I've seen it work on other blogs.

As it is now obvious that I can't be trusted to post here in a timely and consistent manner let's just see if I can't ram a few blog posts worth of stuff down your bloggy gullet.

Issue the First: The Celtics.

My reaction to the Boston Celtics' playoff run of which I watched nearly every game? . . . You're living in the past man, the Red Sox are only a game out of first place. Basketball season is sooo last night. (My post in which I respond to how wrong I was here to follow.)

If the side effects are my entertainment, count me in.

Now this one definitely deserves its own post and will get one soon.

I've been thinking a lot about the ipad lately and I think Liam needs one. The interface and its portability are perfect to be used in his occupational therapy and development. With Liam's poor vision, putting DVD's on our TV to entertain him is pointless. The ipad could be positioned close enough for him to really see helping both to entertain and teach him. But more than that I am interested to learn if there has been any research into therapeutic ways to teach developmentally disabled children with identifying shapes, numbers, letters and sounds in any new and interactive ways. We often use flash cards with Liam to track his vision and help him practice his small motor skills. I would expect that pressing and selecting objects and moving them around on-screen could be used in many more positions and placements for the child. Grasping and holding can tire Liam out quickly. Pointing, touching, and sliding may make for longer work and play sessions between rests while adding to and not replacing his arm and hand exercises.

I think it could also be used in aiding communication for children like Liam. Press this section of the screen to tell mommy your diaper needs changing press the green box to say 'I'm hungry'. Press the red section after a kiss to tell Mommy that you love her too! Think Stephen Hawking but simplified. Although he can make sounds vocally, Liam's diagnosis may prevent him from "speaking" to his mom and I. He can still communicate needs and wants. He can still appreciate cause and effect relationships and I'd like to see if the ipad interface could be customized in ways that flash cards and the big buttons and switches (which we currently use) can. As he grows older I think this could come in handy.

Does anyone (out of the 4 or 5 of you who read this blog) know of any research into this, or apps for the ipad that are designed for this? I plan on asking our occupational therapist and speech therapist (who handles all sorts of ways to communicate other than speech.) if they have seen anything of the sort.

This is not a veiled attempt at justifying the purchase of an ipad. As much as I would love to go and buy one, that is an expense far too great for our budget and I don't expect to have one for years. But I've been thinking about its educational potential for Liam's future and am curious to find out more. Karin and I have always held to the same mission of nearly all parents; to give Liam every opportunity and tool that we can to help him achieve his fullest potential. If the ipad figures into that I'd certainly like to know it.

I've had similar questions regarding the wii system but the remotes are far too heavy for Liam and he's still stuck on the easy level for Guitar Hero (gotta get the pinkie finger involved kid.)


Read, Read, Read

I started the year tearing through books. A clip of almost a book a week. I haven't read any fiction in a few months now and only recently figured out why. Ever have one of those errands that every night before you fall asleep you remember that you need to do but by morning its gone and another day goes by without it accomplished? Yeah, library books are like that for me. I think I am not reading because of my guilt about overdue library books. Tremendously overdue library books. I just forget to throw them in the car in the morning to make my way there, but every night I remember.

The worst part though isn't the impending fine as I intend to make full restitution. I fully support the Library and will love giving them a bit of money the worst part is that somewhere someone may be waiting to read Boneshaker by Cherie Priest. (read her blog here) and can't because I'm a big irresponsible jerk. The book is all kinds of awesome by the way which makes me feel even worse about the whole situation.

Speaking of Librarians....

Park the car over at Makeout Point.

Please support Denver band Makeout Point by checking out their website and hopefully buying their record at itunes. The drummer (whose super hero disguise happens to be that of a librarian) is my only true lifelong friend. Some family you get to choose and even if I didn't love Patrick like a brother I would tell you to check out Makeout Point because they do in fact, rock the house.


Moving Day?

Contemplating a move from blogger to WordPress but not sure it would be to any great benefit unless I get my butt in gear and actually, you know, write a blog. If you've got any thoughts either way send them along.

Eating calories instead of burning them.

A day off from work today. All day yesterday Karin and I talked about leaving the house at the same time together today. A real treat since it hasn't happened in months, the plan was taking off to hit the gym. We slept late since we've grown pretty comfortable with our new day nurse (just in time for the agency to cut back her hours of course.) and got all gussied up in our gym clothes and headed out. Somewhere along the line our plan changed though. Somewhere between getting dressed in our gym gear and actually arriving at the gym the plan changed into going out for breakfast. A meal in a restaurant. A waitress taking our order and bringing food to us at our table?! I think we both forgot how much fun that could be.

bad blogger.

I guess all it takes to get me to blog again is a truly terrible day. Some increased seizure activity and random fever spikes had us spending most of the day in the Dr.'s office and a trip to the hospital for an x-ray. The x-ray was complete overkill if you ask Karin and I but we completely understand the doctor's reasoning for ordering one and his need to check it off the list. We know our boy and we know his breathing better than anything. If he were having respiratory symptoms we would see it in his ventilator readings and pulse oxymeter. We shot home as soon as the films were taken knowing that there would be no need to admit Liam. The doctor called three hours later to tell us what we already knew.

The kid caught a bug. He got sick. It happens. With all of the extra information we have about Liam's body it is difficult for us to accept that we can't point to a specific cause. Guess what? Kids get sick. Happens everyday, but when that kid is on a ventilator we have to worry about x-rays and white blood cell counts. Yippee.

He's doing much better now after an afternoon of sleep anyway. We've been taking his temperature every few hours to watch for another spike but things have been just fine since we returned home. He's definitely uncomfortable and possibly in pain. I can tell because his heart rate is a bit elevated but it's nothing we can't deal with at home. The pain and fevers can both raise the likelihood of seizures though so we watch, and we hope he gets the rest he needs to fight off whatever bug he's picked up.

It's a shame I waited so long to blog. We have enjoyed a bunch of awesome milestones and events including Liam's first backyard cookout here at the house to celebrate a special mother's day and the anniversary of his initial trip home from the Nicu. We had a great time at a special private event at the local zoo for kids who have spent significant time in the Children's Hospital; and have made large steps forward in his therapy and development. All of these stories would have made wonderful blog posts (and maybe still will someday) but I get tired at night. Having an 18 month old at home is hard, ask any parent, and sometimes I have to decide between sleep and blogging. I used to think I could do both, I'm getting wiser in my old age.

G'night all.

Saying hi to swingsets.

Karin is asleep upstairs, Liam is asleep in his crib next to me and I am going to post quickly before trying to get some sleep myself.

Haven't put any photos up in a while. Let's fix that shall we,

Want to see the Greatest Picture Ever? I thought so...

That's the greeting I got from my boy when I met him and his mother at the Dr.'s office on friday afternoon. Most of his Doc's have offices within a couple hundred yards of my office and so Karin packed him up and brought him all by herself and I met them once they got there. Karin snapped this with her phone when I sat down with Liam in the waiting room and said hi. Look at that grin. The picture, of course, has been on my office computer screen ever since.


Over the weekend we also got a chance to go to a special park that featured swings and playground equipment for kids of all ages and disabilities. The event was put on for families of the VIP program (Ventilator Integration Program) and was a chance for us to hang out and meet families going through very similar situations. We were able to finally meet in person a family that we have only known through facebook and text messages who have very similar circumstances. They're good people, and I'm happy to have friends who understand what we're going through right now.

Liam got to ride on a swing for the first time! It was a neat swing that held his whole stroller on a platform chained to the swingset. His mother and I took turns pushing while the other snapped photos. He seemed to enjoy the breeze while swinging through the air. Awesome stuff indeed.




I'm tired now and need to get some sleep so I'll put one more up and bid you all a good night. Sleep tight.

Bittersweet

An employee surprised me the other day by playing this song in the kitchen the other day. I'm sure I haven't heard it in years and I forgot how much I love this tune. Its been running through my head ever since. Because of that I put it here for you now. Enjoy.

The Back 40.

Last year I planted my first garden. I thought that was pretty neat. I had big plans on eating smarter again after spending 5 months eating almost nothing but hospital cafeteria food. So in the middle of June with visions of august meals, I planted three types of tomatoes, green beans, eggplant, cucumbers and summer squash. I didn't know at the time that I would go on to spend the next 4 months eating nothing but a different hospital cafeteria's food. Bummer.

All of the plants grew surprisingly well given my level of neglect. Had I watered them during the dryer weeks of the season we would have had fresh ingredients for a majority of the summer and late into the fall. Every plant grew large and fruitful but was never harvested. Alas, I let a lot of crops die on the vine but all of that dead fruit helped to fertilize the soil in that area. This year I am eagerly anticipating the growing season. I've done more yard work this spring already than I did last year and hope to continue that all year. I can't wait to get the garden really going again. Next weekend the plan is to move my compost pile and turn the garden's soil. Hopefully I'll have enough of my own compost to hit all the areas but I'll probably need to hit Benny's for some fertilizer.

My father has a bunch of tomato plants for me that he grew from seed in the greenhouse. He also has some spinach plants and I'll steal a few of those as well since spinach currently is the base of my lunch every single day at work. I'll definitely go with green beans again since I love eating them and there were tons of them last year. But after that I am not sure what else I'll be growing. I'm open to suggestions. I also have to find a place for my two gooseberry bushes. When I was a kid I used to make myself sick eating gooseberries in my nan's yard and now I have a few bushes of my own from her yard. They're still in buckets as we speak though and I'm not sure where I want them yet. Already got fruit on them though so that's cool. Gooseberries were the crazy special ingredient on a recent episode on Chopped - also cool.

In the year before Karin was pregnant with Liam, she and I had each lost 50 pounds by exercising daily and eating all the right things (fresh, fresh, fresh and unprocessed) while staying away from all the wrong things (fast, processed foods). Then we had a child; and stress dictated diet more than anything else. We're just now getting back on track. We both have been getting to the gym 5 days a week and the snacks in the house right now are limited to fresh fruit and greek yogurt. While last year I was glad I planted even if I didn't end up harvesting, this year I am excited to create meals with my own produce. Right from my own garden.

When you believe in things that you don't understand,Then you suffer.

Growing up I don't ever remember being a superstitious person. I guess my only superstitions have come from times of great stress.

I won't ever shave or cut my hair when Liam is in the hospital. If the itchiness gets really bad I will shave just where my shirt collar rubs my neck but no shaving of my face. You should have seen me the day we left the Nicu after 153 days. Grizzly Adams had nothing on me.

I only cut my hospital bracelets on discharge day. When you're seen in the E.R. they give you a bracelet and then you get another when you are admitted. Once admitted the ER bracelet can be removed but I never do. On long hospital stays bracelets can get kind of gross. Nicu bracelets used to have folded pieces of paper under clear plastic. The paper would start to stink after it got wet from hand washing. Nurses would constantly be asking to give me a new one but I always refused. Sure, bracelets can wear out and snap off, its inevitable on the long stays, but I only cut off hospital bands on discharge day.

I guess I only mention this now because last night I got to cut off a few bands and this morning I finally got to shave. Liam spent most of the last week in the Intensive Care Unit at Hasbro Children's Hospital. He's home now. It was a long, trying week and I am glad its over.

Mother's Day this year was supposed to be a very big deal because it was to be the first Mother's Day that Karin didn't spend in a hospital but unfortunately that didn't end up being the case. Liam's gift to his Mom though was getting well enough that she got a few hours at home with him in the evening of Mother's Day. The Kid always gets us the best gifts.

He needed to go into the hospital because of some GI problems. He's fine now and I'll spare you the boring details and medical talk.

I will tell you though that the universe works in very mysterious ways. Almost immediately after being admitted to The Unit (its what patients and employees call the ICU) we were approached by a few nurses and the unit's social worker and asked if we wouldn't mind talking with a few different families whose children either just got trachs or were about to get trachs. When Karin and I grappled with the difficult decision to put in Liam's trach it was conversations with another family who had been through it that got us through such a difficult time. Liam must have known that there were families in the hospital that needed our help. In only a few days we became very close with a few families. I am sure that we will see each other again as we already have plans to get together outside of the hospital. Being through what we have been through has given our families a common bond that few people in this world can relate to. You can never truly understand what its like unless you've lived it and so talking with anyone else in a similar situation is a blessing.

I do believe that we were sent to the hospital at this particular time to help these families but I'm not sure that the families know how much they helped us. Talking with them gave us a purpose while in the hospital. A mission. A distraction. If nothing else it made the time go by quicker and before we knew it, it was time to go home. Thank you Morgan's family and Becky's family. We will always remember how our families met. Don't ever forget that as much as it may seem like it sometimes, you are not alone.

It will take a few days for life to get back to normal. All three of us are exhausted and the house is a complete mess. Liam is sleeping now and Karin is upstairs doing the same. As soon as I publish this post I will stretch out on the couch next to Liam's crib and try to be the third. It shouldn't be a problem I'm not superstitious about sleep.