Friday, January 11, 2013

Catching Up

So the last two years in a nutshell:

 Mackey is almost two and is totally awesome; crazy, and defiant, and full of piss and vinegar. On days when he's throwing temper tantrums and saying nothing but "No, No, No", I may not think he's exactly awesome but to hang with this family you have to be tough and not take anyone's shit. I think he's ready for the challenge.

I am so glad we made the choice we did. Seamus is such a good big brother and the love they share is so special. Mackey absolutely adores his big brother, Bubba, and tries to emulate him in every way. He loves to sneak into the medicine drawer and grab empty syringes and "take his medicine" and we've caught him on a few occasions puffing on dirty nebulizer cups. He is completely obsessed with Dora the Explorer and does a mean Dora dance. Drawing is his other passion, much like his brother.

Mackey spent the first year at home being taken care of by Ga, my mom, who lives with us. After we caught him standing inside the dishwasher a few times and doing laps around the house, we realized he was too much for her to handle. He now goes to daycare and is doing great. His caregivers speak Spanish to him most of the time and he's picked up a lot. When he first started becoming vocal, we thought he was speaking lots of gibberish but then we realized he was speaking Spanish!

Seamus is doing well at his new school. He attends a performing arts school and has drama, art, music, or dance every day. Last year, he skipped a grade so he's now in the second grade. The only downsize is the large class size but that's the same in any public school. The nurse there is great and treats him like her own.

His health has been a concern. He has been hospitalized quite a few times in the last two years (now up to 33 admissions.) Some were for lung exacerbations but most were for GI or liver issues. He was diagnosed with CF liver disease in December 2011 and it has progressed much faster than anyone expected. His liver and spleen have become very enlarged and are in danger of rupturing if he accidentally falls or gets hit. He is not supposed to do any contact sports but he is still allowed to take karate for now. He loves it and is up to a yellow belt but he won't be able to continue much further because he can't spar.

He has cirrhosis and portal hypertension which means his liver has a lot of scar tissue that doesn't allow the blood to flow through. Instead the blood flows back into the stomach and esophagus and the pressure builds up so the blood vessels can burst at any time. He has had some bleeding so they went in and did a banding procedure to cut off the affected blood vessels. Normally, after a few weeks the band sloughs off and heals but in his case it didn't heal and instead formed an ulcer. One night, he woke up vomiting about two cups of blood from the ulcer and had to be rushed to the hospital. It eventually healed but the concern is the next time he needs to be banded, which is definitely a "when" not an "if", it could happen again.

He's starting to question things and some stuff does seem to bother him, but overall he still has a positive outlook. He is starting to have some trouble concentrating in school. We don't know if that's because the work is getting harder, if it's related to the liver disease, or if he's having sleep issues which are common to CF. He is going in for a sleep study soon.

Tonight, bedtime was a circus and James said something about how we aren't a "normal" family. Seamus asked "Is that because of my CF?" That's the first time he ever said anything like that. We told him of course that had nothing to do with it. There's really no such thing as "normal" and if there was, what fun would that be?

Thursday, January 10, 2013

Still Here

It's been two years but I'm still here. Here's some photos from our trip to Florida last Spring.

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