More Alan pics

Before getting to the Alan pics I wanted to do a little update on Dale.

He got a cold a couple of weeks ago that hit him pretty hard and has taken him a long time to get over.

But now he is feeling better and is back in Arkansas with Grandma. They are doing lots of fun stuff, and the best way for Dale and me to stay in touch is (surprisingly?) on the computer. We do Instant Messaging! It isn't quite as emotional for him as hearing my voice, plus we get the added bonus of him working on his reading skills and getting to play on the computer.

If I only knew how many more days it will be until I get to see him again I would SO be counting them!


For various & sundry reasons, almost all of which have to do with not being at home with my usual software, I am using my blog for photo hosting instead of loading very many pictures to Alan's CB page right now.

Now, explanation out of the way, let's get on with the pictures:

Alan, not far into one of his hard earned (by us) naps. Not only was it essential to get a picture to remind ourselves later that, yes, Alan does actually sleep, we wanted to document the placement of the foot. Feet & legs don't usually grow that way, do they?

Speaking of feet... I have a thing for baby feet. And this pic was just too sweet:

We've taken Alan outside to play a couple of times in the play area here at RMH. He loves it, and it is so good for all of us to get out. Here is is sitting atop a little slide. Can you see his little smile behind that mask?

Hanging on for a ride:

My little hobo. He loved, loved pushing this cart all over the place!


See how big the steriods are making his cheeks?

More pushing stuff around.

Made my day!

Wow!

MyfriendConnie at Smockity Frocks has passed this on to me!

Thank you so much! I am honored by this, as I tend to think of “Smockity” as one of those “A-list” blogs. Doesn’t everyone read Smockity? I know she is on my list of daily "must-reads".

And now I’ve been included in her list of Excellent blogs! Wow!

Now, other blogs that I find to be Excellent on a regular basis that I would like to pass this award on to:


Heart of a Mommy

Run the Earth, Watch the Sky

A Happy Home

Candid Diversions

Eskimo Kisses

Faithful Chick

A Familiar Path

Where my Treasures are

Here are the rules for passing it on…By accepting this Excellent Blog Award, you have to award it to 10 more people who’s blogs you find Excellent Award worthy. You can give it to as many people as you want but please award at least 10. Thank you out there for having such great blogs and being such great friends! You deserve this! Feel free to award people who have already been awarded…

It's like" Groundhog Day", but without the piano lessons or snow

I haven’t thought about it until this very moment, but that is really a very good analogy. I could be living my own version of the movie “Groundhog Day”.

It’s been my mom and Alan and me living in this one room at the RMH for 8 days, give or take.

We have:
2 queen size beds facing each other from opposite walls
2 nightstands.
One chest of drawers.
One portable play/pen crib.
One wicked wicker rocking chair. You get a limited number of rocks before it travels itself all the way to the wall.
One highchair
One minifridge
One full-size closet.
One long counter, with one sink, and two tiny, shallow drawers.

Alan cannot be around crowds while he is so fresh out from transplant, so we keep him in the room 95% of the time. That means at least one of us, and usually both, are in the room…. 95% of the time.

We have gotten permission to eat in the room, which is nice, because before we were taking turns eating alone in the dining area. Not fun. Now we take turns going and filling a take-out box or two and hauling it back to the room, hoping nobody notices, since that is clearly against the rules. I feel like wearing a sign - “I’m feeding the baby in isolation.”

RMH has wireless internet, but for some reason it doesn’t reach down our little hallway, so no getting online from our room. Where we spend 95% of our time. There is a little “Adult Living Room” just across the hall from our pod of rooms/bathrooms where we escape to get an internet fix. And just so you know, apparently some people consider watching tv “living” while doing stuff on your computer doesn’t count. Which would mean those people think that people doing stuff on their computer should clear out of the “Adult TV Room” so other people can watch TV. Ummmm… no. The sign clearly says “Living Room”, not “TV Room.” Oh anyway. Ignore my issues with other RMH residents.

Back to our days….

We find plenty to stay busy and pass the time. Diapers. Morning meds. Breakfast. Playing. Cleaning house. A nap for Alan, if we’re lucky. Lunch. More diapers. More meds. More playing. A nap for Alan, if we’re lucky. Diaper. Supper. Play. Diapers. Meds. Trytrytrytrytry to get Alan to go to sleep for the night. Fall into bed exhausted. Wake up with Alan every 1-3 hours. Get up and start over again the next day.

We mix in a little computer time. Read a magazine. Meet a parent of another sick kid.

Yep. Groundhog Day. Over and over again. Hey! The real G-hog day is just a few days away! Instead of waiting for a rodent to predict the duration of winter, I think we’ll just send Alan out. If he sees his shadow… well…. I guess I’ll get started on those piano lessons!

Alan eating his celebratory cake just moments before leaving the hospital last Friday. He hadn't been too interested in food, but when he saw this cake he HAD to have it. And we had to wait to leave until Alan had finished his cake because you can't wear a mask and eat cake at the same time!
In the van, leaving the hospital. Alan loved this ride. It was just a few minutes long, but he laughed and squealed the whole time, pointing and looking out the window. It had been almost 3 weeks since he had been outside!
Playing in the room at RMH.

Wearing his mask like such a big boy. Alan knows to get to go you have to wear your mask! (He will be wearing his mask any time he is in public for about 3 months.)

Alan's meds. He gets about 9 doses in the morning, 3 in the afternoon, and around 7 in the evening. It was more than this just a week ago, and more will be dropped in the months ahead.


Alan and his staples. Half were removed before we left the hospital, and the other half came out yesterday.
One of Alan's favorite toys, borrowed & sterilized from the RMH play room. This was taken on Tuesday, 24 days post transplant! Aren't babies resilient? And isn't God amazing!

Tag! Part 2

I didn't tag 3 more people in my previous post... so...here goes...

I tag:

My sister, Kristin
My cousin, Michelle
My blog friend, Kara

I hope ladies have time to play along... I can't wait to learn something new! :)

Tag!

I don't want to say this, because I've already started two other posts this week with the exact same words..... but..



Guess what!? :)

I've been tagged! It's my first tag on a blog. My friend Sam sent me an email and asked me to join in by listing 6 random things about me & then tagging 3 more people.

So....

1. I love cooking. Actually, I love food. So I like to watch a lot of Food Network and imagine what it would be like to make the food I see on there, if I had the time and money (some of those ingredients are expensive!). And occasionally, I actually DO make something I've seen! If you like food too, you can go to this website and click "Sign Up" to get free magazine subscription with lots of recipes!

2. Even though I love food, there is one that I just don't eat..... watermelon. I know - this is a great shame to anyone living in the south. I try at least a bite and sometimes a whole slice every summer. I have done this for the past 20-something summers. And every year is the same. No thank you on the watermelon. Don't tell my kids. They think you're supposed to like everything.

3. I've been to New York City! Pretty big news for a small-town Texas girl who's only been on 2 major flying trips. Greg and I went to visit his uncle not long after we were married. We bought tickets for a Broadway show in a lobby at the World Trade Center, just 4 months before it wasn't there anymore.

4. I've never been snow skiing. In fact, I have rarely, if ever, seen loose, fluffy, powedery snow. Just that heavy, wet icy stuff we get around here.

5. I had to get a tetanus shot once because my pet hamster bit through my pinky nail. There is a story with that, but I'll save that for another day. I will say that I fared better than the hamster. He lost an eye. (I didn't do it!)

6. I want to learn to knit or crochet. I have tried to teach myself to crochet on 3 separate occasions. The farthest I ever got was about halfway through a hat. It looked more like an over-grown floppy hot mat. If anyone has any tips (or better yet, lessons!) they would like to give, I would more than happily cook something yummy for you as a trade.
Even if it involves watermelon. :)

A study in contrasts. Or - Be careful what you wish for.

Dale, at 1 year old -

Terrified of any toy that makes noise. Music, sound-effects, anything that has batteries. Terrified.

Alan, at 1 year old -

Enjoys surrounding himself with as many light-up, music-playing, noise-making toys he can find and pushing all the buttons that make them all play. All at once.

The word cacophony comes to mind.

As well as the word headache.

Looking back, looking ahead

Guess what I have learned?

You know flashbacks? They aren't just handy literary or tv/movie story-telling tools. They are real.

We've been coming to Children's for a full year now, and have often reminded ourselves of different aspects of our first trip here. But nothing has brought those memories back like being here the last 3 weeks has.

I walk past a paticular waiting area, or pass through a certain hallway, or see Alan have a procedure, or watch Dale enjoy the trains, and I get images of January 2007, just as clearly as if it was last week.

Flashbacks are real.

And they are very much like you see on tv. Not as dramatic, of course. Or traumatic. But for a brief moment I find myself completely absorbed in a memory. Same place - different time.

So much has changed since last year. This exact weekend one year ago we were in wide-eyed wonder. It was the first time we had ever set foot inside this hospital. We had already sent Alan in for one surgical procedure (a liver biopsy) and were awaiting a surgery on Monday that would be a diagnosis, and possible treatment. We were learning so much, so fast. We had no idea what lay ahead. Every thing was new.

Even then, when everything was so new and scary and we had so much to fear, God placed his peace in our hearts. It was amazing. We knew better than ever before what it was like to actually feel the prayers of others. The peace was amazing. It still is. The peace that passes all understanding has been abundant this past year, and has come in heaping helpings these last few weeks as well.

January 22, 2007 was a Monday. That was surgery day. The first report from the OR we heard confirmed Alan's diagnosis: yes, it is biliary atresia. The next step was to go ahead and perform the procedure that would be Alan's lifeline for a length of time that God only knew. It might never work. It might work for a short period of time. It might work for years and years. And when it no longer worked? What would the option for Alan be? Transplant.

We were devastated. Heart broken. And, initially, afraid. (Think of Peter taking his eyes off Jesus and seeing the waves instead.)

Then a kind, wise nurse stepped in. She listened. And then she said, "A transplant is not a death sentence." She explained what pediatric transplants are like today. And then she said her husband had even had a kidney transplant a few years back!

Through the remainder of 2007 we learned so much. We learned more about Alan's condition. We learned more about liver transplants. We learned lots about kids that have had liver transplants and thrived. We learned about precious little ones who did not survive the fight against liver disease and are in heaven today. More than anything, we learned to trust God and His wisdom and His timing.

Today I look at Alan and the scar that stretches from one side of his belly to the other, and reaches almost up to his breastbone. And I love that scar. His transplant was not a death sentence. The scar that it left behind represents a precious gift of life.

Alan's scar is not the only one that represents life. Our Lord has scars. In his hands. His feet. His head. His side. His scars represent life as well. Our sin should have been our death sentence. But Jesus took it as his. And then He did what we cannot - He conquered death. And He has the scars to prove it. Those scars give us life. A precious gift of life.

I don't know what the next year will bring. When I stand in January 2009, who knows where my flashbacks will take me? All I know is, I praise God that no matter what changes, He will be there. He travels ahead of us. He holds our future. and He is waiting for us with peace, love and grace beyond measure!

There are parts of my brain that seem to be malfunctioning

Hello Blog.

I miss you.

And I will be back.

I just simply don't have the brainpower for blogging.

But I'm not complaining, mind you.

Some randomness from my days....

- American Idol is some good tv that doesn't ask much of the viewer. Thanks Fox, for giving us 2 nights in a row. A whole 4 hours of entertainment without having to think or commit. Well done!

- A recovering baby given a tub full of soapy water in his bed will splash. A LOT. The whole bed will be soaked. But Mom, Dad, and nurse won't care a bit, because said baby is happy. And you have to fill the days some way or another.

- There is an actual process to putting on sterile gloves (and keeping them sterile). It takes practice. You can contaminate without even knowing it.

- Sleep is a wonderful, wonderful thing. I'm going to go get some now.

See you around, blog friends!

Would you like fries with that?

Guess what? Dale has come for a visit!

My grandparents brought him over Friday morning.

It was quite a joyful reunion for all involved.

We were thinking he would stay for a night or two, but after seeing him at the Ronald McDonald house and spending some time together, we're thinking maybe now he can stay a little longer. (another reason to love the RMH!!)

My grandparents explained to him in the car that we were staying at a place called the Ronald McDonald House. Of course, visions of golden arches immediately began to dance in Dale's head. Several of us took different opportunities to explain to him that it was NOT McDonald's, that there would NOT be any cheeseburgers.

This was especially important since his first visit was at lunch time. Satisfied that there wouldn't be any hamburgers, Dale informed us he would just have a cheese sandwich. We told him we were pretty sure they would have the stuff for a cheese sandwich.

10 or 15 minutes later we brought Dale in and got him registered at the front desk. He got a red bracelet to match Mama & Daddy's and got his polaroid picture made to go in the file with ours. The lady registering Dale was, of course, very kind and chatted some with Dale.

Dale, never the shy one, looks her right in the eye and asks, "Do y'all have any cheese sandwiches?"

She was kind enough not to be offended. I'm sure they get that a lot with the 4 year old crowd. You can't blame them. There IS one of those shiny plastic red-shoed yellow-jumpsuited clown guys sitting outside on a park bench.

The only problem is.... who knows what in the world Dale will order up next time we are in an actual Mc Donald's!

I've been inspired!!

So.... A few hours ago I was feeling rather uninspired.

Well, boy oh boy, I have found some blog fodder now!

If you read Alan's CB you know that we were able to get a room at the local Ronald McDonald House.

Wow. I have been using words like 'incredible' and 'amazing' to describe this place. If you are looking for a place to support or volunteer (in addition to your local church) then look no further than RMH.

These places are a true God-send to families of sick kids. Here's how it's gone for us:

At the beginning of our ICU journey, we had my grandparents and their RV just 45 minutes down the road. We got to get away, shower & sleep. Nana & PawPaw fed us like royalty! But then they had to go home and help take care of Dale and other things on the home front. (Thank you N&P!!! You were our lakeside retreat when we really needed you most!) :)

And then, after 10 days of camping out in Alan's room and the ICU waiting room, sleeping on a weird fold-out couch or two chairs pushed together, eating expensive cafeteria food, showering in an institutional-like public shower, and treking down a long hospital hallway just to brush our teeth, we were given a room at RMH yesterday afternoon.

Greg and I came over to do the orientation and get the tour and our key. I immediately jumped in the shower. In a REAL bathroom. Yes, a shared bathroom, but it looks like any bathroom that could be in any home anywhere. After getting cleaned up we were just in time for the evening meal. Different groups volunteer and donate or cook the meals. Last night was take-out pizza. We sat at a real table and chairs and drank out of real glasses!

After eating, we were anxious to get back to the hospital, where we insisted my parents take the first night in the real beds. The next morning, they arrived at the hospital, rested and showered, and with food from the House! The hosts insist that you pack a lunch, and bring food for those at the hospital. They brought Greg and I each a sausage biscuit, a poppy-seed muffin, and a carton of orange juice. What a treat!

Greg and I are spending the night at the house tonight. So here I sit, with wireless internet access. Freshly showered (I've had a shower a day for 2 days in a row? Impossible! And I even got to shave my legs!).

Supper tonight? Donated by a local hotel. Oh-my-goodness. Some sort of pork. Scalloped potatoes. Chicken breasts in a better-than-fabulous white sauce with capers and other good things. Huge ziti in a white sauce with sun-dried tomatoes. A vegetable medly with the hugest, freshest brocolli, cauliflower, asparagus, and tomatoes. Plus desserts out the wazoonie. Turtle brownies. Chocolate chunk pecan pie bars. And little raspberry/cheesecake squares on a chocolate crust that just made you go weak in the knees.

All they ask is that you give a little donation per night. And clean up after yourself. And do your assigned chores (ours are in the living room). And you can sleep. And eat. And shower. And play. And do laundry.

A pretty amazing deal. An undeniable gift from God. If you ever are looking for a place to give to others, please consider RMH!!

*It could probably go without saying, but I feel the need to throw in here that as whole-heartedy grateful I am I would trade in the whole RMH experience in an instant if it meant I could make this whole liver disease thing go away and take home a happy, healthy Alan right this very minute. But, ironically, it is that whole "liver disease thing" that makes me so grateful and appreciative of all RMH has to offer.

Keep on truckin'

I have to say... I miss blogging terribly. As I go here and there and do things throughout my day, little thoughts cross my mind and I think "I want to put that in my blog!" And then, when I find a quiet moment, all those thoughts that I thought might make interesting blog reading seem to vanish.

So I sit and all that comes to mind are things from the ICU. Sick babies & kids. Worried parents.

And lots and lots of medical words. Tacrolimus. Creatinine. Intubation. Sedation. They go on and on and swim around in my head.... even when I leave.

But those aren't the things that I want to fill my blog with. Alan's site is a good place for those words. To use them & explain them.

Here, I like to be lighthearted. Or share thoughtful thoughts. Things that are meaningful to me. Not spew medical jargon.

I think part of my problem is being away from Dale. A four year old is a great source of blog inspiration! I talked to him on the phone today. It took him at least half of the conversation to realize he was talking to me and not my mom (I was using her cell phone). He called me "Mimi" twice. Twice I explained to him that it wasn't Mimi. It was Mama. I think he got it the second time.

I stood at the 12th story window and talked to him about the cars I saw driving on the interstate. I told him I saw a UPS big-rig. This is how the conversation proceeded from there:
Dale: Did it have a double trailer or just one.
Mama: Double
Dale: Oh. Was it going left or right?
Mama: Left
Dale: Oh. Was it turning left or going straight left?
Mama: Going straight left
Dale: Oh. Was it going south or west or north or east
Mama: East

(I completely made that East part up, because I had absolutely no idea what direction I was facing, much less which way the truck was going. All I knew was I was looking OUT the window and DOWN at the ground.)

So with that, Dale was satisfied and we moved on to discuss other traffic for a while.

And I guess the lesson in all of this would be, if I would like to continue with my regular blogging while here in the ICU, I should talk to Dale more often. ;)

Dale? Homesick? No way!

Since you asked.... ;)

and since my mother-in-law (a.k.a. Grandma) has been kind enough to email us some pictures this week.....

Here's what Dale's been up to since we've been gone:

One of his new favorite activities.... Working jigsaw puzzles!
Talking on the phone with Mama & Daddy.
Coloring with Grandpa.
Eating ice cream.
Hi Dale! We miss you little buddy!
(and we're very glad you don't seem to be missing us too much) ;)

8 days & counting

One week ago right now I handed off my baby boy for a 6 1/2 hour surgery.

After watching him disappear down the hallway with the OR nurse, there was nothing much for us to do but head for the waiting room... and...well.... wait.
The wait started with 5 of us, and then 2 more added on, and then more and more. We were so glad to have visitors to help pass the time. We didn't spend the whole time stressed or sitting silently or anything. Yes, we were distracted, and sometimes tense, but we laughed and talked and ate too.

Every so often, phone on a shelf on the wall would ring. Greg was always the one to answer. On the other end was Alan's nurse in the OR, letting us know what was happening. The phone would ring, and the waiting room would go silent. Greg would listen, and then turn to us to report: "They just now got all his IV's and lines in and surgery is about to start"
or
"The old liver is out and the new one is going in"
or
"The new liver is in and blood flow is good. Just another hour or two to finish up."

At one point in the middle of the afternoon someone brought out Alan's old liver for us to see. I won't post a pic of that here. :) Unless, of course, you want to see it. ;)

Finally, around 7pm, Alan was brought up to ICU. Once he was all settled in, we were allowed to come in and see him.



And that is where we've been for the past week. Three people are allowed in Alan's room at a time. We take turns. We take shifts.

We've had visitors. We've had meals. We've slept (in all sorts of places, and all sorts of combinations).

Time will drag, and then time will fly. We talk on the phone. We do stuff on the internet (Praise the Lord for laptops!!!).

For all the medical stuff, you can go here and read the journal for the past week.

Or for the more random 'what we're doing' type info, check back here. Now that I'm all caught up on the story, who knows what I'll find time to write about. ;)

Hurry up & wait

After talking to the transplant coordinator at 2:30 Sunday morning about the possible liver for Alan, Greg and I both began to shake. We couldn't do anything for shaking. We cried, we prayed, we hugged our little boy, and then we got busy.

We began making phone calls. Waking up family members who had also spent weeks waiting for that phone call. We began packing. I was SO glad I had kept a packing list current (according to the season and whatever new stuff I had acquired or thought of bringing) on the computer. I printed it out and packed by it. Thinking was nearly impossible, so for me, that list was a lifesaver!



After another call with the transplant coordinator at 3:00am, we knew we needed to be on the way by 3:30. Whoa! So much to be done! My parents & sister arrived to help. We woke Dale up.


Time quickly ran out. We gathered around for a prayer and left the driveway at 3:40am. Aside from the apprehension for what was coming in the hours ahead, one of the hardest things was waving good-bye to Dale, him standing on the front porch in his pajamas in the middle of the night. Goodness, I love that boy.

We arrived at the hospital at 5:45 and made our way over to the ER. A nurse there whisked us into a private room, and before long, someone escorted us to the admission desk. We went through the usual admission process and were led up to the GI floor.



I answered all the admission questions and Greg went with Alan to get his IV started. IV starts have always been hard with Alan and this was no exception. Finally, on the 3rd try, there was success. Not much later, my parents & Kristin arrived. Alan was getting pretty restless and hungry. I didn't hold him since I knew he would ask to nurse and that was a no-no before surgery. Everyone else took turns entertaining him until he fell asleep on Greg's shoulder.


We were very surprised to find out surgery was scheduled for 10:30am. We had expected sometime after lunch. My grandparents arrived. We were told Alan would go into pre-op at 9:30. It was already 9:00!

More prayer, and off to pre-op we went. We were all allowed to go. Alan woke up and was in a great mood. It was such a blessing to be able to see him laugh and play as we waited to send him off into such a major surgery, knowing we wouldn't see him like this for days to come.





Things got a little tough when his IV went bad. The nurses tried to replace it, but didn't want to put Alan through too much and opted to have it replaced in the OR after he was sedated some.

And then, it was time. We gathered around for one more prayer time, and I handed Alan over to the OR nurse. We watched her carrying him away down the long, long hallway, pointing out things and talking to him as they went. Then through a set of double doors they went, and the hallway was empty.

Trying again - Getting the Call

Ok. Let's try this again. When I sat down yesterday to post, I didn't know what I was going to say. I just felt the need to do a "brain dump" as some bloggers call it.

And what came out was the story of the night we got the call. What started the whole ball rolling on getting us here in the first place.

And then I accidentally deleted the whole thing. Oops.

But in the spirit of 'getting back on the horse' I will now perform my second attempt. ;)

Saturday, December 29th
Early evening - the tension of waiting for the call had gotten really intense for Greg and me both. We have both felt it off and on for weeks, but this lingered for several hours. The magnitude of what we were facing, and the uncertainty of the timing of it was really weighing on our hearts and minds.

8:30pm - As I put Dale to bed, I found myself explaining to him again about how it would be when Alan got his new liver. It had been a week or two since we had really talked about it with him, and I reminded him, "Some day soon Alan is going to go get his new liver. We don't know when it will be. That will be a surprise. Children's will call and tell us it is time to go get it."
6 hours later.... they called!

Sunday, December 30th
1:30am - Alan woke up, like he often does during the night. I went in and nursed him. He was really restless, which was starting to become a regular thing for the past few days.

2:00am - I laid Alan in bed and he immediately woke up. Frustrated, I flopped back into our bed and told Greg Alan was awake. He went in to get him and I drifted back to sleep.

2:20am - Greg brought Alan into our room to tell me how Alan couldn't seem to relax. He would almost be asleep and then cry or jerk awake. I told him I had noticed this was an emerging pattern and there was most likely nothing wrong. Greg and Alan went back to the living room.

2:33am - I was almost asleep again, and my cellphone rang. At 2:30 in the morning. A unique ringtone. Caller ID unavailable. At 2:30 in the morning. I knew. I ran with it to the living room. Greg had heard it. He knew, too. I steadied my voice the best I could and answered the call.

Not to leave ya hangin', but that's about all my scattered, sleep-deprived brain can do for now! :)

Getting the Call

Just wrote this post and then accidentaly deleted it. Yeah. Not happy about that.

It took a lot of brain power to get it down in the first place so...... I'll try to come back later and try again. ;)