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Monday, April 28, 2008

5 years old...


Dear Peanut,

I can hardly believe it, you're 5 years old today. Five, as of 2:53pm.


We've already had quite a few adventures. I've learned so much from you, about you, and even more about me. I had no idea all those years ago just how drastically my life would change. The cliche is that once you have a baby 'normal' ceases to be. It is also said that it takes about a year to 'recover' from having a baby. Well, baby, I'm still recovering, and I know that my life will certainly never be the same.

On that glorious April day so long ago, you were forced into this big old world earlier than any of us imagined, nearly a month premature. The doctors watched my pregnancy with you as carefully as any other mommy-to-be's. Everything went just about as you would expect. I felt sick and miserable the first few months after you made your presence known. Then, life started to 'normalize' again, and I felt better. In fact, we were cruising along at quite a good clip. I got a new job, and your daddy and I moved to a strange new city, all alone, and looking forward to the adventure that was to be you.

Then, about 7 months into my pregnancy, the doctors spotted some abnormalities: you weren't growing. You were so tiny. I had to go on bed rest, and the doctor considered putting me into the hospital to rest, in order to keep you safe. It turned out you had a condition called 'intra-uterine growth restriction (retardation)'. It meant that for reasons unknown you just stopped growing the way you should. Because of this, the doctors decided that you could 'cook' inside of me no more: it was time for your eviction. Should you stay inside of me any longer, the chances of you surviving got smaller and smaller, and we'd hoped and prayed for you and wanted you so badly, that just couldn't be. So, your introduction to the world was scheduled: you would be born on April 28, 2003.

And so you were.




I labored to give birth to you for exactly 5 hours and 23 minutes. I pushed for a total of 10 minutes, and two pushes until you came out. You see, the doctor was worried about your little heart and all the stress that being born would put on you, so she told me that we were going to have to have you via cesarean delivery. I would have done anything to protect you, and the doctor knew it. I think she saw the silent tears slide down my cheeks, she saw I was so worried and scared for you, that she said to me, "you're going to have this baby right now. Now push!" And so I did, and so you were born.



You were such a tiny little thing! Only 5 pounds 12 ounces, but so long--19.5". You breathed right away and I heard your tiny little mewling cries, and I knew we'd be OK.


Your first days in this world were tough: You wouldn't eat, and you had jaundice so badly you were as yellow as a squash. You had to sleep under bilirubin lights (like a tanning bed!) to help your little body break down the excess iron in your system, and we had to measure what you ate in cc's (that was to be the way of it for the next few months, you so disliked eating!).

Your daddy and I drove you home, all by ourselves, and walked into our tiny little home thinking to ourselves, "oh my. What do we do now?" Life was pretty hard. We were all alone in a new city with nobody to help us and nobody to call to ask advice. Our introduction to being your new parents was a real trial by fire. It is by the grace of God alone that we made it.


Both your daddy and I were out of work by the time you were 2 months old, and so your daddy went to school to learn to drive commercial trucks. Soon, he was done with school, and headed out on his new career. It was hard for us, because your daddy was gone for as much as a month at a time, and it was just you and I; no family and few friends. It is a wonder to me, as I look back, how we ever made it at all. I suppose it was due to how stubborn you and your mommy are.


Time has gone at such an erratic pace over these years. We struggled with you every day. Your little body was so weak, and you were so tired all the time, you didn't make your 'milestones' when you should. I took you to a big city, an hour's drive away, to the physical therapist's office, to help you learn to roll over, sit, crawl, and eventually at 17 months of age, to walk. It was a long and emotional journey.


As a baby, you hardly made a sound, and you didn't much care to be held. I always thought it was because I did something wrong, or that you were rejecting me on some level. It left me with many 'hard' feelings. But, we learned why you acted this way much later on.



You didn't talk when you were 'supposed' to talk, so we took you to doctors and specialists to try and help you out. You didn't talk until you were about 3.5 years old! And, when you did talk it was only your mommy who could understand you.

It turned out the reason why you didn't talk, and why you didn't like to snuggle was because of a disorder you have. It is called PDD, and it is on the Autism Spectrum. Your doctors said because of this, you learned from the world in a different way, and you would interact in a different way. It doesn't mean your way is wrong or better than my way, it is what it is: just different. We work each and every day to make your world more understandable to you, and to understand you better, ourselves. It is a journey of a thousand steps, and we're only 5 steps into it.



We've come so far, together, you and I. Despite all your challenges, from birth-on, you've come through far better than anyone could have predicted. You laugh, and smile. You sing and dance. You love to go to gymnastics and swing on the bars, and bounce around in the 'cheese pit'. You're learning how to swim! (and to think, you used to scream and cry if any water so much as touched your head) Just last week, I watched you do 40 'dunks' under water, with nary a tear! You have your bad days (and boy are they bad) but, the older you get, the more your days seem to be good, really, really, good.





You are an amazing little girl, and you amaze me each and every day. Just when I feel like your challenges are insurmountable, you do some sort of little, ordinary, every-day miracle, and in that instant the sun begins to shine, and all the little challenges and struggles we face, melt away for that glorious little instant.







Happy birthday, my precious little miracle. You are my bestest girl; always.



Love,

Mama

Friday, April 25, 2008

Friday, bloody, Friday (or the day from Hell)

Where do I even begin? Well, for starters, if you've got a squeamish stomach, skip this one; if you're not into listening to drama, skip this one; if you're just not willing to listen to me whine and rant and rave, just skip this one and check back another day, like on one of the days where I post goofy pictures (like the peeps) or photos of slumbering, fuzzy kittens in the sun.

Warning: Today was a bad day.

Things were going 'swimmingly' up until about 11am. That's when my dear friend, who was watching the kidlets, calls me at work to let me know there's been an 'incident' with Peanut, but that she was ok. Whenever someone says there's been _______ "but such-and-such is OK" you know it is bad. What they're really hoping is that they can be responsible and let you know what happened, all the while silently praying 'Oh dear God, please don't let them freak out. Please don't let them freak out'. You know that prayer. The one you say when you're certain all of it (and then some) is going to 'hit the fan.' Yup. That one.

Well, after the phone call, it is pointless to say, I immediately left work, and headed out to get the Peanut and do damage control. En route I phoned the pediatrician's office, silently thanking God for the invention of cell phones and the affluence of my family to be able to afford one. The receptionist clicks onto the line: "Dr. K's office. Can you hold for a moment?" Uh, lemme think about this for a nanosecond: 'No, not really." And then I explained my situation. Thank goodness the receptionist was having a good day or had taken her happy pills or taken a huge hit of meth or whatever--she was so pleasant, and was willing and able to put up with my mild hysteria.

By the time I finished talking with the pediatrician's office I arrive at my friend's house: there's peanut, sitting on the couch with my friend's sweet husband, ice pack on her little head. She doesn't look any worse for the wear, but the truth is: My little monkey had been jumping on the bed (no, really) and she fell off and hit her head (we think it was on the foot board of the bed), mama (me) had already called the doctor and the doctor said: "tell me just exactly what she did to her head!". Poor little peanut had managed to get quite a gash on the back of the crown of her head, about one inch in length and I'm guessing 1/2 a centimeter (???) in depth--deep at any rate. It had mostly stopped bleeding by the time I got there, and amazingly enough she wasn't in any pain and wasn't complaining.

Whew!

My poor dear friend, on the other hand, was a wreck. She was so upset, and worried over Peanut getting hurt, and worried about how I'd react (normal reaction, I'd be the same way). I felt so bad for her because she was so upset she was in tears, and even though I wasn't (and still am not) mad at her, nor do I find she did anything wrong, I couldn't reassure her that I understood, and that it was just a freak kid accident--it could have just as easily happened at my home as at hers, or with any other kid. I do hope that she feels better tomorrow.

At any rate, I decided yes, Peanut did need stitches, so off my friend, my Peanut, and I went to: The Emergency Room. (duh, duh, duh). There we sat. And sat. And we sat some more. We sat, with a bleeding four-year-old child in the waiting room for the upwards of almost 2 hours before they took us back.

I guess the old saying is true: you could, technically, bleed to death while waiting to be called back into the emergency room. Huh. Who knew?

After a short visit with the E.R. doctor and a nurse, they decided we needed to suture up her head, as my friend and I figured, and that they were going to use staples.

What?

We went to the E.R. for the purpose of letting my girl be sedated a bit for her stitches because we didn't think she'd be able to handle it 'the old fashioned way' (given that on the 7th of this month it took 3 adults to restrain her for a single blood draw--that is a story unto itself). Well, the sage doctor decided we'd try the staples first, and if that didn't' work, then we'd do sedation. At this point in time I was like "whatever will work. Let's just get this over and done with." All the while, Peanut has been an excellent patient--no whining, crying, or acting up (that was her mother who was doing that!!).

So, there we were, in the E.R., Peanut on my lap, my legs wrapped about her waist, holding her in a 'bear hug' while the gentleman nurse (a fantastic human being, I might add) held her head steady and the doctor stapled her scalp shut.

Ca-chunk, ca-chunk, ca-chunk, ca-chunk, and one final ca-chunk.

And it was done. Nearly 3 1/2 hours after we arrived, and $100 lighter in the wallet later, the girl was sutured up and we were on our way.

And to think, we could have had the same results, at the Pediatrician's office, and been in and out in less than 30 minutes. GARG!

Then, back home again. Peanut was feeling frisky and fine (the child was doing somersaults on the couch (getting blood everywhere-eew!) and had to be told to calm down and relax, so her sutures wouldn't be disturbed), and mommy's blood pressure was through the roof. Not the way I'd wanted to spend the afternoon.

At least my little girl was 'good as new' and feeling fine. That was the most important thing.

After both children were fed, and the boy put to bed, I headed out to run the last of the birthday errands I had left. Originally, I'd planned to do all of the errands and 'to-dos' this afternoon, but the trip to the E.R. disrupted that train of thinking, so it had to wait until after dinner.

I wound up taking care of all of my errands, with a little insult added at the gas pumps ($20 for 5.45gal. of gasoline! ***#$@@@$*$*$* insert expletive), only to walk back into the house, ready to frost the cupcakes for Peanut's party tomorrow, to discover my darling husband had only bought one can of chocolate frosting--to decorate 54 cupcakes in 'rainbow' colors. So much for being prepared the day before the party.

Needless to say, my evening ended on a truly aggravating note. But, the silver lining to this cloud is that the Peanut is OK, she's feeling good, she's going to be five, and has five staples in her head, someday this is going to make a great story to retell; and, hopefully my little monkey has learned her lesson: 'no more monkey jumping on the bed!'

Thursday, April 24, 2008

Patsy Cline said it best: "Crazy"

Here I am, 2:31pm, home and already had my second cup 'o java for the afternoon (I had 2 this morning before leaving for work, and I cheated and had a small (6oz.) cup of BLACK coffee at work...). Apparently I'm working my addiction up to a full pot of coffee a day. And, to think, I'd been doing so well at only having one measly little cup (black!) in the morning before going to work. I've tried to quit coffee, go it the 'tea' way...but let's call a spade a spade: living among roosters as I do, working, having the PEANUT (note: the caps is on purpose)...facing the day without waking up to the smell of syrupy thick espresso strength coffee, to be guzzled by the 12 oz. mug, is like asking me if I'd like a visit from Jack Kevorkian (life without coffee? yes, pencil him in at 3...). So much for the reduction of caffeine. On to bigger things:

I love my Peanut. Peanutzilla; the Chubber calls her "peanut-butter", B.J. often calls her a pain in the _________ (fill in the blank: neck, butt, etc...). I do. I love her so much, I often go into the 'red' caring for her and all of her various needs. I do without, so does B.J. and the Chubb, though the latter doesn't yet realize it. Ask me how long it has been since I had a whole-hog, pull-out-the-stops-vacation. I'll tell you: I don't rightly remember. Far. Too. Long. Ago. After all, I'm the girl who buys (bought) airline tickets to Europe or Hawaii on a spur-of-the-moment 'this price is too good not to buy it' whim. Sigh. Those days are looonnng gone. I'd like to be able to go to the salon every 6 weeks and get my highlights done without my mental abacus going into guilt and worry about bills overdrive, and so I don't look like the bus driver from South Park; I'd like to be able to go shopping once in a while without feeling like I'm going over the precipice and landing us into debt. I'd like to stay in the black, but it just seems like it isn't gonna happen.

Already, this month alone, we're up to about $200 in medical co-pays for Peanut, and it isn't even the end of the month yet. Not to mention, the $2,000 invoice from OHSU that we received the other day that we may be 100% responsible for (maybe the insurance will pay it, maybe it won't. I think that BCBS uses a 'magic 8-ball' to decide on what it pays out on.).

Back to the Peanut, and, more specifically our current situation: Her psychiatrist has recommended we take her to a psychologist (main difference: the former is an M.D., the latter is a Ph.D.) for 'neuropsychological evaluation....[to] rule out other neuropsych dysfunction; to include IQ/LD'. Blah, bluh, bla? Yes. I know, it is partly Greek to me, as well. Basically, we want to find out a baseline for Peanut's cognitive performance. The psychiatrist doesn't do that kind of testing, the psychologist does. So, off I go with referral in hand.

Cha-ching.

The referral we've got in our hot little hands is for an out of network provider. Translation: mucho dinero. I, of course, don't have to have this testing done, but being the compulsive problem-solving mama that I am, I am going to. Because, after all, if this sheds more light on Peanut and how to deal with her 'quirks' I'm all for it. But! It all comes at a price.

The evaluation Peanut needs will run the gamut of $1,200-$2,000, quote that the psychologist gave me over the phone.

Choke-to-death. [insert gagging and vomiting noises here]

The insurance will pay up to 70% of what they deem 'usual and customary fees' (after I've paid my $300 deductible). In normal human being speech that means they will decide what a doctor should charge, and based on what the insurance deems to be the 'appropriate' charge, they will pay up to 70%. So, if they say this type of testing should cost, for simplicity, $10, then 70% of 'usual and customary' would mean they pay $7, leaving me to pay 30% of the balance, or $3. Sounds relatively simple, but when you're dealing with multiple zeroes after the numbers it gets a bit more...hmm...how shall I say it...distressing. Furthermore, if Peanut's psychologist doesn't charge $10 for the testing, but charges $17 for the testing, the insurance still only ponies-up $7, and I'm left with the balance of $10. So, basically I'm a bit on the screwed side.

What is a parent to do? What I always do: try to do the best I can by my peanut. I continue to mumble and grumble over medical costs--but I'm lucky: I at least have insurance. Some folks aren't so lucky, and once upon a time in the recent past I was one of those folks who didn't have insurance...and by God, did I pray I didn't get sick.

I continue to be more and more political; I follow the insurance legislation for my state. I send letters to my representatives and legislators. I've been scheduled to testify in front of the legislature before (though the meeting was cancelled). All in the name of providing my daughter with the necessary medical care she needs to live the fullest and most productive life she can live. So that my husband and I can have some semblance of normalcy in our family: we know and remember all to well what life was like before Peanut had the appropriate therapies and help; life with an untreated child like my girl is sheer hell.

So, the song that plays in my mind's Mp3 player, today, would have to be Patsy Cline's "Crazy," because I'm crazy in love with my girl.

Tuesday, April 22, 2008

Guilt

I haven't posted in a long time. This, I realize. While things have been humming along in my life, as always, I haven't felt particularly inspired to 'put pen to paper'.

Ironically, I started up this site as a means of purging my thoughts and maybe lessening the mommy-guilt load that all of us with offspring and who are of the X chromosomal variety experience, and in doing so, (tee hee) and not posting I have felt this cumbersome guilt hanging around my neck: I am not posting, hence my reader (singular) will become bored of my site, and fly far, far away. (I do have that bit of vanity, sorry to say)

A quick recap: Spring vacation--good, fast, over and done with; April: seductively waltzed into our lives like an innocent little lamb, only to sink its deadly lion-like fangs into our jugular and let us know that this spring will be a bumpy ride.

My Princess Peanut will soon be five years old. I'm majorly freaking out over this life milestone. She's in a preschool cum elementary school ecstasy "I'm going to be FIVE!" When did this happen? When did that yellow, squalling, doesn't want to eat and you can't make me, 5 lb. 12 oz. bundle of pain turn into a school age child?!? I'm utterly blown away.

We're planning her party for this Saturday at NWKC, so, I guess that means the games have begun. I know some people will think it a bit bourgeoisie for us to pay that much for her party, but let me tell you, the price is chump-change for the sanity! Last year we had her party at the carousel, and it was beautiful: the kids (the few who could make it) showed up, they rode the horses in circles enough times I wanted to puke, they ate cake, peanut ripped into the gifts, the mess stayed there, we went home to peace and quiet, voila! perfect.

For something new, and to (hopefully) take some of the focus off of the gluttony of gifts, we've decided to have a book exchange in lieu of gifts. I've requested each child who comes bring a gender-neutral, wrapped story book (not labeled to Peanut) and when we get to the 'open gifts' part each child will get a book to open--that way everybody gets to open a gift, and I get to get out of goody-bag duty! (I know its sneaky, its cheap, I love it!) I hope that this exchange works out well. Truthfully, Peanut doesn't need a single new toy, but I can't see her not getting to open something at her party, and I'm not so altruistic (yet! working on it...) that I can tell my daughter's guests to simply make a donation to a favored charity...so, maybe this plan works? I'll let you know. If you have any feelings, good or bad, please post a comment--I'd love to get some thoughts on the idea.

Well, it sounds as if my sweet little terrorists are waking/no longer content to play in their rooms, so I must sign-off. Having major daycare crisis right now--my poor dear babysitter has injured her back in some excruciating manner, and as of now: I have no back-up care, hence I am home from work today (B.J. was home yesterday) so among the many things I must do today, finding a backup daycare provider is pretty high up on the list. Sigh. It never ends.