March Clinic and confessions

Olivia met with her new CF team for the second time on February 29th. Our main goal, from our January 25th clinic, was to increase her BMI (which was a measly 11%).
-We rocked the house and brought it up to 53% with the assistance of Periactin and tons of heavy cream. The only side effect we have encountered with the Periactin is it turns Olivia into hell spawn, but other than that we love it.
-Her o2 saturation was 98% last clinic and dropped to 97% and that was after doing breathing exercises to bring it up from 95%.
-Her old clinic used to perform yearly bronchoscopies and she always benefited from them, but her new clinic only performs them when they are needed to eradicate an infection and we are totally comfortable with that since her yearly bronch always came when she had something we couldn't knock out.
-Her new clinic, however, does do yearly CT scans to monitor her lung condition which she had never had before. We were really dreading her having it because she would possibly have to be sedated unless she could keep still for 3-5 minutes. Yeah right. You can imagine our surprise when she hopped right onto the table, laid down, told us she would be good and she actually was! She was a total pro and didn't get freaked out at all.
So we were in great spirits about the day. Her BMI was great, she did great with her CT scan and each member of the team was pleased with her health. When the doctor came in we discussed the dosage of her Periactin to see if we could tweak it and get her slightly less demonic and then she started looking over the images from Livy's CT scan. Her lungs have pockets of air trapped which isn't a big deal and can change from breath to breath. The scan also showed scarring from previous infection and lung disease in her lower left lobe. Obviously, I knew that she would get both of these things eventually, but I thought and hoped that "eventually" would be a long time from now. I know that there are many people that are a lot sicker than Olivia, but it still is painful to have a doctor tell you things that could one day take your child from you. I try to always stay upbeat and focus on and express the positive parts only of Olivia's health. I tend to keep the negative things to myself because I don't want anyone to worry and because, I'll be honest, when something is wrong with Olivia's CF health I feel like I'm failing at being her mom and taking care of her.
We don't really discuss CF in our house too much and how it affects our life. Sure, I can spout out the facts and statistics but I'm not good about REALLY talking about it. I don't like feeling weak or crying in front of people and that's what I tend to do when I talk about CF and it's residence in my child. I know there are amazing drugs in the pipeline that will help so many CF'ers, but in the meantime I hate it and wish it would go away. I hate hearing her cough and wonder if she's getting "CF sick" or just "regular sick". I hate being in public, hearing someone cough and find myself looking to see where the person is in relation to Olivia. I hate looking to see if they covered their face properly or if they coughed into their hands and are now touching something that Olivia might touch. I hate the situation of being with friends who people come near her when they are sick (especially with something respiratory) because they don't know much about her illness or understand it. I hate watching to see how often people are washing their hands. I hate arguing with her to take her enzymes when she eats because I know she's going to feel awful if she doesn't. I hate watching every bite she eats to see how much enzyme she needs and how much Miralax she is going to need instead of her just eating whatever whenever. I'm sick of having alarms on my phone to keep track of her Zithromax (Monday, Wednesday, Friday only) and Periactin (2 weeks on/2 weeks off). I'm sick of all the medications and treatments. I hate being worried about second hand smoke. I hate knowing that by watching all of these things in order to keep her as healthy as I can that I'm not fun or inviting to be around. I hate that despite my best efforts, this horrible disease continues to grow in her. I want her to stay healthy so that when the drugs to get released for her gene mutation, her body is as undamaged as possible. I want to forget that CF exists in her body and just relax and let her run and do what she wants and not worry that by letting her act like a 4 year old she could get sick. I read about CF'ers that were healthy and then get pneumonia or something and die in a few days time. I can't imagine and don't like or want to think about it. My heart aches for those that has happened to and is still happening to. Along with my worry about Olivia, I worry how her illness affects Chris, family, friends. I worry about the health of 60,000 people with CF that I don't even know. I worry about what to tell Olivia when she starts asking the hard questions. I worry about her not having anyone near her that can relate to what it feels like to have this illness. I worry if she's going to be dumped by some asshole boy because he doesn't want to deal with all of this. I worry about her future and not just her physical health.

All that said, I know that I am surrounded by people who would listen if I wanted to talk about it. I know I'm surrounded by people who will help when or however they can. I know Olivia is in good hand with her doctors. I know without a doubt SHE IS A BLESSING TO CHRIS AND ME AND I WOULDN'T CHANGE HER FOR THE WORLD!! She may have CF, but it NOT WHO SHE IS! Lastly, I know that we are all doing the best we can. That's all we can do.

Olivia's 4th Birthday!!

On March 10th, Olivia turned four years old.  FOUR!!!  I can not believe she is 4 already!!!  She was still in my belly just yesterday.  Anyway, she had clinic on February 29th (which will be my next blog post) and her Respiratory Therapist, Mary Lester, asked what we had planned.  We didn't have a party planned because we have had a chance to meet many people so we were just going to visit the aquarium (Olivia's request).  Mary told us that she's friends with a woman who works there and would give her my information.  A few days later, I was contacted by Keisha Legerton who wanted to make Olivia's birthday special.  I didn't get the okay from Mary or Keisha to use their names, but I have to give both of them huge props for making the day great!  Keisha gave us complimentary tickets and I mentioned that we were going to invite our friends (Pedro, Johanie and Jorianys) over after the aquarium to grill out.  She came passes to them as well and that's just where it started.  So here's how Olivia spent her 4th birthday...

She wanted to open her presents from us and family before heading out.  The gift photos turned out blurry, but I had to include this one of her and daddy being silly.

 Our aquarium has an albino alligator named Alabaster that Olivia has been really looking forward to seeing.

 We thought about heading to Beijing for the day, but it was too far.

 Daddy and Olivia

 Mommy and Olivia

 Olivia and I were acting like we were showering.

 Birthday girl (in another Punky Brewster-esque outfit)!!

 A nice passerby took our picture.  It's so nice when people offer to do that.

 Olivia and Jorianys.  Olivia LOVES Jorianys!!!

 There's hair in my mouth!

 Cutie Pie!

 When we got inside, I stopped by the information desk (as instructed by Keisha) and they were like, "OH!!  We've been waiting for you!"  We were a little late for when we planned to arrive because the traffic in Charleston SUCKS!!!  Moving on...Megan came out with a four year old Kestrel to wish Olivia a "Happy Birthday".

 We were then directed to the Great Ocean Tank for a feeding show.

They went through how the divers feed the different sea creatures and kids came down to help demonstrate.  Olivia and Jorianys were the shark and fishy.  When Olivia got down there, the educator and diver wished Olivia a happy birthday.

 

That's sure what it feels like sometimes.

Captain Olivia says, "All hands on deck, ye scurvy sea dogs!"

 Safety first!

 Some of the cutest sharks I've ever seen.

 A Bald Eagle.  Kind of makes you want to sing the "Star Bangled Banner" or say the Pledge of Allegiance.  No??  Oh, it must just be me.

 They brought out a baby alligator to pet...

 ...and a boa constrictor...

 ...and starfish...

 ...and urchin.

 Fun! Fun! Fun!!!

Chris and the girls

 

Mommy, Olivia, Jorianys, Johanie and Pedrito (making his debut April 6th).

 Pedro decided to "man up" and come in where the mean old scary birds are to bring some shrimp to the girls so they could feed the rays.  Sorry Pedro...had to pick on you one more time.

 They told us to stop back by the information desk on our way out.  When we were leaving we stopped by and they gave Olivia a gift bag FULL of stuff!!  They gave her a stuffed bald eagle, a book, a dolphin straw, wind-up orca water toy, sunglasses, hat, t-shirt and travel mug.  We were blown away by the kindness they showed Olivia!  I can not say enough wonderful things about all of the aquarium staff!!

I made some ocean themed cupcakes for her birthday.  I know they aren't the most spectacular looking things, but they were enjoyed!

I spent WAY too much time spooning in the batter that I colored different shades of blue to look like the ocean, but Olivia (and Chris) thought it was awesome so I suppose it was time well spent. 

We ended up having a VERY impromptu birthday party for Olivia and some of Chris's (and now Olivia and my friends) came over with their children and we all had a great time eating, talking and playing.  We were thankful for everyone's help with making the day great.

~We love you~

Happy Birthday, Olivia!

Did you know that an alligator can hold it's breath for 45 minutes?  Or that a sea turtle's heart beats once every nine minutes and they hold their breath for 4-5 hours? 

Playhouse Princess

I don't know if you have heard of Lalaloopsy, but it's all the rage in the Neal household.  Olivia loves them.  I think the button eyes remind her of Coraline, which is still one of her favorite movies.  Anyway, she got the playhouse and on a VERY windy day she played and played.

 I don't know if the baby is about to get fed, changed or operated on.

 I see the patient is doing well and is able to tolerate solid food.

 Olivia is swinging her other baby in the swing.  I think she was running a daycare or something because she kept taking role.

 It's Chucky time!  So creepy.  I kept waiting for the head to keep turning.  

Each Lalaloopsy doll comes with a "pet" (along with a name, birthday and what fabric they were created from).  I don't think the pets have names.  We are creative.  This is.....zebra.  

 She's quite the little caretaker.

She's taking measurements for drapes.  She does love to accessorize. 

  She's probably bossing the doll around.  "You will eat your dead grass."

 It's Lalaloopsy.  It's Lalaloopsy.

 Gag me. Like, ohmyod. I would not be caught dead wearing that. (She says with a disinterested valley girl voice.)

 This is Splatter Splash Dot.  Hey, I don't name 'em.

Making up another dead grass and weed flower salad. 

 ooooooh.  Mommy is getting artsy fartsy.

 There's my little teenager again.  "Whatever, mom."