Tuesday, March 31, 2009
Miss Erin worked with LC to establish what her baseline was so we could focus on areas for improvement. LC was delighted to be the center of attention. One of the first items on the agenda was to figure out what most motivated LC...it wasn't me...or toys...or sounds...it was her own reflection. Good to know self esteem will not be a point of concern...(Just like her father...)
Miss Erin was super helpful and gave us some tips for helping LC at home. She liked LC's trunk support and head control and gave us some ways to help strengthen her arm muscles. (Good luck. I'm obviously not an authority in that department. Sometimes I have to take a break while I'm shampooing my hair, for crying out loud.) Erin said she was developmentally appropriate for a baby nearing the end of her 5th month, so that was good to hear. It was actually good to hear anything at all, since the session was also an attempt by LC to break an IDC record by blowing a 30 minute razzberry. It really is her #1 favorite hobby.
LC had a blast and was sad to be loaded up for the trip home. She fell asleep right away, though. No WONDER that Alayna is in such good shape. Miss Erin said she was going to have other therapists jealous of her cute clientele with LC and Alayna on her list. LC was too preoccupied smiling at herself in the mirror to respond...
by many words that begin with 'r',
but none of them fully encompasses the wonder she is or
the potential she holds for wonders to come...
suture hanging out of her chest.
Monday, March 30, 2009
Looks like we're officially playing this one by ear...
Roobie is heartbroken over her lowered status with Justin, her sweet Baboo. She's been expressing her sorrow through random acts of naughtiness...(But don't be confused...LC belongs to ROOBIE. She'd lick every inch of the kid if we let her.)
She has never offered to chew ANYTHING and since LC's arrival Roobie has become obsessed with attacking and destroying any baby sock or mitten that falls within her reach. Just before LC's heart surgery Roobie ate a baby mitten right in front of me when I bent down to take it from her. Two weeks later we found the mitten in the hallway. I need not describe it's condition or the puddle of goo it was lying in.
Here was her latest act of tyranny. Since LC and I left before Justin this morning, I'm sure Roobie was anticipating a morning alone with her sweetums. This is how she responded to the news that he'd be leaving as well...
(All interested parties must contact me immediately and be available to pick up before Justin gets home from work. All interested parties must also be willing to sign a certified document prohibiting you from confessing to Justin the whereabouts of said dog or how you came into its possession.)
We just got back from our pre-op appointment. I just took LC in her robe and slippers (thanks again, Gretchen!) because she has to stay in her diaper while she's there anyway. You'll notice her security bikini in the photo as well. She's been preferring it to blooie lately. I think she resents him for his unexpected abandonment of her.
We won't know when the surgery time is for Wednesday because the surgeons can reschedule up until 10a.m. the morning before. They're going to call tomorrow afternoon with the "go" time for us to be at the hospital and ready to go.
The best part of today's visit...THEY DIDN'T DRAW ANY BLOOD! I couldn't believe it when they told me! I got a little teary. It may have been because I'd just given LC a full dose of Tylenol for nothing, but I think it was more relief at not having to put her through that business.
The director of anesthesiology saw LC and said he didn't think a cardiac anesthesiologist would be necessary. He also asked when her open heart surgery was scheduled to be performed...which didn't inspire a huge amount of confidence on my part, director or not. I explained that the stripe down her chest was NOT a bizarre birthmark and that she had already had the surgery done. He held firm with his opinion that she didn't need a cardiac anesthesiologist, so I came home and called our cardiologist, Dr. Kaine. We'll see what I hear back from him...
Negative energy warning...the next few paragraphs are just me complaining, so feel free to stop now if you're not interested...
This morning the surgical nurse asked if this was "Lanny". (Seriously? Why am I getting that all the time? L-A-I-N...like TRAIN...and RAIN...and PAIN in my neck that everyone thinks I would voluntarily name my kid Lanny...) But I digress...
I confirmed that the patient was Lainee. Then she asked if I was LC's mom. I said I was. Then she said, "Oh. But I saw on her chart she's adopted. So you're her adopted mom."
I'm not ashamed of the fact that LC has two moms and happily admit that she does, but I don't understand WHY that needed to be established? What difference does it make? Her treatment wouldn't be any different...And if you saw it on the freaking chart, then why did you even ASK me?
"Are you LC's nurse? Oh, but I see you completely lack social skills. So you are her tactless nurse."
I'll go snuggle with my Tylenol-ed squirt and her 'kini...that'll cheer me right up. We're sending virtual snuggles to all of you as well...thanks for the prayers for our morning. WOW! You people do good work.
Sunday, March 29, 2009
Tomorrow we prepare for LC's fifth hospitalization. Five in five months isn't too bad, I suppose, but we wouldn't mind spacing those out a bit here in the near future. In the morning LC and I will go to the dreaded pre-op appointment. It will be a long morning of pokes and prods ending with the ever-dramatic blood draw. I'm dreading it like the plague. I have never seen her blood drawn with fewer than 10 attempts to find veins or less than an hour trying. Her reaction to Friday's painless echocardiogram is pretty clear indication of the unpleasant association LC's quickly developing toward anything medically related, so I'm hoping we're happily surprised by a nice, fat juicy vein when the time comes for blood to be drawn.
I don't think we'll meet with Dr. Sharp, our surgeon, tomorrow but we will be able to discuss the procedure with an anesthesiologist. Hopefully the request of a cardiac anesthesiologist won't be much of a problem and we'll get a feel for what time of day the surgery will be scheduled and how long we should expect for her to stay following her Gtube placement.
Thanks for praying LC through tomorrow's yucky events...I'll post with the official surgery information as soon as we learn it...
Saturday, March 28, 2009
One of our FAVORITE groups has been Steve, Deanna and Brianne...friends of our Great Aunt Ranelle. One day, out of the blue, a package arrived for LC from a family we'd never met. They sent LC a super sweet note, a hooded towel and........A BIKINI!!!!
(I probably shouldn't mention this or admit to doing it, but the bikini is SO DARNED CUTE and it has a little skirt cover up that goes with it...so twice a week in the evenings she wears it with her hot pink high heels and watches Dancing with the Stars...but I digress...)
The Herredsbergs didn't even know the miracle gift they were sending...because a few nights ago our dryer went kaput during the Amish plague that settled on our house (For over 24 hours we had no cable, phone, internet, dishwasher, kitchen sink or dryer). My industrious husband has figured out that the issue is related to the light in the dryer and some switch that lets the dryer know the door is shut and the light should click off. But it doesn't. And the dryer thinks it's always open. And doesn't turn on.
Which wouldn't be a huge problem since I think I'm averaging a 3 times/month laundry habit.
Only there were some things of LC's in the wash when we realized the problem.
And one of the things was........
He's been pretty helpful in falling asleep lately...his silky side is especially effective in getting the job done.
Luckily, our LC is quite comfortable with improvisation. This was her solution to the problem and they have been inseparable at snooze time since she stumbled upon her Blooie substitute.
(For those unable to make out what you're seeing...those are LC's arms laced through the top and bottom of her brand new bikini...
Bless you, Herredsbergs, bless you...
Friday, March 27, 2009
Luckily they'd obtained enough pictures for Dr. Kaine to get the information he wanted so she didn't have to go back in again after she was cleaned up.
Dr. Kaine said he liked what he saw in regard to the ASD and VSD that hadn't closed completely following surgery. He still thinks they'll close as LC grows and, even if they don't, will not become acute enough to require additional surgery. He's not as definite about the coarctation of her aorta. Her femoral pulse is good and strong and doesn't indicate the coarctation but it keeps showing up on her echocardiograms. As of now, we'll keep monitoring the situation and possibly undergo a catheterization procedure to correct it in the future.
But enough about the major heart repair details...he also looked at the incision bump. It was a mixture of good and bad...the good news is we will not see a wire poking out of her chest at any point because the irritation is being caused by a suture made above the wire but below the skin. The bad news is the incision will possibly reopen as the suture works itself out. It's currently absessed but its occuring deep enough in the skin that LC isn't experiencing any pain from it. It will only affect her directly when I wake her one morning to find her chest has split open and I pass out in a puddle of my own vomit under her pack and play.
Another issue that came up was LC's weight since surgery. Although her heart isn't working as hard as it was before and her eating schedule has been unchanged, her weight has actually dropped about 7 ounces since the beginning of March. It will be something that will be closely monitored anyway, due to next week's Gtube procedure, but we may need to return to round the clock feedings (boo hoo!) and specially concentrated formula, depending on what her weight does in the next week or so. Prayers for plumping up would certainly be appreciated. (But make sure you're specific about the target, folks. I've got a drawer full of Easter candy here that I'll be visiting regularly WITHOUT a spiritual intercession...)
Despite the 45 minute scream session at the cardiologist, Miss L did not feel that napping was necessary today and didn't collapse until after 9:00. Unfortunately, I'll need to wake her in a bit with the happy jolt of a tube being thrust up her nose, so that will improve her disposition, I'm sure.
An endearing, "Go find something else to do
with yourself and your camera" razzberry
from LC and her sweetums...
Team Justin. I'm so outnumbered.
Thursday, March 26, 2009
Unfortunately, since we're trying to stay germie free for Wednesday's surgery, we won't get to sport them at the Down Syndrome Guild conference we'd hoped to attend on Saturday...we're starting to get suspicious of LC's hospitalizations whenever we have one of those events planned. We're definitely going to stop sharing our calendar of events with her...
Wednesday, March 25, 2009
Tuesday, March 24, 2009
This is Loren's first visit...only a few short months ago...
Saturday, March 21, 2009
Thursday, March 19, 2009
Monday, March 16, 2009
Curtie and Grandpa Charlie...
LC's Adoption Day cake from GG Grace and Grandpa Charlie!