I'm down with Down's

You've come a long way, not-so-much-of-a-baby-anymore!

2010-10-09T03:34:00.000-07:00

The Boy is 2 years old today. (I have to admit that the helmet pictures is actually a couple of months old. Sorry. All the newer photos end up on Turtar's computer.) I'm not sure that I'm up for any deep reflections on the journey with my son over the last 3 years (counting pregnancy), but I'm so proud of him. He is a vital part of our family. He is very deliberate about including others in his activities. He goes out of his way to wave to others and say 'hi'. He is a solid walker, and loves music and dancing. He is just starting to learn so many signs and words. He hates being carried anywhere and doesn't even like holding my hand. He'll sit down if I try to hold his hand while he's walking so that I can control our direction. He loves telephones. He know just what to do with them, too: hold them to your face and walk around while you laugh. He loves a good joke. He pays attention to what gets a laugh, and will start his own applause for non-comedic achievements. He loves books and hates getting dressed. Its a very exciting time! He also loves bread, but doesn't care for cake, so this year we'll be celebrating with some pumpkin bread and homemade smoothies. (I recently discovered this is one of the few acceptable ways for feeding him fruit. McDonald's is good for something!)

Less is better for us

2010-10-03T23:36:00.000-07:00

Every state or city provides different levels of support to it's children with special needs. I live in one that lays it on thick and then some, especially if your child has a diagnosis like Down syndrome. Mermaid has been receiving Physical therapy, Speech, Special Instruction, and Occupational Therapy each twice weekly for thirty minutes. I'll do the math for you = 32 x monthly (plus clean up, plus after-chat, plus delays, plus occasional no-shows without warning...). If we cancel a session for an outing, we have to make it up later increasing the amount of therapy on another day. Mermaid has four sessions in one day at these times. We're essentially tethered to the apartment.

Sure, her four siblings have had to sacrifice opportunities for field trips, classes, play dates, etc. We've all relinquished some flexibility for a good cause. Mermaid has progressed continuously. We love to welcome her wonderful therapists into our home. They counsel and encourage us. They have been willing to meet us at the homes of friends, at the playground, or at the park. They are constantly thinking of how to challenge Mermaid next. They are experts in their fields and really nice people, too. Seeking to balance all of this good stuff with the downside in a way that best fits our family's needs and allows Mermaid to experience the variety and wonder of the great wide world in person, we decided to cut back therapy by 75%. That's 8 visits monthly. We are an aberration in the system. Nobody downsizes when they are "entitled."

This quote from Ann Sullivan inspired me:

"Let him go and come freely, let him touch real things, and combine his impressions for himself, instead of sitting indoors at a little round table, while a sweet-voiced teacher suggests that he build a stone wall with his wooden blocks, or make a rainbow out of strips of coloured paper, or plant straw trees in bead flower-pots. Such teaching fills the mind with artificial associations that must be got rid of before the child can develop independent ideas out of actual experiences."

We've been on the "sleek" schedule since August and it has been fabulous! Mermaid continues to progress at a steady rate. Our language-rich climate at home coupled with increased "actual experiences," has allowed Mermaid to experience a language explosion. I believe hands-on experiences are the most significant for all of my children, but especially Mermaid. We've all enjoyed the freedom of getting out of town, out to visit family, out to the beach, out to playgroups, out... just out. New environments always motivate our curious Mermaid to develop skills or add new words. As a home schooling family, this works for us. Everyone has to calibrate their own definition of balance. Sometimes it's hard to get what you need. In our case, advocating for our child and our family means taking less of what is offered to have more of what we want.

False Success: Good or Bad?

2010-09-30T11:10:00.000-07:00

I recently heard the story of Ike Ditzenberger, who has Down syndrome and scored a touch down in a high school football game. The detailed story includes an account of how the opposing team was under instructions to let him score and to try and make it as exciting for him as possible. I have very mixed feelings about this. On the one hand, that was a whole lot of people pulling together because they cared about this boy. They wanted him to have this amazing experience, essentially to make a dream come true for him. On the other hand, it was kind of a lie. And I wonder if this sort of false success undermines the cause of Down syndrome awareness. Individuals with DS are capable of so much without others just pretending that they have achieved something. I'm really conflicted. What are your thoughts?

And while you're thinking about it, check out this video of another high school athlete with DS: Kody Conover shoots a 3 pointer while playing basketball in Vernal, Utah. It's true that the other team defends him light, and in some moments, not at all. But my husband points out that in the case of a 3 pointer, you don't want to risk fouling and giving the shooter a chance at 3 free throws; better to risk the 3 point shot. So maybe the other team goes easy on him for strategic reasons and possibly because he has DS, but he makes that shot all on his own, and that is just amazing.

You've come a long way, Baby!

2010-09-28T22:14:00.000-07:00

Mermaid continues to progress at a steady pace. She gives us all something to smile about.

Mermaid's words or word-like syllables:

mom*dad*baby*hi*bye*up*down*out*water*no

yeah*eat*help*dance*toes*shoes*teeth*nose

hair*cheese (for taking pictures)*Jesus*me*banana

ball*go*meow*woof-woof*night-night*okay*thank you

please*wash*pee-pee*belly-button*waa, waa, waa (baby crying)

push*uh-oh*two*what?*yes*ow*grandpa*me*star

Mermaid's signs include:

water*milk*more*go*me*star*boat*shoes*bird

Mermaid's skills include:

climbing up bunk bed ladders, walking upright ascending/descending stairs while holding to the railing, digging, turning lights on and off, climbing onto the dinner table, dancing, singing, moving chairs to climb up to whatever she's interested in, feeding herself with a spoon, thumbing through books, brushing hair, brushing teeth, hugging, comforting pats, twisting the tops of bottles and cups, stealing pacifiers, opening refrigerators, opening drawers and emptying all the contents onto the floor, greeting everyone with a smile, pat, five, handshake and/or kiss, simple puzzles, and other feats of strength and dexterity.

She is working on JuMpInG!!!

What Would You Do?

2010-07-31T16:02:00.000-07:00

At the bakery last night, my co-worker saw the very strange number of bagels requested. They were strange because they weren't multiples of 6 or 12, which is what we normally see: 18 sesame bagels, 24 everything bagels, you get the idea. He commented on the bizarre numbers, calling the people who put the order together 'retards'. I can't say whether or not I'm overly sensitive, but I did have an internal debate before telling him that the noun 'retard' bothers me because my son has Down syndrome. Maybe I shouldn't have used my son as an excuse for being offended; maybe I should have been able to say plainly, "That's really not okay with me." As it is, I still feel a little guilty for saying anything because I know he didn't mean offense and he probably doesn't feel like he can be relaxed around me. oh well.

In any case, it made me think of an episode of "What Would You Do?" from this past May (Season 4 Episode 3). This is a hidden camera show where they set up unfair or offensive situations and see who is willing to step in and help, or rescue someone. One of the situations is at a grocery store where a bagger with Down syndrome is being verbally abused by a variety of customers in the check-out line. The people being abusive and the bagger are all actors, but it is still a little hard to watch, for me anyway. It is also so inspiring to see yet another young adult with Down syndrome who is articulate and capable. Check it out. Let me know what you would do.

Red Lipstick Therapy

2010-03-22T19:22:00.000-07:00

Scrutinizing my reflection and contemplating my upcoming birthday I realized that I not only look my age, but I also look something like my maternal grandmother when she was my age. I decided to accentuate the similarities with bright red lipstick like Grandma (and all the hollywood starlets of her day) used to wear. The change was dramatic. I was mildly uncomfortable, but genuinely emboldened. Red lipstick, it turns out, makes me feel cheerful.

Mermaid noticed the difference right away and was mesmerized by the presence of lips on my face. She focused trying to imitate all the shapes they made as I spoke or sang to her. Could this be a break through in her speech development? Maybe. I'll be wearing red lipstick more often... for both of us. Thank you, Grandma!

(sorry to double post. I'm trying to decide if I want my life integrated or compartmentalized, so I may be double posting a little as I figure myself out.)

Wowza

2009-12-10T09:25:00.000-08:00

Both kids in Halloween pajamas.

Funny stuff first: While The Boy was sick a couple of weeks ago, he had less restraint in the potty-training department. As soon as I pulled off his diaper, and before I could sit him down, he peed straight onto my crotch. True story.

This kid is impressive. He is potty-training very well. In fact, just a few weeks ago, he signed 'potty'. At first I thought it was just a desperate attempt to get out of his highchair. But when I put him on the potty, he went! He knew he needed to go. He knew how to say it. Amazing. In fact, potty training is going so well that when he sat on his new Baby Bjorn potty the first day, he held his pee until I put him on the big potty. Twice.

Yesterday, he asked for 'water' using sign language. This is monumental both for communication development and nutrition. He generally despises drinking, but the past few days have seen a real upturn in that department. In fact, I let him hold his plastic Ikea cup with two hands and he drank all by himself! When I tried to get The Boy to show off for his Pops, of course he dumped the water all over himself and eventually threw the cup on the ground, but I know the skills are there.

His PT talks about how he progresses every time she sees him. It maybe only a tiny bit, but he has the motivation to learn things on his own. He is on the very cusp of crawling. He can army crawl a bit, but he also pulls himself into quadrapd and is starting to grasp the idea of mobility (and the ensuing freedom).

His OT talks about how his small motor skills have developed ahead of his large motor. Apparently that's a very positive sign of intelligence. He has a very long attention span, often playing with only one or two toys for the entire hour-long visit. He's got pretty good pincer skills, and we never even practiced that. He points with a single finger. He loves books. And it has to be the book that is being read. It's no good giving him one book to play with while you read a different one. No good.

His Speech Therapist talks about how he is always looking at things, working them out in his mind. He's constantly engaged in serious observation, or would like to be. That's probably why his calmer shopping that sitting on the floor surrounded by his toys. Those are old news. The world is a big place and he needs to see more of it!

And it seems like I'm always talking about all of those things: how amazed I am by him, how proud I am of him, how smart he is, and how everybody is predicting he'll be high functioning. Of course, that prognosis could change, but with so much struggle behind us, and so much struggle ahead of us, I happy for the good news and progress right now, even while I stand knee-deep in plenty of struggle, too.

Running Down a Dream

2009-12-06T19:53:00.001-08:00

I have post on Dare to Dream this month.
This entry is about Mermaid's medical mayhem and how running a marathon made it easier.

Happily After

2009-12-01T20:05:00.000-08:00

Last year Mermaid experienced hypsarrhythmia A.K.A. infantile spasms or seizures. In this season of gratitude, and as her second birthday approaches, I'm reflecting on that time in our lives. I am so grateful to be outside of that experience, looking back and knowing the conclusion. The uncertainty was crushing. Now doubt is merely the antagonist inevitably defeated by our happy ending.

We have so many "Befores," "Durings," and "Afters" in our days. "Durings" always seem so long, even when they're not. And "Befores" can be discouraging because we can never really go back to them. Even though we can never be sure what the "Afters" will bring, today I'm especially thankful for "After."

BEFORE: Happy Mermaid! So adorable. We didn't even know she had DS, let alone the shadow of seizures in her future.

DURING: The electrical brain chaos caused developmental pause and the steroid-like meds caused weight gain slowing her down even further; no smiles, no laughs, no interest and lots of sleeping.

AFTER: Mermaid began to wake up last December and here she is preparing for take-off in a helicopter aboard the U.S.S. New York. She is all toddler learning to walk, talk, sign and make-believe. She's curious and into everything. She pulls all books off the shelves and has started getting into the refrigerator. I don't even mind cleaning up. I am so thrilled that she is curious and happy.

Yeah, it really has been a year.

2009-10-25T13:04:00.000-07:00

11 specialists

6 weeks on oxygen

6 months in a helmet

4 days in the hospital

3 months on thickened fluids

1 surgery

1/2 million prods, pokes, doctor visits, and moments of worry

All of that put together can't dampen to the elation I feel when I hold him close with his soft, helmet-free and well-rounded head touching my skin. Or when he signs something so definitively I know for once exactly what he's thinking. Or when his whole face explodes into a smile because I walked into his line of sight. Or we laugh at each other laughing for 5 minutes straight.

Motivation

2009-10-18T14:54:00.000-07:00

Mermaid is motivated by food. She was particularly non-compliant at a recent S.I. session held during the witching hour of 4-5pm. So, I pulled out a couple of marshmallows. I'm trying to get rid of this "red light food" anyway. Ms. SI held a marshmallow next to each cup she wanted stacked or peg she wanted put in place. When Mermaid did the task a marshmallow would instantly reward her action. Ms. SI was so excited about the response she declared she would bring treats every week to prompt Mermaid's behavior. She told me of research on Long Island where kids with Downs will hold tongue depressor's weighted with nickles between their lips to eliminate the socially unacceptable slack jaw. If the child continues for a certain time limit, he/she gets to keep the nickles. Is this another weird indignity my daughter will have to endure?

Now I'm in a quandary. I know Mermaid has a slow metabolism and an increased risk for obesity and diabetes. Pediatricians, dietitians and many psychologists agree that food should not be used as a reward. I acknowledge bribes as an occasional fact of life, but can I purposely use it as an ongoing behavior modification tool? I don't think so. I suggested grapes or slices of tomato as a reward compromise, but Ms. SI thinks goldfish and fruit snacks will be the best. They're certainly tidier. I'm putting a pin in it. In the meantime, I'll let Ms. SI use bribes during her weekly session but I won't. Well...I'll make an exception and use the remaining marshmallows to get Torpedo's into his button-up collared shirt on Sunday mornings! ;)

The Boy's Photo Journal

2009-09-27T11:41:00.000-07:00

I was a fish in my other life.

What? Well, how do you sleep?!

Coastal gourmet.

I must be the treat.

All dressed up.

Too tired to eat.

Leaps and Bounds

2009-09-14T19:35:00.000-07:00

The Boy is on fire. ON FIRE.

He is using the potty. Every time I put him on the potty, he makes something, and he waives 'bye-bye' when we flush. He rarely poops in his diaper. His diaper is often dry when I take him to use the bathroom.

He just cut his first tooth.
He is going to sleep on his own, instead of having to be rocked.
He is eating solid food in pieces, not just pureed (though he won't touch the wet foods... he'll only pick up the puffs himself).
And he just did his first sign.

Yes, that's right. His first word. And he really knows what it means. Ready for it? The Boy's first word is "all done". He used it first to say he was done eating. Then that he was done sitting by himself, and done laying down, and done eating again. Now that he's been using it for a couple of days, he just likes to play with the wrist movement, or maybe he just does it over and over again because it's his whole vocabulary so far.

When he 'said' it the first time, I thought I was going to implode, or spontaneously combust, or disintegrate or something. It just seemed like too much. Too much pride, too much joy, too much relief. I'm so crazy proud of my amazing, genius, twenty-wonder.

Company "d"

2009-09-03T15:08:00.001-07:00

Company "d"

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The Mystery Continues

2009-09-02T17:12:00.000-07:00

The Boy (aka Captain Handsome Pants) has no food allergies whatsoever. Milk, wheat, gluten, cinnamon... he's not allergic to any of it. So... uh, um... I'm not really sure where to go from here.

I'm switching body wash. That's done. Maybe that's what caused the rash all along. But this is about more than just the rash now. When I went off dairy, I noticed an increase in my energy levels, and a bizarre side-affect with my hormones (who ever heard of a 7 day cycle?). So, I'm not that anxious to dive back into dairy land, and any milk I do have from here on out will probably be organic (or at least hormone-free). And when I went off gluten (much harder than going dairy-free), it only took a couple of days to see an improvement in The Boy. He was smiley again. I mean, smiling at every glance and word. Happy. Not just quiet. And for the first time in months and months and months (like 6 months), he was pooping on his own. Hurray! Then the Celiac test came back negative, so I went back on bread, and he was plugged up within a day or two. *sigh* Thank goodness for my awesome infant massage skills. I have put them to good use. Back off gluten again, and The Boy is moving things like a pro.

So what's next? I'm still pursuing things with the allergist to figure out the rash (namely the chemicals from the body wash I was using). And she said that The Boy could have an intolerance to gluten, though not an allergy in the academic/clinical sense of the word. What the heck does that mean? I think I need to find a GI.

In good news, The Boy is using the potty already. He has needed so much help with his bowels, he's not in the habit of going with his diaper on. His OT said I should start putting him on the potty when I could tell he needed to go, and it's paid off. He's even started peeing on the potty, too. He still wets his diapers, but almost anytime I put him on the potty, he makes something. Then I let him watch it flush down while we waive 'bye'. It feels pretty darn good to be advanced on something.

Mermaid gets her legs

2009-08-27T21:08:00.000-07:00

Two weeks ago Mermaid took her first unassisted steps. There were at least four witnesses screaming excitedly for me to turn around. I missed it, twice! She spent the next ten days asserting her independence by lying on her back. Now we are practicing walking like two dancers. We face each other and hold one hand. Mermaid is skeptical of this arrangement and frequently holds her ground waiting for my other hand or she lunges forward for a body hold. Still, Mermaid is a natural leader pushing me backwards all around the apartment. It's fun to see where she wants to go.

The physical therapist has been telling me for months, "She'll be walking soon." I can't get too hung up on that kind of language. Progress moves a half step forward and a quarter step back. I trust that she'll get there in her own good time. I should give myself and my other kids that same kind of leeway. Meanwhile, Mermaid crawls like she's swimming. I think she's growing up too fast and My Hero is grateful to have a child who is mile-stoning at a rate that he can track. What's next? Flying?!

Gluten Schmuten

2009-08-19T10:28:00.000-07:00

I know. He's so darling. The bib says "I am a Joy to the World", and the bloomers say "I made a Joyful noise". He got them for Christmas, but they didn't fit, then, and I figured it would be more fun to wait until he could sit up for a photo op. And the robot stuffed 'animal' in the background is the one I made for him.

He has food on his face in this one, but the food isn't red. That is his rash after over a week off of dairy. It has not made a dent. In fact, the rash is really bad around his eyes and has even gotten worse. The allergy test came back negative, which doesn't mean he isn't allergic to milk (or the other half-dozen things for which they tested), but may just mean he's too young to tell by testing. The real test is experience, and in my experience over the past week, going off dairy hasn't changed anything for him. I'm staying dairy-free until we resolve this, but I don't think that's the problem.

I've been doing some reading and I'm feeling more and more confident he has Celiacs Disease. Here's why: The Boy is generally constipated. For months now, I've been massaging his belly to help him empty his bowels. It's rare to have a surprise in his diaper. He's been eating less and less lately, almost measurable by the day. His mood is different. He used to smile at everyone who gave him the time of day. He is still a calm child, but he doesn't seem as happy as he used to be. He puked all over my hair and down my shirt the other day (during a special pre-op prayer for Turtar, as luck would have it). He has this horrible rash (as you can see). I thought it looked a little zitty, but as I started reading about Celiacs, I read the term 'blistering rash' and immediately recognized that was a better description for what he has. And get this: there is a link between Celiacs and chromosome 6. So my criss-crossed, translocated chromosomes have impeded my baby once again. The translocation in my family that causes our miscarriages and increases our chances for Trisomy 21 is between chromosomes 6 and 21. 6 and 21. I'm sold. I took The Boy in today to be screened for Celiacs (or gluten intolerance). We won't have the results for a week, but I don't want to wait that long to see an improvement in my son. I read that it wasn't good to go gluten-free before the screening test, but now that we've done it, I'm off it all!

Thank goodness for hummus. And almond crackers. And quinoa pasta. and Gerber Graduates apple wagon wheels Finger Foods, which are now the only finger food the boy can have at all. Until maybe I make a trip to Earth Fare.

I never liked gluten anyway. Cookies are completely over-rated.

Adventures in Dairy-free

2009-08-13T11:21:00.001-07:00

{The Scene: The Boy's 9 month check-up}

DR. PEDIATRICIAN:

Great. Well, you can go ahead and start giving The Boy yogurt and cheese, everything but straight milk as far as dairy goes.

{4-5 days and a couple of YoBaby products later, enter one nasty, zitty, rash around nose, mouth, eyes, chest. The Scene: Home}

ME: Oh, my poor baby! We will put an end to the products of YoBaby and this horrible affliction will abandon you.

{3 weeks later, the horrible affliction has not abandoned The Boy. The Scene: Pediatrician's office}

ME: Dr. Pediatrician, I don't know what to do! This horrible affliction will not abandon my baby, though we have not partaken of any yogurt for weeks. His breathing is sometimes heavy, his nose clearly has the itch and just this morning he sneezed about 7 times in a row. What can we do?

DR. PEDIATRICIAN: We will do a test. Please take your poor, and already suffering baby to receive much pain as we extract his bodily fluid from his very veins. Also, use this prescription creme in conjunction with hydrocortisone on the horrible rash. Also, stop all dairy of all kinds for two weeks to see if it helps... you know, just in case. And you, too, since you're still breast-feeding.

ME: Oh, okay. *sigh*

{Later that night. The Scene: Home}

THE HUSBAND: What shall we have for dinner tonight?

ME: You and the girl may have cheese omelets. You and the girl may have macaroni and cheese. You and the girl may have sherbet and pudding and chocolate chips, though you probably wouldn't want to mix them all together. You and the girl may have anything you want. I will have dry froot loops. The boy will have actual fruit, albeit pureed. The boy will no longer have any finger foods as they all contain milk, at least milk whey. *sigh* And maybe the horrible affliction will finally abandon my poor baby.

Cute Pills

2009-06-15T20:42:00.000-07:00

Must be Saturday because I'm at the beach snuggling with my Mermaid.

Annual return to the place I told My Hero we were expecting Mermaid.

First rock climbing. She gets that from her Dad.

Just SO cute! She gets that from her Dad, too.

Didn't get anything at the Americana sale, but Mermaid will be back for jewelry. ;)

Christmas with P.T. We love our physio-ball

First Brownie!

First dirt. (I think she liked the dirt better!)
Pre-Barium enema. She was fine, but we got slammed in the pocket book.

Mermaid has definitely been sneaking in some cute pills. She just keeps getting cuter every day.. and she's more of a pill, too! She's not walking solo, but if she can grab your hands she'll take off "running." If there is something she wants to do, she does it quickly. This includes flipping over during diaper changes, combat crawling towards a marble, snatching up finger foods, grabbing a bowl of soup and getting fistfuls of sibling hair. She's quick to see and surprised the opthalmologist by having completely typical healthy eyes. Most of all, Mermaid is quick to smile.

Recently diagnosed with "moderate to mild hearing loss in at least one ear," she may be slow to hear. I'm not rushing to tubes, though. My instinct, my speech therapist and my neighbor who oversees the baby hearing tests at another hospital all indicate waiting. Mermaid has never had an earache and she recently added "M" to her babbulary. I'll take some intermediate steps (some spiritual, some more conventional) before her next test in August.

The family is doing well. Keeping our homeschool on track during daytime speech therapy and making time for afternoon fun around all the other therapists is a challenge. Everyone seems to be surviving, but I'd love to find something special for the oldest kids like a weekly theatre group. Torpedo loves the therapists and always steals the cool toys, so he doesn't need an alternative activity, yet. I still haven't joined a support group, but may be convinced after Plainbellied claimed her support group helps with babysitting during doctors appointments. What a luxury! I feel less frustrated when Mermaid plateaus and it's never long before she's off and "running."

(pictures loaded out of chronological order, but are all from the past 6 months)

Walking!

2009-06-14T22:47:00.000-07:00

Sort of.

So I was demonstrating for my father-in-law the support I will do for The Boy when we get him started on his treadmill regimen. I held him under his arms and moved one foot forward and then the other and then The Boy moved his own foot forward!

I KNOW!! (a la Craig Ferguson)

I guess I really need to track down a treadmill for The Boy ASAP. For now, I'm making him walk between the stairs and the living room, and I help him move his feet a lot of the time, too, but the fact that he can shift his weight to one leg and move the other leg forward and not fall on his darling little bum is so impressive to me. What a super star.

The Mundane

2009-06-10T20:22:00.000-07:00

Someone in my area is joining the club. She found out in May that her baby girl (due in October) will have Down syndrome. She introduced herself and posed a practical question: "What are some of the hardest things you have to deal with in the everyday life of your child with Down syndrome?"

I thought back through The Boy's 8 months in our family as an array of answers grazed past me. Surprisingly, it was the most mundane response of all the lingered and eventually settled in: exhaustion.

And you know what? That's kind of a relief.

It's a hassle to clean The Boy's helmet. And I've forgotten his touch therapy for the better part of the past 2 weeks. I hated lugging around his oxygen tank after he was first born, and it's irritating not being able to let him 'straddle' anything for a month while he recovers from his surgery. I sometime feel strapped for time as I schedule and attend his many appointments (and struggle to get the house straightened for the 'at home' ones). I even worry that I may be draining my support group a little by asking them to watch Her Nibs so often while I deal with The Boy's appointments.

But I only really feel overwhelmed by it when I'm sleep deprived. A little rest and even a child with many special needs becomes quite manageable.

The dishes are another matter....

The Next Hurdle

2009-05-17T20:21:00.001-07:00

The Boy is almost sitting. In fact, for about 2 seconds at a time, he can actually sit completely unassisted. Today, he was prop sitting and pushed up, or maybe used his abs to pull himself up, to a regular seated position before starting to topple over. I'm so proud!

The next big thing is treadmill training. I can't imbed the video here, but you've got to check out this link. By the end of the summer, I want to be doing this with The Boy. Then we'll be starting speech therapy, too, etc., but I can't tell you how excited I am about this research coming out of the University of Michigan by Drs Dale and Beverly Ulrich. This will make a big difference.

The Boy visited the Down Syndrome clinic last week and was declared a success. He's doing very well, and the therapists attributed a lot of that success to his very, very early intervention. That makes me and Turtar feel so good. Extra validation from a professional source somehow felt really fabulous. I've wondered more than once if our therapy sessions and working with The Boy on our own was making any difference at all. I guess it is. That is encouraging. I will try to keep it up.

Helmets, Massage, and Sitting

2009-05-07T22:06:00.000-07:00

That's a lot of pictures, but I can't get enough of these kids. :D

The Boy is pretty much awesome. That's not new. That's old news. But it's so true it bears repeating. So he's had his helmet for almost a month now. We went with solid blue. And I've got to say, I'm really happy with it. It matches EvErYtHiNg in the way of infant boy apparel. The plan was to get biker stickers to put on it. Our neighbor is so cool. She's a Montessori teacher who also rides a Harley and plays with a roller derby team. So she left some stickers on our porch as contributions for The Boy's helmet. Turtar's favorite was this monkey skeleton. It was too big to lie flat on the helmet, so I went to great lengths to transfer it with permanent marker. In fact, I even bought a set of permanent markers with something like 20 different colors. Unfortunately, permanent markers don't stick to this helmet. They work more like dry erase. I have no idea what the helmet surface is made of, but I keep thinking of my high school chemistry class... all I remember is "like dissolves like". Oddly enough, the pencil I used initially to sketch in a monkey skull under the strap, I can't get off all the way, even with rubbing alcohol and nail polish remover. So, usually I leave the helmet plain, but last Sunday I let Her Nibs draw a heart and color it in, and I drew a mouse (at her request) along with some encouraging epithets. The Boy has also seen an osteopath twice and his head is showing significant improvements in rounding out. Hurray! Sadly, Medicaid will only cover these custom helmets before 6 months of age and The Boy was at least 6 months and 5 days at the helmet fitting, so we had to pony up for the co-pay ourselves. He was sweating in it like crazy at first, but it's calmed down a little. It does get really stinky and we have to clean his head and the helmet very thoroughly everyday. Whenever we let him out of his helmet for his one hour, he is positively euphoric. Every time he seems to think "That's the end of that!" So sad it's not true.... but at least one time it will be...

We are also doing infant massage with The Boy. Someone from church is certifying to teach infant massage, so I was fortunate enough to get the course free as part of her certification. (YEAH!) And I like it. I think it's really good for The Boy. At first I thought of it as very extra-curricular, but his therapists and osteopath have been so supportive of it, and proud of me for doing it, that I'm pretty committed. The Boy doesn't like it on his arms and chest though. I mean, he really hates it. He yells and complains during therapy, but he was bawling his eyes out when I massaged his arms and chest. The massage therapist said 'go easy. if he doesn't like it, don't push it'. The osteopath said 'of course he doesn't like it. he's so tight in there, but it's good for him, do it anyway'. And the occupational therapist said 'do it on the arms, but not the chest. there's tons of nerve endings on the chest; we don't even do touch therapy there'. Oh yeah. His Physical Therapist taught me the touch therapy treatments to do today, too. It's with this soft brush, like you would use to brush the silky threads off a corn on the cob. I think it feels nice. The Boy does tolerate it better than massage.

The big goal right now is sitting. The Boy is SOOOO so close. Today he was prop sitting for like 20 or 30 seconds. AAH-SUMMM! (in a sing-songy high-pitched voice) I don't think he'll be there by 7 months (which is tomorrow), but he's almost there. He hates it, of course. But I get that. I started a new workout routine 2 weeks ago and my muscles are always aching. I bet that's how he feels. When I'm sore from the last workout still, I don't really feel like working out again. We're in the same boat. And I find he is a great inspiration to me, motivating me to work harder to develop my own muscle tone, even when it's hard, even when it hurts, even when I'm tired, striving for my own milestones...

And we're doing solid foods, too. That's really hit or miss. I thought we were really getting a handle on it the other day, and he's started sticking his tongue out constantly. Not the "I'm used to nursing and I use my tongue for that" sticking it out, but sticking it out like he's trying topoint at something with it while receiving food. But at least he now accepts eating solid foods as a viable solution to his hunger. Nursing is not the only answer!

In other news, I'm feeling completely inadequate. We're learning about an amazing treadmill intervention that can have kids with DS walking about 4.5 months earlier. Definitely worth the effort, but I'm still cringing a little and bracing myself against yet another step in our daily therapy and care regimen, even as I start scouting out an appropriate treadmill. Maybe it's just another step in the process of accepting my son, but I feel like I resent my own weaknesses, not his. I think 'if only I were more organized and productive, if I were already on top of my own issues, I would be able to handle my son's care better'. *sigh* But we all adapt to the hand we're dealt. Maybe Urban Tangerine would consider adding her bit about Kung-Fu Panda on this blog as well. I keep trying to tell myself 'there is no secret ingredient ... I am the Dragon Warrior'. I may need to make a T-shirt to remind of it, though, printed in a pretty reflective metallic. I am the Dragon Warrior! Or at least, I'm training to be.

skull cap

2009-03-22T15:34:00.000-07:00

The Boy had a head scan this week to see if he needs a helmet. Looks like he does. He has a pretty classic case of Symmetrical Brachycephaly, which means the back of his head is mega flat and the sides are squashed out to be extra wide. Normally, the width of a head is less than 90% of the length, but The Boy's width and length are almost even steven. Here are some pictures of him in his head sock pre-scan. This fancy eye-safe laser created a 3D rendering of his head, which will also be used to make his helmet, so he won't have to do a plaster cast. Hurray for technology!

For all kinds of details about head deformations, helmets, etc., check out Orthomerica's website. They even have a little video that shows how they do the scan.

2009-03-11T17:07:00.000-07:00

If producing ear wax was a super power, I'd buy a cape for The Boy. It took a nurse and three doctors to clear out his ears. He does have super teeny tiny ear canals... maybe he's earned a cape after all.

The weird thing was, after he had his ears cleaned, he ate better than he ever has. He had almost no coughing, sputtering or any indications that he was overwhelmed by the milk. A day later, we were back to the same business, along with gassiness and fussiness coming back. Weird, huh?

And, I learned a new use for laxatives: Drop "Pedia-Lax" in each ear weekly to help break-up the wax. I hope his darling little ears appreciate the Fruit Punch flavor. (double weird...)

Actually, the biggest thing lately (worry-wise) is that the back of his head is still really flat. Next comes a head scan or two to see if his head is technically 'abnormal' and if he needs a helmet. I think if he needs a helmet, I'll buy a mini skateboard to carry around with him.

In other news, he's totally starting to grow hair. Tummy-time is at an all time high, to the point that he's rolling out of it almost as soon as he's put in and pushing up on his hands a little. The Boy is King of The Tummy! Maybe I'll get him a crown to go with his cape, helmet and skateboard. Babies are all about the accessories, right?

The Boy

2009-02-13T05:05:00.000-08:00

After careful consideration of various heroes from mythology and Irish lore, we have decided on a new name for Lizard Loaf. He will now be known on the blogosphere as The Boy.

The Boy is on top of the world right now. He's terminally cute, as you can see. He's got amazing head control. He's reaching for objects and eventually bats at them or grabs them. He tracks objects with his head, and with his eyes alone. And the big change that I forgot to mention is he's breast-feeding! That's right. The Boy is no longer aspirating, and he's been breast-feeding for a month now. He's become something of a connoisseur, actually. Now he won't take a bottle. Ever. That's okay by me.

Her Nibs is even more taken with him, if that's possible. She thinks he's the most beautiful creature of all. She said "I wish I had slanted eyes...*sigh*..." And she figures he doesn't even have Down syndrome anymore since he isn't aspirating. I love that girl.

New skills

2009-01-13T20:22:00.000-08:00

I am happy to report that Mermaid is having a banner quarter. We have just reduced her seizure meds for the last time and if she's doing well after two weeks, she should be done. (fingers crossed) Her latest milestones and skills include:
*two teeth- four more on the way surprisingly coming in the right order and locations
*blowing raspberries-first seen at 3 months, but never since the seizures until now
*reaching
*grasping
*solo sitting for two minutes or more
*legs bearing weight upwards of six minutes at a time
*laughing at funny noises
*laughing when tickled
*increased communication of displeasure, for example fussing if I'm not there even if she doesn't need anything else
*bearing weight on one hand in crawling position
*rocking back and forth in crawling position
**plus-I've seen her pull up to crawling position 4 times, but only on carpet. She's a smartie, that one!

Our Kids Rock

2008-12-18T19:21:00.000-08:00

Mermaid Birthday

2008-12-17T20:12:00.000-08:00

Shout out to Mermaid. My little one is one! My camera batter is dead, but when Grandma sends her shots, I'll upload.
Happy Birthday, M. Thanks for an amazing year of growth for all of us.

So Thankful

2008-12-03T07:29:00.000-08:00

I'm completely overwhelmed, but I'm still alive. My bathrooms haven't been cleaned in 2 months and my shelves are dusty enough to make even me cringe, and I get new medical bills pretty much every week. I'm baffled by the medicaid application I'm trying to fill out, way behind in getting my home-made Christmas stuff put together, and usually end up letting my daughter watch about 4 hours of TV a day. I was below my pre-pregnancy weight two weeks after birth, but now I'm gaining again. I'm trying to figure out how long I can get by wearing just one pair of pants and a nursing bra that has to be pinned to fit properly. Even so, whenever anyone asks how I'm doing I can't help but smile and say "Wonderful!" I'm so happy to have LL for my son. I'm so happy to have Her Nibs for my daughter. And marrying Turtar was definitely the best thing I've ever done in my life.

LL came off oxygen a week ago and finally met Mermaid face to face at Thanksgiving (pictures to follow :D). He has hypothyroidism, but there's a pill for that. Other than needing his blood drawn periodically to check his TSH levels, it doesn't seem like a very big deal. We're still dealing with eating issues (thickening milk to prevent aspiration, supporting his cheeks, trying to get him to eat enough...), constipation, and hemorrhoids, but today he passed his hearing exam!!! Finally. He has normal hearing. Hurrah!

Eventually I'll find my center, but for now I flip between 'brink of disaster' and total elation. Usually the elation wins out, so that's okay by me.

Progress Report

2008-11-23T16:34:00.000-08:00

It's that time of year when the first marks of the school year are out for all my older children and Mermaid has been working hard to learn new skills also. She's so close to sitting unassisted that swinging has become fun. She made a grrrreat tiger for Halloween. She's starting to distinguish her Mama from the rest. She still loves her thumb, but is starting to watch her hands waving mid-line quite a bit as well. Her physical therapist loves to have her standing or in a quadruped position. The occupational therapist loves to see her grabbing and focusing. And the speech therapist is thrilled with the variety of facial responses she is demonstrating. For me...I started with Mermaid. Then I had Mermaid with Downs. Now, it's just Mermaid again. Sure, she's got strawberry blond hair, impossibly blue eyes and Downs. It's just one of those things. What really makes her special is the precious soul inside. I love this girl!

Pictures

2008-11-04T17:25:00.000-08:00

Home, Sweet Home

2008-10-18T07:18:00.000-07:00

We're home now. Hurrah! That CT scan threw us off in the wrong direction for a while. It looked like one of Lizard Loaf's arteries was compressing his trachea. They wanted to do a scope down his throat to check it out. That would have meant general anesthesia. And if it was doing what they thought, he would need surgery on the artery to pull it out of the way.

Fortunately, our expansive team of experts was able to figure things out. Where it looked like Lizard Loaf wasn't fully expanding his lungs to most of the doctors, the lung doctors could tell that he had fluid in his lungs. The cardiologist also said, separately, that it didn't look like the artery was causing a problem. The ENT gang backed off on the bronchial scope. At this point, Lizard Loaf had been cleared of all infections and was just in the hospital because he needed to be on oxygen. The big question became: How did the fluid get there?

Our amazing pediatrician recommended a swallow test. This means enriching Lizard Loaf's bottle with barium and taking a video x-ray. As it turns out, he has been breathing in some milk when he eats. He has a delayed swallow, which means he sucks in the milk, but doesn't start to swallow at the same time. So, some of the milk falls down his open airway. The answer is relatively simple. We need to thicken his milk with some rice cereal. This will give him better control of the fluid when he's swallowing, and also, as I understand it, make the particles to big to get all the way down to his lungs. Meanwhile, he's on oxygen, which is not as much of a hassle as I thought it would be, and we are treating him with chest claps to help the fluid get out of his lungs. We hope it all works. It's a low-tech operation. We're trying to find a good nipple for his bottles that let the thicker liquid through easily without gushing out so much that he can't control it. Turtar and I received different training on how to do the chest claps, and that concerns me. Besides, it seems a little funny that clapping a cupped hand on your baby's chest in certain ways for 12 minutes in the morning and at night will get fluid out of his lungs. Here's where I defer to the experts again. We see the lung doctors in two weeks, and we hope we can get rid of the oxygen tube. We hope that this aspiration problem is the only cause of the fluid in his lungs and that we have the final solution already.

We are enjoying a quiet weekend at home right now, just enjoying the size and rhythm of our newly expanded family. A few days ago I had what might be a generic epiphany. Down syndrome is LL's burden, not mine. I think that before I may actually have been crying for myself, thinking about my own hardships. (How selfish am I?!) At the hospital while I held him, I just cried and mourned all the extra burdens he already has in this life, all the stumbling blocks he's faced and will face. I know that his soul is eternal, and Down syndrome is not. I know that in this life, we will cherish and love him, but I'm anxious to meet him in the next life when he has been freed of these burdens.

Turtar and I have also chosen his theme song: "Workin' Them Angels" from the Snakes & Arrows album by Rush. Here's the chorus:

All my life

I've been workin' them angels overtime

Riding and driving and living

So close to the edge

Workin' them angels - Overtime

There and Back Again

2008-10-14T12:40:00.000-07:00

Our baby boy is finally here! Turtar is working on a new codename, but we'll keep calling him Lizard Loaf for now. Nervous mother that I am, I decided to be induced at 39 weeks. Everything went great, and he was born 5 hours after we arrived at the hospital for the induction. Other than being a little jaundiced, he seemed perfectly healthy. We went home on day two and drank Martinelli's with every meal.

A day and half later, we were back at the hospital. I noticed he felt cold around 4:00 am when I fed him. A call to the doctor led to a visit to the ER. Fortunately, we live 15 minutes away from a rock-awesome children's hospital. They don't take chances, especially with newborns. It did kind of freak us out, though, when someone actually met us outside, rushed Lizard Loaf and myself back to a room while Turtar checked in, and started a battery of tests. Oh, and we had about 6 nurses and doctors all crowded around him. Later, we had fewer. We found out nothing had been happening in the Children's ER for the past 2 hours. We were all the action.

Apparently, low body temperature is just as significant as a fever, and possibly even more so. We expect a fever to develop to fight an infection or virus of some sort. With a low body temperature, the body might be so weak it can't even mount a fever; it can't even fight. That's one option. It could also be caused by just about anything. Best case scenario: He is a sleepy baby. He didn't eat well. So, he didn't flush out his jaundice, and he gets sleepier. He eats less, etc., and becomes dehydrated. Dehydration could cause the body temperature to drop. Worst case scenario: Meningitis (I think). Lizard Loaf was very dehydrated. The doctors said he would have been admitted to the hospital just for that reason. But, meningitis can be fatal, so they aren't going to settle for just an IV when the problem could be so much bigger.

I can't even keep track of all the tests he's had, all the results from the tests, and what the possible meanings of those results are. He was placed under a heat lamp right away. They took his blood, which is very sad and difficult by itself (he has my veins; we're stingy with our bodily fluids). They put in an IV, also next to impossible, and had to strap it place. It takes up almost all of his forearm and looks like he's wielding a brick. They attached leeds for heart rate and temperature. They taped something else (first to his foot, then his forehead, then his hand, then back to his foot) to measure his oxygen levels. His oxygen levels were low, so they put him on oxygen. They did a spinal tap so they could test his spinal fluid for infection. He was so dehydrated, it an hour just to drip enough spinal fluid into the little test tubes to run the test. They didn't have enough blood for his tests, so they had to take his blood again. The IV was set up to be used for a blood draw, too, but that wasn't actually possible, so they had to stick him again.... and again and again. They ER nurses blew at least 2 veins before they got blood, and it was coming too slowly, so they had to start that one over again and suction the blood from his veins. It was a very rough morning, to put it gently.

For now, his body temperature is holding steady. He is eating much, much better. At one point, he ate 60 ml at once where he had been eating 10 ml at a time. Mostly, he's been in the 25-40 ml range today. He is peeing and pooping well, which is flushing out the jaundice. They have been able to reduce his fluids. He's had to have blood drawn several more times, but the tech seemed more capable. At least he didn't blow any veins, though he still had to suction the blood. And the last blood test was just a foot prick. They have tried taking him back off oxygen, but his levels drop when they do. So, they x-rayed his lungs. They called the x-ray 'abnormal'. They wanted to get a better look at his trachea, so they put a scope down his nose this morning. They still couldn't see what they wanted, so they did a CT scan. We haven't heard back on that yet.

Other tidbits: His thyroid levels were slightly elevated, as is his red blood cell count. His hepatitis test came back negative, so they took him off that medicine. We saw an speech pathologist today who watched him eat. He swallows well, and sucks well, but does have trouble maintaining his seal, which means poor efficiency. He needs 'cheek support'. (As if I needed incentive to squeeze his cute little cheeks!) This is apparently really normal. When the speech pathologist mentioned this ('cheek support') to the nurse, she said, 'Oh. Okay.' So, I squeeze his cheeks in a little when I'm feeding him to keep the seal on the sides. We also saw some ENT guys (three of them... this is a teaching hospital); they are the ones looking at the trachea. Well, everyone seems to be looking at his trachea. First the pediatrician wanted to see it, but he had to look at with a radiologist, and then they showed it to the ENT guys. I guess it's another radiologist that will look at the CT scan, as well as the ENT guys and the pediatrician.

Tomorrow, he will have been on antibiotics for 48 hours. We hope by then to have ruled out the other major infections and to be going home. Hopefully, he'll be cleared and cured completely. Maybe there will still be some problems that need to be tended, but without staying over. But, will they have uncovered something else that will require extending his stay? How much do the red blood cell count and thyroid levels matter? What is the deal with his trachea? Why is he needing oxygen at all? We'll all stay tuned...

And I promise pictures another time. He is abnormally beautiful. And I did a full face of make-up before I went in to be induced, so I'm not even that embarrassed by the pictures of me. Soon, I promise. For now, there are two pictures of Lizard Loaf on this blog.

Acclimating

2008-10-05T18:56:00.001-07:00

The medicine is called Vigabitrin or Sabril. It's time to learn the name since Mermaid will be taking it for about 6 months. it comes in a little foil pouch and I mix it with a little water each day to dose Mermaid morning and night. It's only good for 24 hours. She has been taking increasing dosages of Vigabitrin while tapering off of ACTH. But even the miracle drug from Canada has it's downside. Mermaid has had a lot of rapid eye and head movement. She seemed confused. She forgot how to nurse...surely she couldn't have lost her appetite. Eating was really the only skill she had left on track.

She wouldn't respond to the breast, but could manage the bottle. That's how I know she only drank 3 oz. in about a day. Her neuologist told me to hot foot it over to her pediatrician to see if Mermaid needed hospitalization again. Fortunately, she didn't look "septic" or "toxic." Their words. The took her glucose. Tested her urine and tried 4 times for blood, but came up dry. Mermaid wouldn't give them anything. It's probably because she was dehydrated. Mermaid didn't cry at all. She just grunted once or twice and almost fell asleep as the various nurses and doctors all tried their hands at a needle search for veins beneath her chubbiness. It's just not natural to be so accustomed to poking and pain. I'm sad for her acclimation.

Ultimately, Mermaid perked up, nursed and her Vigabitrin dosage was cut in half. She has continued to nurse, but doesn't cry if she's hungry, so I have to think of it. I know I'm not currently producing enough for her and last night she accepted an additional 12 oz of formula. So far I have noticed some shaking in her right arm and head a la Parkinson's disease. She is also sleeping like a newborn. It's been a couple of months since I've seen her smile. I miss that. I guess I'm acclimating just like Mermaid because this is not making me cry either. We are absolutely doing the best that we can and I need all my energy for taking care of my family. I can't waste it on worry. I'm grateful for every day that I get to hold me sweet little one and kiss her chubby face.

Guess I'm not over it.

2008-09-26T16:35:00.000-07:00

Yesterday when I went to the grocery store, I saw a man with Down syndrome bagging groceries. It made me sad. I want my son to be more than a bagger at a grocery store when he's 40.

staying the course

2008-09-15T23:06:00.000-07:00

Dr. LaJoie said to stay the course with the ACTH. I guess she expects it may take a little longer to show it's true usefulness. So that means another week of full dose injections and major cranky baby followed by yet another EEG and weaning off of the ACTH. If all goes well with the EEG that will be the end of it...I think. If not, Mermaid will then start up another medication that I am not learning how to pronounce unless she actually has to take it. But it is not quite FDA approved and imported from Canada. Either way, I want to figure out how to donate my unopened vials of ACTH to NORD because each of those suckers costs about the same as a new car and I'd love to share that gift with another family.

Tangent about scrubs

2008-09-15T22:07:00.001-07:00

Scrubs are a scam. Granted, there was never any PSA indicating that medical professionals would dump all of the street clothes in a locker and then have a scrub down with boiling water and lye soap prior to donning their sterilized scrub suit especially for medical providers. But "scrubs" sounds like scrubbed, tubbed, germ free and ready to give you sanitary medical attention. However, I see these people in scrubs walking the streets, buying their lunches from street vendors, leaning against exterior walls and taking smoking breaks. Scrubs give a false sense of germ security. I think people really wear scrubs because it makes wearing pajamas to work acceptable. I get it. Medical professionals work crazy hours and it's hard to tell whether it's day or night when you're living in florescent lights for 18 hours straight. I should get some scrubs so that I can sleep in them and then roll out of bed ready for work. What do you think? Should I get the plain or something a little edgier with hearts and angels? ;)

It's not a problem.

2008-09-14T20:16:00.000-07:00

I think being a mother is pretty demanding. And, of course, it's never the only thing any of us is doing. I don't know, but I anticipate being a mother to Lizard Loaf in particular will be extra demanding. I've decided I don't have time to battle with my weight anymore. Mother of two, one of them with DS... I can't imagine when I'd find the time! So, I've decided to be thin and be done with it. I'll give myself a month off after my boy busts out. Maybe six weeks. And then I'm moving on, leaving the weight behind.

*phew* What a relief! I feel better already...

Mermaid resurfaces

2008-09-14T14:59:00.000-07:00

The past several weeks have been full. We met Mermaid's service coordinator. She came into our home and explained the whole process to us and then arranged for some evaluators to check out Mermaid's sweet skills. We picked a provider that would send all the evaluator's at once rather than spread out over the course of a week or so. We all anticipated the 5 evaluators emerging from their van in their matching scrubs a la A TEAM (now you know how old I am ;). My Hero and I were fiddling around with a potential theme song for them, but alas they ultimately had to spread it out over three different days. They did still wear scrubs. That all happened at the beginning of August and we were anxious to get services going.

Before the evaluation reports even arrived something else started going on with out little Mermaid. I thought it was gas pain at first or possibly hiccups. Her body would jolt a little almost like a startle reflex and then it would happen again and again seconds apart. As this pattern emerged a friend connected me with her friend, I'll call her Providence. Providence has a gorgeous daughter with Downs who had recently been diagnosed and treated for infantile spasms. Of course this all came together during the last two weeks of September when every medical professional in the entire city was on summer vacation. It took me four or five days just to get a live person on the phone to make an appointment for Mermaid. Providence was so encouraging giving me phone numbers and checking in with the professionals she knows to help Mermaid get in to see a pediatric neurologist. She told me not to give up nor to put it off.

The Tuesday before labor day weekend we got the golden ticket which included an appointment with pediatric neurologist extraordinaire Josiane LaJoie. It's a beautiful name and she is a beautiful person. We started with a little EEG and then a meet and greet with Dr. LaJoie. The surprise ending was that Lily and a friend won a three night/three day stay at the NYU medical center including unlimited crushed ice and round the clock EEG and video surveillence. I was the friend. I called My Hero and we hustled to figure out what to do with the other four children.

The upshot is that Lily had five seizures, for that's what they are, while being monitored. She was prescribed a steroid like medication called ACTH. Initially, our insurance denied the request because this miracle drug costs about six thousand dollars per shot (.5 ml). The six week therapy would cost roughly 175K. I would ask for physician back-up, too. An organization called NORD (National Organization for Rare Disorders) called and donated the first precious vial of ACTH to buy us a little time to work things out with the insurance. We would not have been allowed to leave the hospital without the medication plus I had to get trained to inject Mermaids chubby little thighs. If you want to donate to something, NORD is a worthy cause. Meanwhile, the lovely women working for the insurance tel-pharmacy in SD have little babies, too so they kept me on the phone until it was all worked out. Ultimately, the entire supply arrived simultaneously.

I thought we would get to leave the hospital Thursday morning after proving that I could give Mermaid the shots. I practiced on every kind of fruit I could find. I practiced on the vinyl "daybed" in the hospital room. I even practiced on myself a few times to get a feel for it so I wouldn't choke up when I had to inject my sweet babe. That's when they told me she would still have to stay the night for observation after her initial dosage. *sniff* Our whole family was disappointed, but we were reunited Friday and grandma stayed an extra night. We had Mermaid's blood tested a couple of times over the next six days and her paternal grandparents came to relieve m-grandma and immerse all the kids in extra attention after the deficit. I think we were all suffering attention deficit disorder and all the attention really helped!

At the end of the first week on ACTH Mermaid wasn't having so many clusters or episodes just a little spasm here and there. They upped her dosage. I took her in on Friday for another EEG and it still doesn't look perfect. I was pretty depressed to learn it wasn't working and that even blinks and stares represented electrical misfiring in her brain. I've been pretty discouraged for about 48 hours. I went to church today, though, and I'm starting to feel uplifted and even hopeful. I'll meet with the neurologist Monday to see what's next. I'll also be meeting with an osteopath on Tuesday who may be able to help. I'll report back on that. Lastly, we finally have our IFSP which translated means: big meeting withe everyone to decide what early intervention services Mermaid will receive from the city.

Now for the special thanks section:
Special Thanks to My Hero for being the most available and optimistic best friend.

Special Thanks to our homeschooling friend on the east side for keeping our four children entertained and fed during a 6 hour play date and told us that it was no big deal. It was a big deal to us.

Special Thanks to Mermaid's maternal grandmother for interrupting her visit to other grandchildren to ride the un-exotic chinatown bus in the middle of the night to care for her four motherless grandchildren at my house. She also donated her favorite mini flashlight to the cause so I could read or visit or see my way to the bathroom at night without disturbing our lovely roommates.

Special Thanks to My Hero's employers for being so understanding about skipping so many work hours to be with Mermaid and I or with the fantastic four at home.

Special Thanks to friends and fellow church members who spontaneously started bringing meals.

Special Thanks to Providence who continued to encourage me and send positive thoughts our way. She even came by the hospital for a 1 hour visit bringing healthy snacks full of protein, magazines requiring very little brain (which was all I had), and a sweet toy for Mermaid.

Special Thanks to our dear upstairs neighbors who entertained me with hours of conversation at the hospital one night. Always a pleasure.

Special Thanks to our UWS homeschool recess coordinator who continues to send prayers and offers to help our way. She is always thinking of my kids and sending email links to websites and articles that might interest them. This is especially good because I keep forgetting to think about them.

Special Thanks to NORD and to our insurance tel-drug ladies in SD...you know who you are!

Special Thanks to Grandma and Grandpa DC who spent their labor day weekend giving us all the attention and Finnish meatballs we could hope for. It was very restorative.

Special Thanks to my Washington Heights friend who runs with me in the mornings, asks me about Mermaid, invites my children for play dates and doesn't try to stop my tears when they come once in a while.

Special Thanks to all our family and friends who were thinking of us and praying for us!

First Contact

2008-08-26T22:07:00.000-07:00

I just moved. It's not that big a deal, really. I've moved at least 10 times in my life, and that's not counting any of my various apartments in college, etc. I figured once we got settled, I'd contact the local support group and join the party. No big deal.

It was harder than I thought.

The group out here is pretty big, I guess, and very organized. Their website is amazing, and actually helped me choose the hospital where I want to deliver Lizard Loaf, which also led me to my new doctor (who I hope is amazing... she sure sounds like she will be). For contact info, there was a phone number and general email address, too. I tried the number first. Even just dialing it, I felt anxiety. What do I say? I got some sucky news this past summer, so will you guys be my friends? Everything I thought of sounded pretty much as bad. But even worse, no one answered. The contact number for this support group went to a voice mail. "We try to check these messages frequently," it hedged. Try?! So, if you're busy, my petrified call for help would be what? Over-looked? Misplaced? Out-dated? Forgotten? I started feeling like I already belonged in the 'round file' (aka-trash can). No one was going to listen to my message. There wasn't going to be anyone in my new town to help me. I was alone.

*sigh*

I cried a little. Then I sent a terse note to the email listed and left the computer. My daughter's preschool tries to use redirection as the primary response when children get upset or misbehave, and I thought I'd try the same thing. I don't remember what I did, but an hour later my husband happened to check my email. I had such a wonderful note from one of the board members of the local group, and she had responded to my email within 10 minutes. It was a few days before I responded, and I still haven't called to set up a time to meet her and her son, but hearing from her has been such a comfort, such a strength. I'm not in the 'round file'; I'm not alone. My new friend says that I'm part of a special club now and that 'we stick together'. I think I believe that.

Mermaid's EKG/Echo

2008-07-22T21:21:00.000-07:00

Sweet hair day for Mermaid! ;)

Mermaid had her EKG and echocardiogram on the same day as LL (Lizard Loaf). It's destiny. The MD felt confident telling me that his preliminary viewing of 80 something pictures of her heart indicated no defects. The total number of photos topped 130+ by the time we left and they'll be comped over before the official report is filed, but I'm feeling pretty good about that diagnosis. =)

Fortunately, I had a girlfriend explain what to expect and how to prepare. I want to be that girlfriend for you, in case any of you are going through this for the first time. Step one: plan to be at the hospital for a while. I packed a couple of Clif bars for me and a bottle for Mermaid. The EKG wasn't a big deal. Mermaid did have to strip down to her diaper and it took a couple of minutes to put special stickers all over her and hook up the electric leads, but the actual test only took a couple of minutes max. then they removed all of the stickers, though some residue remained on Mermaid's belly. I asked the technician how the results looked and she just said she wasn't a physician and couldn't discuss it with me. That left me nervous. I learned they really just can't tell you. It's not allowed.

Then we waited to be called for the echocardiogram. I had heard this would take about an hour once they started. In our case it was 2 technicians and 2 doctors and 1 hour 45 minutes. Mermaid finished her bottle and I had to down a Clif bar while they were changing technicians. Technically, no food was allowed. What's a nursing mom to do? I had left my home three hours earlier! It's important that the child hold very still especially during the echo, so being asleep or having a bottle to drink for that 1-2 hour process is so helpful. The last thing you want to do is be sent home and have to reschedule because your baby wasn't cooperating. Also, baby must be bare chested so it might be nice for baby to wear a button up or just take baby's top off and keep baby comfy in a blanket until it's your turn. Maybe baby will even fall asleep and you wouldn't want to have to wake them up by taking their clothes off for the echo. Now, the technicians could certainly help the process by warming the ultra sound gel. Mermaid was actually pretty good and took her sweet time with the bottle, but towards the end got really bored with being calm and wanted to play with the cables stuck to her shoulder. The technician was working right under her neck, so Mermaid went to work sucking on the technician's hands.

It was amazing watching her little heart pump so steadily. I could clearly see all of the chambers working. Then the technician would flip a switch to help her see blood flowing in and out and it came in three different colors: blue, red, yellow. It was like fireworks exploding in Mermaid's chest. When the doctor came in to tell me there were no defects, I felt like there were fireworks exploding in my chest too! Woo Hoo!

Echocardiogram

2008-07-18T15:00:00.000-07:00

I nearly passed out. It wasn't that the news was shocking (we didn't even have any news yet) or the procedure so painful (no needles involved)... actually, I don't know what it was. But whatever the cause, I started to black-out about 10 minutes into the ultrasound with the pediatric cardiologist. They got me some more pillows, a drink of water, and I stole an apple slice from the snacks I'd brought for Her Nibs. I've still felt weak all day, but I did avoid actually passing out.

An echocardiogram is an ultrasound where they look exclusively at the heart, but in great detail and with an expert on the heart. We saw a pediatric cardiology fellow first, then the head honcho pediatric cardiologist came in for a few minutes to get a few pictures himself, and he's the one who sat down and talked with us afterwards. I shifted by legs around a little at the beginning and the doctor said "Yeah. Make yourself comfortable. This is going to take about 45 minutes." Seriously?! A 45 minute ultrasound?! Yep. Seriously. We accepted their offer to put a movie on for Her Nibs.

It wasn't fun, exactly, since I was still sort of fighting for consciousness the whole time and felt very uncomfortable while trying to lie still and hoping Lizard Loaf wasn't in a bad position for pictures. At the same time, I've been waiting anxiously for this day and the results of the echocardiogram ever since we learned Lizard Loaf has Down syndrome. Nearly 50% of children with Down syndrome have a congenital heart defect (you probably know this, but congenital just means 'born with it'). Usually, the problem is a hole between the four chambers of the heart, pretty much right in the middle. This is, of course, a bad thing. The solution is a surgery within the first year of life that is actually fairly routine. Babies with this heart problem have a harder time circulating oxygen, so they tend to be sleepier, and I've read about one that had a bluish tinge until after the surgery. From what I understand, babies who need this surgery are usually in the hospital for less than a week and recover very quickly. This sort of health problem is not desirable (by any stretch), but it's not the end of the world.

Fortunately, Lizard Loaf's echo cardiogram came up completely normal.

*huge sigh of relief*

We're not completely out of the woods, but Lizard Loaf definitely doesn't have the big hole in the middle of his heart between all four chambers. In fact, he doesn't have any major heart problems at all. Unfortunately, this ultrasound can't see everything. The heart, I learned today, works differently before a baby is born. The heart fast-tracks oxygenated blood from the placenta straight to the brain, rather than cycling it through the lungs first (which don't have any oxygen to give yet, obviously). Once a baby is born and starts taking in oxygen, the tubes change a little, and the blood picks up oxygen in the lungs before going to the brain. The pressure between the various chambers of the heart changes after a baby is born, too. Some things that might be invisible now would be apparent later after these changes happen. Also, Lizard Loaf's heart isn't much bigger than a quarter right now. You can only see so much on such a tiny organ. There's still a chance he has a small hole in his heart. Even if he has one now (which we can't detect), it could easily fix itself before he's born. And even if he has one that doesn't fix itself before he's born, it would probably still repair itself and not need surgery.

I know this is a rambling post. I hope it makes sense. Bottom line: There are no guarantees in life, but in every way we can measure right now, Lizard Loaf is perfectly healthy. And Turtar and I are very grateful for that.

Pictures

2008-07-10T14:25:00.000-07:00

Yeah. I know. He's pretty much gorgeous (and with quite a schnoze, too). Sometimes I wake up and think: It's all a mistake. When my baby boy is born, he will be healthy and normal. He especially will not have Down syndrome. What is counting chromosomes suppose to prove anyway?

*sigh*

Natalie Merchant's song "Wonder" fits Mermaid better (for reasons of gender), but I've adopted it, too, as part of a new logo. I'm making a onesie for Lizard Loaf with this on it:

at the beach

2008-06-26T20:10:00.000-07:00

Have you ever noticed how whatever is on your mind suddenly plays out in the world around you with crystal clarity? We've had Down Syndrome on the mind and suddenly it seems like everywhere we go is someone with Down Syndrome.
Today we saw a young man with Downs who had very little hair--it looked like a chemo-treatment sort of hair loss. A couple days ago, we saw a young many with Downs dressed like a little g...beard, sideways hat, big black rapper shirt baggy pants. Each person we've seen has been dressed in clean clothes that seem to be what the parents think is the best look.
One little girl with Downs at the beach caught my attention. I'm not sure how old she was, but she was at least four or five. She wore a great pink strawberry swimsuit and had cute pigtails. I saw her just past the life guard chair sitting face-front on her mom's lap as they joyfully leaned in for kiss after kiss. Her family was a big group--with cousins and aunts and uncles and grandparents. I'm so glad our family gets to share in the joy and pain, triumph and frustration together.
We should do it at the beach. =)

Culture Un-Shock: Validation Station

2008-06-25T20:35:00.000-07:00

I shouldn't be so delighted by the annoyance of other people. I have been annoyed by so many things lately, I should have nothing but pity for others suffering in the same way. But I'm delighted.

I don't think I fit the mold of a parent to a child with Downs. So many things seem to bug me, some coming straight from other parents in the same situation. With specialized levels of political correctness facing me in this new society, I've felt doomed to be an outcast, even in the support groups. But there is hope.

I read this article called "You Will Dream New Dreams". This woman went to tons of online forums oriented around different disabilities and asked parents what they liked to hear, and what they didn't like to hear when people were responding to their child. Of the Top Five Worst Responses, three are among my pet peeves.

I'm not the only one who feels this way! I'm not so different after all!

This list brought another important taboo to my attention, too. Even 'positive' stereotypes are negative. Children with Down syndrome are assumed to be happy, extra loving, and joyful. The article says:

I can honestly say that not one day goes by [unless] someone feels compelled to tell me, "They’re such happy and loving children." Well, aren’t all children? One parent wrote, "What about when they’re no longer children? Oh great I’ll have a 35 year old child." Another said, "Yes he smiles, he also has temper tantrums.
He gets happy AND sad. He doesn’t just live in his own little world."

I'm so glad to hear this. Just three days ago, I found myself saying this to a friend: "I've heard children with Down syndrome tend to be so loving and accepting. But I have a hard time imaging a child more loving than Her Nibs. She spontaneously kisses, hugs and proclaims her affection. Sometimes she bursts out jubilantly 'Isn't it wonderful being a family?!'" I just hope Lizard Loaf is as happy and loving as Her Nibs.

Side Note: Since Lizard Loaf is due in October, and we are being optimistic about his health, Her Nibs has already planned our Halloween costumes. She will be Princess Leia, Lizard Loaf will be Luke Skywalker, I will be Queen Amidala, and Turtar will be Darth Vader. We will all have light sabers, too, though I'll have to carry Lizard Loaf's of course.

In Defense of Prenatal Knowledge

2008-06-24T18:40:00.000-07:00

I've been asked before why I choose to have an amniocentesis. A few recent experiences have prompted me to post my answer here. (Maybe getting it down in words will help me feel less defensive, too.)

"We just heard the heartbeat for the first time today." This is my co-worker. He was surprised to have an ultrasound at the first appointment, and he did not like the tech. I was trying to be reassuring, not controversial. "Don't worry. They check for tons of different things at the 20 week ultrasound. So, it'll probably be a doctor, not a tech, doing the ultrasound." He was mortified when I told him that some of the things they will look for are markers for Down syndrome. He wasn't mortified by the hard reality that problems might crop up, but by the fact that doctors would look for these things at all. He and his wife would never consider terminating a pregnancy, so what was the point? A tech should be able to determine the gender, right?

Obviously, there's a lot more to an ultrasound that discovering your baby's gender or deciding if you want an abortion. This guy is a novice, and I won't waste time on a post in defense of ultrasounds. But he was also coming down against prenatal diagnostics.

When someone finds out I've decided to have an amniocentesis, he or she often starts to judge right away. There are risks involved with this test: about a 1 in 200 chance of complications. Don't I value the safety of my baby? Was I considering abortion? And if I'm not considering abortion, then there is no reason to have the test, right? What kind of insanity must rule my mind? *sigh* My answers seems simple to me, but I always feels long-winded giving them.

I recognize there are risks with an amnio, but they are nominal. Most of the possible 'complications' are no threat to the baby at all. The amnios I've received were also with experienced doctors in excellent facilities where the risks of complications were significantly reduced.

I could never seriously consider abortion (though 90% of babies with a prenatal diagnosis of Down syndrome are killed). It offends my personal beliefs, and would probably get me excommunicated, to boot.

Beyond that, I've got this crazy notion of knowledge for the sake of knowledge. (Big surprise I ended up married to an historian, right?) Most of my family has a genetic translocation. Distinctly related to our translocation, we have an increased incidence of miscarriage (though it's impossible to quantify heartache) and a history of Down syndrome (5 now between cousins, nieces and Lizard Loaf). If I didn't have this translocation, I would probably never choose to have an amniocentesis. But I do have it, and I want to know.

I want to know if my child has the translocation. Problems may come anyway, but will she be at a higher risk for miscarriage and a child with Down syndrome? Will she want that knowledge when she's older? Genetic testing isn't cheap, and it isn't always covered by insurance (mine wasn't). An amniocentesis is even more expensive, but it is covered. Also, having this information in my medical record instead of hers might be an advantage some day.

I want to know for myself. I knew I had a higher-than-average risk of receiving the very result I got 19 days ago. I've talked to SumGreater about this possibility. I decided that if it happened, I wanted to isolate my grief. I didn't want to feel disappointed with the child in my arms. I don't think I could bear the guilt. I'm not completely past the grief yet, but I know it won't be with me in the delivery room. I'm glad I know.

Context

2008-06-20T16:17:00.000-07:00

I just wanted to put Mermaid in context and there was a request for more photos.

Complexify

2008-06-18T19:55:00.000-07:00

Complexify is a real word. It's at the top of page 118 in a book called "Difficult Conversations" by a group of smarties from the Harvard Negotiation Project. According to them "complexify" means to recognize that no one is always anything.

Tonight I am having some heartache and tears because every single day my sweet, sweet daughter has Down syndrome and I have no control and no idea what that actually means for the future. I only know what that means right now - today. Tomorrow or next year it might mean something different. This growing realization is teaching me some things about myself that are not attractive. I am proud. I'm thinking we can learn how to help her ourselves and do it without therapists. The poor kid can barely get a 10 minute break before myself or a sibling is working on physical therapy with her. Sure, I can homeschool all my children, what better inclusion program is there? Ha! I can't even get my grocery shopping done this week. Who am I kidding? I'm also recognizing pride in my attitude that if our daughter has disabilities and delays, she's going to be the cutest, smartest, highest functioning person with Down syndrome you ever met. Honestly, Urban Tangerine. Stop being so image oriented, controlling and competitive. Who am I even competing with? I just want to help Mermaid maximize her potential. But maybe...there's too much "I want" in that. "The hardest part of love is the letting go." -Stephen Schwartz. The only guarantee is that she has all our love.

I don't even know if my heartache and tears are for her. Maybe some of them are. I think this internal metamorphosis just hurts a little bit (or a lot) every now and then. I don't always feel one way. I'm so glad Mermaid is here to lay on my chest and blow happy raspberries at me while I weep and wonder. It's complex. I must complexify. Okay, she's just being way too cute right now. I'll have to complexify later.

Where is it?

2008-06-17T21:22:00.000-07:00

Tonight Buttercup (who is old enough to pick her own code name), asked me:
"Where is Down syndrome? I mean, where on your body?"
Classic mom response:
"What do you think?"
Buttercup:
"I think it's on your feet"
Me:
"Because Mermaid has a couple of toes that are sort of stuck together?"
Buttercup:
"Yeah."
Buttercup gets to stay up and look at pictures on DS association websites and talk.
Me:
"So, it's kind of funny that people make such a big deal and give it this special name and everything when all these kids are just doing kid stuff, huh?"
Buttercup:
Just gloating about having defied bedtime again. =)

Bananas

2008-06-17T12:42:00.000-07:00

I just got back from our appointment and the genetic counselor shared the results with us. He said, "I wasn't sure about her. Sometimes I looked at her and couldn't tell. Her features are not so striking (I knew what he meant), but other times I was thinking maybe she does have Downs. She was fooling us." She's such a tease. Mermaid does indeed have three cute little squishy looking #21 chromosomes where most other children only have two. That's called Trisomy 21 or Downs Syndrome. My Hero said, "We put the 'O' in chrOmOsOme."

Then the geneticist joined us and said Mermaid may or may not have Mosaic Downs, but that really makes no difference because some kids with Downs have fewer limitations than some kids with Mosaic Downs and vice-versa. If we really wanted to pursue it, they would have to take different tissue samples and chase it down. But it wouldn't change the prognosis. They had only ordered the "Fish 21" in case the extra chromosome didn't show up in the original karyotype (blood test). We set up an EKG and echocardiogram and we'll meet with an opthomalogist. We spent the rest of the time talking about early intervention which generally consists of physical therapy, occupational therapy (I don't know what that means, yet) and speech therapy. They also gifted us a book, "Babies with Down Syndrome; A New Parents' Guide." Free books, definitely a benefit. All of these regular appointments will alter our freestyle life, but a little structure could be a good thing.

One thing I really appreciated was that the geneticist always referred to "children with Downs"; never "Downs children." I've been doing that, too because I feel that the person comes first. Now, that I've read Plainbellied's post, I know it's the protocol in the communities of people who love and care for children with Downs.

I guess we'll be visiting the geneticist every year moving forward, as well as the opthamologist and probably an audiologist. New friends; benefit. The four year old girl with Downs our geneticist met with before us could read and was starting to write. She carried on conversations with them, etc. My 6.5 year old still doesn't read. We'll just watch and see what Mermaid has in store for us.

Lastly, I asked about sibling workshops or something to address the needs and concerns of our other children. The counselor said, "Oh, they're going to be bananas about her! Children with Downs are so social and funny. They love music and dancing. They'll be just bananas for her!" Of course, we all are!

Culture Shock

2008-06-17T09:10:00.000-07:00

Yesterday we met with an amazingly sweet woman from the local Down Syndrome support group. She is fabulous. When she first called, we weren't home, so she left a message saying she didn't know where we were emotionally, but that if we wanted, we could come to the pool party that night. (Extra parties?! Definite bonus!) We opted for meeting privately first and learned a lot.

I knew this would be a challenge, a journey, a transition, but for some reason, I was taken off guard by a completely unique culture. Here are some of the things I learned that surprised me:

Mongolian Idiot. This used to be the psychological classification for Down Syndrome. Mongoloid or Mongolian refers to the tendency toward slanted eyes. Idiot was the classification for the mental retardation. Wow. Once again--so glad to be here in my decade instead of 30 years ago.

Delayed. This is the preferred term. Over retardation or mentally handicapped, the preferred expression is to say that the person is developmentally delayed. This has more to do with the stigma of 'retarded' and the negative associations it brings rather than it being an inaccurate term.

Downs Child. As in "This is our Downs child/baby". That is a big no-no. The woman who spoke with us admitted her husband still says that sometimes, though their daughter with Down syndrome is grown-up and attending beauty school. (I can't actually imagine introducing Lizard Loaf to anyone that way.) I guess the reason this is a problem is because it defines the child by the disability. As it says in all of the literature, a baby is a baby first. And, a person is a person first. I wonder if it would bother me if someone introduced me as their Clumsy friend, or their Non-athletic cousin--defining me by my greatest weaknesses and struggles, rather than my strengths. I think it would. I'm new to this culture, but the shortening of Down Syndrome to Downs doesn't bother me right now, as in 'my son has been diagnosed with Downs' instead of writing the whole thing out every time.

There are a few attitudes that have also startled me, all with surprising religious roots. These didn't come from the support group information, and I don't know if these attitudes are common in this new culture or isolated to the people expressing them, or perhaps common among Mormons, and less so among the general population. I hope I don't offend anyone by highlighting these.

This comes from the mother of a child with Down Syndrome, relayed through a friend: "It will be interesting when we get to Heaven and we all get Down syndrome because that is how it is to be perfect." Wow. That really took me off guard. It never occurred to me that anyone would think that way. For myself, I tend more towards Urban Tangerine's perspective that this is temporary struggle. In the next life, my son will be made whole. As I understand it, people with Down syndrome tend to be naturally loving. I've heard they are more unconditional in their love, the way our Savior would have us be. Developing charity is vital, but I don't think that is the only part of perfection. I also don't think we are made perfect automatically in the next life. We still have to struggle towards it from wherever we left off in this life.

I've heard this attitude enough that I won't attribute it to any one person. The general idea is that people born with Down Syndrome must have been especially valiant spirits before they came to this life. That's why they were given Down Syndrome and guaranteed salvation. I know that even among my sisters, we don't have a consensus on this point. While I found nothing about this when searching through articles on LDS.org, my personal feeling is that the challenges we receive in this life are not a reflection of God's judgment. It may be that a particular child was given Down Syndrome, or died young, or any number of things that would guarantee his or her salvation, because of this very reason. I believe parents may have inspiration on this point for their particular child, but I don't think we can know universally why these sorts of challenges occur.

In conjunction with the previous attitude, I've also found prevalent the idea that parents of a child with Down Syndrome are superior. Again, I think the challenges we receive in this life are not a reflection of God's judgment, but that we will be judged after the trial. I feel very strongly that Heavenly Father knows my family, including my son, and our situation. In fact, over two years ago, I had the impression that I was going to have twins, that one would be a boy, one would be a girl, and that the boy would have Down syndrome. But then, I proceeded to have three miscarriages, so I let go of those impressions. They have started to seem relevant again (though still no sign of twins...). I take great comfort in knowing Heavenly father is aware of our situation. We will do our best to provide a loving home for our son, and help him prosper (just as we do for our daughter). But I don't personally feel that receiving this challenge as a parent indicates that I'm 'more righteous'. Neither do I feel that this is bad karma coming back to bite me.

Hello worry & anxiety

2008-06-17T06:08:00.000-07:00

Last night, checking messages, I realized I had missed a call from our geneticist. They have our test results and can meet with us today at 1 p.m.. I just called to confirm the appointment. How do I feel? Hollowed out and off balance. I don't know what they will say. The unknown and unexpected frighten me a little. What kind of Downs will Mermaid have? Any thyroid problems? luekemia? Deep breath. But, later this afternoon we will know and we will start to plant some expectations and that will feel more comfortable, right?

Responding

2008-06-16T22:17:00.000-07:00

I've learned a good lesson in responding. When I sent the 'big news,' I was really anxious to hear back from people within a day or two. This felt HUGE to me and I wanted to share and be heard. Surprisingly, I got the most responses from friends rather than family members. Most of our family still hasn't responded in any way (obviously, some have and we have this lovely blog to chronicle our journey). I learned that it felt really good to be acknowledged and to receive a little encouragement, even just one or two lines. I'm trying to be more responsive to others because of this. One friend of mine has a line at the bottom of her emails; "Love is always the appropriate response." I have found that to be true.

Mermaid's Announcement

2008-06-16T22:10:00.000-07:00

This is what we sent out to our friends and family once we got new info on Mermaid.
(Code names: our daughter, Mermaid; my husband, My Hero)

Hi Everyone,

It's a gorgeous day! Many of you know that we've been concerned that Mermaid may have Downs Syndrome. Today, we had an excellent visit with a pediatric geneticist. Get this name, Kawame Anyane-Yeboa. Wow! Our genetic counselor was Edwin Guzman. That was a little easier to say. Anyway, after filling out our family medical history chart and discussing our concerns about Mermaid, they examined her. She was a total charmer, of course! I've been reading up on this so I was listening for clues. They noted slanted eyes, depressed nasal bridge, tendency to stick out her tongue, soft silky hair (What?! I never read about that sign. I guess that's a benefit), shorter curved pinky and hypotonia (low muscle tone).

Then came the big talk. They said, many of the classic markers for Downs Syndrome are not found in Mermaid and though her muscle tone is on the low end of the spectrum she's actually doing really well (she rolls over, brings her feet to her face, stands and bears her body weight, etc.). She also gurgles and hums to me. She makes signs to me about what noises to make for her (I'm the dolphin, she's the trainer). She smiles, laughs, etc. So.... They ordered a blood test for Downs Syndrome and a "Fish 21" that's industry-speak for checking for Mosiac Downs. They're also running a thyroid check. I didn't really get that part. The upshot is that they feel certain that Mermaid is out of the ordinary. We already knew she was extraordinary. But they're not sure exactly what it is yet, so we're gathering information. It will be 2-3 weeks before we have results and get to discuss them.

I've been learning about this for some time. Sometimes a little paranoia is a good thing. ;) My Hero prefers to wait for facts and then get a life perspective. Once we know what we're dealing with, we'll seek out other families in similar situations and learn from them. He says we'll all get matching T-shirts that say "We're down with Downs!" He's so fantastic and ready to embrace whatever life has in store. I'm sure we'll meet several medical professionals along the way as well.

For now, our family is pretty much the same. It's a relief to know a little more and digest this new information incrementally. I know Mermaid is important to you and I wanted you to have a chance to digest the information incrementally, too. Sure, we wish Mermaid laughed more often and had stronger muscles, but hey, she's got that soft, silky hair ;) We're really so happy to have her in our family and we just couldn't do without her. We feel especially grateful to have enjoyed such a remarkable home birth experience which allowed all of us to fall completely in love with her before worrying about labels and secondary (and I might add, temporary) issues. We have already been so richly blessed by her presence and we're sure the future holds more of the same.

Love,

Us

Our Intro

2008-06-16T21:57:00.000-07:00

I'm happy SumGreater created this blog. She's always so supportive and definitely one of those siblings that keeps our family connected. Thanks SumGreater.

Our family had four sisters and there came a time when we all wore the same size of socks. So, our brilliant mother decided to keep all of the socks in a box and we could just share. As the oldest daughter, I was uncertain what to do when it came time to leave for college. Which socks were mine? How many pairs should I take with me? Will the others be upset if I take the "good" pairs? At any rate, I think it hasn't been since the sock-box that I've shared something with my sisters, so this will be fun.

There is something that I don't share with my sisters and that is the genetic anomaly called translocation. I was tested in 2004 and given and 80% chance of having it, too. I don't have it. Nevertheless, after we welcomed our sweet baby number five and after some time and some worry we finally visited a geneticist. We're still waiting for the blood work, but they've let us know she's "abnormal." That was actually a relief because I could stop worrying if something was wrong. Yes! Something was wrong and now some of the nation's top professionals are going to help us out moving forward.

Stay tuned.

Panic 3.0

2008-06-15T01:09:00.001-07:00

There was the panic of thinking I'd never have more than one child. Then came the panic of wondering if I could handle more than one child. (I don't think I ever came to terms with that--just forgot about it for a while.) Tonight, a new level of panic hit...

BACK STORY:

Her Nibs likes me to put her to bed when I can, since I often work 4 nights a week. Tonight, I was off, so I helped her shower off the day's dirt (her first shower 'by herself'!), read her stories and brushed her teeth. The teeth. I know this is important, but it is by far the most dreaded portion of the bedtime routine. It should take 2 minutes-maybe 5 tops. With Her Nibs, between spitting extra times, pausing to check in the mirror, wiping her mouth as we go along instead of just at the end, or just breaking into dance, it rarely happens in under 10. Tonight, as usual I'm afraid, I found myself saying "Focus! Let's just finish brushing!" "No. You have to keep your mouth OPEN." "Open AND facing me, please." "Just stop moving so we can get this done." There was definitely a "RINSE! DON'T DRINK! You're not suppose to swallow toothpaste, honey." And there may very well have been more. What's worse, I know my hurry and frustration come from totally selfish motivations like "I want you in bed as soon as possible so that I can be 'off the clock'" instead of any genuine concern for her well-being.

Her Nibs is so very loving, and also extremely bright and creative. If I don't have enough patience for her, how can I ever have the patience I need for a son who will, in all likely-hood, move even slower than her?

The News

2008-06-11T18:51:00.000-07:00

I got the news over the phone from a genetic counselor. It had been 16 days since my amnio. I was starting wonder if they forgot to do anything with all that amniotic fluid they took so painfully from my belly, so I'd been calling throughout the day to see if the results were in. As it turned out, they weren't stalling. The genetic counselor had just called the lab because she felt the results were taking a long time, too. The test had actually only been completed the night before. I was expecting mostly good news, like we'd received for my daughter (codename: Her Nibs). Her Nibs has a translocation, but it is balanced, and she is otherwise healthy. When the genetic counselor said she had the results and that they weren't good, I still didn't completely understand. Then she explained that our boy (current codename: Lizard Loaf) has the translocation and an extra chromosome 21. "He is predicted to have Down Syndrome," she said. I know I wasn't on the phone for very long after that, and I was grateful Her Nibs was distracted by a movie, or the Disney Channel or something. Right then, I only kept crying for a few minutes. I pulled myself together until my husband came home, when I gave him the news. That's when the wording started to seem significant. "Predicted." Could Down Syndrome be a prediction like the weather? Slightly translocated with a chance of Downs? Everyone was gone for the night, so clarifications would have to wait nearly 24 hours. Unfortunately, 'predicted' was just a misguided attempt to soften the blow. Lizard Loaf does have Down Syndrome. This is not a false positive. These are the correct test results, and lots of other terrifying things like pediatric cardiologist and echo-cardiogram.

I was devastated. Thank goodness the Celtics won that night, or it would have really been a bad day.

So, I've been processing this news for nearly a week now. Some days I cry a lot, but mostly I'm on a positive path. But now, how do I tell everyone else? It was only 3 weeks ago that we announced to our world-wide network of friends that I was pregnant and expecting a boy. That part really hasn't changed, but still: things aren't the same. I did multiple Google searches on variations of "announcing your child has down syndrome," trying to unearth some existing etiquette or guideline. Nothing. Maybe we shouldn't say anything at all, and just throw it in with the birth announcement when Lizard Loaf actually arrives? I'd already read too much on BeNotAfriad.net to really do that. When we are rejoicing in the blessing of another very long awaited child, the last thing I want to hear is "I am so, so sorry." But of course, I did have some guidelines. Two of my sisters had already sent similar messages. After working on the email for days now, I finally opted for quoting one of my sisters for a portion of the email. I'm actually still not done composing the message, but I got it far enough along to send it to a few important people (like my mother) who I felt should have the news soon. This is basically what I sent:

We already knew it was a boy; now we know something more. We recently learned that our baby boy, due in October, has Down Syndrome. It is hard news to hear. There is no question that this will be a challenging journey for our family, but we are letting go of generic hopes and embracing new possibilities. As our expectations for our son grow from obscure to intimate, our love for him deepens.
As we do with every new adventure we face, we're scouring the web to learn all we can. We've discovered some amazing resources, both for us and our son. (Sometimes, the Internet can be so full of love.) There is a huge range of health and ability among people with Down Syndrome, and it will likely be years before we can tell where our son is on that spectrum. As my sister said recently, "It's a relief to know a little more and digest this new information incrementally. ... I wanted you to have a chance to digest the information incrementally, too."
Several years ago, SumGreater, gave birth to a little girl with Down Syndrome. Due to complications from the pregnancy, her daughter passed away after only 9 days. On the same day we learned 'something more' about our son, we found out that one of my other sister's 6-month old daughter may also have a form of Down Syndrome. Would you ever have believed three sisters in one family with children that have Down Syndrome? A circumstance like that deserves its own blog: http://imdownwithdowns.blogspot.com/

Getting Started

2008-06-10T09:43:00.000-07:00

Several years ago, I gave birth to a very sweet baby girl. We learned the day she was born that she probably had Down Syndrome. Five days later, we knew for sure she did. She was so frail because of complications from my pregnancy that she died 9 days after birth. So, the fact that she had Down Syndrome went into our mental periphery.
We tried to teach our son sign language, telling him that if his sister had lived, it would've helped her communicate better. Whenever I see a person with mental challenges or Down Syndrome in particular, I think of our little girl and want to be extra kind--how I would have wanted someone to treat my daughter.
That was where things stood until last week.
In one week, two of my sisters each learned that one of their children has Down Syndrome. My older sister found out her 6 month old daughter likely has what is called Mosaic Down Syndrome. My younger sister learned through amniocentesis that the baby boy she is carrying also has Down Syndrome.
They are both going through periods of altered expectations and emotional adjustments. And they both love their babies very much.
My older sister's husband suggested the family get matching shirts that say, "I'm down with Downs" and I liked the idea so much, I set up this blog using that phrase. My sisters are both authors on this site and will be chronicling their individual journeys in this shared experience.