A Sad Goodbye (Therapy Update)

Our OT Misty was returning voice-mails late last night, and broke the very sad news that TODAY was Kittyboy's last day with Janna SL! We were quite sad, and so we made sure to get a picture of Kittyboy with The One Who Got Him Talking.

She's trying to get him to BLOW on the pinwheel - he's trying to show her, "Look, there's an easier way, you just spin it like this!"
Last August, Kittyboy was evaluated to have an 85% delay in communication - he had maybe half a dozen signs (for the basics, eat, drink, more, please, thank you, night-night) and babbled on the level of a four-month old. He was 18 months, chronological age. He rarely signed without prompting - he would bring a book and bang the corner into your leg saying, "MM! MM!" rather than hand it to you and sign please. We had eliminated basic hunger and thirst as a cause for tantrums, but he still collapsed in tears on a regular basis for no discernable reason, because he couldn't SAY, "Mommy, I can't find my teddy bear" "Mommy, I want to go outside" "Mommy, I want peas instead of corn for lunch". Boy, oh boy, did he qualify for Speech therapy.
Some time last September or October, maybe the second or third time she saw him, Janna SL said, "I think he's trying to say it with his mouth closed. Has he ever been diagnosed with oral aphasia?" And thus began a voyage of discovery - he was indeed trying to copy speech, but wasn't opening his mouth. Either didn't realize he had to, or thought it WAS open (when he was learning to drink through a straw, we had many problems with milk spilling out because he would forget to close his lips). What a difference it made, when instead of sighing, "Please, don't WHINE!" we started asking him what he was trying to SAY. The whining tone slowly disappeared as he realized he was finally being listened to - and we slowly learned to distinguish between mm, ng, gng, gm, and all the other noises he made with his mouth closed. We still had no clue what he was trying to say, but we could tell that one was different from another, and that was a start. It took off from there.
So this is the lady who got him talking. When Kittyboy runs up to me and says "Mommy, [sign for help]!" I thank God for Janna. Now that he knows how communication works (and that he is fully capable of it) he dives into it headlong - he hybridizes signs to approximate a word for which he doesn't have a sign, he makes up signs sometimes, he parrots words all day long, and he'll attempt words that are difficult by just taking the first syllable and repeating it. Je-je for Jesus. And usually (usually), he does it without us having to push him back, unwrap his fingers from our clothing, and say, "Stop whining and TELL US!" I had described it to Janna as his baby chimp act - pulling on us, trying to climb us, and whining unintelligibly. He has baby chimp moments, but it's not ALL DAY LONG.
Misty will be finding us another SLT, or possibly our EI coordinator will. I'm sure it will be someone good, either way, we've had wonderful therapists all around - but I need to print and frame that picture, of Kittyboy and The One Who Got Him Talking (and saved our sanity!).
We will miss Janna very much. May God bless her work and all the lives she touches. She touched ours in a BIG way.

An answer to a prayer I hadn't prayed

This is an example of how, when God gives, He gives in abundance. Sometimes, you get exactly what you asked for, nothing more, nothing less. I asked God once to give me at least enough voice to finish out a Liturgy when my throat was really bad, and got EXACTLY that - after the last hymn, I couldn't TALK. Well, I did say just enough to finish the Liturgy... I didn't say anything about conversation during coffee hour. And sometimes, He does say no. I wanted contacts at my last eye exam - turns out I'm a horrible candidate for them, so that was a "no". To quote the Stones, "You can't always get what you want."
And sometimes, you don't get JUST what you want, you get what you didn't dare ask for. Case in point - dining room chairs. I planned poorly, and gave away all of ours before shopping for more. Friends said they were apartment-hunting, I said, "Great, when you find one, you can have our old dining set (the chairs we were using, the table was being used outside)." And I planned on replacing our chairs with ones from Salvation Army, a couple at a time. The eclectic look, you know. This was in July, however, and because in the first place I had nowhere to store the chairs we'd be giving away, and in the second place I'm just not that "together", I had done no chair-shopping when our chairs all departed for the friends' apartment last month. I went to Salvation Army, and lo and behold, there were NO chairs that were not in a set with a table. NO single, lonely, mismatched chairs whatsoever. I went back again, and again, and there just weren't any, period. My budget didn't cover new chairs, unless they were folding chairs from Walmart. After a couple weeks of nothing to sit on and all meals on the couch, I talked myself into accepting that folding chairs would be okay (they perform the basic function required, after all), and furthermore they would even be a GOOD idea, because our house is so small, and we could fold them up when not in use. But it kind of stunk, because those still aren't CHEAP, and of course money's tight. So as a last resort, I posted the following Wanted on Freecycle:
"Do you have one or two kitchen/dining room chairs that no longer match your other furniture? Maybe they need a leg replaced or something? ...We have a table. We have no chairs. I'm not picky in the slightest, if it clashes too severely with our dining room, that's what paint is for, and I can do simple repairs too. I'm willing to drive out of Springfield for something to sit on!"
I didn't expect much - chairs that went in a basement or attic because they needed some sort of basic repair, then the person got rid of the set and forgot about the one in storage, etc... I expected to put in elbow grease at the least to clean them up, IF anyone had chairs to get rid of at all, and was bracing for some basic carpentry and painting to get them into shape. I didn't even think to ask GOD for chairs, I mean, that's such a basic silly little thing. You don't ask God for chairs.
Well, He got involved anyhow. Carpentry? Painting? Wood glue? It was Friday the 2nd that I put up a Wanted for any chairs, any condition, anywhere, and I now have THREE chairs, and they are beyond what I had ever thought to hope for. The first I got is a lovely red-blond shade, wooden, in great condition with a curvy design carved out of the back. Gorgeous. The two I picked up this morning are, get this, THE SAME WOOD. It's the same red-blond, this time with a geometric design on the back. And pads. On the seat AND back. And arms!!!
Kittyboy's booster seat is on the one with the curvy back, and we have the ones with arms. And more and more, every time I walk into the dining room today, I think about how God really DOES give in abundance sometimes. I mean, that's really it. All I needed was something to sit on. Stacked milk-crates would have fit the bill. And I didn't even ask God for milk-crates. And now I don't just have chairs. I have BEAUTIFUL chairs, no work required. They even look nice together, and with our table. I have more than I dreamed of!
And boy, am I thankful!

Remembering a "Brush with Death"

Last year on this date, I couldn't stop crying. This year, it took me until 7:53 P.M. to remember what day it was - the second anniversary of the day I was admitted to the hospital. I take that as a good sign.
The story of my son's exciting and traumatic birth began Dec. 18th, 2006. I was six months pregnant, and the ONLY things wrong with my pregnancy were that I had only gained twelve pounds, and that the baby was not as big as my ob-gyn, Dr. Rundle, would have liked him to be at that point. It was Monday, a week before Christmas, and I wasn't feeling good. Nothing urgent, just flu. I called Dr. Rundle's office, described my symptoms, her nurse asked me a series of questions (odd things, such as "Any headache? Changes in vision?"), and said it sure did sound like flu. Lay down, drink fluids. I called in to my afternoon shift and did just that. Tuesday, boy was that flu beating me up. I was sick as a dog. The nurse called again to see how I was, and ran through the same strange list of questions. No, really, it was just VERY bad flu. Wednesday came and passed, and I couldn't lay in any one position comfortably. Again, the nurse asking about headaches and blurred vision. What was UP with that, I wondered. Thursday morning, I was bound and determined, I WAS going to work. I had missed three days, I was in charge of the accounting and bills at the school program for which I worked, and Thursday was Bill Day. I was going to get those bills out one way or another. I spent the whole morning holed up in the teachers' lounge writing receipts and logging payments from the rest of the week, but looked so bad that my supervisor said not to come back that afternoon. I was perfectly happy not to - but, I had missed so much work that I figured I had better get a doctor's note. That I had already missed three days of work was the ONLY reason I dropped Husband off at his job and went straight to Prompt Care that afternoon. It was the last place I wanted to be, because all I wanted to do was go home, curl up and die.
Luck of the draw at the walk-in clinic, I got Dr. Gerber (for all eternity to be known as Prince-Among-Princes-At-Springfield-Clinic). He took my blood pressure, felt my stomach, and said that it was most likely flu ("well of course," I thought, "just write me a note!"), but based on the quadrant in which the pain originated, he wanted to do a blood test and make sure it wasn't a gallbladder problem to which pregnant women are susceptible. Yeah, sure, okay. I had blood drawn and went out to the waiting room while they tested it.
When the nurse came and got me, she re-took my blood pressure, and looked at the result as if the machine were broken. Then another nurse popped in and asked, "Which hospital do you prefer?" I said I guessed St. John's, and she left again. Lots of talking in the hallway. Something about which ob-gyn was on call right then. Then Dr. Gerber came in. "Your gallbladder is in distress, your liver is in distress, your platelets are down in the 30s, you have a collection of symptoms for something we call HELLP Syndrome, did you drive yourself here? You are driving straight to St. John's, you will be admitted immediately. Don't go home, don't go anywhere else, you need to be in a hospital NOW." It wasn't my gallbladder.
I left voicemails for my bosses and Husband on my way to the car ("Dear, I can't explain because I don't understand, but you need a ride to St. John's when you get off, because that's where the car and I will both be"). Being admitted is a haze of sorts in my memory. Various IV drips, a belt to monitor the baby around my waist, more blood being drawn, lots of vomiting before I started feeling better, and neither Husband nor I actually understood anything. We weren't exactly into asking questions, and all the medical personnel surrounding me were dashing about. Nice little "Now here's what we're going to do" explanations were not the priority. Getting me hooked up and stuck to everything conceivable WAS. My room had the atmosphere of an ER. One nurse did tell Husband in the hallway outside my room that I was "a very sick little lady", but she didn't elaborate and he didn't ask. It was the 21st of December, two years ago today.
The next morning (the 22nd), "bright and squirrelly" as my dad would say, Dr. Rundle was at my bedside in her jogging suit, looking as if she still needed coffee, trying to figure out what had gone wrong. Her nurse had been calling me all week with those weird questions precisely for this reason - HELLP presents with stomach pain, vomiting, etc, like flu, but is supposed to include ridiculously high blood pressure, high enough to cause headaches and distorted vision. I never DID have the high blood pressure, and so the big, obvious, trademark symptoms weren't there to tip anyone off. She kept saying, over and over, how VERY glad she was that I'd gone in, or no one would have guessed it was anything but the flu. You don't send a woman six months pregnant out into the snow and ice when she has flu-like symptoms on the chance that she has a really rare blood disorder instead, you tell her to stay home and drink fluids, which would eventually have been really bad, considering that later that morning I went into labor. A quick-thinking nurse rolled me onto my side, which stopped it. Later that day, Dr. Rundle and all the other ob-gyns from her office came in to ask me how determined I really was to STAY pregnant, because the baby COULD be born then if we wanted. I said I wanted to stay pregnant as long as I could. They didn't look entirely comfortable with that, but left.
Sunday the 24th the neonatal specialist took his sonagram machine on a walk to come see me. I'd been wheeled up to his office the day before, at that time the baby was a little stressed but okay, and I guess he was just curious to see what was going on 24 hours later. Rather than have me sent up, he brought the machine down to my room, which was funny. Baby was "fighting - not struggling, but fighting." The nurse who came on duty that night was the same one who had been there when I was admitted, and she commented that she was surprised to see me. I assumed, incorrectly, that she had expected the baby to already be born...
That night about 10:30, my liver started yelling again. Nurses coming and going, more blood being drawn, lots of calls to the lab, because they couldn't give me painkillers without bloodwork. I will put HELLP syndrome liver pain up against natural childbirth any day of the week. I was going out of my mind. It was about 1 a.m. that they finally got the okay for Demerol, which apparently doesn't only numb the pain, it also makes you really not care about it. I was on Demerol until 10:30 Christmas morning, when I went under general anesthetic for a c-section. Everyone who sees my son's birthdate says, "Oh, it's the Christmas you'll never forget!" WRONG. It's the Christmas I'll never remember. I wasn't coherant until after 5 that evening.
The rest of the week I was busy trying to pump milk three months earlier than my body had planned to. I was discharged that Friday, and the nurse checking me out asked "So how does it feel to have a brush with death?" and I laughed, thinking she was exaggerating. I mean, yeah, I was sick when I came in, but I was fine after they started all the IVs and everything, it all turned out okay, right? She said, "Oh no, that's not a joke. You don't know how sick you were." Husband said soberly that he had printed out some online articles for me to read when I got home. He had looked up HELLP in Wikipedia just the night before, and was glad he hadn't beforehand (say, the night right after I'd been admitted).
The nurse who had told him I was "a very sick little lady" was trying to let him know there was a good chance I wouldn't recover. She was surprised to see me still there on Sunday, because she had expected I'd be in ICU or dead. My being admitted had been so frantic and rushed because it WAS such an emergency situation. I read the Wikipedia article, noting in my mind that my platelet level had been of Level One, i.e. very severe. And I took it all quite calmly until the next December 21st, when it hit me like a ton of bricks.
A year ago, I couldn't stop crying. This year, I forgot the date until the day was almost over. That makes me pretty happy.

Something for which to be Thankful

In the United States, this Thursday is Thanksgiving Day. Along with eating lots of turkey (designated "Fish for a Day" if you're following the Advent Fast), mashed potatoes, cranberry sauce, lots of food in general, and watching a football game, we're supposed to be thankful for our blessings. For the Pilgrims who first had a harvest feast of thanksgiving, this meant being very, very grateful to God that they were even still alive. For most people nowadays, I think the list of "Things for which to be thankful" tend more towards having family, having friends, and our physical possessions. Health doesn't always make the list, unless you or someone you know has recently recovered from a disease, or dealt with a disability.
I don't know anyone who says, "I am so thankful that I can swallow! I don't have to think about it or anything, I just take a drink and my throat does the rest! Wow!" And so I wanted to share that we have another thing for which to be thankful this Thursday! We had what should be Kittyboy's LAST EVER video swallow study today, and he is totally approved for thin liquids now! He can drink anything he wants without any thickener added whatsoever. He wouldn't cooperate with trying out an open cup, because he was getting hungry and impatient, but Joan, the speech therapist doing the testing, said that's the next step. When he's in a cooperative mood, we can offer him a little medicine cup or little paper cup with something he likes drinking, and let him figure it out on his own.
And we're also thankful that Joan was the SLT on duty at St. John's today, so that she could officially see him off! She was the one who got him started on bottles in the NICU when he was something like three pounds or so. She taught us how to mix and thicken his formula, how to prop him on his side, pace his breathing, watch his color, pound his back when he'd quit breathing, which invariably happened at least once a feeding, and all the complicated things that went into just giving our son a bottle back then. So it was really special that today she got to see him as a big, strong, capable toddler, drinking normal milk through a straw, without needing any accomodations whatsoever.
Add "the ability to swallow safely" to your list of things for which to be thankful. You probably never think about how your tongue, jaw, throat muscles, and epiglottis work together to keep liquid out of your airway and sinuses. You can drink from any bottle, can or jar, without having to put it in a special cup, without having to add anything to make it safer. Next time you're in a store and feel thirsty, be thankful that you can drink from a water fountain as if it's nothing. No one thinks of it, because it's so basic, but every purse I own has at least one packet of thickener in it somewhere, and we always had cups with us, because if we were out somewhere and he was thirsty, we HAD to have something in which to mix, and a straw for him to drink. Water fountains weren't an option. There WERE no options, without thickener and a straw.
At my parents' house, there is a huge container of over-the-counter thickener because on our first Thanksgiving weekend after Kittyboy came home, the unthinkable happened, and we ran out of packets. No thickener, no bottle for the baby.
THAT Thanksgiving, we were thankful for an open Walmart pharmacy that had thickener in stock, because the other option was driving two and a half hours home with him crying to be fed. THIS Thanksgiving, we are thankful that THOSE days are over.
God is good!

A big-boy bed!

As I write, Kittyboy is sleeping peacefully in a real bed. We didn't find any used toddler beds in thrift shops, they're highly sought-after items on Freecycle, so for about the price of a cheap new one, we got a day-bed at Salvation Army. It's close enough to twin-size that we can use twin sheets on it, and he can sleep on it well into gradeschool.
He picked it out himself, completely ignoring the ugly brown upholstery to scramble up and bounce while patting the mattress. We took him off and put him next to a different twin bed, and he ran back to the daybed and sat on it with a huge toothy grin. He had chosen!
It still knocks my socks off that he falls asleep semi-autonomously. So imagine how flabbergasted I am that we can tuck the sheet around him, put his weighted blanket over him and Rocky on the pillow next to him, and with occasional fussing, he GOES TO SLEEP, in a bed that isn't even keeping him there. It just blows my mind. A year ago I was dreading the day he'd outgrow his baby swing, because he never, ever slept without motion. He slept in the swing or the carseat with someone's food rocking it, nowhere else. Never. And that wasn't for lack of trying, it was just the only thing that worked. Even a rocking chair wouldn't put him to sleep (and what mommy can't rock her baby to sleep?).
And now he's in a real bed. I tuck him in under real sheets and everything. I'm so happy I'm crying.
God is so good!

A Random Act of Kindness

This morning was not a good one. Kittyboy was very distressed by SOMETHING (I think teething but can't say for sure). He was crying easily, upset at every small transition, he was VERY "off". It culminated in him grabbing two fistfuls of hair and, with grunting and effort, pulling the hair out of his head. I could see the strands between his fingers from across the room, it was that much. And he didn't seem to notice any pain from that whatsoever. Thank God, no scalp was damaged, but it was quite disturbing.

So we needed a change of scenery. I didn't know what to do for him about the hair-pulling, but he's always calmed down outside, and though it was drizzling, I strapped him in his carrier and we went out for a walk. I didn't know where to look for our umbrella, I've not used it in years, I just knew we needed to get out. We'd take the bus to Walmart or something. So we walked, and walked, while it turned from a drizzle to steady rain.

Then a car came towards us and stopped, on the opposite side of the road, just before we got to the bus stop. I thought, "Oh great, someone to tell me my child needs a coat, that my child shouldn't be out in the rain, just great. I don't need this right now." So I was bracing for impact, as a lady jumped out of the car and ran across the road with an umbrella. She just gave me the umbrella!!! I asked if I could return it, and she said no, she had several at home, and she'd just seen us out and wanted us to have an umbrella. I thanked her - had I not been in total shock, I would have tried to get her name or something. And when she got back in her car, she turned around and drove the opposite direction. So it wasn't even that she was driving along and had an umbrella in the car - she had driven home to GET one!

What a wonderful angel!

And as we stood at the bus stop, the skies DID open up, and it was pouring, solid water. We would have been absolutely soaked to the bone without the umbrella.

I'm going to buy an umbrella that folds up tiny, to keep in my backpack (the walking and bus-riding diaper bag), and keep this one in the car. Hopefully we see someone sometime walking in the rain without an umbrella.