Tuesday, December 10, 2013

What a year!

As 2013 is starting to wind down, I realize that it's been over a year since I wrote my last post. So many things have happened this year -- one of them requires a separate post.

I've traveled quite a bit for school since last December with 3 separate trips to FL (fingerprinting/background check, data collection, conference presentation/showcase), a trip to Indiana University to present my research, a trip to Niagara Falls (Canadian side) to present my research, and a trip to Anaheim to showcase my research. Fortunately, on the California trip, Chris and Vivian came along with me and we made a family vacation out of it (our only one for the year) by spending a few days in San Diego and then 4 days at Disneyland, including Halloween, with Nana and Popi.

In addition, I also made two separate trips to NC - one for an interview, another one to move some things down and get some work logistics taken care of. Yes, you read that correctly. I was offered a job in NC in June and Vivian and I moved back in mid-July (our move was delayed by two weeks, but I'll cover that later). Chris helped move us into a 2-bedroom apartment and then flew back to PA. The move was short-lived though because 6 weeks after I started, I was laid off. So, Chris moved us back up to PA over Labor Day weekend. What an expensive adventure after signing a year lease, enrolling Vivian in school, and moving back and forth without any relocation help from the company. Lesson learned though! I will never work for Cisco again. You think I would have learned my lesson the first time in 2008 when I was pregnant!

Chris and I have enjoyed Broadway shows and baseball games again! Our Pirates did amazingly well this year!! We also saw Idina Menzel, Harry Connick, Jr., Steve Martin, and Michael Buble. Chris saw Bon Jovi while I was in FL. I really love living in a big city!

Vivian is doing very well. She started kindergarten (twice - once in NC and then the next week in PA) a year early and is just thriving in school. She's been reading for over a year now and really enjoying reading, science (especially learning about space), and art. She loves writing her own stories and drawing pictures. I can't believe she'll be 5 years old tomorrow! Before we moved, she was taking piano lessons, gymnastics, and ice skating lessons. I also pulled her out of school for the summer, with the intent on homeschooling her (and saving some money) until kindergarten started..but that really only lasted for a few weeks before she got sick (and then we moved).

We were originally going to move over 4th of July weekend, but Vivian ended up getting sick. A few days before 4th of July, she complained that her neck hurt and was walking around with a tilted head. A small reddish bump formed and it continued to get larger. Two trips to the ped's office in two days and several rounds of antibiotics weren't doing anything to decrease the bump. The ped told us on Tuesday that he would get us into the ENT on Wednesday (we were leaving Friday and Thursday was the 4th of July). As we were picking up our rental truck, the ped's office called and said that Vivian had an ENT appointment in 45 minutes. So, we drove home, dropped off the rental truck and headed straight to the ENT. The ENT examined her and told us to go directly to the emergency department of Children's Hospital of Pittsburgh for a CT Scan and that they might have to admit her. So, off we trekked to the hospital.

The hospital experience was really surreal at first. Several teams of doctors came into the ED to examine her and ask us questions. Had we been to a petting zoo? Had we been around someone who recently came back from a foreign country? Had we been exposed to MRSA? Vivian was an absolute trooper! The difference between a regular ED and a children's hospital are night and day. There are life specialists who brings toys and books for the kids while they're waiting for exams or tests. Vivian got to take her stuffed Kitty in with her to have her CT Scan done. She was strapped down and bundled up in a blanket and got to watch Dora. A short time later, she was admitted to the hospital with the diagnosis of an infection in her lymph nodes -- not just one, but a bundle of them in her neck -- and she might be in for several days in case they need to operate.

We spent 3 days in the hospital. Vivian actually enjoyed the experience, despite being poked and prodded all the time. She was able to go to the playrooms, the library, walk around the cafeteria and the hallways, and watch a lot of TV. I met several families who would be spending many more days in the hospital. Shit becomes real when you see kids with their IV poles and feeding tubes in the playroom. It's a reminder to all of us that sometimes kids don't get to go home after a few days, including most of the children in our unit (infectious diseases). I'm so grateful to the doctors and nursing staff - really anyone who works in an environment with sick kids. They are so patient with the children and take time to explain what is going on. If only this could happen in the adult healthcare system!

When we were discharged, we decided to postpone the move to NC for a few weeks until after Vivian's follow-up appointment. She wasn't really out of the woods yet and was still on a heavy cocktail of antibiotics. Fortunately, she was given a clean bill of health.

Vivian wasn't the only one with a health issue. I had an abnormal mammogram last year and the 6-month follow-up showed that the tumor was getting larger. I had a biopsy and fortunately, it turned out to be benign. However, I picked up a piece of hardware in the process. I now have a titanium clip to mark the tumor so it can be seen in follow-up mammograms.

The biggest change for us is Vivian's new diagnosis. In September, we went to a local farm for their fall festival. Vivian enjoyed the hay ride and feeding the animals fresh corn. We ate lunch and bought a box of gluten-free peanut brittle to take with us to our next stop (the covered bridge festival). We gave Vivian a little piece of the brittle as soon as we left the farm. She immediately started chugging down her water bottle saying her mouth was burning. Then she said her tummy hurt and her mouth was still burning. Not too long after that (and as soon as we pulled into the parking lot for the festival), she said she was going to throw up and projectiled several times all over the car and herself. I got her cleaned up and changed and Chris cleaned up the car. I tried using my phone, but there was no cell coverage.

Nothing is worse than being in the middle of nowhere with no cell coverage knowing that your child is having an anaphylactic reaction to peanuts! And...she didn't actually swallow the small chunk of brittle -- she spit it out.

We immediately got in the car and just started driving home to the children's urgent care near our house. As soon as I got cell coverage I called and told them we were coming in. We arrived and they took us back and checked her out. They told us to keep an eye on her and to immediately make an appointment with an allergist and get an EpiPen. I called the allergist office the next day and the "soonest" appointment was 3 weeks out. We were told to avoid ALL peanuts and treenuts until then.

Well, this mommy went on a rampage -- cleaning out the pantry and tossing out any foods that were manufactured in a facility with peanuts. It was going to be back to basics (fruits, veggies, meats) until we could see the allergist. I think anyone who doesn't deal with an allergy would be shocked at the amount of products that are manufactured in a facility with nuts (ketchup, soy sauce, lunch meats, cheeses, flours, etc.).

Three weeks later, we received Vivian's diagnosis. She has a peanut allergy! Not much has changed for her. She still gets her lunch packed for school (thankfully it's a peanut-free school) and she takes her food with her when she goes to birthday parties or on field trips or to the science center. We're extra cautious now about going out to places. I have Clorox wipes in my purse and everything gets wiped down (tables, chairs, etc.) before Vivian touches them. Flying on an airplane made me very nervous (remember, people get peanuts as snacks), but we wiped down everything (window, back of the seat, tray table). Going to Disney made me nervous because families pack PB&J to eat while their kiddos are standing in line and those sticky peanut hands are all over the place. Again, I wiped down the lap bars, steering wheels, etc. prior to Vivian touching them. We even survived Disneyland on Halloween, which is a food allergy mom's worst day!

I've joined several support groups to figure out how to deal with the public school system next year. Peanut allergies are covered under the ADA, but schools have trouble figuring out how to deal with kids with allergies and some aren't as accommodating as they should be. I don't want Vivian to be bullied or isolated because she has to sit by herself at a table. I don't want her to be excluded from classroom activities because a classroom project contains a peanut. She never asked for this and it's something she could die from.

I've learned so much from her having a peanut allergy. I've been able to visit her classroom and read some age-appropriate books to the kids about allergies. As those children grow up, I hope they remember how Vivian was such a good friend and maybe they'll choose to become a friend to another child with a food allergy. Bullying kids with food allergies is a very serious issue. I've read stories of kids who intentionally put peanuts in a child's water or on his lunch. It just breaks my heart. I can't even believe where that type of behavior comes from. WTF kind of a parent thinks that's okay? Shit like that just pisses me off!

So, it's been a very interesting year to say the least! My soon-to-be-5-year-old is certainly growing up and becoming a bigger kid!

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