Chronicity

Ugh, when did this become so hard?  It’s not like me to have writer’s block or any kind of verbal “block” for that matter — and believe me I am sure that there are many people who wish that weren’t the case.  The whole point of this blog was to be totally honest and uncensored.  It’s not that I don’t have anything to say as much as I really don’t want to write the same blog post over and over again.

My life feels less like a roller coaster than a ferris wheel.  I guess I should be grateful for that — life is not a series of herky-jerky ups, downs, twists, and turns anymore.  But I really hate the ferris wheel.  Just being trapped in that little cage in a seemingly endless cycle of up and down…how many times have we gone around now?

It feels like every single aspect of life has become a question of “is the glass half-full, or half-empty?”  I’m tired of having to make that decision over and over and over again.  For once I’d just like the glass to be unambiguously full…or empty, I really don’t care — I just don’t want to always have to make some kind of conscious decision over with what attitude I am going to approach minutiae like the breakfast menu.

Writer’s Block

I don’t know what to say.  I feel bad that I have been neglecting the blog and worse that the only time I’ve written lately has been when something upsetting has happened.  It’s not that life has become a sequence of upsetting incidents, it’s just “life” you know…boring, monotonous, routine.

But that’s not to say that there’s nothing to say.  Hope is 18 months old now, Grace is nearly 3 1/2.  Hope is pulling to a stand, thinking seriously about cruising, and added the word ‘no’ to her repertoire. She’s gaining weight, finally has the sippy cup mastered, but may be lactose intolerant or allergic to dairy or who knows what.  Grace is playing soccer, though “playing” is a very generous term for what she does.

I’m just stumped what to write about.  I blame Twitter.  I can only think in 140 characters anymore.

Hard

So…yesterday was a tough one.  No major crisis or calamity, just hard.

We went to a family gathering–a big one–lots of cousins and kids.  We had a great time, but something happened during the day that was a kind of milestone — a milestone for me, that is.

There are four little ones Hope’s age, of which she is the oldest (I think), at 17 months — but all of the kids are within four months of each other (and mostly less).  On the way up to the party Tammy asked me how I felt about seeing Hope around other kids her age.  I knew what she was thinking, I knew that we were going to see the other children doing things Hope isn’t doing.  I answered honestly, “I don’t know, ask me in a couple of hours.”  The truth is that I really didn’t know, we don’t have any close friends or nearby relatives with children Hope’s age and the children her age that I am used to seeing her around also have developmental delays.  I knew that this would be a “first” of sorts and I expected to have some reaction, but whether it would be jealousy, or anger, or sadness I really didn’t know.

I still don’t really know how to describe it.  When the youngest of the four was set down next to Hope — the two girls looked at each other like babies do for a few seconds and then all of the sudden, the little one popped up and trotted off.

….trotted.

Ouch.

A Dog’s Year

So this past weekend we were all in Venice for Yuma’s 10th Birthday Party (Yuma is my brother-in-law’s dog).  The big party has become an annual getaway for us.  As we turned onto Washington Blvd. last Thursday it dawned on me that one year ago I made that same turn by myself, with only a four-month-old Hope in the car with me.  My blog was young, but I made several posts from the party that weekend.

What a long time ago that seems.  I had to convince myself that it was only one year since I had been there — it seems so much longer ago.  I was still doing the breastpump/fortifying-breastmilk/taking 30-minutes to get 4 oz. down routine.  Hope had not yet started the HGH and was just barely starting to smile and laugh.  I discovered that trip that she when I sang “That’s Amore” she’d giggle — and I worried that she liked a song about pizza.  Now I’m feeding her pudding pie for dinner and using fruits sparingly.

Ugh.

The Art of Compromise

We’re back on the bottle. 

The baby bottle that is.

And by “we,” I mean Hope.

Why the bottle?  First, she’s willing to take the bottle again — where for awhile she wasn’t; and second, she sucks more efficiently from the bottle than from anything else.  Tammy mentioned that at Hope’s last early intervention appointment, she was playing with a baby doll — cradling it her arms and rocking it-when er teacher gave her a bottle to pretend feed the baby, she only wanted to pretend feed herself.

Now, every baby book published since 1990 will tell you that once the baby is ready for a sippy, you’re supposed to ditch the bottle.  And definitely never, ever, ever, put your baby in his/her crib with the bottle or they’ll turn into a serial killer (or something like that).  

I admit to being a bottle snob.  I had it easy with Grace.  She nursed from the boob, never touched a bottle — we didn’t even have one in the house…never needed it.  Once she weaned herself at 10 months, she was on a sippy with a straw, then a sippy.  Hope was different as you know.  There was no breastfeeding, just a lot of pumping, hundreds of dollars invested in every shape and size of bottle and nipple until we found the combination she’d accept.  When Hope finally rejected the bottle, also around 10 months, I was relieved.  I thought that the sippy would follow, and even though her difficulty in mastering it was no great surprise, the fact that she never really adapted was.

I realize that she won’t be on the bottle forever, and that sooner or later she will master the sippy and even drink from a cup.  But for now the need to get calories and hydration into her outweighs all the admonitions on the evils of the bottle.

It probably comes as no surprise that we are pretty “by-the-book” parents.  We read Your Baby and Child, by Penelope Leach like an owner’s manual for all of Grace’s first 18-months….literally, like every day.  A lot of the advice on bottle protocol is relates to research tying prolonged/inappropriate bottle use to things like obesity and dental problems — two things inextricably linked to Prader Willi Syndrome.  So, obviously, the bottle has always been a necessary evil.

But for now the bottle is back.  Unfortunately, back during my spring cleaning blitz I shipped every last bottle we had to the second-hand store.  But at least Hope is less particular now, the Gerber 6 oz (BPA-free) clear plastic bottle with the super-fast flow nipple (which we STILL have to cut to make it easier to suck) will do just fine.

Compromise.  ugh.

 

Rocking her baby anteater, Arvy...just last night.

Welcome to Bizarro World

So, Hope had her checkup with the endocrinologist today.  She has not gained any weight since her last visit.  She grew an an inch, but no weight gain.  On top of that, at her last endo visit, she had only gained a pound or two from the visit prior.  Long story short, she’s not gaining weight.  She is 15 months old and 17lbs.

To be sure, she is more active, but still.  This is so frustrating.

I didn’t go to the appointment, Tammy took her.  After the doctor left, he sent in the nutritionist, who gave Tammy a packet on “Economical High Calorie Foods.”

Some of the tips are things we’ve already been doing, like putting peanut-butter in stuff.  But poor Hope is just so bored with her diet, and I don’t blame her.  We’ve tried so hard to get her enough calories and to do it with fairly healthy foods.  Unfortunately, Hope is kind of a picky eater, still only has two bottom teeth — making chewing hard, and STILL isn’t drinking very well out of the sippy cup.  If we could just get her to drink, I could make smoothies — Grace lived off of those after she weaned, to this day she prefers a liquid breakfast.

Anyway, I’m frustrated.

So I went to the store and walked aisle-by-aisle looking for the highest calories things I could find and then throwing them in the cart by the bunch.  I tried for variety of flavor and texture, finger foods, soft foods (for sensitive gums and no teeth).

I got pudding, lots of it — because we can make it with whole milk.  I got sauces galore–alfredo, ranch, gravy, chocolate, to put on top of rice and pasta.  Lots of cheese, cheese singles, Velveeta.  The packet recommended using Whipping Cream and Half-and-Half so I got those, and threw in a couple of cans of sweetened-condensed-milk for good measure.  Chef-Boyardee, Stove-Top Stuffing, Cream of Chicken Soup, Oyster Crackers, Chick’n'Biscuits, Tater Tots, Twinkies, Tampico, Mini Marshmallows etc…..

Now obviously we’re not going to make her a dinner of tater-tots alfredo al forno (at least not at first), but we’ve stocked up on a lot of options to diversify her menu a bit and hopefully get her to eat a bigger variety of foods and textures.

Bottom line, all the mashed bananas, oatmeal, and organic whole-milk yogurt in the world are not working; and more than just being frustrated, I’m getting a little scared.  So I’ve thrown in the towel I guess, I spent $150 on a crap load of junk food today.  I had to rearrange the whole pantry just to fit it in (and to hide it as best as I could, since the last thing I need is to have Grace pestering me for Twinkies — or seeing the Twinkies myself for that matter).

Of course, the worst of it is that I simply cannot get over the unreality of actually being in this position — of actually needing to buy this kind of food to feed my baby…for now.

Country Mommy, City Mama

Grace has been traveling…

first a camping trip with mommy & uncle Troy

many rounds of fetch with cousin Yuma

Remember me?

I know, I know — I’ve been a terrible blogger for the past six weeks.  I’m going to try to get back into a regular writing routine.  

So what have we been up to?  Well, my last post was May 19, just after the big Prader-Willi Symposium. I think I kind of  checked out after that, not because of anything bad — just needing a break.  I feel like I’ve been living and breathing Prader-Willi Syndrome for the last fifteen months and I was just burned out.  I needed a diversion.

Thankfully (or not), the California Supreme Court provided one when they upheld Proposition 8 a few days later.  It was not an unexpected result and I was surprisingly unaffected by the decision, helped in large part by another diversion.  I had been helping out in the planning of a statewide response to the Court’s decision, called Meet in the Middle 4 Equality, which was scheduled to take place the first Saturday after the court issued its decision.  We received notice that the decision would be forthcoming on May 22, so from then until May 30 I was pretty absorbed in preparations for that event.

Of course, right smack in the middle was Grace’s birthday, she turned 3 on the 27th, of course her party was planned for the 30th, so we had to move it to the 31st, and I had to bake all the cupcakes on the 28th.  Not surprisingly, after all that I was sick for three weeks.  I noticed a little tickle in my throat the night of her party, and the next day it was all over — fever, phlegm, the works.  We all had it, Grace and Hope were sick first – flu, then cold, then Tammy and I got a mild version of the flu and I the full blown cold.  So, long story short, we spent a whole month passing around two very  nasty viruses — and of course nobody had the same virus at the same time.

But the couple of weeks focusing on non-PWS activism was kind of fun for me, I’ve made some wonderful new friends in that process and it was just nice to be active in a different capacity.  And so since then I have kind of kept active in that arena and am now helping out in some very minor ways with promoting the National Equality March, scheduled for October of this year in Washington, DC.  I haven’t figured out how I’m going to get there exactly, since I hate to fly — and, being right in the middle of the school year is going to complicate childcare arrangements.  So I don’t know what is going to happen with that, but it is nice to at least be able to make a contribution, however small, to its success.

Tammy finished up the school year just two weeks ago.  The Saturday following her last day of school we headed to San Francisco for the weekend.  I accomplished one of my New Year’s Resolutions, I saw my first show — Wicked, at the Orpheum.  It was AMAZING.  It was only scheduled to run through June but now they’ve extended the run through September and I am DYING to go back.  Initially we had just discussed going up and back, but we decided to splurge a bit — we haven’t been away like that in more than three years.  So we took the train and stayed the night in the city, it was wonderful.

The girls are doing great — Grace is teaching herself to swim, sort of.  We’ve had her in lessons the last two summers; this year we splurged again and got a 15×3 above-ground-pool.  She learned to jump in at her grandparents “big pool” with a vest and then came home and within a few days has taught herself the basic dog-paddle and is now “diving” to the bottom to retrieve stuff.  She is a natural.   She’s talking up a storm, and is a sponge for words — as we were gently reminded when she yelled “dammit!” when she dropped her doodle-pro in the car.  But it has its redeeming qualities too — she scolded mommy for saying the word ’stupid’ just yesterday.

Hope is doing great.  Every meal still starts with a tablespoon of butter and at her last pediatrician’s appointment she had “flattened out” on the growth chart — which isn’t a good thing, but during that same period she has also been much more active.  She is actually crawling now, she started about two or three weeks ago, and she will follow you to whatever room you go too — slowly of course, but she gets there.  She is also trying to pull up in her crib (which is now in the bedroom she shares with Grace).  We “think” she is starting to talk, she said “hi” about a month ago and Tammy says she said “car” at EPU last week.  But, as with all progress with Hope, it’s sporadic.  But she is happy and healthy and just as sweet as she can possibly be.  The shift of focus to other activities has really given me a chance to just enjoy having the chance to have a baby for so long.  Occasionally I see other children much younger than Hope doing all sorts of things she’s not doing–talking, standing, moving all over the place.  It would be easy to fall into the trap of feeling sad, but then I think — they don’t get to hear those sweet, baby coos anymore; snuggle and carry their little one everywhere, etc….and I don’t feel so bad.

So, anyway — that’s the last month or so in a nutshell.  I’ll try to get back into the routine.

Relief

The last couple of days have been all about Prader-Willi around here and I’m glad to say that they are over.  Last night we had our very first Prader-Willi Symposium, organized by our local support group.  The pediatric geneticist that follows Hope, an expert in PWS,  was on hand to provide the lecture on all things Prader-Willi.  Two hours of Prader-Willi information, even if you’ve heard it before, is exhausting.  But even we learned a few things about central hypotonia and some other topics.  Of course in a forum like last night you have to focus on the challenges because that is what people expect and need to learn about, but there were a few bright spots as the doctor talked about the promise of new fields of research.  No cures unfortunately, but hope.

I’m a twit

Yes, if you haven’t already noticed the catchy new widget below my Facebook icon on the right — I have indeed succumbed to Twitter. Technically we’re called “tweeters.” For those who are not familiar, Twitter is a micro-blogging/social-networking site that uses both RSS and SMS text feeds to share information. Twitter posts are limited to 140 characters but can include links, pictures, etc….

Still running…

I took a survey today that asked me if I felt better prepared to deal with the issues that my special needs child would face in the future.

Um….no.

How in the world am I supposed to prepare for that anyway?  Isn’t the whole point to not worry about the future, not obsess over the things that may or may not happen, things I can’t really control anyway?  And isn’t that a little counterintuitive to preparation?

I guess I’m just a little frustrated today, or this week.  Like I said a few days ago, things are going much better for me — I’m better.  But I suppose nothing has really changed, has it?  I’m just not a total basket-case about everything.

Allow me to explain

So, how’d you like Grace’s Mother’s Day post?

Here’s the backstory.  Grace loves Harry and the Hendersons — and who (with a soul) doesn’t?  She likes to run through the west side of our backyard, along the perimeter of the fence, where it is “woody” and pretend that she’s running through the forest a la Harry.  

About a month ago, maybe longer, when she was really upset at us (or tired, sad, or just plain ‘two’) she started talking about missing her family.  Her real family, which apparently does not include us — any of us, grandparents, aunts and uncles included.  She started talking about her “parents” and her “home”, again — not us.

So more recently, when I correct her for doing something inappropriate — like climbing the pantry shelves to retrieve the Easter Candy I rightfully  stole from her, or like today when she fed the goldfish Miracle-Gro tree spikes — she informs me (yells at me) that I should go away, that she’s going to go home to the forest with her family.

A few weeks ago, in one of her calm moments I inquired about this other “family” — who were they exactly?  A few questions later we arrived at their true identity.  They are the Hendersons.

Here they are in action:

LOL — Show him the pasta maker!

Mellow Johnny

I don’t know who this photographer is, but these are amazing pictures of this little guy from one week ago.  He’s doing great, he and Cosmo are getting used to each other and starting to play a fair bit together.  The only problem at the moment is that he’s a bolter, if the front door opens — he’s gone.  He still doesn’t know his name, and certainly doesn’t know ’stay’ and ’sit’.  So we’re going to start doing some obedience stuff at home until we can get in a class.  He barks a bit, alarm barks mostly, and Hope doesn’t like them — they startle her and make her cry.  We have a pretty quiet neighborhood, so hopefully he’ll get used to the few noises we have and quit barking — or at least learn what “no” means.

Happy Mother’s Day

by Grace

Special Guest Blogger

I can do it by mysuf!  I write this blog by mysuf!  You go way mommy!

Happy Mudder’s Day.  I miss my family.  I wan go live wit my family in da forest.  You, mommy, and B-Ho not my family.  My real family live in da forest.  You leave me awone!  I miss George Henderson, I miss Harry.  Sasquatch is my family.  I wan go home.

Love,

Grace