Day +140-Mom Flakes Out

We didn't have much on the agenda today, actually the only thing on our schedule was to pick up Olivia's oral IVIG from clinic in the morning. Olivia actually woke up before Peter so I got to spend a few minutes with her this morning. We started our morning routine, I made breakfast and started Olivia's morning breathing treatment. Everyone finished breakfast and we loaded up into the car and went to get Oivia's oral IVIG. We continued on with our day...ran some errands, vacuumed out the car, etc. After bath time I put Peter down for the night and I went to get Olivia's night time breathing treatment ready. I usually get her evening meds ready and then we cuddle on the couch when she does her breathing treatment. Olivia and I both really enjoy this special cuddle time. I got Olivia all set up and then went to get her evening meds when I realized that I didn't have any dirty syringes from the morning meds. As I pulled out her medications I thought it felt like it had been a while since I had given her meds. I paused and thought for a second.....I DIDN'T GIVE OLIVIA HER MORNING MEDS. I completely forgot to give her any of them! No blood pressure med, none of the anti-rejection meds, no magnesium, no vitamins, none of the antibiotics, nothing! YIKES!!!!! Luckily it was just 7:30pm so I knew someone would still be in the day hospital. I spoke to one of the nurse practitioners who knows Olivia well, he reassured me that it was not the end of the world. We went through Olivia's med list. Olivia's med list is pretty complicated, we're not just talking amoxicillin twice a day for 10 days. She gets several meds in the AM only and others in the PM only, some every other day, some she gets different amounts of on different days. It's complicated. I have her 3 page med list taped to the cabinets in the kitchen for easy reference with my hand scribbled notes all over it. The nurse practitioner walked me through which meds to give Olivia and what the updated dosages should be. Hopefully I haven't caused any major damage! The nurse practitioner assured me that this happens but I still feel terrible! Olivia did poop more today than she normally does so I'm really hoping that doesn't keep us from getting the okay to leave Durham on Saturday. Unfortunately I'll have to stay up late to give Olivia a second dose of one of her meds at midnight. At least I have the Real Housewives of Orange County to keep me company :)

Sassy, Day +139

Olivia insisted on picking out her clothes today. The washing machine has been broken in our apartment for over a week so we're running very low on clean clothes. She really didn't have any clean clothes that matched anyway so I let her choose her outfit. This is what she came up with..... She's clearly very proud of herself. Her leggings are about 2 sizes too small and the skirt is 2 sizes too big. But it's clean, and she did pick it all by herself. The headband was a gift from the salon where I used to take Olivia to get her haircut in Washington. I really wish I could remember the brand because Olivia got so many compliments on it! I took Olivia there last June for her last haircut I don't remember how but somehow we got onto the subject of chemotherapy and how I was apprehensive about Olivia's hair falling out and they let Olivia pick out a headband on our way out. Ironically I haven't been nearly as hung up on Olivia being bald as I thought it would be. Without hair I notice how Olivia's eyes light up her entire face. I just put a hat on to make sure she doesn't get cold and call it a day. She recently got some hair accessories though and lately she's all about wearing the headbands.

I'm sure you can imagine that Olivia got quite the reaction from the nurses and doctors in clinic today. One of the nurses told Olivia she looked sassy and Olivia was very pleased to learn that new word. She hasn't stopped saying it all day. When someone came into our room and told her she looked sassy she would put her hands on her hips and then say "no, stop" and then look up with this big grin just waiting for them to say it again. It was hilarious. Dr. Paul told Olivia she looked like one of those Caribbean fruit cocktails with rum. Of course we can't leave Peter out so he decided that Peter looks like a single malt scotch. I think he was starting to say I was vodka but thankfully we moved onto another topic.


In addition to comparing by children to alcoholic beverages, Dr. Paul did some good news and we had a good clinic visit. Olivia's white blood count is stabilizing and her labs look good. It's clear that this newest combination of antibiotics is working well and she'll likely be on one of them for 3 weeks. Her steroids are being decreased again and her blood pressure medicine is being decreased. She will continue the oral IVIG until Friday because we're making these other changes but after Friday we'll be able to discontinue that as well. On Friday we'll have to go into clinic for a quick blood pressure check and a check of her white blood count and then if all is well we will be able to leave Durham. Mike will be able to come up to Durham on Friday night and help pack up the apartment and then we'll head to Fayettville on Saturday morning. While we're really excited to leave Durham we'll not saying goodbye to Duke just yet. Olivia will continue to have weekly appointments for a while but I'd much rather live together as a family and commute to Duke once a week than live here by myself with the kids. So keep your fingers crossed and pray that we'll be able to leave on Saturday.

I don't want to leave Peter out and according to Olivia he looked sassy today as well. I love babylegs (if you're not familiar check them out here: http://www.babylegs.com/. Olivia didn't wear them often when she was younger but Peter wears them often. Peter often takes his own pants off but he hasn't figured out how to take the babylegs off. I've also discovered that they are fantastic for potty training! Olivia can get to the potty in time when she doesn't have to worry about pants and I feel better knowing she's not running around naked from the waist down. Olivia decided to help Peter jazz up his outfit today by pulling the babylegs down around his ankles and Peter ended up looking pretty sassy himself.






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Reflecting

I've spent a lot of time reflecting today. I'm apprehensive about tomorrow's clinic visit. I'm hoping that they say we can go back to Fayettville but I don't think that's likely. I think that Olivia is starting to get a little depressed. She's not really interested in anything anymore. She keeps talking about toys that are at our house that we don't have in the apartment here. I keep finding her looking out the big sliding glass door that goes out on to the patio. She's asks to go "bye bye" and gets excited to go in the car but she's always sad to come back to the apartment. She keeps asking to talk to other people, she's asking for "daddy", "amy", her cousins "braden" and "hunter" and some of her friends, "wesley" "aiden" and "rachel". It's nice to hear her use people's names but it makes me so sad that I can't deliver them. We've tried calling people but it's just not the same. She's happy to hear their voices but doesn't understand how to talk to them on the phone. I've tried to be so creative over the last couple of days, trying to think of things that we can do that we can do that she'd enjoy. The school teacher came by today for school and Olivia really wasn't interested in participating in any of the activities. She seems to be the happiest when we're at clinic. At least when we're there she gets to see other people. It was actually the teacher's suggestion that Olivia might be a little depressed and I think she's right. Hopefully our days here in Durham are numbered and we'll be able to get back to Fayettville, and being a family, again soon!

In other news Olivia's appetite is continuing to improve. She enjoyed her pizza today. She's also continuing to do well with the potty training. I'd say she's about 80% potty trained. She is doing great at pooping in the potty but she averages about one pee pee accident a day. I really don't have any expectations about her potty training. I'm sure we'll get there eventually but I know it'll take some extra time. When she's successful I know she's proud of herself and for now that's all that matters.

Here are a few pictures from our day.....

PIZZA



Outside, please

Watch your language!

Apparently I have a problem, I need to watch my language, especially around little ears. I don't curse often but I do let the "s-word" escape occasionally. When Olivia was little I remember being very careful about it but then with her speech delay I kind of forgot about being so careful. Not only has Olivia picked up that choice 4 letter word she has also learned to use it appropriately. This morning Olivia woke up and we made our way to the bathroom so she could go potty. As I helped her get situated on the potty I pulled down her night time pull-up and noticed that she had a little accident and had pooped a little in her pull-up. I was in "mommy mode" so I just said something along the lines of "whoopsies, acident." Olivia on the other hand calmly looks down at her pull-up and said "S**T". I know it's not funny but it was everything I could do not to laugh. We should all have our mouths washed out with soap. I think I'm sensing a New Year's Resolution here....