Preventive Maintenance

When I was in college, learning how to operate and repair massive ship engines, I'm pretty sure that one of my textbooks had this same title.

That was such a lifetime ago.

But what's interesting is that, even though I surely do not remember half of what I once learned, the principles still apply today.

I always think of that parallel whenever we take Playette to see the Pediatrician or some specialist. Almost every time we have an appointment, it's not because she's sick. It's just preventive maintenance.

There's a list that parents and doctors use when it comes to kids with T21. It's a reference guide of what needs to be done and when. We all know the deal, more or less.

Thyroid checks regularly, along with CBCs (I always ask for a "manual diff", which makes medical professionals think that I'm one of them, but really I just heard it said when Playette was a newborn and it stuck with me).

Then there are neck/spinal x-rays for AAI as well as tests for Celiac Disease that start at about age 3.

Most of us find it pretty typical stuff to see a Cardiologist, Endocrinologist, Audiologist, Ophthalmologist, and ENT, even if our kids aren't showing symptoms of anything.

It's just what we do.

So, in that vein, it was recommended that we get Playette a Sleep Study. Now, you may be wondering, "Haven't you done that already?" but no. That was a Swallow Study. Twice.

Orrrr you may be thinking of the non-sedated EEG we did more than two years ago. Similar goop in the hair, but looking for something totally different.

This most recent test, which we have attempted to have done in the past and never really got there for one reason or another *coughINSURANCEcough*, came about after the last ENT visit where it came up, again, that Playette snores and fidgets in her sleep. In and of themselves, not such a biggy, but when you add in that extra chromo, it means that a sleep study is in your future. Sleep apnea is not uncommon in the Ds community and you can also get info that may lead you down the path to a Tonsillectomy and Adenoidectomy (T&A).

So that's what we did, as a family, on Tuesday night.

Because we're all about being miserable together.

No one escapes.

It wasn't too bad, actually. I mean, we were all sleep-deprived the next day, but there are much worse things.

We got there at 7:30pm and left at about 6am. It took some time to get the machines or whatever (I have no idea since they weren't in the room with us) going and then more time to stick all the electrodes thingees all over Playette's body.

It was kinda like watching the making of Thriller.







She was much more agreeable than I expected and we were actually glad that we did it now, when she could be amazed by the process and not just 100% irritated. She did try to take the one off of her foot for a while and the final straw of sticking something up her nose was met with some distaste, but all-in-all? Not horrible.

Even though, personally, I thought she looked hilarious. I wish I had gotten a picture before the hole was cut out over her face. That was classic.

Playette seemed like she was ready for bed at just the right moment, but that didn't last. It was if, all at once, she remembered that she was in a new place and there was no way she was going to sleep through the party.

Even though that was kinda the point. To sleep.

BD and I tag-teamed until she finally passed out.




And then something in the room set off my hacking cough so BD made me get up and take the other bed while he took my place sharing the one with Playette.

Because doing this once is one thing, but doing this twice? Uh-uh. We weren't trying to go out on a technicality.

This one is going in the books as a mission accomplished even though the results won't come back for a couple of weeks.

=====

For those that wondered, the second hospital visit that morning was for me. Just an appointment. Nothing to be concerned about. BD had taken the day off so he was lucky enough to sit through it all with me.

Retail Therapy

We've got all those other therapies going on, might as well add another.

Because, really, it's about that time.

Check out Playette napping.


Closer...



Advice for how to handle itty-bitty waists with relatively long legs is greatly appreciated.

Spent

It's been one of those days.

Not enough sleep.

The headache won't stop.

I almost quit my job. (I know. Enough with the job issues already.)

The IFSP meeting. Ok, so that didn't go horrible or anything (amazing), but it's absolutely not something I felt like doing today. We signed it this time, but have to reconvene on the 15th to resolve some additional issues with ST services.

And then the guy I was planning to marry when I was 5 goes and dies. (Those links are to the posters I had on my wall and door as a kid.) I can't even watch the news because I can't believe it.

It's not so much that it's MJ. Well, that's part of it, true. It's more about not wanting to think about mortality and the memories I have of my childhood that are somehow connected.

I remember my mother taking me to see the Jacksons' Victory Tour at the Meadowlands. Floor seats, y'all. My mother was the kind of person who did this type of thing for a kid way before I could ever appreciate it. We bonded over that tour though. She had the Jackson 5, I had Michael. Sigh.

Anyway, I wasn't intending to dig that up in this post, but there ya go.

A few people have asked me today how our vacation was.

Did I fail to mention that?

Yeah, we were on vacation.

I tend not to annouce those things.

I can't wait to look back at the photos (hundreds of them, I'm telling you) so that I can remember what a great time we had before the flight cancellations took us so far off track that when we got home all we could think about was, "Well, that last part sucked."

Thank you all so much for the kind birthday wishes for the Littlest. She had a great time while we were gone and even got to add a new state to her list. (And one more for me, yay!)

I just realized that I, too, have become the the kind of person who does this type of thing for a kid way before she could ever appreciate it.

Heh.

Oh, well.

We're still holding fast to our "You must be able to walk 5 miles without whining before we take you with us to Disney" rule.

Catching Up

I have a bet going with BD that I can get this post done in 30 minutes. I'll do my best.

Ever since Tricia posted about a great deal on diapers, I've been following Never Pay Retain Again. I've been slacking on my bargain hunting lately, so I got really excited when I saw a post about a promotion at Safeway on Friday. I ended up going twice. The second time was at midnight and I walked away with the following stash for $7.77 and $12 towards my next shopping trip. So I actually made money. Woohoo! I love stuff like that.


Since I spent the wee hours in the grocery store and was so amped I couldn't sleep and then passed out on the couch, I woke up tired on Saturday morning. Which was not ideal since we had a full day planned.

First, I went to kickboxing. Go me. I'm still struggling after skipping the past month.

Then, I took Playette to a Month of the Military Child celebration. There were bounce houses, face painting, bubbles, balloons, and a band. Playette was digging the music. Those girls were impressive (and cute!).

The idea was that I would take her for an hour, come home for her nap, and then head to the evaluation.

That never happened.

Shoot, we spent at least 30 minutes just eating pizza!

It was very worthwhile for other reasons though. There were representatives there from all kinds of organizations that support children so I had the opportunity to speak with someone from Easter Seals as well as a nutritionist from WIC who gave me some tips that may help in increasing Playette's weight which has been plateaued for the last 6+ months (ugh).

Amazingly, with only the car ride time to sleep, Playette did quite well during the eval. I was prepared for a meltdown.

We got started a little late and I was totally on the defensive, but eventually the walls came down and I even apologized to everyone I was throwing shade to since I walked in the door at the end.

The best thing was that I got to speak at length with the center director. She knows Playette since we go there for ST, but since she doesn't work with her regularly, I was able to get a fresh point of view that I could appreciate since she wasn't a stranger and I didn't have to start our story from scratch. The best news is that apparently our Regional Center has just entered a contract with this place and we're now going to work on seeing if Playette can participate in their program on a more regular basis. We could never afford it on our own. We're talking 3 hours/day, 5 days/week for $1500/month.

I almost fell out my chair just typing that.

Add in the fact that we'd still have to take her to daycare and pay for that in full since 3 hours a day just isn't going to cut it with our schedules.

But I like what they're doing there, so I've got my fingers crossed that we can at least get her in for a couple of days a month.

Today, we got up and went to Parents as Teachers, which was great as usual. Playette was all over the room and into everything. She loves it and I'm glad that I have the opportunity to take her to a class with other parents and kids this coming Wednesday.

I'm so, so tired thogh...and tomorrow's the first day that I have to be at work 30 minutes earlier than I have been (doing this will allow me to have every other Wednesday off).

I don't feel like I'm doing what happened this weekend any justice right now so I'll try to elaborate a little more in my next post.

It's all basically related to the IFSP meeting from last week. I need to write a proposal, requesting the types of services that we want to have in place for Playette. I don't want more of the same because I feel like it's pointless, among other things.

That meeting was just a colossal waste of time and instead of sitting in a room and being read to (again) by a group of people that are so being the times it's not even funny and being told what our child can't do even when she really can? Eh. Enough of that. Consider it a lesson learned.

We all know that we're the best advocates for our kids, whatever their needs may be, but sometimes it takes it being put in your face for you to realize that no matter how tired, deflated, emotional, or inexperienced you are, there comes a time when you have to step up and make your presence known. I thought I was doing an ok job up until now. Walking into an IFSP meeting with this particular group of folks and assuming that all is going to go well if we allow them to take the lead simply cannot happen. And it won't. Ever again. This is one area where I can't let laziness take over.

Ok, so that took me 59 minutes. Bah!

I have no idea how that happened.

Sleepy time.

Today...

- Playette woke up way too early. I somehow convinced her to sleep in with me.

- I ignored the fact that I hadn't been to Kickboxing in two weeks and continued to sleep.

- I had tortellini and pesto for breakfast.

- My mother showed up.

- I had a run/walk/vent session with FNPT.

- I looked for handkerchiefs online.

- I learned that the ideal handkerchiefs are hard to find and/or quite expensive to purchase in bulk.

- I realized that I had no idea what proper attire is for a toddler at a Memorial Service.

- I got upset and cried over all the things that seem to be happening all at once that I don't know how to "fix." Things that include, but are unfortunately not limited to, whether or not to change Playette's daycare room, a more frequently unreliable respite worker, new job anxiety, conflicts with our landlord, etc.

- I wanted to get out of the house so off to the outlets we went.

- I enjoyed some In-N-Out for lunch, topped off with a milkshake. Felt a little better.

- I finished the first chapter of The Memory Keeper's Daughter in the car.

- I picked out some shoes.

- I laughed because Playette refused to walk in one pair. It was like she was stuck in one place.

- We watched her walk in two other pairs and subsequently bought those. I'm still confused over whether or not Playette is "ready" to wear these yet though. Ugh.


- I found a dress. And a shrug. Very cute. Appropriate?


- I bought boring, yet necessary, socks.


- I read Silly Sally at least 5 times. At least. And I love when I get to "tickle Neddy Buttercup" every single time.

- I finally convinced Playette that going to bed is not the enemy.

- I'm writing my first obituary.

- I may eventually get to eat dinner.

EEG

We're leaving shortly to take Playette to get a non-sedated EEG.

There's this thing she does that has always bothered me. She stiffens for a couple of seconds. I used to think it was because she was excited. Or sleepy. And then I realized that it may actually be totally random. And then I started worrying about seizures. Doctors would tell me that it was just her neurological system getting the kinks out because she was a baby and was new and all that.

But, nah. Not enough data for me.

So I've been fighting for a long time now to get her an appointment with a Neurologist so that I can either be put at ease or they can develop a plan of action.

We still don't have the appointment, but we did get an EEG out of the effort. Once the results are reviewed, the Ped will see if we need to take the next step.

Why they are being stingy with this appointment is particular, I have no idea.

So, the way it works with the non-sedated EEG is that you are supposed to deprive the parents child of sleep. Playette could only sleep between midnight and 5 am last night. The hospital where we're getting this done is 30 minutes away so we both have to go in order to be sure that she doesn't fall asleep in the car. The idea is that she's super tired by 8:30 so that they can get the electrodes on and get an accurate reading.

Screw the dentist, I'm really not looking forward to this.

More later...

Good Grief

When was someone going to tell me that it's THURSDAY today?

I was completely oblivious until like 5 minutes ago.

SMH at myself.

*sigh*

"The doctor said I need a backiotomy."

Since I haven't been to the ER since my double-header back in June, and since I guess my outpatient surgery doesn't count towards my tally, I went back again today.

Good grief. Seriously? No, really. Seriously?

I'm back at home and in the bed now. Again. The drugs are wearing off, which sucks, but at least allows me to post somewhat coherently.

To back it up a little, on Monday I decided to ride my bike it to work. Why? Well, I've gained an obscene amount of weight since Playette was born and then I spent a month on the road eating crap which just, frankly, didn't help that situation one bit so I thought I'd learn to appreciate the scenery of our hometown, save gas, and sneak in a mini-workout a few times a week all at once. Good idea, right?

Well, it's Thursday and my bike is still at work.

I had to leave it there because on Monday evening my body was overwhelmed with pain. My lower back began to hate me in the morning and grew more angry as the day wore on. My co-worker brilliantly deduced that if walking was proving difficult for me that perhaps riding my bike home wouldn't be such a good idea. I disagreed (of course!), but then when I looked out the window and saw how cold and dark it looked, I changed my mind. It wasn't about my back. No, sir. It was about the raccoons. I knew they were out there. And in my weakened state, I wouldn't be able to defend myself. I could picture them chasing me on the bike (in my mind they are as fast as they are vicious) and then my back would lock up and I'd fall to the ground. To be eaten.

You didn't think I'd be over that already, did you? HA! Never.

So, yeah, I accepted her offer to drive me home.

I promptly crawled in the bed and BD took care of me. Very good care of me. I was out of commission all day on Tuesday, but was convinced that I was fine to work yesterday so I went in.

What a day that was. I had to get Playette to daycare early because the OT was coming. I could barely lift her which leads me to think that chicken nuggets, her newest meal of choice, are made of bricks. Anyway, so there was OT, then work, then home to pack the diaper bag, then back to daycare to pick her up, then off to an appointment, immediately followed by our monthly Parent Support Group meeting (hi, ladies!).

By the time we got home, put Playette to bed, and settled in for a romantic evening of Burger King and Bridezillas on TiVo, I was done. Done Done Done.

The pain kicked in for real again while I was trying to sleep and this morning BD found me on the floor. I couldn't get far and had given up. It was ER time.

My husband is amazing, y'all. He got Playette ready and fed, helped me put on my socks (complete with commentary), piled us in the car, dropped her off, and got me to the hospital. He even pushed my wheelchair without knocking me into any walls (maybe he took that class too?). We argued playfully about BlackBerrys, Tiger Woods, needles, pancakes, and Obama (no relation). If not for the circumstances, we could have called that a nice little date.

After I got a shot and some Vicodin, we got the results of the testing that was done (all fine) and were on our way. My sweet BD got me some lunch, filled my prescriptions, and helped me settle into bed before returning to his afternoon classes. When he's done, he'll take Playette back to the hospital for PT and then get back to his school work since he's got to play catch-up after missing the morning.

Me, I'll be here, trying to make myself relax and counting how many naps I have to take before I can finish an actual post (today's count: 3).

Oh, and the diagnosis was a "strained lumbar." I follow up with my doctor next week to see if there will be any next steps or if this was just a one shot (ha!) deal. Playette and I really didn't need any more appointments. Between the two of us, we're pretty booked in that regard through the end of the year. Ah, whatever. If we can laugh through trips to the ER then I guess we're doing ok.

Me and My Big Mouth

So, about a week or so ago, when I first began this blog, I made a little comment that has come back to haunt me.

That whole sleeping through the night thing. Yeah, about that...

Malea, in her infinite wisdom, has decided that one year of rest for the 'rents is plenty. This week alone, we had 2 nights in a row where she woke up at 1am. First, she'll play in her crib, babbling to herself. Ok, that's not so bad. It kept me up since the monitor is just that good and we can here ants talking about their weekend plans through that thing, but no biggie. But then the whining begins. Nnnnnnaaaaaaaaahhhnananadadadadadadadaaaaaaaaaaaaa. Over. And over. And over.

Thus begins the dilemma. As The Big Ones, we must assess the situation. Is she hungry? Probably not. Is she in pain? Hmmm. Is she bored? Perhaps. Is she PLAYING US? Yet to be seen.

The first night, we pretty much just caved. I mean, yes, she's been a great sleeper in general, but there have been a handful of times when she woke up in the middle of the night and since it was so rare, we'd just bring her in the bed with us and voila - problem solved. No harm, no foul.

But when you hit that second night in a row? That changes things. Cause, as The Big Ones you can't help but wonder if she's testing boundaries. And that's kinda scary cause - hello...she's 1. What are we in for? (don't answer that)

I know some folks are all about the Family Bed, but that's not our thing. Malea slept in her Pack-n-Play bassinett from the time she came home from the hospital until she was about a month old. Then, she moved on to her crib, in her room. We chose that route because we were trying to avoid scenes like the following.

It went a little something like this:

0100
Whining begins. We wait.

0130
Whining continues. Time to huddle and come up with a plan.

"We can't give in. I saw this one episode of Super Nanny and Jo was all, 'Be strong. Just pet the baby and let them know that you're there, but no talking.' Or something like that. So, yeah, let's do that." If all else fails, I suggest turning on the mobile. BD is all, "We haven't used that in months. Pfft."

0200
Seriously? She's not tired yet? Doesn't she know some people gotta go to work in the morning?

I go into the room and try the technique. I even give her a little bear to keep her company. Whew! That actually worked. We are sooo good at this. As soon as I leave the room - Nnnnnnaaaaaaaaahhhnananadadadadadadadaaaaaaaaaaaaa

0215
BD gives it a try. Changes the Playette's diaper. (cause she's playing us for sure now) Rubs on some Orajel in case, just maybe, she's in pain from teething. Rocks in glider. Lays on floor with the Playette. The Playette attempts to actually play with BD, but, um, it's 2:30, so he's not feeling it. I go in the room to see how things are going, see them on the floor, pet BD reassuringly this time, and go back and get in the bed and start watching Shear Genius cause I'm up now.

Minutes later, I hear the mobile. Ha!

0235
BD brings the Playette to our bed. She quickly, happily falls asleep.

Score: Playette - 1, The Big Ones - 0

0300
Shear Genius is over and I don't have much left to choose from on TiVo. My recording of Army Wives is of some other show. Ugh. I look over and see the Playette sleeping and get a bright idea. This heiffa needs to get back in her crib. I take her there.

0303
Nnnnnnaaaaaaaaahhhnananadadadadadadadaaaaaaaaaaaaa

0308
I bring the Playette back to our bed. She quickly, happily falls asleep. AGAIN.

Score: Playette - 2, The Big Ones - 0

This isn't looking good for us.

Update:

We went out last night (Wanted and P.F. Changs) so the Playette stayed home with a sitter. She fell asleep around 8:30 we were told and slept through until 6am. If she was up in the middle of the night, we missed it (probably because we got so little sleep the night before). I can't help but think that she knew we weren't home when she fell asleep so she didn't push the envelope. We'll see what happens tonight.

We're on our way to Oakland today to look at cars. It's two hours away and if BD is as happy with this one car in person as he is with what he saw on the internet, we're going to be a 2-car family again. Which means that I'll have to drive the truck back. I so don't want to do that. And I hate car notes, but that's a post for another time.