mERry Christmas

It wouldn't be a great Christmas if not for a trip to the ER. Tater woke up Christmas morning with a fever and when he still had it last night and Tylenol and Motrin weren't working to my satisfaction, off to the ER we went. He wasn't admitted, thank God, but he has some kind of something they couldn't find the source of. No pneumonia, no ear infection, just a really high white blood cell count that says he has something... He had a round of IV antibiotics at the hospital and came home with a prescription for 2 oral antibiotics. I'm not convinced it's bacterial and am reluctant to start antibiotics but I do not have a medical degree so here goes 10 days of gross diapers. Merry Christmas!

Seriously though, we all had a great Christmas in spite of the fever and got spoiled more than we should have. The boys got some great toys from the family and our big project this week is to clean out the playroom and get those great toys out of the living room. We've had visits from Leeda and her boys, Aunt Gigi and Uncle Craig and Kajja is here until Monday. Toser thinks everyone who visits is his personal storybook reader and everyone has been nice enough to comply. We were able to see my entire family Christmas Eve for my grandmother's 80th birthday and we loved being around everyone at once. It's been a great holiday for us.

I hope you all had a great holiday yourself! We're pretty slammed until New Year's around here so I'll check back in when 2009 rolls around.

Boogerness

Tater lost his TV privileges today. He had a stand-off with his Occupational Therapist in therapy today. A 30-minute stand-off and the result is that he will not be able to watch Blue's Clues with his brother this evening. Now, Tater loves him some Blue's Clues and he will be very upset that he can't watch it. The question is whether he'll get that he's missing out because he refused to draw a stupid line on a piece of paper 6 hours earlier. I know. It's harsh, but we were trying everything to get him to draw that line-something we know he can do, something he does all the time but refused to do so today in order to pass an OT evaluation the therapist needed. He didn't do it and I had already said if he didn't do it, he would lose his TV privileges. So, now, I have to punish him and he won't even know why.

I never thought I would be having these type of discipline issues with Tater. It's frustrating because there's only so much we can do to get him to do what we want/need him to do. His therapists and we are always looking at how much he isn't doing something because he doesn't want to vs. because he really can't. It's so hard to tell the difference. But if that kid is going to be worth anything in this life, he needs to suck it up and do the things he doesn't want to do. He's going to have it harder than the rest of us and it's better that he learn that now rather than later. It's not fair and I hate it for him but I love him too much not to push him harder than he wants to be pushed. Plus, I know he can reason because today during a trial off the vent I told him if he couldn't calm down he would have to go back on. He immediately calmed down. It was funny how fast he calmed down because he didn't want to go back on that vent.

The really funny thing about all this is that I love it. I love that he's being a typical almost 2 year-old. I love that he hits his brother for no reason. I love that he gets mad when he doesn't get his way. I love all this because it's means he's actually typical for his age. He's never been typical for his age. It's great that he's on track for something even if it is the least appealing thing for him to be on track with. Pray that I have the patience to deal with it.

(totally unrelated, a picture of the 4 of us):

Dreaming Big

You would think that having a son with multiple medical issues would make me a little willing to suck it up when I come down with a small cold. Not so. I become a complete pansy when it comes to being sick. I hate not being able to breathe through my nose because it means I can't smell and if I can't smell, I can't taste food and what is the flippin' point in eating if you can't taste food? So I drive everyone around me crazy because I moan and groan and am pitiful. Ahem. I'm better now. Thanks for asking. And please take Mr. A out for a drink because he definitely deserves a few for putting up with me this last week.

So now the excuse for not updating is out of the way, we had a great Thanksgiving, thank you very much. Too much food and being around family is always good for the soul. And of course the real reason we get together as a family is POKER. I've been opting out of the games because I hate to make everyone lose to me but I can now rest, assured that my 11 year-old niece can kick everyone's butt in the game now.

Toser is very excited about Christmas. Every day he asks, "Is it Chrismas today?" And he definitely dreams big. I thought I would have a couple of years before he started to realize he can have things he sees on TV and in catalogs. Well, that reality came crashing down on my head the other day when I asked him what he wanted for Christmas. Whew. If he's asking for this type stuff now, what in the world will he be asking for in 10 years?! But he's a great big brother and a great kid so we may spoil him just a little this "Chrismas."

Tater has been rocking in therapy lately. He's still a big, fat faker and gets all lower lip when he thinks something is going to be hard but I think I can safely say that my youngest booger will be walking, or at least well on his way, this time next year. Now, you know what a big thing this is for me to say. I hate to put things out there to only have to recant them later. It's just he's been doing so well and I think he really wants this. He's been doing a lot of things lately I only dared to dream he would do, so I'm going to go ahead out on this limb and say that he's going to do it. My kid will walk. It may not be pretty and it's going to be hard, but he will walk. And then we're going to have a huge party and you're all invited.

So, here's to big dreams and having them come true. I hope some of your dreams come true soon, too.

Happy Birthday PeyPey!

My little nephew is 13 years old today! I remember the day he was born. My sister was looking and feeling miserable Thanksgiving Day and then we got the call the next morning that PeyPey was on his way. I remember holding him and thinking he was pretty darn cute. I remember when his sister, Banna, was born and taking him to the hospital to see her, but not before we went to Chick-Fil-A. I remember when he was 7 or 8, he spent the night with me and Mr. A and threw up all over the place. I remember thinking that I did not want kids if that's what I had to deal with in the middle of the night. His voice has deepened over the last few months and it still freaks me out to talk to him on the phone because he sounds like a man instead of my little nephew.

PeyPey's so sweet and handsome and a great cousin. My boys love him to death and I'm glad they have him as a role model. HAPPY BIRTHDAY PEYPEY!!

Pitiful

This is what a temperature of 103.4 looks like. He's feeling better now but was so pitiful Tuesday night. Poor baby.

Take Me Home...

Today at the doctor's office, a little girl (7? 8? at least old enough to know better) was staring at Tater. Actually stopped in front of us while her mom was distracted and just open-mouthed stared. I opened my eyes really big, raised my eyebrows and made sure she saw me, then she ran away. Not my proudest moment, sure, but I didn't feel so bad about it at the time. Rude little girl. And snarky me. Honestly, I shouldn't go out sometimes. :p

Tater has an ear infection. At least it's only that. But he's super pitiful and wants to be held and snuggled. I hate that he's sick but I'm loving the cuddling. He's usually too busy for that.

We had a blast in NY at the wedding. Heather was absolutely gorgeous and Matt cleans up pretty nice, too. I've honestly never been happier that two people tied the knot. Along with CC and TC, they're our oldest, bestest friends and we would have hated to have missed the event. We had a lot of fun hanging with CC and TC (we really have to make it a regular occurrence-it felt like old times). And we got the absolute best tour of Schenectady, NY, by Erin, tour guide extraordinaire. Seriously. She was all professional, right down to almost running people down in her jeep in order to ask them questions so we could get a feel for the local flavor. The local flavor thought we should go back to Alabama and couldn't spell their hometown. Riot. I laughed the whole weekend. And while I have to let you know about my very pretty and very lovely sister-in-law and the rest of our great family who made this trip possible, that will have to wait for a post in a couple of days. Tater's awake and needs me.

I will leave you with 2 words that sum up our experience in upstate NY: Cookie Puss

Look!!!

“Only good girls keep diaries. Bad girls don't have time.” - Tallulah Bankhead

I'll make this a mantra to make myself feel better about never blogging. I found a bunch of Tallulah Bankhead quotes and I think she and I would have gotten along quite nicely. Southern girls from the same hometown with feisty attitudes and all. I love to write this thing but I have a hard time thinking of things that other people might find interesting. I mean, do you really want to know that I'm really buzzing on coffee right now? Or that I'm getting good at doing planks in abs class? No, I didn't think so. So, let's get to the real reason you come here; the boys.

They were baptized at church yesterday. It was a nice service. I didn't really know what to expect since I come from a dunking-church background and the Methodists don't dunk but I thought it was very appropriate for where we are in our lives right now. Toser did not like it and Tater didn't care. Pretty much par for the course.

We rarely take Tater to church because he's a little rambunctious during the service and it's not easy to take him out. I usually go to the early service by myself, come home to cook breakfast then Mr. A takes Toser to the later service. Well, Tater proved to be very much an 19 month-old yesterday. He didn't like Toser sitting next to him and hit him for no reason. He was bored and started looking around making people laugh at him. He stuck a crayon in his mouth and got mad/loud when I took it out. He was so bad. Toser was an angel compared to him and that's funny. One of his therapists said Tater's really gotten into his own lately and that's the truth. He's always been stubborn and definitely has his own idea about things. Isn't it great? Now if we can only encourage that without creating a brat, we'll be good.

Poor Toser is getting a hellacious cold. He's stopped up and cranky, pitiful and whiny. He acts exactly like I do when I'm sick so I feel bad for him but also get frustrated with him that he can't suck it up. I mean, the cranky whining is my M.O. It's patented. I just hope the rest of us don't get what he has. Mr. A and I are going to NY Thursday for some of our bestest friends' wedding and we really don't want to miss it. Aunt Heather and Uncle Matt just can't get married without us there! Leeda and her boys are coming here today to stay with our boys and I would hate to send them back to SC with colds, too. Just keep your fingers crossed that Toser gets over this soon and no one else gets the germs. He really is pitiful and I won't want to leave him if he's still like this Thursday.

Public Service Announcement

No matter who you vote for, make sure you get out and vote! If you don't vote, you have no right to celebrate/complain on Wednesday morning. Or for the next 4 years for that matter. You don't want to have to be quiet for 4 whole years, do you? Lord knows I wouldn't (or couldn't).

Trick or Treat

Thought you would like to see our goblins. Toser was the same skeleton he was last year and Tater was BooBoo Chicken (I was kind of hoping he would freak out like Toser did in the chicken costume because those pictures are classic but, nope, he's a real chicken and ate it up). CC and LJ came by for little while before the night started and LJ was the cutest little LadyBug:

We started the night by going to Danica's house with lots of our friends and started the loot grabbing on her street. Toser was very serious about hitting all the houses but once someone would open the door, he could only mumble "Trick or Treat," and "Thank you." At least he was making a little effort. Tater really got into the whole thing. He got mad when people couldn't see him and then not put candy in his bag (as if he's going to eat it.) We pushed him around in his stroller and he just kicked his legs, being happy. He held his bag and only waved at people when we got back to our street and he knew the neighbors we saw. Now we have all this candy that we don't know what to do with. Want some? Free shipping!

Oh, and I forgot. Last week we went to a local Farmer's Market and they were having a little carnival with a bouncy slide and popcorn. Toser, of course, loved the slide and Tater got a little jealous so we thought, "Why not?" With a tag team effort and a few minutes off the vent, Tater got to go down the slide. He wasn't absolutely sure about it but at least he got the experience.

Aren't my boys handsome?

Nothing

I have nothing. I'm tired. Does that count? I'm really, really tired. Does that count more? The boys are good, Mr. A is good, I'm good. Leeda and I took a trip last week and we had fun. Tater is doing well in therapy and hasn't had any major sicknesses. Toser is wowing us with his increasing compassion and sense of humor. Mr. A hasn't been working as hard lately. We're all pretty good around here. So in lieu of wordiness, a few pictures from one of Paypay's football games:

Not Fair!

I may have said this before, but I really don't get the point of suffering. Forget any biblical or philosophical reason. Why should good people suffer?! Two very lovely, very wonderful people in my life are having a very bad day. It's not fair to them and I would give anything if I could fix their hurt for them. Instead, all I can do is sit here, cry for them and feel helpless. What do you say to someone who has had the rug pulled out from under them so many times that no matter what you say you'll sound trite?

Moving Forward!

Mr. Awesome is away for the weekend at a Men's Sensitivity Weekend (he hates that I call it that) where he and his closest friends drink lots of beer, eat lots of red meat and talk lots of sports. They're all about being MEN this weekend and not the under-appreciated workmen they're reduced to the rest of the year. Mr. Awesome deserves a break because he works hard to support all of us and does more than his share of the work here at home. I'm glad he's getting a chance to be with friends and recharge.

So, of course, Toser is being extra whiny and talkative tonight and I think my brain may be oozing out of my ears. I'm not proud that I've resorted to turning on the TV so he will just shut up already. I know. I've already said it all to myself but it's worth the guilt because my head is seriously going to explode any minute. BUT I love that kid more than anything because he just turned to me and said, "I love you Mommy." How does he know I was this close? He's still going to Coco and Papa's to spend the night tomorrow. In his defense, he's having a rough week. The paci fairy came and he hasn't been so crazy about bedtime. Yes. He still slept with a pacifier up until a few nights ago. We justified it this long because it was only at bedtime but it was time to cut it loose. And yes, we resorted to introducing a mythical creature that came while he was asleep and left a balloon that we tied the paci to and let go into the wild blue yonder. We meant to get rid of it after last Christmas but Tater was in and out of the hospital and then in for 3 months so getting rid of the pacifier just wasn't high on the list of priorities around here. Of course when I started telling him last weekend that the paci fairy was coming, I wasn't thinking about Mr. Awesome being gone this weekend. I'm all about the bad timing. Tonight should be FUN. Lord help me. But poor Toser. He's been really torn up about it, as seen in the video.


Tater got a new gait trainer today! It's purple and we're calling it the sports car. His other one is so old I can't find a picture of it on the internet. He loves his sports car. Today in therapy he actually moved his legs enough to move the gait trainer forward. Before, when we put him in the old one, he would hold his legs up and cry. It's very neat to see him being mobile standing up. He looks so tall! Tonight I put him in it in front of the TV and he just stood there, which is good therapy because he was bearing weight on his legs which he just doesn't do. He's still got a little work in the form department but yay!! Here's a video of him moving today in therapy (sorry about the shaking-I was laughing):


And I joined the Y and am getting in shape. I need me some muscles in order to haul Tater and his gear around. I'm enjoying fitting into some old jeans and feel better about myself than I have in a long time. I love the moving forward we've all done lately. Makes me feel all productive or something.

No Naps for You

Tater is loving the scooting. His therapists aren't so crazy about it because as far as developmental milestones go, scooting isn't really one of them. They're extremely happy he is moving but scooting doesn't develop any other skills (other than we can treat nasty rug burn and knock it out in a day-shouldn't that count?). Right now, he's scooting back and forth between a toy and the front door. He will sit at the front door and wave at people who are walking by. We and the neighbors think it's pretty much the cutest thing.

Toser is not loving life right now. We got really lax about bedtimes this summer and it had gotten out of hand (um, 10:00pm?!) so we're doing bedtime boot camp this week. No naps means he's actually tired at a decent hour but means the afternoons have been hell for everyone. I hope after this week we can start naps again and still get to bed on time. He was upstairs just now and was too quiet so I went to check. He was in bed, lights out, asleep. My poor child is having to sneak naps. Meanwhile, I'm sneaking wine.

CC and LJ came over today so CC could learn Tater's care and vent settings (it helps that she's a RN with many degrees and is very quick in the picking up of medical things). She insists someone else should know, just in case. Isn't she smart and pretty? And I got to hold LJ so I get 2 bonuses out of the teaching.

We're all good here. Tater's off oxygen this week but that could change. Mr. Awesome's work has calmed down and he isn't so preoccupied all the time. I had a breakdown yesterday about something very inconsequential but a good dinner with great friends was what I needed. I laughed so hard (KWu, you're hilarious) and was refreshed today. Everything seems to be even keel this week other than the naps. I hope it lasts!

Adventure on the High Seas

What a trip. We ended up going to the beach and had a blast with Manny and Hunter. The boys especially since they were spoiled rotten with attention and play-dough. Well, we watched Ike and when it headed to TX, we decided to go on to the beach for a couple of days. We didn't think the weather would be that bad so far away from the hurricane. Wrong. We got to the beach house on Fort Morgan Friday night after dark. The storm surge was covering the road and we couldn't find the driveway in the water so we parked in the road. Everyone was looking to me to make the decision on staying so I said sure, let's have an adventure. Well, the adventurous part was wading in water with all of Tater's vent supplies. I thought I was going to lose my mind watchingHunter carrying the Cough Assist through the water. The power kept flashing and stuff kept alarming but we made it through the night with no catastrophes. I was a bit of a nervous wreck. Yes, looking back, I was pretty stupid for deciding to stay not knowing what could happen.

BUT! We woke up Saturday morning with an old shipwreck on the beach in front of us! The winds blew most of the sand off of it during the night and no one really knows how long it had been buried. It's a 150ft steam ship that was burned to the hull. It's so cool. We heard numerous stories about its origin- my favorite is that it was a Rum Runner from the Prohibition. A couple of the local news stations covered it and we watched hundreds of people come see it.

Rhapsody on a Theme of Medical Insurance

Parents of medically fragile children can not catch a break. But, you say, there are resources out there for ill children and their families. Yes, there are resources but you have to do a song and a dance and sell your first born and fight and cry and piss people off and prove you need the help before anything even begins to happen. I am so sick of dealing with this myself (but knowing that somehow we'll make it) and then hearing about someone who probably won't make it through the process to get help before they have to file for bankruptcy or worse, lose their child.

I just got off the phone with a therapist who has seen Tater a couple of times. She was asking for guidance FROM ME. One of her clients' family is having a horrible time getting nursing help for their very, very sick child. They have to be with their child 24/7 and can't leave her side at all. The mom can't go grocery shopping, she can't sleep, she's exhausted and is at her wits end. Medicaid won't pay for nursing because the child is less than 1 year old. How in the world is that justification for no nursing?! Why should this mom go insane because her daughter hasn't become one yet? Her daughter is sick, she needs a break, but because someone somewhere decided this should be a criteria to getting care, she can't get the help she needs and deserves.

I have been on the phone all day with various entities on a theme of Medicaid. I should compose a song. I'm trying to figure out a medical bill that we shouldn't have gotten but it looks like we may have to pay all the same. It's not chump change that I'm arguing about either. It makes me sick to think that we could be paying all of Tater's medical bills out of pocket in the not too distant future.

You see, our private insurance has a Major Medical cap that Tater will be getting close to sooner than we can fathom. It's very likely that he will not qualify for another private insurance and so our only recourse for him will be Medicaid. He currently has Medicaid because of a loophole in a Federal program to-not-be-named. The Medicaid he is on is only in effect for a year from the date of his discharge from the hospital in April 08. We went through this particular song and dance thinking that we could get Tater on Medicaid through a Waiver program before April 09. We have to go through a waiver program because Medicaid is essentially an income-based program and Tater doesn't qualify based on Mr. Awesome's income. Each state has a waiver program (sometimes called a Katie Beckett Waiver) for elderly and disabled residents that isn't based on income but as you can imagine, the wait list for the waiver programs is crazy long and the wait can be up to 6 years in some states before a person on the list gets to the top and receives a slot for Medicaid. Tater is currently on 2 waiting lists and neither one can tell me when he may get moved to the top. It could happen that Tater loses his current Medicaid at the same time he loses our private insurance.

And it's not only kids who are affected by the mess that is America's health care. A close family friend has had to continue to work throughout chemo and radiation treatments so that she can have insurance to pay for the chemo and radiation treatments. She's working hard, she's supporting herself and she still can't get any kind of help. That's just not fair or humane. Can you imagine having to work through the nausea of chemo? The sad truth is that many of you probably do.

Whatever your political beliefs are, it remains a very true fact that the health care system in this country sucks at best. The mess the health care system has become is not the fault of any one group but every group involved in the health care process -politicians, insurance companies, doctors, patients, etc., - should feel a responsibility to the health of themselves and their loved ones and try to fix it.

Oh, dedicated readers...

Y'all weren't waiting for an update were you?

Tater's been dealing with a snotty nose and has needed a little oxygen boost while asleep lately but he's seems fine other than that. We're not suctioning him a ton so it's just really weird. We're keeping an eye on it and will update if the snot turns into anything more. In other news, I've seem to have developed allergies in my old age. Allergies are for the birds. Who knows what I'm allergic to but man it's a doozy.

Tater's nurse has been in Italy for the last 2 weeks and returns on the 15th. Her father passed away unexpectedly and she had to rush home. Poor Pat. She's so caring and loving of Tater and we hate that she's having to go through this. Although, the last 2 weeks have given me a greater appreciation of how much she helps us. I've enjoyed having the boys to myself but nothing has gotten done around the house and I know Mr. Awesome is getting tired of stopping by the store on his way home from work. We are in desperate need of a full-on grocery run around here.

Of course since Pat has been gone, work has ramped up for Mr. Awesome and he's super stressed. He's probably going to be working next weekend so I was thinking about heading to the beach with Coco and Papa to see Manny and Hunter but it looks like a hurricane may be headed that way so we're exploring vacation options away from storms. Manny and I are pushing for a place with a masseuse. Manny is preggers and could use one so I will be her ally in the cause for purely unselfish reasons.

Toser is loving his new school. I put him in one that came highly recommended and is a bit closer to our house than his old one. Turns out that Mr. Awesome and his sisters went to the exact same preschool. How funny is that? He's in 2 days a week but would love to go 5. He seems so happy lately and he isn't being too much of a 3 year-old.

We've had a ton of visitors lately. Leeda and her crew were here the 2nd week in August. Kajja came later that week and she, Leeda and Mr. Awesome did the triathlon. I did the bike portion as part of a relay team with some of my Mountain Mamas. As I've told some people, my greatest accomplishment was wearing spandex in public. We all finished (some only a little faster than others) and we had a blast. While everyone was here, we celebrated Rockstar's first birthday with family friends. Then Kajja came back this week for a business trip and Gigi came for a couple of days. Toser and Tater have been spoiled rotten and have loved every minute.

Tater is scooting everywhere now. See video below.... He was getting permanent rug burn on his bottom from the scooting but keeping him in pants (not shorts) is helping that. He's starting to do a little more in therapy with pushing up on his arms while on all-fours and he's bearing a little more weight on his legs while "standing." He's still a booger and won't do anything he perceives he can't do but he seems to want to do a little more lately so we're very happy.

Toser playing in the rain (he loves this):

Video of Tater scooting (sorry the lighting is so bad):

and dancing to The Lost Trailers new CD Holler Back:

Tommy Dereksen

Last night, a smart, sweet, strong little boy named Tommy decided he was done with his battle with congenital heart defects. I know of him through an online support group for parents of trach kids. His mom and I emailed back and forth recently and I found her to be a very dedicated and loyal mom who will do anything for her kids. He and his family have been through so much the last almost 2 years, a lot of it not even related to his health issues, and I can not believe they now have to go through living without their little boy. I know his family is heartbroken and I don't know what to do or say.

I've had the opportunity to meet a lot of fantastic yet really sick kids and their parents this past year. And some of those kiddos just don't make it. This is what I hate the most about being on this journey with Tater. I've found a world that most people know exist but never think about- a world where babies die for no reason and their parents have to live with questions for the rest of their lives. It sucks and it's not fair and most of the time there isn't a damn thing that can be done. It pisses me off and makes me sick to my stomach.

This morning, there is a mom who is having to tell her 9- and 5- year old sons that their little brother passed away. Please think about her and her family today. Take the time to think about the kids who won't make it to the end of the day and their families. And then remember them tomorrow and the day after. Don't ever forget them.

Roller Coaster

Up and down. Twist and turn. You never know if you'll end up laughing or throwing up. I used to love roller coasters and now that my life has become one I'm not so sure anymore. Tater is doing really well and Toser is being super sweet lately but the Medicaid thing has been weighing me down. I think it's been worked out but who knows. We'll find out Friday when we see Tater's new pediatrician. (A guy who just graduated from med school and started work this past Monday. I kind of feel sorry for him already. You know he's expecting easy summer colds and viruses and we're going to walk in with all of Tater's gear. Welcome to town! At least he'll know what most of the stuff is, being fresh from the field and all.)

Last Thursday some very old friends of mine, T and 2 of her 4 kids and L and her 2 kids, came to lunch at our house. I haven't seen them in at least 16 years (yes, I feel kind of old saying that). It was definitely a blast from the past and really good to see them. Rumor is they have an old picture of us and we took one on Thursday so if I can get those, I'll post them so you can see how much I've really aged.

And this Friday, I'm going to Montgomery for Sisa's brother's wedding reception which will be a lot of fun. Then Saturday morning, I'll drive over to Atlanta to pick up Leeda and her boys and bring them home with me to stay for the week. Saturday night we have a birthday party to attend for a very dear friend of the family. It will be a busy, fun weekend for sure.

Rrrrrrrrrr

The last few days have been very frustrating for me for small reasons. It really is the little stuff that wears me down and I am worn.

It's not going to make sense to anyone who isn't used to working the system that is Alabama Medicaid but let's say I find the system poorly run at best. My gosh! I feel like crying every time I get off the phone or get correspondence in the mail. It is sooooo frustrating. They keep changing things and never fully explain why-I've even had them hang up on me when they didn't know the answer to a question I had. All of this is about to affect some of Tater's care and that is not acceptable. But I'm not sure how to resolve it. Argh. and Weep.

Creature (Not) Comforts

First off, we lived with a SALAMANDER for a whole day!!!! Ick, gross, yuck, etc. Yesterday afternoon I walked into the kitchen and my mind barely registered that there was something on the floor before it ran under the stove. Mr. Awesome saw a black salamander by the garage yesterday so that's why we're calling it a "salamander" and not "gross lizard thing that wanted to eat my toes." Anyway, just before Mr. Awesome got home from work today, I saw it in the living room and staked it out. As soon as Mr. Awesome walked in the door, I screamed, "It's there." He grabbed whatever garden tool you use to kill these type things and we talked over the various ways you can trap a salamander. We created a barrier to the kitchen and the rest of the living room and then Mr. Awesome proceeded to whack the ever-living crap out of the thing. I guess it would have been humorous to the outsider: Mr. Awesome was chasing and hacking at the very fast little booger; in spite of myself, I screamed a couple of times; Toser was laughing his butt off; and poor Tater was crying. In the end, the salamander was "relocated" and we are (I am) breathing a little easier tonight. And really, I'm not all that squeamish about these type things as long as they're outside where they belong. Bleh. (I know. We should have really relocated it instead of "relocating" it but we live next to a State Park and there are plenty of them around. I don't think he will be missed that much in the salamander population.)

So, outside of the creature adventure, we've had a pretty good week. It's hot as heck here but we're keeping the house dark and cool and staying comfortable. Tater has been off the vent twice, once for 20 minutes and once for 30 minutes, and is now tolerating his Passy-Muir Valve (PMV-a speech and swallowing device for trach patients). He hated his PMV up until Friday when he made a liar out of me and decided it's not such a bad thing after all. I was telling the Speech Therapist how much he hates it and how he just coughs and cries when we put it on him as she was putting it on Friday and guess what. No crying, no coughing, nothing but sweet sounds from the Tater. Such a booger. Now he's wearing it all the time with no problems. This kid is definitely on his own schedule and agenda. And he loves his new voice. He's been chattering all afternoon.

Toser is still being sweet and 3 at the same time. He loves to make Tater laugh and will do anything to do so. He's also having a hard time following simple directions so I go from wanting to swallow him whole because of the sweetness to wanting to swallow him whole to get a few minutes peace. He's also a booger. We have a house of boogers. Anyway, Toser's total boy and our house is covered in cars and trains and there's always some kind of potty talk going on.

This weekend we got to see a ton of people: Saturday morning, Mr. Awesome's college friend, A.N, his wife, C, and their daughter M, stopped by. We haven't seen M since she was a baby and she is now 6 so that was really neat. She was very excited about seeing the Hannah Montana movie on TV that night so I hope she had fun watching it. After they left, Toser and I went to Tru-Man's 1 year-old birthday party where there had to be at least 50 people. And then after naps, we went to BR and J's house for J's birthday party where we got to see the Happy family who were in town from GA (always a pleasure, Happy family-we need to see you more often). BR and J are great hosts who made sure everyone had fun. And then yesterday, CC, TC, LJ and CC's parents came up to the pool where we had lunch and roasted in the hot, blazing sun. It was a great social weekend and we're not used to that so we're worn flat out. So, I'm going to bed y'all. Take care til next time.

I wonder if we can play CDs on it?

3 posts in 3 days... whoa. What's wrong here?!

This was too funny not to share. We went to our neighborhood pool tonight to grill out and have dinner. We try to go as often as possible because it's a gorgeous, laid back setting and we really enjoy it there. Tonight as we were leaving, I put Tater in his stroller and hung his vent on the back. The vent was facing a group next to us (who was having a LOT of fun). This guy comes running over, excitedly asking, "Is that a CD player that hangs on the stroller?" OMG. I laughed in the poor guy's face. I couldn't help it. I usually politely explain what the vent is but, seriously, how much do you have to drink to think a ventilator is a CD player?! In his defense, he acted embarrassed and said, "Well, it says 'DISC'." (When any part of the vent becomes loose, the vent alarms and flashes, 'DISC,' as in disconnected.) So, I can see where he could be coming from,-BUT the vent is kind of big and definitely not CD player-ish. It was dark, though, and I feel bad for laughing so hard. I tried to find the guy before we left so I could apologize for embarrassing him but he must have run away. Man, I needed that laugh tonight. CD player!! HA!

Moanster

I can't believe I "got for" to mention how Toser says "moanster," as in, "there's a Moanster in my closet." We crack up every time. My mom says he enunciates like a Canadian so maybe he's not Southern country, he's just foreign. We do have a greater proportion of Canadians in our city than most Southern cities because it's the Hockey Capital of the South -but it's also the Space Capital of the South so maybe he'll be a Canadian rocket scientist who just happened to be born and raised in the South.

Tater's visit in Birmingham went as well as it could. All of the doctors were shocked at how big the chunk is and how much stronger he is now. He went all lower lip on the vent doctor and made everyone laugh at how pitiful he can get in 30 seconds. The kid is a pro with the lower lip.

No huge changes from any of the doctors but we can start tiny trials off the vent (10-15 minutes at a time). Nate's going to need the vent for a while so we know this isn't the beginning of anything huge but even if we're able to take a walk around the neighborhood without the vent we will all be very happy. It's kind of hard to explain but Tater's on the lowest vent settings possible so there really aren't too many changes they can make in that regard. The only thing to do is just take him off to see how he acts. We'll probably get him weaned for longer periods just in time for cold and flu season and see all that go out the window. But this is a teeny tiny step in the right direction. What the direction is we still don't know but it seems to be a good one for now.
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Yesterday was also my favorite niece's birthday. I tried to make it her 10th but apparently it was her 11th. Hmmph. She's not supposed to be that old. Anyway, it wasn't the best of birthdays for her because she got braces yesterday morning and she was in a lot of pain last night but hopefully she's feeling better today. WE LOVE YOU BANNA! Smile big! Happy Birthday! (And don't break your neck on your new Heely's.)

Got For

Toser has been cracking me up lately. He's pretty funny without actually meaning to be and I'm afraid that he's going to be scarred from me laughing at him all the time. For example, he mixes up words; "forgot" is "got for," as in, "Mommy, I 'got for' go to the bafroom." It cracks me up everytime. He can't say his v's or b's very well so that's a constant source of amusement. And he has picked up this country accent from somewhere and he sounds like he should be out on the tractors he so desperately loves. I don't claim to not have a Southern accent but there is a difference between "Southern" and "country" and Toser's is definitely country. Then there's the zingers he comes up with-he'll say, "I'm the best brother," or, "Mommy, you're my Honey Mommy," and I just laugh and laugh. I know this stuff is probably only funny to me, but man, I'm glad that boy's mine.

Tater, is well, Tater. Only doing things he wants to do and giving you an "eat dirt" look if you try to get him to do anything else. I actually had to take him out of church on Sunday he was being so rambunctious and then fussing because we were trying to calm him down. He is such a booger. He puts his feet on the table then looks at us to see how we'll react. He is becoming more of a regular kid and we love it although it's a bit hard to discipline him when we've been trying to bring him out of his shell for so long. But he's a kid and being a kid means getting in trouble when you're being a brat.

Tomorrow we head to Birmingham for an MDA clinic visit for the Tater. He'll see his rehab doctor, his vent doctor and his neurologist. It's just a check-up so we're not expecting much of anything to come out of the visit. But I will get to see my Sisa, aka my bestest friend since Kindergarten who is now an Assistant Principle (wow, Sis, that makes you sound old-let's just forget I'm a whole 6 months older than you[edited: I'm 4 months older, not 6!]). I guess it's a sign things are going well that I'm not caring much about the doctors and instead thinking about where we should meet Sis for dinner.

Back from the edge of the earth

Don't you hate it when you get used to reading someone's blog and then they fall off the face of the earth and never update it? Yeah, me too. People who do that suck. Oh wait, we're talking about me, right?

All is well in the Toser/Tater household. We made it to and from SC in one piece, with most of the headache I got coming from Toser. We haven't travelled much in his recent memory so he was very homesick. Plus he's a major daddy's boy and was a little miserable on that front. Otherwise, he had a lot of fun playing with 'Pencer. Uncle Cracker took the older boys to a baseball game, Leeda and I took all 4 boys to the zoo, and we swam, hung out and had tons of fun. It was really good to see them on their home front and see some of Leeda's friends who are like family (I actually had 4 sisters to pass muster with when I met Mr. Awesome: Kajja, Leeda and Leeda's 2 best friends KT and Shannon). AND I proved to myself that I can handle travelling with the boys. So we've got 3 more months to go before the isolation from cold and flu season begins. I think we'll go see Aunt Manny in South Alabama next. (HAPPY BIRTHDAY MANNY!!!)

But first there's a triathlon in August that I'm doing the bike portion of. CC, JMcGee (forthwith Ringmaster) and I are going to go for the gold in the over-30 team bracket. (Yes, CC and Ringmaster, I just publicly called you out so you have no choice but to get your bottoms in gear and train!) Leeda, Uncle Cracker, the boys and Kajja are all coming in to town to do the triathlon so we'll have fun gorging on carbs and doing triathlon things. woohoo.

Tater is doing great. The kid has 5 teeth coming in at once and was miserable last week. 2 of the teeth are molars so he's having a rough time with it. And the thing is, while I feel bad for him, I'm so happy this is something normal! In fact, I didn't really start giving him Motrin and Tylenol until I noticed the molars because I figured teeth were no big deal to him. Poor kid. Don't worry, we're keeping him doped up now. But the big thing is Tater is kind of moving around. He'll sit in the floor and turn himself around by using his legs like scissors. And he can scoot forward too. This is huge for him. We did get a gait trainer and hopefully he'll get the urge to start going. We've got to figure out the whole transporting of the vent thing but we'll come up with something.

Oh, and we got Toser's hair cut. We'll call it his summer cut since I know we'll let it grow out again. I'm sure I'm leaving something big out but I'll try to be better about the updating. Y'all take care!

crazy much?

The last 2 weeks have been busy and quiet at the same time. The pool opened and I try to take Toser for an hour or so every day. He loves being around the other kids and playing in the baby pool. And I know I say this all the time but that kid is so sweet I can't stand it. I told him he's a sweet boy and he said, "because I keep Tater safe." What 3 year-old thinks about keeping his brother safe?! I love it and hate it at the same time. On the one hand it means he loves his brother and wants the best for him and on the other it means he understands that Tater needs special care. Of course he understands that because of how our lives tend to revolve around Tater but a 3 year-old should not be thinking like that. He should only think about toys and playing but he has to think about not stepping on Tater's vent tubing or what the different alarms mean. So I make sure he has Toser play time every day where he can be a kid and not the brother of a kid on a vent.

Tater had the usual therapies where he wouldn't do a darn thing and then we would get home or the therapist would leave and he would do something they were trying to get him to do. Typical. We seriously think his problem is that he's too smart and knows that we'll eventually do for him the thing he needs to do for himself. Like eating. First of all, the kid never had a chance to get hungry because of being fed through the g-tube and second, he KNOWS we'll feed him through the g-tube so why should he swallow that icky baby food, yogurt or whatever we put in his mouth. Vicious cycle. And it's like that with everything else. We're working on getting him a gait trainer which will hopefully give him the urge to move on his own. He's getting to be a very big boy-he weighs 25 pounds and his vent weighs 15 with the battery so we're carrying 40 pounds of chunk and equipment any time we move him around. That's not counting the go-bag and suction that goes with him everywhere. Instead of making large arm muscles it's all causing us to have very bad backs!

And to add crazy to crazy, I'm loading the boys up next Saturday and we're hitting the road to South Carolina to see Leeda, Uncle Cracker, Pencer and RockStar (Mr. Awesome has to work so he's very jealous). My plan is to just take it slow and expect a normally 6 hour drive to take 8 or more. I really think I'll make more stops for Toser than Tater, who hardly needs suctioning right now. We haven't been to SC in 2.5 years and I really want to do this. If for no other reason than to prove that this vent thing isn't going to hold us back too much. Tater's doctors are all about us going about our lives so we're going to get on with the living. At least until this fall when we have to enter a health bubble again.

A few pics from the last month or so:

(more at http://picasaweb.google.com/tosertater/MayToJune2008)

Hey Y'all

I'm back. We got in Monday night and while it was a great trip, I love being home. Had a ton o' fun sitting by the pool, playing Yahtzee and drinking really yummy frozen drinks. Danica and I went with my mom and dad and 6 of their friends. We were worried about being the "young" ones and how everyone might be offended by us wanting to drink adult beverages. Well, ha! The joke was on us. We're total lightweights. Cannot even begin to hang with those people. They were so much fun and apparently need no sleep after a night of margaritas and dancing.

We stayed at a smaller house in the same villa complex that Manny and Hunter got married in 2 years ago. It was just the 10 of us in our group at the house and it was perfect. We had great food (so fresh-you would not believe the pineapples!) and enjoyed not having a true schedule. We only did what we wanted to and didn't do the stuff we didn't want to. (It was nice living the life Toser lives every day.) The one thing we really wanted to do and did was the canopy tour where you put on a harness and connect yourself to various zip lines and zip from tree to tree going up to 25 miles/hour at times. And when we were done zipping we went on a 3 hour tour (a 3 hour tour) in rafts on the Tempisque River. They billed it as a floating trip but it was more of a let's kill ourselves rowing in a river that isn't flowing much trip. We had fun but man we were tired and I got roasted by the sun. My delicate little skin cannot handle that much adventure in the Costa Rican sun. Of course I only got roasted on the top of my right arm and on the inside of my left leg. I wanted to get some sun while we were there but I wanted a more even color scheme, not the patchwork I'm sporting right now.

Oh well, we're back to the real world now. I missed the boys and I think they missed me. I know I missed my 6th year anniversary of being married to Mr. Awesome. But that's how awesome he is. He didn't bat an eye when we realized I would be gone on June 1st. He's such a great husband, a wonderful dad and my bestest friend in the whole world. He puts up with me so we know he's a saint. I love you Mr. Awesome!

Facts and A Myth

Fact: Tater is great and none the worse for the wear after yesterday. In fact, he's perfect.
Fact: It takes 2 minutes for a fire truck with EMS guys to get to our house
Fact: It takes a really good friend to know without word that you need her to drive you 90 miles/hour to your house
Fact: LBird can make the drive from the pool to our house in less than a minute (LBird is now Danica, as in Danica Patrick the race car driver)
Fact: I can run very fast in flip flops
Fact: We have the best nurse in the world
Fact: Tater loves to be bagged because he's a strange child
Fact: You can prepare for every emergency involved with a trach or a ventilator and it will still take you 30 minutes to realize a plastic filter has caused the ventilator to malfunction
Fact: You can throw a plastic filter pretty far when you're frustrated

Seriously, everything is fine. Yesterday was a great test of the emergency protocol we have for Tater without an actual emergency having to take place. Tater was never in any distress. The filter was cracked and the ventilator worked fine after I replaced it. Our nurse did everything she was supposed to do and we realized a couple of things we hadn't gone over so now she's truly prepared for an emergency. And we were able to meet the captain of the fire station close to our house and the EMS guys are now familiar with Tater and his stuff. I made the guys some muffins and we're going to be big buds, I can tell. Of course, Mr. Awesome was on his way home from being out of town. All the big stuff happens during or just after a trip of his (no pressure Honey!).

And now for a myth: you can ignore something and it won't happen. Ugh. The fact is, Danica and I planned a trip before all of Tater's trach stuff. We put money down and planned everything around Christmas, but after a 3 month hospital stay with the Tater I just couldn't see taking the trip. I didn't want to think about it so I thought it would go away if I didn't. I know I need a break and blah, blah, blah. The thought of leaving my boys is agonizing after everything that has happened. But Mr. Awesome was very insistent that I still go and things started falling into place: we have a great nurse who loves Tater, Mr. Awesome's aunt is coming to town for a couple of the days I'll be gone to help out, Wissa wants Toser to come to her house the rest of the time, Mr. Awesome won't have to take off of work... So early Thursday morning, Danica and I are hopping on a plane and going to an all-inclusive place in Costa Rica with my parents and a couple of their friends.

I'M CRAZY!! It's actually faster for me to get to Costa Rica than to the West Coast but I'll be out of the country and my baby might need me. I'm not worried about who I'm leaving him with because in all honesty, Mr. Awesome and the nurse are probably more alert to things than I am. I'm worried about how I'M going to survive thinking about him all the time. Hopefully some yummy margaritas will take the edge off that and Danica won't let me pine tooo much. Ugh. I'm seriously nauseous right now. I know I'll survive. Tater will survive. It will be a funny story in 20 years (Tater at 21- "Yeah, when I was 14 months old and on a ventilator, my mom took a trip to Costa Rica. Can you believe she abandoned me like that?") We get back Monday so we won't be gone for too long and hopefully Danica will still be my friend after 5 days of listening to me worry about my boys.

Perfect Control

I guess I'm more of a control freak than I thought. (Mr Awesome is nodding his head in agreement right now.) I like to think I'm pretty easy going but I'm realizing I just cannot give up control over somethings and one of those is the care of my son. I know I need help some days-nursing is great in that it lets me spend time with Toser while knowing Tater has someone with him and he isn't just hanging by himself all the time (which he is content to do and I have to make sure I don't take advantage of that too much). But it's nice to have control over our days and not have to explain my plans or why I want something done a different way on any given day. We had a week and a half with no nurses and I kind of liked it. I was worn out but I liked it.

I know most of you think this is crazy but we're thinking of letting our night nurse go. Tater isn't requiring as much care as he was when we first came home and we feel like we're having to find things for the night nurse to do. We really like our family time and want Nate to be downstairs with us as much as possible. Bedtime is crazy without the extra hand but it would be crazy if Tater didn't have the trach/vent combo. We want things to be as normal as possible and normal for us is not having someone waiting on us to finish dinner so their job can start or not going on a walk because Tater's bath needs to start at a certain time. Of course, it would be ideal if we could have her occasionally so Mr. Awesome and I could go on dates and such, but that's not possible so we'll sacrifice that for the greater good. (Do I sound ungrateful or what? It's just really hard for us to have someone in the house all the time-especially if we're both here and there isn't much to do in the first place.)

We'll keep our day nurse. It's still difficult for me to have someone here the hours she is but it's a better fit, all of us like her and she really is a big help. She doesn't mind Toser climbing into her lap to read books and she loves both the boys. Plus, she's Italian and is teaching them some Italian phrases. Win-win all around in my book.

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So the last few days have been perfect. Saturday we went to a local museum to see barnyard animals and to have a picnic. The weather was perfect, the boys were perfect-we had so much fun. Then some of my family came over Sunday for a picnic and that was great. And while yesterday started out kind of bleh for me, I rode my bike to a dear friend's house for a glass (or 2) of wine last night and the day started looking up. It was wonderful to sit and talk with a kindred spirit who I know is on her way to being a BFF of mine (love you Bek! I will be very mad if you don't do those t-shirts). And to finish a great evening, while I was riding my bike home the weather cooled off, the wind was blowing, the moon was rising- it was a gorgeous ride. When I rolled into the driveway I realized LBird and her daughter were here. Yay. I love LBird to death and while I tease her way more than I should, she still comes around. She's one of my best friends in the whole world and I'm lucky to have her in my life. She's really hating that I'm calling her out right now but that's one reason why I love her.

Hmmm? It seems the things I cannot control in any fashion are the things that are making me happy. I wonder what that means and if my thick head can handle that? Tater is healthy, Toser is happy, Mr. Awesome and I only want to kill each other occasionally. Life is pretty darn good right now.

Random Thoughts (or Venting)

Never say never because never usually finds a way to make you eat crow. Before you have kids you say, “My kid will never __________.” And then of course your kid does whatever you said they would never do. I think it’s the world balancing itself out by taking self-righteousness and replacing it with humble justification. Toser watches more TV than I would like some days (my kids won’t depend on TV for entertainment or “self-righteousness before kids”) but I need him to be occupied more than 15 minutes at times in order to get stuff done (humble justification). He’s not addicted and turns it off when he’s done but still, it’s more than I would like some days. Oh well.
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I used to pride myself on being someone who could keep things straight in my mind without having to write anything down. I could remember a phone number after dialing it once. I could keep appointments and remember birthdays without having to look at a calendar, although I would usually put in a calendar, just in case. Well, now I need 10 calendars and I have notes all over the place and I still can’t keep things straight. AND I HATE IT!!!!! Notes are for the weak, or something like that. So, I knew Tater had a follow-up appointment in Bham on the 14th. Okay. Been thinking about it, what we need to take, questions to ask, etc. Well for some reason none of that entered my mind when I started planning a birthday dinner for a dear friend of mine for the night of the 14th. I sent out emails, planned on picking everyone up and was excited about actually doing something with my girls. I would think about the dinner for a second, think about the appointment in Bham the next, and it never occurred to me that I wouldn’t be able to do both. The appointment was one thing, the dinner something else, even though I knew we wouldn’t get back from Bham before 8p and the dinner was at 7p. So I had to bail on something I had arranged and miss out celebrating with a friend because I’m crazy. Sorry H.E.!
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I got a parenting magazine yesterday and one of the cover blurbs is “Boys vs Girls: Who’s Easier to Raise?” It irked me. Some of the stuff people worry about seems so silly to me. (One of the other blurbs on this magazine is, “How to Handle Annoying Advice.” Um, smile and nod while the offender is speaking and then when they’re gone mutter under your breath how stupid that was?) I mean, c’mon. What does it matter which gender is easier? You have boys, girls or both and you raise them. Period. Why make it harder on people (okay, the magazine is geared towards moms) by raising an issue that no one can control. There is no guidebook to life. Everyone is doing the best they can with what they have. We make life harder by trying to control things that are uncontrollable. We make ourselves miserable by comparing ourselves to others. Why? What’s the point? The best gift we can give to ourselves and to our kids is to live life by our instincts and with love. The other stuff is just stuff.
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The Bham follow-up visit yesterday went very well. The Pulmonology team at Childrens’ is great and all about making life easier for kids on vents and their parents. They asked what is working for us and what isn’t and changed the stuff that isn’t. That simple. They look at each kid for what they are and not what some textbook says they should be. While Tater was still in the hospital, one of the doctors said that we’ll go where Tater takes us and that seems like a good plan to us.

Happy Mothers' Day

I'm working on a post... I promise I will try to get an update out this week. We didn't have nursing last week, I was sick with the stomach bug from hell and life with 2 boys is crazy enough.

Just wanted to say Happy Mothers' Day to my mom (wonderful woman, we call her Coco-mwahh! Love you!) and to all the other Mom's in my life. I wouldn't be who I am without the support of all of you.

And also, can you say a quick prayer for Mr. Awesome's Aunt Judy? She's like the mother-in-law I never met-crazy and loving and ready to bring me back down to earth when I need it. I love her so much and she's been dealing with an illness for a while. We haven't been able to keep in touch with her as much as we would like due to obvious reasons but that doesn't lessen our concern or love for her. We love you Judy!

Home is where the spiders and ants are

I'm sitting here watching this HUGE spider crawling on the outside of our back glass doors, trying not to be too squeamish. I'm actually a little nauseous thinking about it getting into the house. ugh. But, apparently I've passed on my hatred/fear of spiders onto Toser and he seems to be a bit of a sissy around bugs. Not that I want him being buddies with creatures, but he squeals every time he sees a creepy crawly and that might be a little embarrassing for him later in life. ahem. It's hard to find a balance between being neat and tidy and scared to death of spiders and raise a son around so much nature. Last week he fell into the creek behind our house, got a little muddy and was devastated. I told him it was okay, boys are supposed to get muddy, and now it's become his mantra. He keeps telling me boys are supposed to get muddy and every time he says it I think, "Omigosh, my carpets are white. He's going to ruin our house because I'm trying to make him 'manly.'" Add all this to the ant infestation in our kitchen and I'm a little on edge about the mud and bugs. At least the hospital was sterile and bug-free.

So, we're finally getting back to normal. Tater is thriving. All he wanted to do the first 2 days we were home was sleep. The third day I decided he could catch up on sleep later and he needed to start living life so we got him up and we've been toting him and his gear around the house since. He definitely doesn't travel light so it's not a piece of cake; every where Tater goes so does the vent, the emergency go-bag and the suction machine that sounds like a weed eater. We have 2 nurses, 16 hrs/day for 4 days/week. This helps out a lot when it's time to feed Tater or do his breathing treatments and Toser is needing some attention. Mr. Awesome went back to work last Wednesday and while I COULD do all this myself, I could also DECLARE MYSELF CRAZY and become a drunk. So I'm grateful for the help and the extra time I'm getting to spend with the Toser. We've had a few rookie mistakes but all in all we're doing well and settling into our new normal (man-that normal keeps changing).

Time for Tater to get a breathing treatment. And Toser to eat lunch. We don't have a nurse today so I have to divide myself into 2 to get anything done. Thank God for Steak Out.

LJ aka Lily is here!

Our really good friends, CC and TC, welcomed little baby Lily yesterday! This little girl is up for some major spoilage because CC and TC have had a 3 year start on my kids and I'm all about the payback. It might help that she is SO CUTE. And is new and fresh and my mouth might have been watering when I was holding her. Mr. Awesome is all, "No way are we having another one," but we'll see. You cannot hold something as precious as Lily and not want another. And I can't even begin to tell you how precious she is. Awww! I might have to bring her home with me.

Congratulations CC and TC! We know you'll be the best parents and we love all three of you very much. Aunt H & Uncle M be on guard because our dinner dates are about to become play dates (as if they weren't already).

Who's ready to go home?

We are!! I think each person in our family has reached his or her personal limit and is about to blow (well, except Tater who thinks every day is a party-poor kid is going to have the hardest time adjusting at home without all the nurses and RTs and doctors in his face telling him how cute he is). I'm usually pretty tolerant of the staff but even I'm getting frustrated with them now. We're supposed to be rooming-in and taking care of everything for ourselves but we have to ask for Tater's formula, meds, etc. And then they come in to "see if we need anything" if we haven't asked for whatever when they think we should have. I will be ready to be fully "in charge" at our own house. I know it's going to be exhausting and frustrating at times but we'll be home!!!

One of the many things we've been trying to do while we've been here is to get Medicaid for Tater. We have great insurance but the copays and the 20% we pay on numerous outpatient procedures and equipment are stretching already tight finances a bit. Tater qualifies for Medicaid because he has a "disability," and it's been a PROCESS to say the least-very frustrating. I was told it could take until July to actually get Medicaid so we resigned ourselves to waiting. LOOOOONG story short (imagine me, short) Tater has had Medicaid since April 1st and I found out through a fluke on Friday. No one told us he had gotten it and who knows when we would have found out otherwise. I'm still very frustrated with the whole process but my new mantra has become, "play the games to get the prize." The prize in this case being Medicaid. There are several other games I'm in the process of playing so if you catch me on a day I've been playing one of those, please forgive my bluntness and bitterness. :)

The great thing about Medicaid is private duty nursing (PDN). Our insurance does not pay for PDN but Medicaid does. And we can't leave Tater with anyone who doesn't know the ins and outs of trach care/changes and ventilators-literally. Not even for a minute. That means we were pretty much looking at a life of constant trach and ventilation, all the time. We love our kids like nobody's business, but the thought of never getting a moment alone was not adding to our excitement of going home. We're not ones to go out all the time but we do like to get away from the boys for a break every once in a blue moon. And while PDN has many flaws and we'll have to train most of the nurses in using Tater's vent, we'll at least have some opportunity to get out of the house sans all the equipment. You'll just have to forgive me in the future when I'm complaining about how horrible all the PDN nurses are and how we can't trust any of them-I'm still in the idealistic phase of all this.

We bust out of here tomorrow (Monday) afternoon. And not a moment too soon. We've had a good experience here but will not miss this place AT ALL. It may be a few days before I get a chance to post again. Our plan is to get home and be a family of four for a few days before the real world comes rushing back. Please forgive us if we don't answer the phone or emails-we'll just be busy living life at home in our PJs.

Rooming-In

Everything we've learned the last few weeks has led up to today... Today we loaded up Tater, his ventilator, his portable suction, oxygen, oximeter and go bag and went to the Birmingham Zoo as our out-of-house transport with the home vent program nurse, respiratory therapist and social worker. We did all this to prove that we can load Tater and his stuff and make it out in the real world. And we passed! Tater didn't dig being at the zoo, but we PASSED! No more teaching or classes, no more getting checked off on trach changes and suctioning, no more waiting for the next thing because the next thing is here.

So now we're "rooming-in" with Tater which means we're responsible for every bit of the care he needs. We've been doing this since we got here so it's not a big deal to us to "provide" all of Tater's care. But this means we're so close to going home. Tater's discharge date is Monday and we CANNOT wait!

This last week has been crazy with the learnin' of stuff and wrappin' up of things and I have so much I want to post about but right now I'm going to sit here with Tater and snuggle. (oh- and I've uploaded some new pics to: http://picasaweb.google.com/tosertater/ToserAndTaterBdayPics)

Happy Birthday Toser!!!!

Toser is 3!!! His birthday was Sunday! And I literally just got a chance to sit down and write about it... Saturday, we brought Toser to Birmingham to spend the night and he was so excited to be in "Burmigham." He was very grateful the entire time, continuously saying, "Oh Tank you," and was perfect during breakfast at The Pancake House on Sunday. We had plans to take him to Thomas and Friends at the Heart of Dixie Railroad Museum but they had storm damage and all Thomas train rides for the weekend were cancelled. I was crushed. Toser didn't know we were planning on taking him so he was fine but I don't think I've recovered from the disappointment. I really wanted to do something special for him and this would have been perfect. :(

But all is well. We took him to the McWane Center here in Birmingham as a plan B (this was plan B because the Bird Family gave us gift certificates to the McWane Center-thanks so much Bird Family!). Toser had an absolute blast. He wore us out and had fun and was perfect the entire day. He did freak out a bit at how LOUD the IMAX dinosaur movie was but recovered from that and ended up eating popcorn and being fascinated by the dinos. I'm serious when I say he was perfect. We went to a little dive for lunch and had to wait 20 minutes for food and although Toser was starving and tired he never once got whiny and impatient. He stayed that way while we were at the McWane Center and until we got back to the hospital where Manny was waiting to take him back home.

Toser has grown so much the last 2 months and I'm very sad I've missed it. He's gone from being 2 in every sense of the word to being a grateful, polite social butterfly. When Tater went into the hospital, we couldn't get Toser to say hi to people he didn't know well and now he'll talk to anyone. Last Friday the vent program staff went to our house for a home inspection visit to make sure we didn't have lead paint peeling off the walls and had adequate space for the vent and supplies. As soon as they walked through the door, Toser was trying to get them to go upstairs to see his room and his ride on Thomas train. Mr. Awesome and I just stood there with our mouths open because we couldn't believe how talkative he was being. And he was that way Sunday at the hospital, telling everyone who wished him a Happy Birthday, "Tank you." I'm sure we'll all "get back to normal" when we get back to normal but it was great to have this weekend and see the new Toser.

I attribute the "new" Toser to the family that has stepped in and taken care of him. Everyone has such different, wonderful ways of taking care of him and he's flourished with the diversity. He's definitely learned to roll with the punches and I know he's a better kid because of it. And he became a social butterfly because each one of his aunts is one in their own way and he really had no choice. We love you Toser. You make our lives rich with experience and fun with wonder. You're a great kid!

Never gonna give you up

This video cracks me up. How can a guy with such a deep voice have such little rhythm?

It was an off day for class but very busy with doctors and therapies. I promise I will update about what we've been doing soon. Everything is going really well and we should be going home on the 14th!

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!