Monday, December 17, 2012

Do you see what I see?

Just a little early Christmas present... (Don't mind the shaky camera/bad quality of my iPhone--and the filmographer. You'll get the idea.)

What?!? Can you believe it? He is so amazing!!!!

Now to be fair, he still crawls/hops the majority of the time, but he is standing and taking steps more and more often. I am so. flipping. EXCITED!

You can get back to your day now.

Friday, December 14, 2012

Does this mean he's hypo-allergenic?

It's just another freezing snowy frosty mildly chilly December day here in Northeast Ohio, the perfect time for yet another appointment for my little Roo. (I think I'm going to start scheduling next year's appointments NOW so they don't all end up in December again...!) Today's field trip: Dermatologist.

As you probably know, about 6 months ago we started to notice some patchy baldness on Roo's head. At first we thought it was just one spot, but it spread and spread, until now he looks like this...
I know, right?! It's like God said, "How could this kid possibly be any cuter? I know, I'll make him BALD!" I'm with you--it's totally adorable. It makes him even more of a rock star than he already was.

Still, I was concerned that the hair loss pointed to a deeper issue, so several months ago I took him to our pediatrician to get it checked out. After a rather disappointing consultation with her (I'm not going to get into it here, but let's just say I'm exploring my pediatrician options...), we determined that it was not a thyroid issue and that it was time to talk to a different doctor. Our pediatrician recommended we see a dermatologist, so I made some calls and got us an appointment.

So here's a funny story... Typically when Roo needs to see a specialist, I call our local Children's Hospital and they have someone on-site. For dermatology, though, they have a variety of local doctors they recommend (none on-site), so I just wrote down all of the phone numbers and started making phone calls. As it turns out, I did this on a Friday, and apparently dermatologists don't tend to work on Fridays. I didn't realize that this was a "thing", but I called 6 different offices and only one was open! So I scheduled an appointment, even though it was over 6 weeks away. (Yep, I had to schedule today's appointment back in October! Who knew dermatologists were in such high demand?) The receptionist told me that they would send me a registration packet a few days before our appointment, so I jotted a very vague "Dermatology - 10 AM" on today's date on the calendar and left it at that.

Fast-forward to yesterday, when I realized that A-I never got a registration packet and B-I had no idea which dermatologist's office I had actually scheduled an appointment with! So this morning I was frantically calling every doctor on the list from our Children's Hospital web site. (And wouldn't you know, this time FOUR of them were open on Friday...!) I finally found our winner, and Roo and I set off for the visit.

As I mentioned, most of our visits take place at the hospital--or at one of the two connected medical arts buildings on the same campus. I didn't realize how spoiled I have become with their facilities and quality of care, but I will not take it for granted again. This office building was probably built AND last updated in approximately 1952. It was in a crummy section of town, it was run-down, it was... just not what I expected. But Roo seemed to thoroughly enjoy himself, and spent our FORTY-FIVE MINUTES in the waiting room entertaining everyone within ear shot with his "singing" and laughter. (I'm so thankful for that. Trying to contain a two-year-old to a small space with no food or toys for a long period of time can quickly take a turn in a bad, bad direction, but he was so good!)

Sooooo... after all of this build-up... after months of wondering, weeks of waiting for the appointment, many minutes in the waiting room... we had approximately 1.5 minutes with the doctor. BUT he confirmed that Roo has exactly what I suspected from the beginning: a condition known as Alopecia Areata. This basically means that his body has, for some reason, started making antibodies to fight hair follicles. His hair may regrow, it may not. He It might grow back for good, or he could have several more episodes throughout his life. Little is really known about it. But here's the good news: it's JUST hair loss. There's no underlying health issue, no other side effects, no related concerns. He's just bald & beautiful.

The doctor did perscribe two ointments to stimulate hair growth. So far I have not filled them, and I'm not sure if I will. First, because all treatments associated with alopecia are rather... hit or miss. There's no real guarantee that they will work, and they can't prevent future outbreaks. Second, any time you are working with medications, you're looking at possible side effects. One of the two ointments we would use is a steroid. It's a mild one, but still. We're just talking about hair here, folks. I don't know how much I want to subject my 24-pound 2-year-old to steroids so that I can comb his hair.

And if the ointments don't work? Well, the next step is to create an allergy in his body to something, which will theoretically stimulate the immune system, which could then stimulate hair growth. Again... I'm not giving my kid an allergy so that he can have hair. It's just not gonna happen.

So... I feel like all of our appointments thus far have been rather anti-climactic, but I'll tell you something I have learned over the past 3 years: Anti-climactic is pretty darn great. I'll take boring news over bad news any day.

And if you know anyone who loves kids but has that pesky baby allergy, let them know that we have an American Hairless right here... ;-)

Tuesday, December 11, 2012

Appointments, part 2!

Yep, December is the month of Christmas, family, and appointments for Roo. We kicked it off Friday with his annual cardiology check-up, and yesterday we followed it up with our first meeting with the school district.

No, time hasn't gone that fast. Roo isn't ready for kindergarten just yet. :-) But here's how it works (at least in the state of Ohio): from birth to age 3, children with disabilities get services through the county, typically through the Board of Developmental Disabilities. This is called Early Intervention. In our county, Roo received home-based services--the therapists and Early Intervention Specialist came to our house for all of his appointments--until age 2. (We actually pushed it a few months past that.) Then this fall he started attending a toddler class at the county DD school, which is going splendidly. (I have been planning an update on that one for a while. I'll get there...!)

But once he turns 3, his services fall under the purview of our local public school system. It is actually still administered by the county until he's in kindergarten, but it is within the schools... yeah, it's a little less than crystal clear. But a transition will take place at age 3, and 90 days prior to his third birthday, we need to start meeting to plan that transition. And since the 90-day mark happens during Christmas break, we had to schedule it a little early.

So yesterday morning we met with our Service Coordinator (She is with the Department of Jobs & Family Services, and she helps to keep track of Joey's various services and medical records. She is also our Help Me Grow provider, a program that I did with both Lamb and Monkey, so I have known her for seven years, and I ADORE her. I am SO INCREDIBLY SAD that we will not be working with her, I'm tempted to have another baby so that we can do Help Me Grow with Becki again. :-) ), the Director of Special Services for our school system, and psychologist who works for the county.

The goal of this particular meeting was not so much to set goals or create his plan. This was more of an introductory meeting, where they talked to us a little about the process, and they asked us a lot of questions about Roo. The ladies were very nice, and I know one of the therapists he will be working with, so I feel really good about how it all went.

So, similarly to the cardiology appointment, I don't feel like I have a big update, but I DO feel like it was a positive outcome.

One thing we DID discuss, though: Technically he is supposed to switch from his current school to the county-run preschool (located in our elementary school) right at his third birthday. But in general, students who turn three after Spring Break are able to stay at the DD school for the remainder of the school year, then move to the county preschool in the fall. Well... Roo's birthday is DURING Spring Break. So we are really hoping to keep him where he is until fall, but we have to wait to hear from the director of the DD school about whether or not she is able to keep him there.

So that was our meeting in a nutshell! We'll go back in a month to schedule his evaluations with his new therapists, then we'll meet again in February to actually go over his evaluations and set his goals. 

Two appointments down! Next up, dermatology.

Friday, December 7, 2012


If you "like" me on Facebook, you know that Roo has a big month of appointments this December. Today we kicked it off with a trip to the cardiologist.

And again, if you follow me on Facebook, you know that this morning did not get off to a good start. In fact, my morning began with Lamb crying that she didn't want to go to school because of two separate "playground dramas" that came up yesterday. (And I have to say, nothing makes my head want to explode like 7-year-old drama.) And then Mr. Fantastic and I had a bit of a fight, the kind that couldhave easily been resolved by an intelligent discussion, but I was too busy being stubborn and defensive to actually talk about it. And Roo wouldn't eat anything for breakfast and I was trying to get everyone to school on time and we have a really busy evening and I was trying to figure out a plan for dinner and determine what errands still needed to be run before tonight and... sigh. It was stressful.

Finally, I had the big kids on the bus, Roo in the van, and I was running out the door in any attempt to do some of my errands before the (9:30) appointment, when Mr. Fantastic called... to remind me that all of the carpets in the house were getting cleaned this morning! I honestly thought I was going to throw up! So I grabbed Roo, put him in his crib, and RAN through the house, picking up the toys and other small items on the floor and THROWING them onto beds, couches, whatever to get them out of the way. It was a mad dash, and I am thankful that no one has that on tape.

I tell you all that just to say... My heart & mind weren't really where I wanted them to be in preparing for this doctor's visit when I left my house this morning. Fortunately, I got about 20 minutes of Quality Jesus Time in during the drive to the hospital, and that was extremely helpful. We didn't get to run any early errands, but we DID get to the appointment on time, and I was much calmer when we got there.

As for the visit itself, it went very well. In fact, we were out of there in less than 30 minutes! (Our cardiology appointments are normally about 2 hours.) We have seen a lot of doctors with Roo, and I have to say, I LOVE our cardiologist. We only see him annually, so I know that he doesn't remember us from appointment to appointment, but he is always professional but kind, talks to Roo, he's PREPARED and AWARE of Roo's chart/history before he comes in, he asks pertinent and intelligent questions, and explains things thoroughly without being condescending. And he's very considerate of our time and sanity levels. Does it get any better than that?

ANYWAY, after he went over Roo's history with me a bit (he has an Atrial Septal Defect, and Ventricular Septal Defect, and a cleft mitral valve), he listened to his heart for quite a while with the stethoscope. And because his defects are minor, and because he needs to be a little bit older (about 5 years old) before they can do any repairs anyway... AND because getting him to lay on a table for an echocardiogram would likely be a disaster... he recommended that we wait until next year for another echo. I was THRILLED. Mr. Fantastic and I were just talking this morning about whether or not the echo was even necessary, and it was great to hear it confirmed from the doctor without my having to ask.

So I don't feel like I have any major updates, but all in all it was a good appointment. Roo's heart issues are still present but minor, and we'll head back to cardiology in a year. Now we can just enjoy our ultra-busy weekend, and prepare for our first "transition planning" meeting with the school district on Monday morning.

Have a great weekend!

Friday, November 30, 2012

Belated Thanksgiving

It has been quite a week or so here at the zoo. While many of the events over the last 7-10 days are not what I would have planned, I truly am thankful in so many ways. Let me explain...

  • I am thankful that Lamb only missed two days of school since she was sick on a holiday week, even though she ran a fever of 101 or higher (up to 103.8) for 7 days straight.
  • I am thankful that we got to spend a quiet Thanksgiving together as a family of five, even though it meant missing Thanksgiving with my parents, my brothers and their families, and the rest of my side.
  • I am thankful for my mom, who set aside portions of the entire Thanksgiving meal, so that my family could enjoy a Thanksgiving feast despite the fact that we had to stay home and miss the festivities.
  • I am thankful for my husband, who picked up our Thanksgiving dinner from my parents' house and who took time off  of work to help me with sick kiddos--and helped when I got sick, too.
  • I am thankful for a great team in my moms' group, who stepped in at the last minute and handled our meeting this week, when I couldn't come (again) because of a sick kiddo (again).
  • I am thankful for modern medicine, on which my family has relied heavily this week. Lamb, Roo, and I have all been in for appointments, and my dad was in the hospital earlier this week too.
  • I am thankful for my friends, those who have been listening to me vent about germs and who have helped me work through some of the other issues and decisions I'm facing right now.
  • And more than anything, this week I am THANKFUL to have my dad with us, after he suffered a heart attack on Monday afternoon. I am incredibly thankful that it was minor, that he had the surgery he needed to have, and that he is home and taking it easy (supposedly). And I am hopeful to have him around for many Thanksgivings to come.
Happy (belated) Thankgiving. We are so incredibly blessed--sometimes we just don't realize how much so until we are challenaged a bit.

Thursday, November 15, 2012


I have started and restarted this post at least 20 times now. I am literally tongue-tied. There is no way to get all creative and witty and... bloggy with this post, so I'm just going to say it...


What?!? I was sitting right there watching him, and I still can't quite make sense of what I saw!

After being a grump the entire day, I gave Roo an early bath with the intention of then getting him to bed early. But then I had to wait for Monkey to change and brush his teeth and all that, since the boys share a room; and while I was waiting, Roo got hit with a major surge of energy. He started hopping and spinning and laughing and... just plain being wild.

And he started hopping FAST, like he was a charging (hopping) bull and just suddenly started crawling on his feet and hands, and then just stood up (while still moving) and WALKED ACROSS THE ROOM! And these were not slow, uncertain, toddling steps. He was practically running--but he was totally in control. It was AMAZING!


And then as quickly as he started, he stopped. He dropped back to his knees, laughing the entire time. And for the rest of the night, every time I tried to get him on his feet, he'd go completely limp.

Have I mentioned that he is, without a doubt, my most strong-willed child?

But I just can't get over those steps, that scene. He WALKED. For real.

This just furthers my belief, friends, that he is capable of doing so many things, but is too darn stubborn to give in and do them.

Have I mentioned that my baby boy WALKED tonight?

Monday, November 5, 2012

Halloween Fun, and not so fun...

If you "like" me on Facebook (and again I will ask, "If not, why not?"), you know that I was less than enthused about going trick-or-treating with my kids on Friday. Why?, you ask. Well, let me tell you what our Halloween experience has been this year...

First, there was the issue of Roo's costume. The child refuses to wear anything on his head. He is also stroller-bound while we're out trolling for candy, so I wanted something that wasn't going to be too bulky. A friend suggested that I just turn his stroller into a bulldozer and let him be the "driver", and I thought that seemed like a fabulous idea. Until I actually tried to do it. Let's just say... it didn't work out. And we're going to leave it at that.

Second, Halloween celebration #1. Ever since Lamb was a year old, we have gone to "Boo at the Zoo", a non-scary trick-or-treat event at our local zoo. And for the past 3 or 4 or 5 years, we've gone with another family, some dear friends who have kids about the same ages as Lamb and Monkey. So this year we bought our tickets and planned an evening of zoo fun followed by dinner. I hadn't really figured out what to do for Roo after the bulldozer-costume-fail, but then I remembered that he has a pair of Superman PJ's (complete with cape!), so Superman he would be! I got him dressed set him down to play, and went to help Lamb with her hair... and then Monkey ran in and announced, "Roo just threw up in the hall!"

Yep, there was puke all over his Superman pajamas--I mean, costume. And on his hands. And on the floor. Fabulous. I cleaned him up and called my parents, who had spent the day with him while I was at the office. They assured me that he had been fine all day, although my mom mentioned that he hadn't wanted his milk much after naptime. Hmmmm..., I thought, his puke did smell an awful lot like spoiled milk. I bet his milk was bad, and that's why he didn't want any more--and why he got sick. Reassured by this logic, and by the fact that he seemed perfectly happy (and didn't have a fever), I finished getting the big kids ready, all the while stressing out about Plan C for the little guy's costume. And suddenly, I remembered: I had come across the top half of a monkey costume in some hand-me-downs from my brother... and Roo had a pair of brown sweats that would work great for the bottom half. He likely wouldn't wear it with the hood up, which would pretty much completely nullify the costume, but... it was what I had. So I went with it.

Finally, we pulled into the zoo, listening to the oh-so-pleasant droning of Lamb complaining that it was too cold and too rainy and it was going to be miserable and blah, blah, blah. (And that last part isn't just filler--she has recently started saying, "blah, blah, blah." It drives me nuts. It makes me see red. It makes me want to hit something. But that's another story for another day.) We gathered up the troops, headed toward the entrance to meet our friends... and suddenly Roo started puking buckets. All over his daddy. And we found ourselves turning around and heading right back to our van. And Miss Lamb barely had time to stop whining about how miserable it was going to be before she could start crying about how much she wanted to stay. Poor girl--it's tough being seven. And so, our first Halloween event... wasn't.

Suffice it to say, Roo hadn't had bad milk. He had a stomach bug. A really yucky one, that lasted until the following Tuesday.

And then on Wednesday, everyone else got it. Mr. Fantastic woke up with it, I came down with it right after lunch, Lamb got off the bus with it, and Monkey was down before dinner time. Fab.u.lous.

That Friday was supposed to be the fall party day for the big kids at school. (Not a Halloween party, mind you. Costumes are not welcome at our school. But still, a party. And they wanted to be there.) I was signed up to provide the craft for Monkey's class, and I planned to at least swing by Lamb's class as well. Instead, I mustered up all my strength from my sick and I'd-rather-be-dead body, put the craft supplies together, and dropped them off to Monkey's teacher... then went back home, where my kiddos and I spent their party day watching "Phineas & Ferb" and taking naps. Poor kids. Our second Halloween celebration, gone.

And then, there came trick-or-treating. Our town is pretty rural, and I don't love the idea of driving my kids from house to house--it just doesn't have the right feel. So we are fortunate to have a lovely lady in our lives who invites us to her neighborhood to trick-or-treat every year. Her development has their own time, separate from the township--always on Halloween day, always in the evening. But this year, Superstorm Sandy made herself known Halloween week, leaving us cold and wet at the very least, and leaving some in our area without power. Our friend's neighborhood decided to rescshedule their trick-or-treating for Friday, November 2. My poor kids--another Halloween plan foiled.

And then do you know what happened? It was November. Halloween is over. I am healthy, but exhausted. I would like to just fall into bed and sleep until Thanksgiving and forget that October ever happened. But no... no, NOW it is time to don the costumes and beg for candy.

I was so over that.

BUT I couldn't deny my kids the joy of trick-or-treating. They really wanted one chance to celebrate this darn holiday. And Monkey and I had even made his costume this year. No, they couldn't miss it, and I wouldn't want them to. So shortly after they got home from school, we got started on their transformations...

Roo consented to being a monkey, hood and all...

Lamb became a beautiful fairy...

And Monkey... oh, Monkey... my super-cool, homemade OCTOPUS...

Is that fun or what?!? I loved making that costume. It is super-simple and would not hold up long-term, but it was so much fun to make, and a BIG hit both with Monkey and the families we saw while trick-or-treating.

And so we headed out... and we had a GREAT night! It was cold, but still--no chilly winds blowing through you. It was so so so nice. And the kids, they had the BEST time I have ever seen them have. They RAN from house to house at top speed, and they said "thank you" and they giggled and they squealed about how heavy their treat bags were and--it was wonderful. A perfect night.

And just to top it all off...
...a little popcorn... and some hot chocolate with marshmallows AND whipped cream...

...AND Daddy reading us all some "Tom Sawyer" before bed.

It couldn't have been a more perfect night.

Happy Halloween... in November...

Friday, October 12, 2012

Of bluebirds and pigeons

I know we are all familiar with the Bluebird of Happiness, that elusive creature that conjures up images of Cinderella and Snow White singing with nature. It's the idea of a magical happiness that is as beautiful as a bluebird sitting on your shoulder.

Cue the contended sigh.

Recently, though, I was introduced to the bluebird's lesser known, more somber cousin: the Pigeon of Discontent. According to Gretchen Rubin, author of The Happiness Project and a regular contributor to Good Housekeeping magazine, "A Pigeon of Discontent isn't a major happiness challenge, but rather, an ordinary problem that has settled in to roost." Yep, that sounds about right.

Now, Gretchen and I have one seemingly semantic yet actually important difference: I don't really think that happiness should be our ultimate goal. I am aiming for contentment, something that comes from trusting and resting in the Lord; not happiness, a fleeting emotion that is self-centered and relies on my circumstances. STILL, I have found her book and blog to be interesting and to have some good points, not the least of which is that dreaded pigeon.

That pigeon has been pecking at me lately. It comes at me in the form of a whining child, a scheduling mix-up with my husband, a hungry baby who refuses to eat his favorite food. Small things. Mundane, daily things. Peck, peck, peck.

It baffles me, this pigeon. God has been doing some major work on my heart lately. He is leading me somewhere, and I am excited (and anxious and a little bit scared) to see where we are going. I have been faithfully trusting Him, making some sacrifices, changing some habits, knowing that He has a plan. I think big changes are coming, though I don't know exactly what they are. And some of the sacrifices and changes He has called me to have been difficult, but I have done them gladly.

So can someone explain to me why I can handle the big things with no problem, but I can't seem to escape this darn pigeon? How can I devote my life to God, hope to use my LIFE to serve Him... and then get completely derailed when my 7-year-old comes home with a tummyache? How can I be willing to travel around the world for Him when I cried at the local McDonald's a few days ago?

Three words: Chinese water torture. Drip, drip, drip. It's not the size of the issues, it's the sheer number, the constant pestering. Drip, drip, drip. They wear us down.

As I have been writing, a verse has been running through my mind: "Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up." (Galatians 6:9) Doing good is wearying--really? Shouldn't it feel GREAT? In a perfect world, yes. In a fallen world, we have the pigeon of discontent. He is there to distract us, to wear us down, to take our focus off of the big picture so that we focus on the little discontentments. He is there to make us weary and ineffective.

I wish I could summarize this with "The 5 Ways to Shoo Away the Pigeon of Discontent", but I don't have 'em, friends. I am right in the thick of it. But this one thing I know: I keep coming back to one of my favorite verses, "Praise be to the Lord, to God our Savior, who daily bears our burdens." (Psalm 68:19) It doesn't say He bears the BIG burdens or He picks them up when He knows we have a lot going on or even when HE doesn't have too much going on. He bears our burdens EVERY. DAY. Big and small, important and mundane. We can hand them over.

Sometimes, on days when the Pigeon has gotten the best of me, and I collapse into bed feeling defeated, I picture myself staggering up to Jesus carrying a heavy sack. I drop it at His feet with a thud. He picks it up easily, puts His hand on my shoulder, and says, "I've got this. Don't worry."

Come to think of it, there's another verse that talks about being weary...

"Come to me, all you who are weary and heavy laden, and I will give you rest." (Matthew 11:28)

Friday, October 5, 2012

Off Topic: Signs

During my lovely walk yesterday that inspired this post, I also encountered a sign that left me laughing.

Have you ever seen the sign, "We don't swim in your toilet, so please don't pee in our pool"?

Well, our local park system has taken that to a whole new level...

Apparently, the "Posted: No Swimming" sign just wasn't effective!


Thursday, October 4, 2012

Down Syndrome Awareness Month: What's it like?

"I just don't know how you do it!"

I hear this a lot, and it used to make my blood boil. (To be fair, I know I've said it myself in the past, so I know it's well-intentioned. From now on, though, I will save this exclamation for people who guess my card and pull rabbits out of hats.) I'd smile and say something witty like, "Well, I just do it one day at a time." But inside I'd be thinking, "What choice do you think I have? I just do what has to be done!"

I've realized, though, that at the heart of this I-don't-know-what-else-to-say statement is a very sincere but very awkward question: What's it like to have a child with special needs?

It would be a hard question to enunciate face-to-face, but it's a fair one. And now, during Down Syndrome Awareness Month, I think it's a good question to answer. So here goes...

From the minute you find out your child has special needs, you are on a whole new path--one that you have never experienced before...

...and you may even feel walled in, like you have no choice but to start walking.

So you lace up your tennis shoes...
...and embark on the journey.

The path seems anything but smooth...

...and you wonder if you can make it.

It seems like an insurmountable distance for one person to cover...

...and at times it's so hard to traverse that you wonder if you're the only one who has ever walked this path...

At other times, you see people zooming past you...

...and you think, Wait a second, is there some sort of fast track I'm missing? How can they do it so quickly and so well? Where's MY bicycle?

But you keep going.

And just when you think you can't take another step... find provisions...

...and rest.

And suddenly, your perspective...
...begins to change...

...and you can see the beauty beyond the rocky areas.

You begin to relax and take it in...

...and you see that the very rocks that can trip you up can also make for a beautiful river if you flow around them rather than try to trample over them.

So what's it like having a child with special needs?

Well, my friends... it's a walk in the park.

Wednesday, October 3, 2012

Are you aware?

It's that time again... October is Down Syndrome Awareness Month! Yay! Just one more excuse for me to shamelessly show off my sweet baby boy.
Me & Roo on vacation this summer
Now, in blogging there is a rule that you shouldn't ask your readers for input if you don't typically get a lot of comments. But today I am breaking that rule. Today I have a question for you, and I would love for you to respond here in the comments, in a private e-mail, on Facebook--however you're comfortable.

Here's what I want to know: What do YOU want to know? The goal of the DS community this month is to make the general public more aware, obviously. So if you don't have a child with Down's, or if you have a new little one and you still have questions, what do you want to know about Down's? About having a child with Down's? About our little Roo? Ask me anything.

Go! :-)

Thursday, September 27, 2012

Improved--or maybe just Improv...

My day did make a comeback yesterday. By 3:00, not only had I done the basics (put the groceries away, cleaned up the kitchen, made lunch, cleaned up the kitchen again, etc), but I had spent a long time just playing with Roo (yay!), made a big pot of chili (which I later enjoyed with Fritos), folded two loads of laundry, and put together a delicious baked apple treat for my big kids to have as their after-school snack. AND I did it with a good attitude--Mr. Fantastic even mentioned how happy I sounded when he called. (Should it worry me that he takes notice when I sound happy? Is it that rare?)

And if that weren't enough, I had Monkey's antics to keep me giggling in the afternoon and evening...

Monkey: "If you see me wear a black belt to school tomorrow, that's just because it's my secret agent belt. I wear it when I'm on a secret mission."
Me: "Wow! What's your mission?"
Monkey: "To figure out why so-and-so keeps chasing us on the playground at recess. First he chases me, then he starts chasing my friend."
Me: "Does that bother you?"
Monkey: "It's so much fun!!! Except that I don't really like it."
Me: "Oh. Well, you know, if you don't run, he can't chase you."
Monkey: "Yeah. But I always run."
(And yes, he DID wear his black belt--and sunglasses--to school today so that he could be a secret agent.)

Monkey (after church last night): "Lamb! Guess what! I earned three wood coins tonight. And if I earn FIVE, I get a prize. And if I earn SIX, I have to give one back and THEN I get a prize! So I want to earn SIX!"
Lamb: "What's the prize?"
Monkey: "Are you ready for this????? It's a WOODY BAG! Can you believe it?!?"
Lamb: "What's a Woody Bag?"
Monkey: "I DON'T KNOW!!!!"

Wednesday, September 26, 2012

Change of plans

Here is just a sampling of how my morning has gone so far...
  1. Get up early and actually feel AWAKE! Woo-hoo!
  2. Do my Bible study (which has recently been re-energized after a great session with Priscilla Shirer at the True Woman conference). Yay!
  3. Make a complete (though somewhat hurried) meal plan for the week, including boneless skinless chicken breasts, long-grain rice, salads, healthy snacks, etc. I'm on a roll!
  4. Get to the grocery store and realize that my list is at home.
  5. Come home with bratwurst and Fritos.
Hmmmmm... Somewhere in there, it seems like we had a breakdown of sorts...

Can we call it "mental health food"?

Tuesday, September 18, 2012

Thank You

Oh friends, I just cannot thank you enough. You have shown such wonderful support and given such great suggestions regarding my prayer requests for Roo last week. Thank you, thank you, thank you. For some reason I can't seem to reply to your comments, so I just wanted to give you all a mini-update.

First, his hair. We actually DID get his thyroid checked (along with a few other things). We are supposed to have this bloodwork done annually anyway, so with his hair loss it seemed like a good time. Fortunately everything came back perfect, although that still doesn't give us any answers on his hair loss. Our pediatrician also tested for ringworm, which came back negative. I am trying to start him on a multivitamin, but I haven't had much luck yet. (Have you tried the liquid vitamins? Yuck!) Also, it is the time of year when we go for all of Roo's annual appointments (cardiology, audiology, orthopedics, and maybe optometry), so we will likely add 2 more appointments into the mix--one to a dermatologist, and one to a Down syndrome clinic at our local Children's hospital. We are hopeful to get some answers through one of these avenues!

Second, walking. His progress is slow, but he IS progressing. Going to school has been a good thing for him. He is becoming more comfortable with using his walker. But he is so unbelievably stubborn and strong-willed. I have been completely taken off guard by this. After all, "everyone" knows that people with Down's are sweet and loving and friendly, etc, etc, etc, and I guess in my mind I thought that also meant "compliant." I was so, so wrong. So as with many things, I am not sure how much he lacks in ability and how much he lacks in desire. Oh this boy.

So thank you again. And please keep them coming! I am heading out of town for a few days, but can't wait to talk to you more when I get home!

Monday, September 10, 2012


From time to time, I try to ask myself a few questions: Why do I write? What is the goal of this blog? Is it fulfilling a purpose?

It's hard to compare this little corner of the blogosphere with such giants as Enjoying the Small Things and A Perfect Lily. Kelle and Patti are both amazing women, and they are accomplishing such fantastic things for the DS community. And those are just two of many wonderful blogs and advocating mamas out there, and I have to wonder... why am I here?

But if you are here, then I am advocating to you, and hopefully I'm encouraging you. My goal is to share life--real life--with you. If you're a mama, especially to a little one with DS, I hope that you can be encouraged in both the good and the bad. That's why I am here: For you. For each person who comes here. To serve.

Today, though, I am going to twist it a little bit. Today I am here for me. Or more specifically, for Roo. Goodness, that sounds so serious. Really, all I'm trying to say is that I would like to make use of my network here to ask for a little prayer for my boy.

As God has taken us on this journey with Roo, I have learned so much about taking a deep breath and letting go of comparisons and expectations. That's not to say that I don't *have* expectations of Roo--and my other kiddos--but just to say that I am learning to work and hope while trusting God for the results and not stressing myself out about them as much.

Still, I have been reminded lately of the power--and the necessity--of prayer. If Lamb comes to me 20 years from now and says, "Ever since I was 3 I have been DREAMING of being an Olympic swimmer. I trusted that you would get me the lessons and training I needed for that, but you never did", I would say, "Why didn't you tell me?" Trust is good, but there needs to be two-way communication. (OK, I know that the metaphor is a little shaky because God DOES know our hearts and our desires, but He still wants us to come to Him... Just... go with it, will you?)

So it's time to pray, and now I am selfishly taking this blog over for today and asking you to join me. There are two specific concerns that have been on my mind for the last several weeks, and I am hoping that you will help me storm the gates of heaven on his behalf.

The first is... well, his hair, I guess. Early this summer, Roo's hair started thinning in spots. I didn't pay too much attention to it at first--in fact, I thought I was imagining it--but it gradually became more and more pronounced. Now he has lost so much he looks like he's got a mohawk--it's nice and thick on top, but he's bald almost all the way around the sides. My concern is NOT for his hair, I am not that vain. But what I want to know is WHY. Why is it falling out? I took him to the pediatrician a few weeks ago and got NO help whatsoever. It is possible that it is an auto-immune disease called alopecia--in this case, it doesn't do anything but cause hair loss, which is fine. I'm concerned, though, about Roo's diet--or more specifically, his staunch refusal to eat anything that resembles fruits, vegetables, or meats--and worried that the hair loss could be indicative of a nutrition deficiency. Or maybe it's something else entirely. I don't know. I want to know. I want to fix it. I want to be sure that there is not a bigger issue under the surface.

Second: movement. Specifically, he's not walking yet. He's 30 months old now, and he cruises furniture and stands independently and will even walk behind a push toy; but he has taken only a couple of independent steps (one each time). At this point I think it has more to do with stubbornness than ability, but the fact remains: he's not walking. At his last PT appointment, his (very kind and not-wanting-to-stress-me-out) therapist mentioned that he is reaching the upper limit of the normal range for kids with Down's. I'm trying not to stress about this, I'm really not. But you have no idea what an impact it would have on my life if I could just get this boy to use his feet once in a while.

So there you have it, friends. Will you pray with me? For me? For Roo?


Friday, September 7, 2012

Firsts, part 4: The one you've been waiting for!

From August 28 to September 4, my heart got exhausted. So many firsts, so many smiles and tears. And the biggest emotions came with the "last first"... Roo's first day of school.

As you may know, I fought to keep Roo from going to school last spring. The way that Early Intervention is set up in our county, the therapists come to our home for visits for the first two years. Once a child turns 2, though, he/she is "supposed" to attend a toddler class at our local DD school, and all of the therapy takes place there. This is not a parent/child class--this is kids only, with the teachers, two mornings a week, including lunch.

This was NOT going to happen last spring.

No way was I sending my 18-pound 2-year-old who couldn't walk or talk. No way did he need that interaction with other two-year-olds more than he needed his time with me (especially since we are at church 1-3 times per week). So his therapists continued to journey to our home through the spring and summer.

BUT, I assured them, once school started in the fall... we would take the school path. Roo could attend classes there once my big kids were in school.

It seemed like a good idea last February. On Tuesday, though, I wasn't so sure. Still, the bus was coming. (The bus!!!) And now my 21-pound 2 1/2-year-old who can't walk and knows just a few words was going off to school.

Check out this big boy!!!

Hanging out with Daddy...

Another first day, another family photo...

I love this shot of Monkey with Nana (my mom)...

Headed to the bus stop! (We live on a small, private road that is too small for busses, so we have to walk out to the "main road" for the kiddos to catch the bus.) Daddy was headed right back to work after the bus came (or so I thought--more on that later), so he drove out to the stop.

Look at that face!

Nana & Papa (my parents) came for every "first day", but this was the first time I got a picture of them all together...

Gram (my mother-in-law) came for all the firsts too! Again, this was my first time grabbing a photo of her with all the kiddos, though...

Here it comes... oh, boy...

Technically, I can just hand him off to the aide at the door, but she was nice enough to let me come on and put him in the car seat.

Look at that big boy, heading off without me!
Yes, if you are wondering, I cried. A lot. And then I cried some more. And then I moved on with my morning. And then I cried some more. For months I have been looking forward to having some time to myself to get things done... but the house just seemed so empty with them all gone!
But the real issue for me was the communication. When my big kids get home from school, the first thing we do is sit down at the counter, have a snack, and talk about their day. As I was loading Roo into the car seat, I realized... he can't tell me about his day. This sucks.
And about the time that I finally got it together and started cleaning the kitchen, the door opened. Mr. Fantastic earned his name once again. He came in with this:

He's a keeper, I tell ya!
And as for the communication, I was touched to find a notebook in Roo's bag with information about his day AND ten pictures of him from the morning! What an unexpected blessing to get a glimpse into his day! We may survive this after all. ;-)
And OK, I DID enjoy the quiet after a while. I just have to remember that on Monday morning as I put him on the bus again.

Firsts, part 3: KINDERGARTEN!

Aaaaaaahhhh, it feels good to be sitting at a "real" computer with a "real" keyboard! Hopefully this time I can give you a little more commentary--not that the adorable photos of my children aren't enough. ;-)

So Lamb started school last Tuesday, then Monkey lost his first tooth that night. (By the way, he got a $2 bill. I hear that our Tooth Fairy is cheap--the national average is $3 per tooth, with some parents giving $20 or more for the first one! Monkey seemed perfectly happy with his $2 bill.) On Wednesday I enjoyed a nice day with my boys, going out to lunch, running some errands, and just hanging out.

Then on Thursday... KINDERGARTEN!!!

Monkey's breakfast request was a little more complicated than Lamb's: homemade waffles with whipped cream, blackberries, and raspberries. Whew!

Look how excited he is!


Instead of saying "cheese", he kept shouting, "FIRST DAY OF KINDERGARTEN!" every time we took a picture! :-)

This time our family photo was less than picture perfect for the opposite reason. Last time it was because he was grumpy, this time it was because he was so darn excited! I love it.

Waiting for the bus...
And this is when I lost it. Look at them holding hands! How can a mom not cry at that?!?

Wednesday, September 5, 2012

Firsts, Part 2: same day, different story

I'm sitting at church, my kiddos are in their Wednesday night programs, I'm all settled into a comfy couch, iPad out, ready to blog... And I realized I left the wireless keyboard sitting at home. Since it is hugely difficult to use blogger with the on-screen keyboard, I'll have to keep it brief tonight. :-(

SOOOOO... On to the next first, if that makes any sense...

After we got Lamb off to school, I took Monkey in for his kindergarten assessment, which ended just in time for us to grab lunch with Lamb--yay! The rest of the day went on as normal, until just before bedtime. I was giving Lamb her piano lesson and Mr. Fantastic was playing Go Fish with Monkey, when I heard, "It fell out! It fell out!!!" And sure enough, Monkey came running over, holding his tooth in his hand! He has been wiggling and wiggling that tooth for weeks--and truth be told, I think he was hoping it would fall out at school, but he was still quite excited. :-)