Monday, August 27, 2012

Addison back in the OR

I spent Friday at the beautiful newly renovated Mott Children's Hospital, and that's when I wrote some of this. I didn't have my power cord and the computer died so I was never able to post:

Friday, August 24

Addison has a procedure called Anorectal Manometry today. She needs to be sedated for it, and with her history of regression obviously I am a nervous wreck. This is the 6th time she's been under in her 22 month life. The procedure should be less than an hour and hopefully we will not need to be here too long after that. The anesthesiologist was understanding about my concerns and said he will be very cautious with her back there.

She was a wild child back in the pre-op area - luckily some amazing friends Miss Kori and her little sweetheart Ava came by to hang out with us! We went to the new play center provided by the football team - it was awesome! It was nowhere near enough time for a couple of people who have been friends for almost a year and never met in person before. We met on an online support group for families with special needs kids and it honestly felt like running into old friends. :) It was a great way to pass the nervous time waiting for this to be over with.

Audrina is still in the PICU with my mom - getting EKG and lab work and then hopefully going home tonight!

Monday, August 27

The girls both did great Friday and we were able to come home. Addison flew through the sedation with zero issues and Audrina had a great last few hours in the hospital, smiling and happy.

Adam and I have a huge passion for rollercoasters, and we hadn't been to Cedar Point in 2 years, so thanks to my parents, Adam and I took a 'day off' Saturday. It was the perfect day trip (close enough not to be away from them overnight) and it was amazing to have an all-day break from the constant break-neck speed of our lives. Of course we missed the kids like crazy, so Sunday was spent baking M&M cookies, watching a movie, swimming at my mom and dads, and painting little toes pink.

A few other little updates:

Homeschooling is going great. Brooklyn is so mature and loves the one-on-one time with me, so we have gotten so much accomplished the first week. She had 2 days off due to the hospital but we picked right back up this morning and the rate she's learning things at, we are due to be finished early in the year anyway so this allows us a little more flexibility. Lily is having a harder time, she has a mediocre attention span at best and despite both of us working very hard to overcome it, we think she may thrive better in a traditional preschool classroom so she will be returning to Little Lamb where her and BK attended last year. I promised myself lots of wiggle room in our homeschooling and I'm not going to beat myself up over it not being the best thing for Lily - every kid learns differently and my goal is to give her the best education possible, and that just wasn't happening at home for her. She does best in a situation where other kids are modeling good listening skills and she can follow along. She's my sweetheart, but also a little bit of a wild streak and needs the extra reinforcement of seeing everyone else doing what they are told to remind her to listen. She starts next Tuesday and will go three days a week from 9-11:30. We're going to miss her at home, I can't believe she's turning four soon! Brooklyn has already memorized a bible verse; we talked about Joseph and his coat of colors, learned how to count money, did some yummy snack math, and even dabbled in some spanish. We paint and build and play - its been good for both of us, now that I think about it!

Audrina had a rough night and cried for 2+ hours in pain but we cannot find the cause. There's no pattern, rhyme or reason as to why she does it, when the episodes happen. We're frustrated and tired as you can probably imagine and because of her feeding tube, apnea monitor, and pulse ox you can't just pick her up and walk around like you would with another baby. Her heart and oxygen were great, but the shrieking continued. Adam gets so upset those nights - he just wants to make it better and we try a million things and she just keeps on crying and crying. Its heartbreaking. I try to be patient with both of them, but we all get a little snippy with one another at 330 in the morning. Its just like, you know something's not right and your child is in frequent pain and no one cares or does anything - you're just supposed to deal with it. Addison had to, and now Audrina. I am considering seeking out some sort of pain specialist - just because my daughter is too young to tell them how she feels, doesnt mean its fine to let her suffer! I am confident that if any of us were in enough pain to be crying for half the night several nights a week, our doctors telling us we just have to live with the pain would not be good enough, right?

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