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Showing posts from March, 2012

Pop goes the MIC-KEY

Raya was about due for a tube change anyway, I just wasn't planning on doing it today. :) The balloon on the tube had its own agenda though. She was in bed not taking a nap this afternoon and we heard her start crying the "Mommy, I need help" and "Ouch" cries simultaneously so I went in to investigate. She hasn't been crying when the tube comes out lately but she was this time. Crying with a smirk. The balloon on her "tubie" had popped, although I'm not sure if it popped because she pulled it out or if she pulled it out because it popped. Either way, it was time to fix her flat. :) It's really strange to see her empty stoma. It really does look like a belly button. I've never seen any other empty stomas to compare it with but hers has some pretty thick scar tissue built up around it and I think that has helped prevent granulation tissue. Ironically, the scar tissue IS a result of granulation tissue... I remember the first time he…


I needed a laugh so I made this: What can I say, girlfriend likes to do her own hair. :)
This has been an exhausting week in many ways. So much to do, so little time, and so many interruptions. Having Raya get sick threw me for a loop too. It was a strange little illness that was gone in less than 24 hours, but it left me with a bad taste in my mouth. Before Raya came along, I would have never thought of dragging any of my kids to urgent care late at night just because of a 104.3 fever. The ONLY time I ever did that with any of the other kids was when Ashtyn was 11 months old and had been sick and then spiked a high fever and it turned out she had pneumonia so it was a good thing I took her in. Perfectly reasonable. So then there's Raya. Because of the many months we spent searching for a diagnosis to explain all of Raya's vomiting and everything, I've spent so much of her life worrying about every new symptom and every old symptom that flared and wondering if it was a …

Raya's day in pictures

9:30am: take shower to wash mushy Cheerios out of hair and upper half of body:

10:30am: take short nap before therapy

11:45 am: ride to therapy without making a peep during the whole drive, making Mommy wonder what's wrong with you
12:15pm: fall asleep in the cuddle swing (or is it coddle swing? never can tell) which REALLY makes Mommy wonder what's wrong with you, prompting therapist to take your temperature which is 99.5 degrees

1:15pm: turn down feeding therapist's offer of your favorite food: sour cream

2:00-3:00pm: be like this:

3:30pm: fall asleep for the 3rd time in one day while your temperature continues to rise

6:00 pm: voluntarily lay on the couch. Yep, definitely sick.

7:30pm: watch Mommy lose all faith in her new temporal artery thermometer when she takes your temperature and it reads 106.3 because you're hot but not THAT hot

9:00pm: Tell Mommy you want to go to the doctor

10:00pm: watch Mommy's cheeks turn red while she tries to convince the urgent c…

3 Little Princesses

*If you have a heart, grab a tissue before proceeding* If you were to happen upon these three little beauties happily playing in the grass with their pink balloons, you would likely never imagine just how miraculous it is that they are alive and standing in front of you. You would never imagine that one of them was given a 20% chance of survival due to a severe birth defect, one of them vomited approximately 700 times in her first year of life with no known cause, and one of them has a list of medical diagnoses longer than she is tall. You wouldn't look at them and guess that they've spent a combined total of close to 6 months in the hospital. (and let's not talk about what their combined total medical bills are!!) Their medical conditions are vastly different but they have one thing in common (well, aside from the fact that they're all adorable!)
They are all completely dependent on feeding tubes for all of their nutrition, hydration, and medication needs. The gravity o…


Normally phone calls with the home health company's billing department aren't anything to laugh about. Really. I can't tell you how many hours of my life in the past 2+ years have been spent on the phone with them trying to straighten out messes between them and insurance. Anyway, occasionally the person I'm talking to will say something that makes the conversation a little lighter for me whether they realize it or not. Yesterday I called to clear up an incorrect bill and a lovely woman answered the phone. (oh, but first I called and the guy that answered the phone hung up on me)
So we went through the discussion about the bill and she fixed the problem (hopefully) and then said she needed to ask me a couple of questions before we hung up. Now I've forgotten the first couple she asked, probably because the third one made me laugh and I forgot. :) I should preface this by saying that I wasn't laughing AT her, I was just laughing at what she said because it's…

Happy Monday, Mommy!

I used to refer to Raya as my little vomiting alarm clock due to the inevitable 5:30-6:00 vomiting. Then she moved on to waking me up by filling the room with the stench of Peptamen poop. Thank goodness those days are mostly behind us. She's coming up with a new wake-up call though, and I'm not a fan. This morning she climbed out of her crib, came over to the bed and said, "Mommy, my tubie out!" And so it was:
I'm really not sure how or when it came out this time. The balloon and her belly were dry so I don't think it got pulled out when she climbed out of bed. The balloon was full of water still (5.5ml) and it hasn't gotten lopsided or anything so I just don't know. The good thing was that it went back in really easily and she hadn't gotten fed overnight so there was no belly puke to clean up. :)

Then there was naptime. Always an adventure. :) Ever since her OT came over on Friday and brought the exercise ball for me to sit on and rock her as part …

The cleanest mess she's ever made

We're still plugging away at the sensory protocol. Raya's OT was able to come to our house on Friday and go through the protocol with her in the same environment that I do it in. It became quite obvious at that appointment that Raya has been classically conditioned to relax in the presence of her therapist. :) As soon as we walked into the room and turned on the relaxing music, Raya laid down on the floor and didn't move a muscle while her therapist massaged her and did joint compressions. When I do that with her, Raya sits up every 5 seconds to try and get more lotion and in between that, she's yelling, "I want more lotion!" For the therapist, nada. She just laid there and let the therapist massage her and be in control of the lotion. After the massage & joint compressions, her therapist wrapped her up in one of her favorite blankets and rocked her. Within 2 minutes, the kid was asleep!

Yesterday at naptime, I went through the sensory protocol with her ju…

General busy-ness

Maybe it's just because the kids have been out of school on spring break this week but I feel like I've been running around like a headless chicken lately. I'm excited about everything that we have going on right now in our lives, I just need a little time to figure out how all the pieces fit together. :)

We had a nice visit with my mom last weekend. Raya was fascinated with her and also with the toy airplane she brought her. Raya LOVES airplanes right now and yells, "Eh-pane! Eh-pane!" every time she sees one, so a toy airplane was the perfect "GramE gift" for her. She often insists on sleeping with it and one of the nights that she and I ended up on the couch recently, she HAD to bring her blankets AND her airplane to snuggle with.
It's not very cuddly but she had a fit if I touched it. Since she actually went to sleep, I just let her have it and didn't rock the boat. There was one time that she had dozed off and it wasn't touching her anymo…