

One last thing from Clinic

Last month, Olivia's O2 saturation was 96%.  Chris and I have been very good about her breathing treatments this past month and daycare is helping with them as well.  Well, this month Olivia's O2 saturation 99%!!  I know that it can vary a lot in one day, but last month they left it on a while to even get the 96%, so I'm ecstatic!!

The Graduate

This was taken on Monday (after the waking up from the "Super Sleeper" video).  It was her first time eating Gerber Graduates turkey sticks.  She really seems to enjoy them.


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Super Sleeper

All I can say is that she sleeps just like her daddy.
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CF Clinic - February

Olivia had her monthly Clinic and Synagis shot yesterday. Everyone always stops in to see her when she's there and loves on her for a little. Yesterday, they all came in commenting on how they couldn't believe that she's almost a year old - I can't either! Anyway, back to the results. The said her lungs sounded good. There was no change to her medications. They told us to discuss planning her next bronch to be done during the summer that way when she starts school her yearly bronch appointment will not interfere. She is on track pyshically (furniture walking, speed-crawling, sippy cup, "talking", etc.). Lastly we met with her dietictian which is usually the longest part of her appointment because we are always having problems with her weight. She says we can start giving Olivia more table foods and using some spices/seasonings to make her more interested in her food. She is starting to get very resistant to vegetables and so we are going to try "overcooked" vegetables (carrots, potatoes, green beans, etc.). She still has no teeth, so we have to make sure the consistency is good. She loves to self-feed with the Graduates Puffs and I just started giving her the turkey meat sticks (cut into small pieces), but now I have ideas for vegetables! At her December Clinic, they had switched her formula from Alimentum to Nutren Junior, but I couldn't get the prescription filled anywhere (since she doesn't have a GI tube). I looked into Pediasure and saw that it was the same basic nutritional info as the Nutren Junior, so I decided to switch her to that. Her height was 29 inches (70th percentile) and her weight was 19 lbs 15 oz. (50th percentile) which got her BMI to 40%!!! They were very happy with her progress and told us to keep up the good work! Very good Clinic for Olivia!!!! I have some cute pictures and videos to post when I get home!

Did you guys have problems with your child(ren) eating vegetables (and sometimes fruit)? What did you guys do for vegetables/fruits when your kids started with table food? I think it's a texture/independence thing.

Tuesday, February 3, 2009

Attack of the Snot Orb!!

Secret Passageway

Olivia has found a secret passageway to crawl through in our bedroom.  It's this little space between the love seat and wall. 
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