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Thursday, February 28, 2013

Izzy's scars

I worry that Izzy will hate her scars.  It can be hard to be different and I worry that some day in the future she will hate the fact that her zipper will peek out of the top of her shirt.  In the last few months, she has become aware that she is different, that few people have zippers and buttons like she does.  When she is comfortable with someone, she shows them her scars and then tries to lift their shirt so she can see if they have one, too :p  I find it cute--other people, not so much.  But they are nice to her and a few have even let her see that they have no scars (occasionally, she gets to see that there are scars--those make her so happy and excited!).  But there isn't much we can do about the scars--some fade, some don't.

If I can't control how her scars look, at least I can control how they feel :)  Our surgeon talked to us about scar massage and I read up on it before she had her surgery as well.  We have used Palmer's Cocoa Butter Formula with Vitamin E Skin Therapy Oil on the boys when they get minor cuts and it has made little scars pretty much disappear so we thought it might make a good massage oil and perhaps get rid of some of the tiny scars where her stitches were around her central line and chest tubes were stitched into place.  She also had a tiny scar from the IV in her ankle.  Once we got the all clear to begin working with her scars, we started massage.  At first, she could only tolerate the slightest touch.  She liked having the oil rubbed on but only very very lightly.  As time went on, though, she wanted her massage to be a little harder and last a little longer.  So for each massage, I rub and press and work the scars in every direction for as long as she wants me to.

The best thing about the massages is how much she enjoys them :)  She will get the bottle of oil and bring it to me and ask for her "sahge" :)  I also noticed that the scars have softened and flattened a bit and when she moves, you can no longer see the skin "tugging" around the scar.  She is more comfortable and rarely rubs at her chest anymore. Plus the tiny scars from stitches and IVs have almost disappeared--when she is cold, they pop out but when they are flat, you can't even see them.  Its kind of weird but the boys think it is totally cool!  Her chest tube scars are faint now and hard to see--they have filled in, too, so she only has minor indents instead of the major indents of those first few months.

For us, doing the scar massage has been great :)  She loves it and it does seem to help with the condition of the scars--plus feeling them go from being hard and rigid to soft and pliable has been pretty neat.  Kinda like our own little science experiment ;-)

Disclaimer in case anyone wants to know:  I was not asked to write about this product.  I am not being paid to write about this product (although if Palmer's want to send me some free stuff, hey, I'm willing!  I'll even write more stuff about what they send me because I love this brand :p).  But I've been asked multiple times what we do for her scar so I thought I'd post in case anyone else is interested :)  And since I use a specific product, why not give you a name and a link?  Do I even need a disclaimer if I am just sharing something I like just because I like it?  If not, OH WELL, you got yourself one anyway ;)

Wednesday, February 27, 2013

Argh, I'm a pirate!


Earlier today, Iz was doing her very favorite activity--emptying all the clean clothes from my hamper before I could fold and put them away ;)  Luckily, today she ran across the top from B's pirate costume and it distracted her from emptying the entire basket.  She was so excited and insisted she needed to put it on right away.  Then she ran around growling (her version of Argh, I think) and giggling and had a grand time pretending to be a pirate--sans pants, of course, because lately she has been all about no clothes at all.  

Can I also say how amazed I am that my teensy tiny little peanut who wasn't even on the growth charts for a while is wearing a costume for a three-almost-four-year-old and it FITS.  

Sunday, February 24, 2013

Ten months and five days post op

This little girl is a daredevil who will not stop climbing!  At least today she is (mostly) keeping a little closer to the ground (she is standing on her toy drum).  Sometimes it is hard to believe that just a short ten months and five days ago, they stopped her heart.  Such a surreal experience, even all of these months later.  

Sunday, February 17, 2013

We have a little chocoholic on her hands!  Izzy got her very first box of chocolates on Valentine's Day and she LOVED it.  She has had little bits of chocolate here and there but on Valentine's Day, each kid gets a mini box and they can eat as much or little as they want.  Izzy ate the whole thing and then went around begging her brother's for some of theirs.  Every day, she asks for chocolate.  When she sees someone getting a piece of their chocolate box, she comes running :p  This girl sure does love her chocolate!

Thursday, February 14, 2013

Giant Dilated Eyes

Izzy has been off her meds for about six months now so I figured it was about time she had an eye exam.  After all, between heart failure and bypass and the ventilator, she has extra risk factors and I'd rather catch problems early.  Plus, she randomly gets a droopy eyelid--ten minutes later and its back to normal but I wanted to get her checked.
Izzy did AWESOME at her appointment. She was calm and cooperative and she turned on the cuteness.  The techs and Dr were amazed at how great she did :)  Even the drops to dilate her pupils did not phase her :p
Dr. S could immediately see that Izzy has astigmatism.  She says it is genetic and both S and I have it.  One more thing the kids can thank me for :p
Dr. S also said that at this age, kids are farsighted (or did she say nearsighted and I am remembering incorrectly? Anyone know?) and as their eyes grow, their vision becomes normal.  Right now, Iz is neither farsighted nor nearsighted.  As her eyes grow, she will become nearsighted. Sorry kid.  You got our bad eye genes!
The doc said the droopy eye could be a complication that developed from the OHS--she has seen it in her patients that have had OHS.  If that is the cause, it is harmless and sometimes clears up over time.  The other, less likely, cause is an autoimmune condition that would be treated with medication.  Since Iz did not have a droopy eyelid during the appointment, she couldn't really check it out since Iz was already dilated. So I am to keep an eye on it and try to get pictures of her episodes. If it gets worse before her six month checkup, they will move up her appointment.
And finally, a picture of her giant dilated pupils after we got home:

Sunday, February 10, 2013

Friday, February 8, 2013

My alien child.....

Snow-wise, we haven't fared too badly in my little corner of the world--I can still see bits of grass poking through so it can't be all that deep :p  But I have heard the roads are terrible (probably because of all that slush that fell as rain turned to snow) and that there is a lot more snow north and south of us.  The local station I check for school closings lists over 600 schools closed (not districts--they count individual schools).  S's school almost never has snow days because there is no bus service and most of the students are driven in from the same town the school is in.  I can remember at least once when I called him in told the school I was declaring a snow day because the roads between us and them were too bad :p  However, today his school is closed due to weather.  He is very very very upset.

My child is an alien or something.  What kid doesn't want a snow day?

In other news, The Sick seems to be vacating our house albeit slowly.  The boys are both feeling pretty good and Izzy just has an occasional cough.  I seem to be the lingerer as I am still coughing quite a bit but the antibiotics did their job on my sinus infection and at least I can breathe again :D  I may even brave the great outdoors today and get the kids out in the snow.  Maybe.  We'll see how the cough does today.

Monday, February 4, 2013

S's surgery follow up

We had a very snowy drive to the Children's Hospital in the nearby Big City and an even snowier drive back but we made it :p  S had his surgery on Dec 11, he got his cast off four weeks ago, and everything is still looking great.  The bones are nice and straight and the Dr said they look about 90% healed, which is expected at this stage.  S has been having some pain in his wrist when he moves the arm too fast (I call it flailing--its one of his sensory seeking behaviors and his control over doing it is spotty) and the surgeon thinks the cap he put on when he placed the rods may be hitting the tendon when S flails.  He cannot take the cap out just yet but we go back in six weeks and if it is still bothering S, they will schedule him to get the cap taken out and then a few months later he will go back in to have the rods themselves pulled out.  S agrees with the Dr that it would best to be able to do all of it at once instead of two separate surgeries so he told the Dr he was going to try real hard to not flail with his left arm :p

In other news, poor Izzy caught a tummy bug and was just miserable yesterday and last night.  She is feeling better today and has kept everything down since about 2am so she is on the mend :)

Friday, February 1, 2013

We are lurking.....

There has been much sickness in our house and we are lurking at the moment, laying low as we try to heal.  It sure would be nice if that happened soon ;)