First big hike of the summer

Last week on Thursday we decided it was much too nice of a day not to go out and play. No mom or dad work to do so we went for a hike.

We went on the Apex trail that starts at the heritage square parking lot and goes up to lookout mountain. We made it almost all the way to lookout mountain road and then looped back down the mountain through the "enchanted forest". It ended up being a little more than 5 miles total and I realized that I was very out of shape. That hike completely drained me. Especially since I was carrying the Alan on my back most of the time.

He had fun at first. He got so hot hiking that he actually ingested fluid by mouth!! He got thirsty enough that he took some water from a nalgene.

But toward the end on the walk back to the parking lot he got very tired (as did the rest of us). And he got a little sore spot from the bottom of his incision rubbing against the inside of the pack. But hopefully more (and perhaps shorter) hikes to be had the rest of the summer.

We went back to Heritage square yesterday for the annual Cardiac Kids picnic. We didn't stay too long but Alan got to meet a few kids and hang out with his nurse and ISS buddies: Kate, Elizabeth, Gianna, Beth Rose, Judy and Rhonda.

A Special, I-haven't-blogged-yet-this-month-edition of Not Me! Monday

In honor of this fine monday off I have with a sick little boy in my lap, I thought I'd finally try rejoining the Not Me! wagon. Now that Stellan is back home (yay!), MckMama is back in full swing with all her usual antics, including Not Me! Mondays.

Well for one thing, my darling little Alan here is not stuck in his "throwing" stage of development. He does not throw every object he can get his hands on. If that were the case, casualties would include his favorite binky, toys, cell phones, remotes, etc that go flying across the room. He does not figure out how to throw items that should be much too big for him. He did not the other day pick up the big metal clamp (that hooks his feed pump to an IV pole) that we never use and instead let him use as a toy to shake and chew, and fling it over his shoulder. We would never leave a non-child approved item on the floor.

Alan has not completely resisted encouragement to crawl, instead opting to do the side scoot. This method of transit would require more of said flinging behavior (that he does not do) because every time he'd see an object of any shape or size in the way, he'd have to fling it out of his way.

I did not learn at an enlightening doctor appointment for myself the other day that my years of sinus and ear infection suffering might be caused by my excessive nose blowing. The doc could not tell simply by viewing my right ear (which was not yet infected from my latest cold but pulling inward) that I'm guilty of blowing my nose frequently and as hard as I possibly can. I learned that my "method" is not the best and can make things worse.

I do not sometimes miss important phone calls or voicemails because I'm trying to avoid talking to the collection agent for a particular health care provider who's bugging me about a bill I've already paid. I'm too assertive and proactive for that.

I did not go through my pictures and realize that I've been a big time slacker on getting any cute (preferably smiling) Alan shots lately. Dad did get this cute one the other day. (And by that I mean he really did. Not another Not)

We do not risk disturbing his peaceful sleep by turning all the lights on to get a good sleeping picture of asleep Alan.

I did not secretly really like getting Mother's Day flowers:

even though I claim not to like flowers and include them in my rant about how gift customs (including wrapping paper, greeting cards, and well.. cut flowers) are expensive social constructs that waste resources. Because I'm not one who always needs something to rant about and can't just go with the flow.

I did not try really hard to get more flower photos, first by posing them with Alan, who wanted nothing to do with them and was batting and kicking the flowers away when I tried to make him hold the boquet.

then by fixing them up in a vase (and by vase I mean Ball jars that we use as makeshift drinking glasses) and putting them on the table (which I made clutter free just for the occasion) next to a swivel photo frame. First with the picture of Alan and I. Then the picture with Rob and I. Then I realized that a picture next to flowers is a little creepy and reminded me of a funeral so I just scrapped the whole thing.

And, ughh.. I'm not a total failure at HTML with this post not at all the way I wanted it to be laid out.

I conclude, off to do far more meaningful and productive things with my time. (yes, that was another Not joke)

Don't sit so close to the TV..

it will strain your eyes.

I do eat by mouth..

See:

I love to eat my chicken..

But the most fun is happy hour with mom and dad at Old Chicago's roofop patio. Just a stroller ride away from home.

Yes. We are pretty cute.

April (Snow) Showers

Thought we were safe for the spring but we were wrong. Yesterday we got another significant dumping of snow. It was a rainy snowy slushy mix for awhile. We even got some thundersnow (thunder and lightning accompanying snow). The lights flickered a few times which made us nervous that the power would go out before we got dinner made. But it never did. We enjoyed the warm indoors last night with chili, brownies, and beer for mom and dad and Alan ever partook of a couple bites of pureed peas/rice and a sip of milk.

Then, Alan was in his rambuncious (sp?) playful mood and I made him channel his energy toward some weight bearing in his legs. And...Never mind my unkempt "stuck in a blizzard" appearance. Alan stayed like that leaning (well, leaning a lot) on the couch for at least 30 seconds with most of the weight on his legs. He was shaky but he did it!Go Alan go.

And as soon as we defrost again here - we're going out to play.

Its snowing!

A Game

Where's Alan??
Did you find him?

?

?

?


There he is!

Next, where's binky?

There are eight of them. Gerber apparently decided to discontinue our awesome binky model that Alan uses exclusively. So we had to scoop a bunch up before it was too late. Hopefully those packs will last us until binky-weaning day, an event which will be scheduled at some point a long way away.

Spring Cleaning

Today I decided to go through our stash of PO syringes. I threw out everything with any worn out numbers, mismatched plungers, sticky residue and here's what we had left for our collection.


Also decided to part with my collection of disposable 8 oz bottles from the hospital. I dumped the whole bin of them and kept 3 for measuring.

Photographic evidence

Proof that for the first time in who knows how long, Alan ingested calories. In his mouth.






Do you see a resemblance?? No it wasn't an actual cheetoh, it was a gerber finger food cheesy flavored whole grain puff. But he put it in his mouth and chewed and swallowed. Later after I thought I cleaned up all the food mess that had been made when I excitedly pulled out little bits of everything I thought he might like, he got a bolus feed. well right toward the end when his tummy was extremely full, he was unsupervised and must have found a cheese puff that I failed to clean up and had already consumed almost the whole thing before I got to him. With the full tummy of formula and all he inevitable hacked up some milk.. but it wasn't all the feed by any means so I was fine with it. Just psyched that he had taken some initiative to eat something again he thought was yummy.

I definitely think this is reinforcement that I agree more with the Graz model of feeding therapy http://www.kinderpsychosomatik.at/home/en/index.php Basically immersing the child in age appropriate feeding opportunities that encourage autonomy and independence vs. the more structured scheduled means of encouraging oral intake.
I think we may have to have a picnic later today!!
If I were rich and Alan were stable, I'd so take him on an Austria vacation to learn to eat.


Well.. backtracking a little. Alan has done well recovering from surgery. He's pretty much back to his old tricks.
After a day or two of freedom, Alan was still a little pale without any O's on, so we made him put the cannula back on on 1/8. Its amazing how much a difference a very small about of O2 can make. Let me tell you, he was thrilled about getting another cannula on.. :(

Finally hospital pix

Last thursday afternoon, Alan went to the hospital to get his G-tube! His surgery time was 3:15pm so he had a long morning to hang out and get ready. He stayed NPO all day which meant one last Pediasure ng feed at 6 am.

Last bath. Alan decided to take one last good soak before going in for surgery. Afterwards needs to wait at least a week to submerge the surgery site.

Then we went to the hospital to get ready and wait for his turn. Alan wore his awesome "I Heart organ transplant" T-shirt.

Tried on the hospital gown and practiced the crawling.He was a wild crazy trouble maker and figured out how to throw his binky and slippers and toys off the crib onto a ledge of the bed.The he went back to the OR. Mom and Dad got to go along. Alan laid down and got masked up and went to sleep. It took about an hour total. The procedure involves laproscopically pulling the stomach to the edge of the belly and putting the button in. He did well. Right after he had a little respiratory trouble but it got better with some morphine. His tummy was probably just hurting to much to get good breaths in. Mom and Dad got to see Alan in the PACU. He was still very sleepy.

Then, Alan got to go to the CPCU. Yay, room 921. It was awesome. He got to see a bunch of old friends and get taken care of by mommy's coworkers who did an awesome job.

He spent two nights. His tummy was still very ouchie at first but he got medicine to help. The next day he started feeding on pedialyte then moved up to his new formula Nutren Jr. He started on slow continuous then worked his way up and finally tried some bolus feeds that he kept down great. Saturday night Alan finally went home. His site has leaked a little which hurts but we clean it and put Maalox around the button to protect his skin. The G-tube is awesome. Its very easy to use and its great to get the NG out of the way.

Then.. mommy got super sick, which is why I've been a slacker getting these photos uploaded. I had a sinus and ear infection and probably some kind of underlying virus. It started Sunday and I'm just now getting over it.

But Mr. Alan's doing super. He's even getting back to some rolling and trying to crawl.

Sending our love to Baby Stellan

Thinkin of Stellan

Please keep little baby Stellan in your thoughts. He's a very sweet little man. During his mommy's pregnancy he was in Supraventricular Tachycardia (SVT) that put her in the hospital. Managed with drugs, he beat the odds and was able to be saved and born a happy healthy baby last October. Last night, for the first time since birth, he went into SVT rhythm again and has been going close to 300 with his heart right. He's in the PICU trying to get back into a normal rhythm. He's been blowing through his IV's and hopefully will get a central line in soon so he'll be done with the poking.

Read more at MckMama's blog and check out some photos of this beautiful boy.
http://www.mycharmingkids.net/

Hoping now for him to get out of this SVT spell and stay out and to come up with a plan of care for managing this in the future.

he's having a good night

Pictures will have to follow when I get home to my camera cable. The procedure went well yesterday afternoon. It took about an hour. Right after surgery he was having a little breathing difficulty that resolved itself once he got some morphine.
He came up to the CPCU last night. It was a pretty good night, he just woke up hurting once. This morning Alan woke up bright and early to his 730 am cyclosporin lab draw. It turns out that his cyclosporin level was super high so we'll have to do some dose adjusting to get it back down.
And he was really puffy. Probably OD-ed a bit on the fluids. He got a dose of Lasix this afternoon and managed to pee most of it out. He's been weaned from 2 L to 1/2 L and can hopefully wean the rest of the way off the O's tonight now that he's dried up. Started using the G-tube today with some pedialyte and now he's up to 20 mL/ hr of formula, so halfway to his goal feed of 40 which he'll hit at 3am if all goes well.
Alan was pretty irritable today but its definitely improved. He got a sponge bath and put on some cute pj's and has been getting some Tylenol/ codine. I think we're getting close to the smile coming back. He's been up to his usual trouble watching movies and throwing things off the bed like binky and socks and toys.
Better knock on something but we're hoping to get out of here tomorrow morning. Its been a little weird being a patient on the unit where I work but its been good having everyone that knows him and loves him take care of him. We went to a G-tube care class - pretty straightforward stuff. This really looks like its gonna be so much easier. I wish we'd gotten it done sooner!

Today's the day!

We're headed out in an hour to the hospital. Alan's getting his G-tube.

First 60 degree plus day in awhile

meant that we just had to go to the park.

Look who's two fisting some food..

That is chunk of french toast in the right hand and a biter biscuit in the left.

We most certaintly DO play with our food around here.

WTF?Wednesday

I'm starting a new weekly column. Not sure for how long but maybe it'll catch on. Its WTF? Wednesday. The idea to share the random crap that gets said that makes you scratch your head and say WTF? Feel free to plagerize and post your own. I always wanted to be a trendsetter.

Ready for this week?:

"My office chair sucks. Sitting in yours feels like an ass vacation"

"Yay ass vacation!"

Its a no-go today

Alan was scheduled to get his G-tube today, but got cancelled. His nose is still just a little too stuffy for it to be safe to go under anestesia. So instead we just hung around the house and did pretty much nothing. Hopefully in a few weeks we can try again.

And it means that I'm back to working tomorrow that I was going to take off.

Your Dreams

Take me to where you dream
Little one
Take me to where you go when I lie next to you
And watch your eyes close and your mouth form
An involuntary half smile

To this place
Where native hearts beat strong
Babies stay warm at mother’s breast
Grow up quick to run and play
Each full of joy
No clouds, no fear

Is this the place where your angel friends
Run free
Beyond the bonds of broken bodies
Held back no more?

And children of famine and war
See that there is more
Than destruction loss and emptiness

In this place, it is always day
Children find their reward
For the innocence
That never went away
Winds are gentle
Playgrounds sprout from tree and grass

Or are your dreams
In a place just as dark as ours?
Is fantasy broken by
Sadistic thought, fear, evil, death
Do the monsters chase you even there?

And is there even a place of peace?
Does it exist?
Even beyond that final and deepest sleep?

Could it be
The only reprieve for all of us
Will only be rest?
Rest

Happy Sunday

Alan just wants to say hi.


Nothing too exciting going on here. I've got to finish up my homework since this next week is going to be busy. I just did not so awesome on my human development quiz. This time even after doing all the reading in the RIGHT textbook and having the book to reference during the test. Oh well. I work tomorrow so I have to finish everything up today. And.. we'll be parting with some of our baby gear. Giving it to our friends who are expecting. Guess our kid is growing up.

89 bottles of pediasure on the wall..

Every wondered what a cabinet full of Pediasure looked like? I figured it out and there are 712 oz in there and about 21,360 calories. Yay! Thanks WIC for hooking us up.

We love this stuff around here. Comes in several tasty flavors.

And its bulking up our little man:)

We counted 20 lbs the other day with our crude dad-get-on-the-bathroom-scale-with-and-without-the-alan method which would be about 9 kg. We'll have to wait and see what the official weight is yesterday but he sure looks like he's growing.

Four more days until surgery and then hopefully No More NG!!!