Tuesday, January 08, 2008

Happy New Year!

Yes, I know we're a week in. Sorry, y'all. Here's a quick update to catch us all up.

Aerin's incision is 99% closed now. The last scab fell off last week and it looks fantastic. The outcome is really better than I ever imagined it could be. It hasn't affected Aerin as much as it has Andrew and me. She never let the hemangioma slow her down or get in her way, so she's just going about her business as usual. For me, it's a vast improvement in my quality of life. I don't have to make sure I have my tumor kit (Neosporin, Mepitel pads, gauze, tape) every time I leave the house. I can pull clothes over Aerin's head neck-first, rather than pulling the sleeve over the hemangioma first. Aerin can wear long sleeves! And footie pajamas! The footie pajamas are a huge milestone for me. I couldn't put her in them when she was an infant because the zippers wouldn't accomodate the apnea monitor cords. By the time she outgrew the monitor, the hemangioma was too big. I am so in love with footie pajamas. Not only are they adorable, but they are necessary for us because Aerin will not keep socks on her feet. It doesn't matter how cold the floor is, she just likes to be barefoot. Our entire house is hardwood, so I've got to keep her feet covered. She doesn't seem to mind the footies at all and her feet are nice and warm.

Aerin's physical issues are mostly resolved. I say mostly because a micropreemie as small as Aerin was will always have some medical issues. Although she is no longer severely immunocompromised, she will probably always be more susceptible to germs and common transmissible illnesses than a term baby. The BPD (Bronchopulmonary Dysplasia, aka lung scarring) will continue to subside as she gets older and will probably resolve itself completely by the time she's four.

Aerin does still have mouth issues, but they could be much worse. We saw our dentist, Dr. Atkins, in December for a check-up. Aerin's teeth are perfect, which is astonishing. Tooth brushing is a major issue for us and it's one that I purposely avoided until recently. It's almost impossible to safely restrain a child with Aerin's hemangioma for involuntary tooth brushing. It wasn't something I ever felt comfortable doing. Despite this, Aerin has no cavities and didn't even need a cleaning. Dr. Atkins gave her a fluoride treatment and that was that. The reason Aerin's teeth are so good is that we are very careful with her diet. We only allow milk and water (and Pedialyte when she's sick). We never give her juice and we limit sugar. Fortunately, Aerin doesn't have much of a sweet tooth anyway.

Aerin will be going to the Feeding Program at Children's Hospital next month for an evaluation. This will be a 3-hour event involving 6 specialists. It's possible that she won't qualify for the program (in that she doesn't have enough feeding issues to require therapy, not that they don't have space for her). For the past couple of weeks, she's been refusing to eat any baby food with a chunky texture. She's also been refusing regular adult food (chicken breasts, green beans, etc.). I think this might be a combination of how much easier it is for her to feed herself smoother food and how much more satisfying it feels in her mouth. She also won't let me add anything to the smooth food. If I try to put a piece of chicken in her squash, she'll suck all the squash off and spit the chicken out.

Next week, Aerin will be starting the Eema & Me (Eema is Hebrew for Mommy) program at her preschool. We'll have to see how that goes and then decide if she's ready to start preschool this year. My guess is that she is not. We both enjoy the Munchkin Minyan playgroup at our shul, but I'm curious to see how Aerin does with a longer, more structured program.

Lastly, we just got back from our very first trip to New York City (Andrew's hometown and where I went to college). I'll be posting more about it later on, but you can see the pictures here.


Anonymous said...

Aerin's story is just amazing and wonderful. I'm so happy for you all, and especially about the footed pajamas. Yippee!

Anonymous said...

YEAY! It's so good to see Aerin doing so well. And her parents as well. :)

Liz B said...

Hi Mrs. M:

I'm Liz B from hatrack, and I wanted to thank you for posting this blog. I read a lot of it last year, particularly the early posts when Aerin was just born. I had no idea how much it would help me.

In December, my son Nathaniel was born 6 weeks early. Not surprisingly, his health problems were not nearly as severe as Aerin's: some relatively mild RDS and jaundice, which kept him in the NICU for 11 days--but as I'm sure you can understand, having my darling baby in the NICU at all was so hard. I just wanted to let you know that you and Aerin were in my thoughts, and having read your story gave me encouragement and strength. Knowing that Aerin had overcome her much more difficult beginning to become a cheerful and active little girl gave me hope when I was discharged and had to leave Nathaniel behind in the hospital. Thank you so much for telling your story.


Anonymous said...

Aerin looks so pretty in the pictures and video. She is getting so big and healthy. We are all so happy for you.