Craziness in Colorado

First big hike of the summer

2009-05-18T11:21:00.000-07:00

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

2009-05-11T09:47:00.001-07:00

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..

2009-04-26T20:34:00.000-07:00

it will strain your eyes.

I do eat by mouth..

2009-04-26T19:37:00.001-07:00

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

2009-04-18T08:15:00.000-07:00

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!

2009-04-17T16:57:00.001-07:00

A Game

2009-04-11T16:16:00.000-07:00

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

2009-04-11T12:43:00.000-07:00

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

2009-03-30T08:36:00.000-07:00

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

2009-03-26T20:30:00.000-07:00

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

2009-03-26T20:16:00.000-07:00

Thinkin of Stellan

2009-03-23T17:19:00.000-07:00

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

2009-03-20T18:57:00.000-07:00

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!

2009-03-19T10:14:00.001-07:00

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

First 60 degree plus day in awhile

2009-02-23T19:24:00.000-08:00

meant that we just had to go to the park.

Look who's two fisting some food..

2009-02-23T19:16:00.000-08:00

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

2009-02-18T17:46:00.000-08:00

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

2009-02-18T17:43:00.000-08:00

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

2009-02-18T12:40:00.000-08:00

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

2009-02-15T08:58:00.000-08:00

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..

2009-02-14T11:58:00.000-08:00

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!!!

Its CHD Awareness Week!!!

2009-02-09T10:43:00.000-08:00

Commemorating all the brave children and adults battling Congenital Heart Defects and their families. Please take a second to check out the CHD Awareness blog to learn more. This week they will be featuring a different story every day that you can read to learn how heart disease affects children every day.

Not Me! Monday

2009-02-08T19:12:00.000-08:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I do not usually let my baby stay up until 10 pm.

I did not score pretty badly on an open book psychology test and then a few days later realize that I had purchased the wrong textbook.

Although I certainly don't want him to have another extra medical device on him, I have thought about how cute Alan would be in a pair of glasses in anticipation for his eye doc appointment tomorrow (Although fingers crossed that they say his eyes are perfectly fine)

No, our little boy does not laugh really hard at the slightly violent scenes when he watches movies with us.

Bath days do not feel like special occasions around our house because "real baths" are so few and far between.

I did not lie in my mandatory biology online discussion and say that I've always been fascinated by deep sea ecosystems, when in fact I've never really liked the ocean all that much.

I did not just eat slobbery Cheerios.

Moving Around

2009-02-06T21:35:00.000-08:00

Hi and happy Friday from us!

Well Alan's still been sick but he's really got the hang of moving around the living room. Its not a crawl, its a roll with a pushing up on the tummy to pivot kind of thing but he's figuring out how to wreak havoc on everything.

Here's his technique when he sees what he wants:

Got it!

Other than that just lots of rolling around the floor finding stuff to get into and enjoying the new found freedom of mobility.

The bowl.. that is our attempted at "desensitizing" to feeding utensils. Doesn't seem to do much good though. He's smart. He likes the bowl.. just not having anything in it. But its fun to chew on.

And to play peekaboo.

Beach Dream

2009-02-02T12:11:00.000-08:00

"Once upon a time, there was a little boy who wanted to go to the beach and see the ocean. But he was too sick." I don't know why I found myself spontaneously starting to tell this story one day almost a year ago. Maybe I was sadistic and for some reason just wanted to make myself cry. It was May, I think. I was at the hospital holding my 8 month old boy after being admitted for months. That past winter we had longed for the first summer with our new baby. He would be done with his second heart surgery (in March) and ready to go outside and play and go with us on hikes and camping trips. But that summer never came. He didn't tolerate that 2nd surgery and his future was looking grim. We were coming to the point where it looked like he was inevitably in heart failure and transplanting would probably be his only option.

So that day, in that hospital room, I thought about how wonderful it would be to just take my little boy away, to a beach far away. He could feel his skin touch the sand and put his feet in the warm water. But I feared that day would never come. Honestly what I feared most of all was that he would continue the painful existence he was experiencing - in the hospital with chest tubes constantly in and out, and then not make it out of the transplant - and never get to experience normal life. I just got it in my head that if I could only take my baby boy to see the ocean..

Well we were lucky enough to get a summer. He stabilized enough to come home on oxygen, continuous line of milernone (IV drug), special formula by tube, and lots of meds. He was restricted to a 1 hr radius to wait for his new heart. It wasn't the summer we had dreamed of but he did get to see his home and the sunshine. And he did somehow survive the transplant and now has the chance for a full life.

I was reading McMama's blog the other day and saw all the photos of her Carribean cruise with baby Stellan. This photo, which I think she captured beautifully just about brought me to tears.

http://www.mycharmingkids.net/2009/01/just-another-day-in-paradise.html

Stellan is quite an amazing little man who managed to survive some severe heart dysfunction in utero to be a beautiful healthy baby today and have his first beach vacation. If you've never met MckMama or her fam go check it out http://www.mycharmingkids.net/

And it reminded me of that dream I had a year ago that I still long for. We have our goal now. We will get Alan healthy and strong enough to travel and he will finally see the ocean and feel that sand and water against his feet.

Not Me! Monday

2009-02-02T11:39:00.000-08:00

OK.. its that time again. My trusty assistant and I will be sharing all the things that we DON'T do. (And by assisting I mean that he hangs out in the computer loft with me watching cartoons over the railing.)

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I promise that I do NOT ever use Pediasure as a coffee creamer.

I did NOT find myself leaving the hospital today lugging a fully stuffed backpack of gear, an 18 pound child in a sling, an oxygen tank with a shoulder strap and a full cup of coffee. All because I was too stubborn to bring the stroller in, wanting to be one of those "cool crunchy" mamas but being hopelessly stuck in a world of medical appliances and formula and such.

I did not carry a child and oxygen all the way to the neighborhood mail kiosk to mail my rent check which had to go out today only to see the mail truck still there and realize I forgot my envelope. I did not then have to run back to the condo to grab it and come back to find the mailman had already left and then try to at least pick up our mail, but get confused as to which key to use and which box is ours and go back home empty handed (well besides the letter I didn't get to send and also besides a heavy oxygen tank and a heavy kid in each arm.)

Driving this morning, when the 8:00 am medication alarm went off on my phone, I did NOT seriously consider reaching back to the car seat to steal a binky and give a cyclosporin dose while driving 60 mph on the highway. If I had actually considered doing that, hopefully I'd get a moment of common sense and decide to pull over to give the med on time instead.

I did not score an 80% then an 83% when aloud to retake my first online exam (which was open book and basically open - anything since I had the internet open and available to every resource out there) That would be a bad start to my wanna-be-nursing career if I can't manage an A in any of my pre-req's.

Happy Super Bowl Weekend

2009-02-01T14:03:00.000-08:00

Yay! Not sure who I'm rooting for. We will be making some guac later to celebrate and I'm always all about the guac.

Still have a sick kiddo:

He did go into the hospital friday and got his IVIG and a single dose of Lasix and we put him back on 3/4 liter of O2. And he had to miss his appointment with the feeding disorder specialists who were going to check out his eating behavior. And at this point if he's still sick

Other than that.. same old. I'm very intimidated by my classes I'm taking online. Its been so many years since school. I feel comfortable with the material - its just that some of the assignments and tests are so overwhelming. I got an 80% on my first one and that was with my textbook and google readily available. Hopefully I'll get the hang of it. I just think that mommy brain has gotten the best of me.

OK.. now to be "serious"

2009-01-26T11:26:00.000-08:00

Alan is sick! He's been fighting the CMV for awhile. He probably contracted it in December sometime from his heart donor. Its a virus, somewhat related to chicken pox, that is not symptomatic in healthy people - its only a problem in immune suppressed patients and pregnant women.

His tummy is sick - he's having a hard time keeping anything down. And his breathing is heavy from time to time. It looks like he'll need a dose of IVIG probably friday, which is an infusion to help boost immunity. He'll have to skip his feeding assesment that we were really looking forward to.

Poor little guy is so tired. He just wants to sleep.

I guess I'll play today

2009-01-26T10:26:00.000-08:00

Not me! Monday!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I am NOT bloggging to avoid getting housework done.

I did NOT need Facebook to remind me that my husband's birthday is coming up.

I did NOT get 6 takers within 24 hours on my free box spring ad, even though I clearly stated it was torn and squeaks. And I didn't roll my eyes when someone asked if they could have pix before deciding.
People will take free anything.

I do NOT feel relieved at seeing symptoms that my son is sick, just because it proves that his other symptoms don't indicate heart failure.

We did NOT have to call radiology to see whether a barium poop diaper would be safe to put in the washing machine.

Studies

2009-01-24T13:08:00.000-08:00

My days are SO busy. For one thing, Mommy always needs my help on her homework.

On my own I've been doing a lot of research.

I'm reading up on some species of elephant. Its fascinating stuff.

In my free time I keep myself sharp with Suduko puzzles.

Ah... what a life!

The Kangaroo Joey

2009-01-24T12:58:00.000-08:00

It seriously rocks our world. So at the beginning of the year we had an insurance switch and had to switch home care companies for feeding supplies. We were a little nervous because we were switching to a company we have not been so pleased with another type of supply they provide us. Well that was until the day the pump arrived:

OMG.. look how small. An all digital display. A pleasant quiet pumping sound. Adjustable volume to the alarms.
Auto Prime function which means no more quick dumping formula in the bag and clamping it right before it gets to the end of the tube. No more reservoir that gets overfilled and makes it not work. And no more annoying error message every time our busy body boy decides it's fun to knock the pump over by pulling on the tubing.

Awww... just looking at our new one next to the old crappy one. Can't wait to give that one back.

Yep.. this will do.

Haircut

2009-01-24T12:51:00.001-08:00

The trimmer finally came out to take its stand against the cyclo fuzz.

Took care of those baby sideburns:

And trimmed off that rattail in the back

And there's our handsome boy, doing what else?? Watching his Saturday morning cartoons of course.

Not Me! Monday

2009-01-12T11:27:00.000-08:00

OK.. haven't done this one in awhile. But here goes. These are all the things I have NOT done lately.

My husband did NOT purchase a dozen grocery store donuts yesterday. And I did not do my fair share in helping to eat them.

I have not spent the last two days off doing absolutely nothing.

I have not restarted my coffee addiction after being clean for 2 months.

I do not let our toddler lie around watching cartoons all day just because he is sick.

So, seeing as how one of his motor skill goals is "Uses mobility skills to go after a toy during playtime", we did not get excited to see Alan use a roll/ pivot movement to get himself into position to reach an object the other day. And even if he did, this object that he grabbed was certainly NOT a bag full of ammo that his father had just purchased.

I do not ever feel a twinge of jealousy when I see photos and stories of "normal kids" getting to do fun things like eat on their own and crawl around getting into trouble.

I did NOT just publicly share my religious disillusionment on my blog.

I am not anxiously waiting for Season 4 Disc 4 of Battlestar Galactica and for Season 4.5 on January 16. That would make me an uber geek.

See the Not Me! button on the left to find where Not Me! all got started.

Life is Not Beautiful

2009-01-11T16:58:00.000-08:00

"Isn't he a miracle?"

Well, no. I’m not okay with chalking up my son’s life to a religious talking point. I do not believe it is a miracle that he was born with a heart doomed for failure. That he suffered for months. It is not a miracle that an O+ child somewhere who would become Alan’s donor lost his/ her life way too early. It is not a miracle that while Alan successfully made it off ECMO support after his transplant while the other half of children in a similar situation do not. It is not a miracle that children die every day from diseases that are not their fault. It is not a miracle that millions die every year from malnutrition while we have plenty.

I don’t dismiss a divine worldview of existence. That is probably what I lean toward being true (although a chaotic and random universe sometimes seems to better match my observations.) I just do not understand how we can attribute only the good events to providence and not the bad. Every lucky break is not because enough people were praying. I don’t think every travesty that occurs is justified because it brings glory to the lord. I don’t think genocide is ever okay and I don’t think I can really say that I respect the god of the Old Testament.

I do not think that everything that happens has some kind of redeeming value. If we are going to acknowledge the miracles that we see, then it is only fair to recognize the non-miracles as well. They happen every day too.

Reminiscing

2009-01-11T16:09:00.000-08:00

on a day long ago when my buddy Alan liked food. He drank his bottle. He explored new and different tastes and textures and enjoyed the experience.

That image just looks nothing like today. Terror strikes when he sees a bottle or sippy cup get too close. He'll tolerate a few bites of food but anything with an unusual texture and he'll gag it up.

At this point I'm so beyond frustrated. I try all the suggestions and get nowhere.

And I'm so sick of the advice referencing terms that have no relevance on our life, like "dinner time" or "bath time."

It looks like we'll probably go through with getting a g-tube in sometime soon. And we'll be seeing the Eating Disorder clinic at our Children's hospital. That's where I'm putting all my hope at the moment because I don't know what else to do. I think at this point its clearly a behavioral/ emotional issue that we probably continue to contribute too. All the trauma he's experienced probably doesn't help either - poor kid.

He's being tough. He's making progress growing and developing - getting stronger, learning play and do some things on his own. It just feels so agonizingly slow.

Here's my cutie today: I'm so proud of him - I just feel so bad that he has to work so hard to have a normal life

Christmas photos

2009-01-11T15:32:00.000-08:00

Checking out the presents ahead of time.

I bet I can guess what's in here!

Christmas Eve - first present.

Checking out the Christmas Day santa stocking spoils.

Christmas Night.. "If I have to open one more present!! And if you guys make me try it on..GRRR"

Merry Christmas.

2008-12-24T12:10:00.000-08:00

Ya.. that's it. Photos to follow I'm sure

Random updates

2008-12-10T21:46:00.000-08:00

Things have been a little crazy. Thus my lack of posting. Alan's been a little sick for awhile but nothing too serious. He just hasn't been feeling 100%

And I decided spontaneously one afternoon to chop off all my hair.

And then this week I started my new job. I'm still excited and I think I'm going to love it!

Not Me! Monday

2008-12-01T14:24:00.001-08:00

Click the link on the left to see the original Not Me! on My Charming Kids.

I did not eat two chocolate cakes within a few days to celebrate Thanksgiving.
I did not wake up at midnight last night to clean up vomit.
I did not consider using pillowcases as wrapping paper.
I did not just send an angry email to a church.
I did not join http://www.rememberthemilk.com/ last Monday only to completely ignore it as an organzing tool all week.
I did not register for classes at the local community college at 530 am to "beat the rush"

Happy Thansgiving!

2008-11-26T20:22:00.000-08:00

This is our new awesome fun toy. Well its not really new, its used and we've had it sitting around since before Al was born but we just pulled it out. Since we don't have any good doorways to hang it from, R rigged it up with cables to the banister and made it pretty secure. He loves bouncing in it! That's why we can only get a crappy quality picture - he never stops moving! He sits there and jumps and jumps saying "ess...ess...ess...ess" (yes) his newest word.

And yay! We got our shipment in from Cotton Babies. Here's Alan showing off all his spoils. Check out the new colors of the BG's. And he got a pair of BabyLegs (to which his father said "uh.. you got him leg warmers???" and a new wet bag which is nice but too small and some flannel wipes that we're going to give a try to.

Oh yes, and Thansgiving was good fun. We went to Grandma and Grandpa's house and hung out and ate lots and lots. We had an amazing delicious chocolate cake for desert too.

Happy Thanksgiving. Hope it was fun for all.

Not Me! Monday

2008-11-24T13:51:00.000-08:00

Its Monday again! Time for another batch of Not Me! Click on the link to the left to see where Not Me! got started.

Lets see here.. well since he is currently passed out in my lap, I have to say that I did NOT neglect to encourage naptime in the crib as outlined in my new daily schedule, and instead, every day this week allow my charming little toddler instead to fall asleep in my arms at the computer. That would not be a responsible way to encourage independent sleeping. Also, it would be a good way to excuse myself from doing any housework because, well, The baby's asleep. But good thing I didn't do that.

I did NOT spend a whole bunch of money on CottonBabies just because, well, its free shipping - you're practically losing money if you don't. And we desperately NEED the new cute colors of BG instead of the boring pastels we have now.

I did NOT set up a Christmas tree a week before Thanksgiving.

I also did NOT join RememberTheMilk because I don't need another site to spend time on and another excuse to make lists.
I also did NOT give my little boy a cold by snuggling too much. :(

I also did NOT as a means of acquainting myself with a better understanding of Middle Earth culture, eat a second breakfast today consisting of 2 Cinnamon rolls, because that of course would be silly.

Happy Saturday..

2008-11-22T15:57:00.001-08:00

Sorry - no new pictures today. Waiting on the new memory card. But how about an old one?

I just don't like to go too many non-photo posts in a row or I'll end up getting boring. This is from a photo shoot over the summer by our friend, an excellent photographer who did such a great job of capturing cuteness.. tubes and all.

By the way, you should check out this blog: http://www.mycharmingkids.net/ It chronicles the hectic and fun filled life of four beautiful children, BigMac, MckNugget, Small Fry and MckMuffin and their lovely MckMama.

Al went swimming today in grandma/ grandpa's hot tub once we cooled it off a little. He practically fell asleep in there. He's overall doing well. I'm surprised actually that the cold he seems to have caught from us hasn't dampened his mood. I'm kinda wondering if the Valcyte that he's taking (its an antiviral med that he's taking right now because his heart donor was CMV positive) might be counteracting the cold which is why its not hitting him as hard as it did mom and dad. Just a snotty nose and sneezes. His poor teeth are causing him some trouble. He's working on #4 and #5 right now on the bottom and is drooling up a storm. Apparently one of the side effects of Neoral, in addition to the excess hair growth is thickened gums which might be making growing teeth all the more painful.

I've also decided to get more organized. I've started sketching up a daily schedule to try to stick to as far as feedings and nap and setting aside a little more structured time for playing so we can work on some of his motor skills. Also, I know I'm a big dork and he can't even read but I made flash cards of the 8 words we decided are important to try to teach him:

1.mommy

2.daddy

3.binky

4.eat

5.drink

6.ouchie

7.hugs

8.poopy

Sick!

2008-11-21T17:11:00.000-08:00

No photos today. Our main memory card died the other day and we're waiting for a new one we ordered.

But, R and I have had a cold for a few days. We were trying really hard to keep it from Al. Washing our hands and not getting in his face at all. But its looking like he has caught the bug - he's had a runny nose all day. Hopefully he'll get over it quickly. We've been pretty boring the last few days just hanging out trying to recover.

Um..

2008-11-19T12:24:00.001-08:00

I passed!

CNA Test

2008-11-18T21:00:00.000-08:00

I take my test tomorrow. There is a written section in the morning and then a skill test in the afternoon where you have to do 5 out of 24 possible skills correctly. I've studied over and over but I'm still a little nervous.

Once I pass I get to finally get officially offered my new job because they have to have someone who is certified. I'm so excited!!

Not Me! Monday.

2008-11-17T11:15:00.000-08:00

OK.. here is my first try at this. These are all the things that I did NOT/ do NOT do.

1. I did not give two other moms dirty looks at the hospital this morning for arriving at the lab 15 seconds before us, thereby securing a significant place ahead of us in line for Transplant Clinic today and getting to be outta there sooner on such a busy day.

2.I do not find myself out and about, starting to make a phone call and feeling a wet, slimy goo against my ear because my son likes to use the phone as a chew toy.

3. I do not bribe said child to eat something.. anything by mouth by giving him smashed oreos and ice cream in lieu of fruit/ veggie purees.

4. I do not play this: http://www.youtube.com/watch?v=HIYaxG_YZDg in one window over and over while screwing around online on the other.

5. I do not force my 1 year old to stand in as a pretend patient to practice all of my CNA skills on.
6. I did not spend the entire weekend using disposable just because I was too lazy to move the cloth diapes from the washer to the dryer.

Click on the link to the left to check out the original Not Me! at My Charming Kids.

Happy Sunday Evening

2008-11-16T17:20:00.001-08:00

Sorry I haven't posted this weekend, but that's because I was working on a super awesome new blog!!! http://agtake1.blogspot.com/ going back in time and explaining Mr. Al's story and his medical drama and his cute baby pictures.. and the scary hospital ones as well. I decided if I'm ever going to get this stuff all written out I better do it now while I still motivated and sorta remember.
Not too much to tell.. that took up much of my weekend which made me realize how deficient I am at html.. grrrr R and I went to see the new Bond movie last night. It was okay.. not nearly as good as the last one though.

I take my CNA test on Wednesday. I'm so nervous - I keep going over and over my notecards. I'll be bringing them along to the clinic visit tomorrow to drill it into my head better and I'm going to make R get his blood pressure taken a bunch of times. Once I get that taken care of, I can get things set up with my new job.. and start working again soon.
Although this unemployment has been refreshing - really need to start making some money.

Lovely - I will be back tomorrow for my first attempt at an official NOT ME Monday.

First Snow

2008-11-14T08:52:00.000-08:00

Playing in the Snow
Yay. Super exciting. We were a little worried it wasn't going to happen. Very unusual around here to have no snows in September or October. R went in to the shop to work this morning so A and I thought an adventure walk in the snow was in order. So after a cup of coffee for mama and a feed and meds for A while watching some WonderPets we bundled up and went out into the winter wonderland.
Not a huge snow by any means but its A's first snow to see since he's been a big kid. We wandered around and checked out the playground. When Alan's a little bigger we're excited to get to go on the swings. Not much to do with everything covered in snow.

So, as you can see - not a big snow by any means. Not even enough to cover the tennis court but a pleasant little surprise to wake up to. Here comes winter!

NOT ME
Oh and one more bonus. While it may not be Monday yet, this can't wait.. I need to share a Not Me a few days early. ..

I most certainly......

...indubitably

.. did NOT...

feed a toddler as one of his first foods....

an Oreo!

Nope.. NOT me. (And NO, R and I didn't go through almost an entire pack in under 24 hours)

Overslept our alarm.. oh no!

2008-11-13T13:37:00.000-08:00

We had a rude awakening this morning. Mondays and Thursdays are hospital mornings and we usually are up by 6:00 and out the door between 6:30-6:40 to arrive by 7:30 for labs. Well last night we were up late because I had a minor case of insomnia, up reading recipes from Mckmama's blog and Rob was experiencing super insomnia trying to decide whether to get a new riffle for hunting before new Prez O reinstates an assult riffle ban.

Well, I don't know what happened to the alarm clock but I opened my eyes to the clock reading 6:40. I dragged the guys out of bed, we dosed out the feeds and the meds and threw Alan in the car in his PJ's. Somehow traffic was great. We made it to the lab at 7:40, back into the clinic at 8:15 ish and were out of there before 9:30 which is a record for us. Alan didn't even get to finish watching Little Einsteins.

We made a stop on the way home to get take out Blue Sky food. My breakfast burrito was delicious. Then Alan and I took a nap on the couch watching the history channel which has made me groggy ever since!

Here's some random cute photos just for the heck of it.

Here's our scholarly boy last night learning his animal words:

Home Cider Brewing Fun

2008-11-12T16:22:00.000-08:00

Backtracking a little but here are some photos from cider bottling last week. We made apple cider as our first attempt at brewing on our own. It was pretty easy compared with beer. Its pretty good - tastes like a dry apple wine. I think these will be our Christmas gifts for family. The name of our cider :Alan's Apples of course!

Here's a finished product!

Me filling the bottles
Rob showing off the equipment.

That was the big jar we brewed the cider in.

Frosting, Notecards, Etc.

2008-11-12T16:08:00.000-08:00

Well today I managed to keep the computer off for a good part of the day. A way to not be tempted. I got several loads of laundry cleaned and put away and cleaned both bathrooms which was a major accomplishment for me - the non domestic.

Then this afternoon I made notecards for all my CNA skills - such skills as helping with bedpan, blood pressure, cath care, transferring client from bed to wheel chair, etc. I think I'm pretty much there in terms of memorizing the procedure for each of the skills. I wanna make sure its second nature to me when I go to take the exam. Mmm.. and I've been eating some frosting this afternoon from our fridge.. Yum.

Alan's done a little eating. The doc suggested not worrying so much about timing when he's hungry and just give him something every time we sit down to eat a meal. He had some yogurt last night and then this morning some banana oatmeal with real milk!

I'm officially a blog failure..

2008-11-11T14:07:00.000-08:00

And I swear I'm trying to fix that and pick it back up. Things have been just slightly crazy lately. Just a quick summary update - Alan had

a mini-rejection ish episode about a month ago. He was treated with IV steroids and bounced right out of it. Off oxygen and off a whole bunch of his meds at this point.

Then - a few weeks ago, I finally was laid off. The death of the real estate industry caught up to me. Not too bad on timing because I just finished my training to be a CNA. I take my test to be certified in the state next Wednesday. I'm pretty nervous because I actually have a job lined up - which is contingent upon me passing and getting my license.

Mr. Al just had his first real Halloween and decided to go as Superman. No outings for us. We just stayed home and waited for the trick or treaters that didn't show up. Zero. Seriously - we live in a condo complex full of children - how hard would it be to hit up your neighbors for candy. Well 5 bags of candy got left to us to take care of which is never a good thing.

Not too much else exciting to report. I was really hoping that my time of unemployment would bring about a flurry of domestic activity on my part. No such luck. Still just as much of a slacker without working. We're lucky to keep the little guy fed and medicated and maybe a couple loads of laundry done a day.

Latest project is trying to get this guy interested in food. We just saw his GI doc today and we've decided to give dairy a try. maybe he'll be a bit more interested with some yummier options to taste. Might have strawberry yogurt for snack in just a little bit and see how that goes over. Here's a shot of him one tube-less evening before we replaced one of the NG's he'd yanked. And here's my cute little executive office assistant sorting out the sticky notes.

Thursday

2008-09-11T09:27:00.001-07:00

Okay Alan came off ECMO yesterday which went pretty well. It was rocky at first getting everything balanced once he was off but he was very stable all throughout the day. Tried yesterday letting him be unparalyzed but it made his pressures go up a little. This morning he had his chest closed. He's looking awesome to us. They'll try again with getting him off paralytic so he can do some wiggling. Alan's a champ. Now that the chest is closed he gets to move forward with the immune supression. He'll have his immune system wipped out so that he can start over with the body hopefully not rejecting the heart.

Latest on Alan on Monday

2008-09-08T13:34:00.000-07:00

OK.. sorry I haven't been able to do any updates for awhile. The internet at the hospital and my brain are both not working very well so I might not be able to get on much.
So as far as transplant, we got called a little after 11pm Saturday and he got into the hospital around midnight. A doctor of his left around 430 am to the location of the donor to check it out and harvest it. He went into the OR around 830 am Sunday and got started. The heart arrived around 1130 ish - don't quite remember. It was a very long procedure. Besides just transplanting he required a lot of reconstructive work to his pulmonary arteries and vena cava that were all jacked up. I think he got out around 6 pm.
So, what happened last night around 11-midnight ish, his blood pressure plumitted putting him in cardiac arrest, to the extent of needing to call a code and about 30 seconds of CPR. This episode was likely caused by gause left in the chest to soak up bleeding - compressed the new heart to much to function properly so the sponges were removed and he started doing much better.Then as time went on, his heart was working really hard - kept going back and forth between better and worse. Finally at 8 am Monday, he was put on ECMO which is life support for the heart and lungs. The goal will be to only stay on it for about 48 hours to give the heart a rest. The major risk to that is bleeding, particularly to the head. So far though no signs of excess bleeding.It sucks that he's on the support but for having to be on it, he's doing well in everything else.He's got some awesome docs. The surgeon who worked non-stop all day in the OR on him, sat in his room all night watching his monitor and pushing the syringes of blood volume Alan needed by hand.
Hopefully things will stay about the same for awhile as we get him some rest and then hopefully within a couple days get him weaned off the support and his heart can try working on its own again.

Yay

2008-09-07T03:24:00.000-07:00

It looks like the transplant is on. It sounds like a viable heart. The surgeon is on his way to get it and he'll probably be in the ER by 8 am!

Hospital

2008-09-07T00:51:00.000-07:00

Well.. we are at the hospital now. Alan got a call that there is a potential donor and got to the hospital at midnight. He's admitted and gotten his blood work and his first dose of immune supression but we haven't heard anything definite as far as if its gonna go through or not.

More info to follow. We're just hoping it goes forward.

Bubbles

2008-08-31T12:16:00.000-07:00

A relaxing and eventless labor day weekend so far. Yesterday we got some bubbles for Alan to play with out on the deck. He really wasn't so sure what to think at first but then he got more and more curious and started to have fun with the whole thing. He's been getting stronger and stronger and doing a great job at sitting up. I love the age he's at. There's just so much wonder in his eyes exploring the world. Ooh and now he's got 2 awesome little teeth on the bottom.

We've been pretty boring lately not being able to go anywhere. I've had way too much time on my hands to get all political. Its fun for me though because this is the first time in my lifetime I've ever seen an election that really mattered this much. Having the DNC in town was really exciting. It made the whole city pretty crazy. I would have loved to try to go to the last night of it at Invesco field but things are a little too crazy here to do anything like that. I'm excited to watch the RNC next week too.

birthday

2008-08-23T08:43:00.001-07:00

Yesterday was my birthday.. yay. That means its almost Alan's birthday too. It was cool. I got a REI purse thing that I'd wanted and homemade BBQ Bacon Spinach pizza and a giant chocolate cake and this interesting concoction made from Grand Mariner and Vanilla Coke.. Yikes! And watched more Olympics and Battlestar Galactica.

Here's my birthday present. I love it!

Oh and the biggest news.. Alan's working on another tooth! Its been bugging him and as of last night, his second one had just popped through. They are so cute. Still kinda crooked.

He's finally getting a little more rambuncious about wigglying around trying to get into trouble. Here's his new favorite toy. His wipe box.

Well, happy Saturday.

Yay..

2008-08-16T15:07:00.000-07:00

First time blogging.. here we go!