Happy Birthday Tater!!!

One year ago today Mr. Awesome and I were debating whether or not we should call my parents to come get Toser because my water had broken but we didn't want to wake anyone up. And then my contractions stopped after we did call them around 7:00 am so we called them back and asked them to pick up Chick-Fil-A on their way to our house. Um, priorities people. We hung out for a little while, pushed Toser on the swing and took our merry little time getting to the hospital. It was a nice, relaxing morning (other than those stupid contractions).

This morning started out a little differently. They came in for lab work at 5:45 and while Tater did not like being woken up with bright lights, he was smiling and flirting with the tech. And of course she couldn't find a vein because Tater's veins are horrible and shot; she asked the nurse if she could prick his finger instead of sticking him in a vein and then went and stuck him before getting the answer. (Okay, excuse me, but um, WHAT WAS THE FREAKIN' POINT OF ASKING IF SHE WAS GOING TO GO AHEAD AND STICK HIM?!!) I was trying not to piss off the lady who was sticking my son, but I was also trying to express my displeasure with the whole situation. Well, actually, I might have said what I just said above, but you know, I said it very sweetly. Of course that vein was gone so she ended up pricking his finger too. Poor Tater. He looked at me with his lip all stuck out and looking pitiful with big tears in his eyes. And then guess who got all nauseous and light headed, complete with brown vision and twinkly lights, and would have fallen in the floor had there not been a chair next to her. Oooo, oooo! I know, I know! That would have been me. I have never reacted like that to blood before but I guess it was a bit early and I was mad at the tech and I skipped dinner last night and needed something to eat. Whoooboy, there's no better way to throw your weight around than almost passing out on the lab tech. Now, I'll get no respect. Me. The stinkin' light weight.

Anyway, Tater's 1!!! And we're having Peggy Ann cupcakes and presents! He's already scoping out the presents and looking at me with this huge grin like he knows what's going on. We'll smear cupcake on his face and be sure to get a good picture. It's going to be a fun day. Kajja and Toser came down yesterday to celebrate; Coco and Papa are coming down today; more family later in the week... stretching out the number of days you can get attention, that's what birthdays are like at home.

Happy Birthday Tater! We love you-you little booger!

T-T-T-Toser

The vent classes are going great; we're learning lots and hopefully will feel comfortable with everything by the time we go home. I will explain a little more about the classes later but right now I want to talk about Toser.

I love that kid so much. Mr. Awesome and I have been trading off going home to be with him and doing that makes me miss him that much more when I'm in Birmingham. He has gotten so much older in the last 2 months. He's so much more a boy than a toddler now and it makes me proud and sad. I love that he's getting a weird sense of humor like me (Mr. Awesome probably hates it) and he makes me laugh so much. He knows I laugh when he talks in a deep voice so he does it when I don't expect it. And last night when some friends of Kajja/neighbors of ours stopped by, he very loudly said, "I tooted!" while Kajja's friend was talking about God's mercy in the other room. I, of course, started laughing because I couldn't help it (which only encourages him). I fear the poor kid has gotten my ill sense of comedic timing. It drives Mr. Awesome crazy how I find things funny when things are serious-at least Toser comes by it honestly.

He can come up with some zingers even when he's being serious. The other day I was getting ready to leave and he picked up my keys and said, "I wanna start your car for you." I laughed and said maybe when he's 4 he can do it-he said, "maybe when I'm 3 I can do it." And earlier that day he was being cute and I told him I want him to stay little and he said, "But I want to get big." He still mispronounces some words (ephelant for elephant, ticktocs for tictacs, sing-it for music) but is beginning to correct himself and I know the days of cute mispronunciations are dwindling.

This kid has the biggest heart. You can tell he genuinely cares about other people (as much as an almost 3 year-old can) and is so sweet. He can drive me up the wall but make me want to dip him in chocolate and eat him at the same time. Lately when we leave he says, "But I want you to stay here," and when we say we have to go see Nate he always says, "Okay." Like he knows he has to make this sacrifice of not having us around so his brother can get better. It breaks my heart into a million pieces every time he does it. He's just recently started talking on the phone to us and it's even worse when he does it then.

He's got a great imagination and can play by himself like he's so much older. He's a bit OCD and has some sensory issues but is a boy through and through and can get dirty in 30 seconds flat. He loves to play in the "river" behind our house (it's a little creek) and also loves to play in the State Park our property backs up to. He thinks going on the trails and going to the overlook is something every kid can do on a daily basis and has such an appreciation for all things nature. He won't throw away any trash he generates at home but if he sees some trash on the ground in the park, he freaks out until we can find a can to throw it away. He's obsessive about recycling and knows that plastic goes in the blue bin.

He's the very definition of a conundrum and I wouldn't have it any other way. He makes our lives funny and balanced and overall better. He'll be 3 next week and it hurts me that he's growing up so fast. I want to keep him like this forever but know it's just going to get better. Until he becomes a teenager and then he can go live at PapaCoco's house.

Pictures

We've taken 430 pictures since January 29th-um, that's a lot for us. Some highlights here:
http://picasaweb.google.com/tosertater/PicturesSince129

Great-er Tater

So, Tater's birthday is this coming Monday. I CANNOT believe how both fast and slow this year has been. Some days I don't remember because there was so much going on and each day was a blur. Some days I remember all too well (good and bad) because they seemed to go on forever. But all in all, it's been a good year. Last March 31st was a horrible day. Of course it was good in that we had Tater but the news we got seemed to be so devastating. No one could give us answers-Tater wasn't doing good and that's all anyone knew. We were in such a fog and weren't really sure if we wanted answers at the time. Our families NEEDED answers and we were pulled between wanting to know everything and not wanting to know too much and then trying to explain all that we found out to everyone else. Everyone was confused and scared-just thinking about all of it now gives me a lump in my stomach. It was something no one should ever go through but I do think those first few weeks proved to us we can make it through uncertain times and that knowledge has come in handy since.


We made it through the year! My first idea for celebrating how far Tater and the rest of us have come is to throw a huge keg party. How else to celebrate getting through stress than with beer?! But then I remembered how I can't have more than one beer before I fall asleep and that wouldn't be much fun. So of course the next logical step in my crazy mind was figuring out how can we pay tribute to the people who have gotten us and this wonderful little fighter we have to this point and I thought-"Why not beg for money?"

Not for us but for the Huntsville Hospital for Women and Children's Pediatric Intensive Care Unit. That place and the people there mean the world to us. They truly became part of our family the 6 weeks Tater was there and we love them all so much. They are the best of the best when it comes to health care professionals. We would not have made it emotionally without their support. Tater would not be the healthiest kid most people have seen on a vent without their care. They deserve more than praise-they deserve things that will make their difficult jobs easier.

So, you see that nifty little green button at the top left of this page? It's a link that will take you to Tater's Birthday fund page on the Huntsville Hospital Foundation's Onlinelifeline.org site. Directions for how to donate to the PICU are on the page and we appreciate you helping us out with this very, very much. Huntsville Hospital is a not for-profit hospital and they depend on donations to get the little extras that make things easier in stressful situations. If we could raise enough money to buy a little something in Tater's name for the PICU, I know they will greatly appreciate it. And we might be able to keep our reign as the best family ever to be in the PICU (our self-appointed title mind you-we like to prop ourselves up like that).

Of course, I'm begging without any sense of entitlement. And I would hate for any of you to think we expect this of you. It's something that's there if you would like to do it and if you don't that's fine by us. Thanks!

Orientation

We had orientation for the home vent program today. We got a layout of classes, what to expect and an overview of the program. We met with the vent program nurse, social worker and doctor (who is already one of Tater's docs from sleep clinic). Everyone is super nice and knowledgeable. We'll be doing 3 classes/week and should be done in about 4 weeks. We'll have to prove we can go home and deal with all kinds of emergency situations and do all the care, etc. We're pretty confident we'll pass all the tests because we've been so involved with Tater's care from day one.

It's sad they expect parents to not know much about their child's care. The reality is, we're in the minority in staying with Tater 24/7 and being so involved. The nurses here (and at the PICU at home) have said it's not unusual for parents to just "visit" and not know much about how to take care of their "technology dependent" child. Most of the time parents can't be here because of financial reasons and they have to work-a lot of times it's because they don't have transportation or because they have other kids at home and no one to care for them.

No matter the reason, knowing there are kids here without their parents makes me realize how good we have it. Of course Mr. Awesome can't work that much being in Bham but he will have a job when this is all over and many people wouldn't be able to say that. Mr. Awesome's employers are the most caring people in the world and everyone there is like family to us. We hate being away from Toser but we know he's having fun and is getting an opportunity he wouldn't otherwise have to be with his extended family. He's having a ball and although he misses us and we miss him like crazy, he's smart enough to know life is pretty good with the spoilage right now.

This whole thing sucks hairy donkey balls but it has made us closer and stronger and have a sense of appreciation that we probably wouldn't have if things were different. And Tater is the most amazing kid. I'm honored to be able to take care of him. Not that I'm a martyr and asked for any of this-it's really hard and discouraging sometimes and most of the time I'm exhausted-but having Tater in my life makes me look at things in a clearer light and understand things that I wouldn't be able to fathom in my "old" life.

You guys have gone too long without some of my sap-so there's your sap for today. One really cool thing about all this is that we'll get put on a priority list for power and utility outages. Y'all totally want to live on our street so you'll get your power back before anyone else does. Of course, living where we do kind of makes such outages a bit more common than the average place but still. We're still excited about the "priority list." And yes, Mountain Mamas, we're having a playdate at my house if the power goes out. :)

Bham schmeham

So it turns out that BHam isn't much different in that we're just sitting here waiting. Tater did great during the transfer although he may have liked the ambulance ride a little too much. I'm sure it had nothing to do with the constant attention he had from K and J, the nurse and RT from the PICU who rode down with us. I had to ride up front and every time I looked back they were playing with him.

We start orientation for the vent program on Monday. Tater was initially put in a room in a observation unit and we couldn't stay with him but he was moved to a regular room Thursday and we can stay 24/7 now. We'll probably be here 4 more weeks (best we can tell). We thought we would start right away with education but I guess they're trying to get to know the Tater and figure out what we all know before we start.

I'm telling you-Tater has become such an expert at getting attention. And EVERYONE falls for it. Tater's entourage from the ambulance (J, K, 2 EMSers) had to transfer him to the room. (Sidenote: Children's has a metal detector in the ER I had to walk through-it binged and the security guard ASKED if I had a weapon instead of checking my bags-I totally could have smuggled a samurai sword in and gotten away with it) Tater was on a stretcher and they had it elevated to get through the halls so he was at head level and could see everything. We walked by a nurses' station where several people were. Tater started smacking his lips (that's how he blows kisses) and waving both hands like a king on parade. Every.single.person. at that station said "awwww' and waved back. Talk about making an entrance. We had people stopping by all day to see "the cute baby who waved." My child. He knows how to work a room.

Mr. Awesome went home yesterday to work some and see the Toser. Toser has been having adventure after adventure with Gigi . They've dyed Easter Eggs, went to the book store, had playdates, got a teddy bear from a fireman-all kinds of fun. And Toser has apparently developed some kind of normal appetite where he eats things other than grilled cheese and yogurt. Everytime I talk to Toser he sounds so happy. Gigi has been good for him. Kajja drove in Thursday night and will stay through the end of the month and I know the adventures will keep on coming, complete with smoothies (Toser loves Kajja's smoothies).

And our BHam friends have picked up where our home friends left off with the hospitality. We have a permanent invitation for a bed at the Gov'na (Ben's college roommate-we don't really know the governor) and Mrs. Gov'na's house. Mrs. Gov'na stopped by the hospital Wednesday and made it clear she's a kindred spirit. My best friend from kindergarden (Sisa) brought a HUGE basket of snacks and took me to dinner with her almost-sister-in-law (thanks for paying SP). And several of Mr. Awesome's college friends have made offers I'm sure we'll get around to taking advantage of. Of course the help from home hasn't stopped. Our friends are still ready to jump at a moment's notice to take care of anything we need. P.A.M.! from the PICU even came down with one of her friends last night just to take me to the Cheesecake Factory. I'm definitely not losing any weight here.

We have internet in this room so I should be able to update-even though there isn't much to write about now other than the waiting. I'm afraid you'll have to put up with a bored woman's rants until something happens.

Good News Part Deux

Okay. So 4 hours later...

We go to Birmingham tomorrow! At 7am on the ambulance. And we get to go straight to the Vent Clinic with no stop in the PICU. We'll know more about how long we'll have to stay tomorrow but if there's no stay in the PICU we should be able to get home pretty quickly. Whew. I'll have to see what Internet access is like down there but I will get an update somehow.

Good News Part 1

Tater got to go outside today for the 1st time in 6 weeks! At first he was all, "what is this warm, bright thing they call the sun," but then he loved it. He was out of the PICU for about 30 minutes. I think the best part for him, though, was all the people waving and smiling at him. He has become such an attention hog. Definite deprogramming is called for.

Stay tuned for some really good news... I'll post again in about 1 hour.

Gratitude

I have no clue how we would be surviving this without our family and friends. I have 2 sisters and a brother (Wissa, Manny and Tyty) and Mr. Awesome has 2 sisters (Kajja and Leeda). My mom, dad, Wissa and both my grandmothers all live close by and everyone else is either within a 6-hour drive or 1.5 hour plane ride away. They have been doing so much for us.

Leeda and Wissa have both moved their families into our house for extended periods just so we can see Toser 30 minutes at a time. The rest of the family who can't move into the house are determined to keep the house clean and have been paying for a cleaning crew to come every 2 weeks. Mr. Awesome's aunt Gigi is coming today for a couple of Toser days and then Kajja comes Wednesday to keep Toser until the end of the month. My mom and dad are filling in the gaps with the Toser (and I think a little miffed they don't get to keep him more-they just haven't had a chance because everyone else is calling it).

And then there's the extended family, friends and our community. Since we don't know when we're going to B'ham we haven't been making plans but still feel the need to see people who are not dressed in scrubs. Everyone has been great about doing things with us at the drop of a hat, coming to stay with Tater while we run away, bringing snacks, giving us certificates to restaurants around the hospital, calling to check on us- you name it, people are doing it for us. I have an "art benefactor" who is paying for any art classes I want to take with Ms. Bekah Bynum, artist extraordinaire. Mr. Awesome's employer has been more than accommodating with vacation time and schedule flexibility. I know I'm forgetting some stuff because there has been so much done for us.

I'm mortified to say that I haven't written many thank-you's since Tater was born. Toser's 2nd birthday was 6 days after Tater was born and everyone brought him a ton of presents but I was in a fog or not there and don't know who brought what (I still look at stuff and wonder where it came from). Kajja's best friend from high school brought Toser's birthday cake-Peggy Ann nonetheless- because I didn't think to get one. Friends stayed with Toser at night so we could come at NICU visiting hours to see Tater. We had people bringing meals for 3 months after we brought Tater home. Mr. Awesome's colleagues gave us $200 in restaurant gift cards. The church we visit

Summer came and I was embarrased because I didn't know where to start or what to thank anyone for so I put it off. Then Tater had surgery in August and pretty much every week since has been filled with hospitals, doctors appointments and therapy sessions. I'm an all or nothing kinda gal so sending just some is out of the question. And what if I-sent-one-to-someone-who-shared-it-with-someone-else-and-then-they-wondered-why-they-didn't-get-one-too? (Did I mention I'm also kind of crazy?) The thought of all the thank you's I need to send is overwhelming. And the funny thing is the people I need to thank the most are the ones rolling their eyes and saying they don't need/expect/want a thank you.

So until I can get my act together: THANK YOU. I'm humbled by the how nice and generous and kind everyone has been. I'm crying because I can't express this enough through a blog. If anyone says the world is a mean place, point them in my direction because Tater and I have a lifetime's worth of examples to set 'em straight.

Fluuuuuuu-achoo

Toser and Tater's pediatrician has been preaching to us to keep Toser the H away from the hospital. He's only been up there 3 times so we thought we were doing good. Well not so much. Toser got sick Tuesday morning, vomiting and fever. I took Toser to the doctor, tail between my legs, Wednesday afternoon and flu it is. Toser got a prescription for some flu meds and so did Mr. Awesome and I- because their pediatrician loves Tater that much and didn't want germs to go back to him. (But if the germs came from the hospital doesn't he already have it/them?) And since I had a scratchy throat and felt achy on Wednesday afternoon I have been banished from the hospital. It was bound to happen-you can't be around all those hicky germs and not get SOMETHING. Toser seems to be a little better-still whiny and clingy but no fever or exorcist episodes. I feel better now but Mr. Awesome feels bad. I'm glad I was only out for a couple of days-hopefully Mr. Awesome won't be thrown down for the count. I'll get to see Tater again this afternoon and have missed him so much.

Wissa, Unca Scott, Paypay and Bana have been here all week with the Toser and I don't know how we would have made it without them. Toser loves to be with them and begs to go to their house all the time. They leave to go back to normal today and I know Toser will have a hard time with that although they'll be glad to be back to their routine. Wissa has gone above and beyond with the cleaning up of vomit, doing laundry and dealing with cranky, sick people (ahem, me) on top of having to balance being with her family away from home and clean up after everyone. Thank you Wissa!

Still waiting for a bed in B'ham. Will keep you posted on that.

Look who's strolling!

Signs you've been in a hospital too long

• The nurses think it's hilarious to pretend they don't recognize you
• The lady at the Grille asks if you came in on your day off
• You consistently get the employee discount in the cafeteria
• Nurses who haven't even had your son are stopping you in the hall to talk
• Your son who is not in the hospital asks to go eat at the hospital
• You know what's going on in your son's nurses' lives and nothing about what your friends have been up to

Photo Shoot

Pictures showing the big redhead (Tater, not me):

Waiting...

We're still in town. Apparently Children's PICU isn't much bigger than the one here so we could be waiting a while. We would much rather wait here than there, so all's good for now.

While we're all waiting, I wanted to share with you some things that have made me snort lately. These are so funny. And a little cruel-my sense of humor may be skewed by recent events (but my sense of humor has always been on the less-than-sympathetic side of things).

Japanese Game Show

Stomping Grapes