(Mini) Milestone Alert: Celebrate with me!

I know you have heard me say this before, but celebrating milestones is one of the best parts of this journey because there are just so darn many of them. Parents to typical kids don't realize how easily and quickly their kiddos can do things, and these milestones just pass you all by. But not us. We get downright giddy over every.single.one.

So today we are celebrating.

Today, I fed Roo his lunch. This in itself made me happy because he pulled out his chair and sat down by himself, then I placed a plate (an actual DISH--and he didn't throw it!!!!) in front of him. And on that plate was not just graham crackers and yogurt... but a BANANA. A banana, you guys. Actual, REAL fruit. And he ATE IT. Yesterday he ate TWO of them! What?

Anyway, that's not even why I have called you all here today. So he ate the yogurt and graham crackers and banana (BANANA! OK, sorry...). But here's where the really big thing happened... Without a word, he got up, threw his yogurt container in the trash, put his spoon in the sink, then picked up his plate and put it in the sink, then sat down and said, "Mama? May I be excused, please?"

OH.MY.GOSH!!!!!!!!! I can't even get over this, you guys! He loves to throw things in the trash, but I had no idea that he was that aware of how to clear his spot at the table. And asking to be excused? Full disclosure: I have been working with him on that sentence for weeks, but he has never initiated it or said the full thing by himself. Usually while he is trying to get out of his chair, I put my hand on his knee or shoulder and have him repeat after me, giving him 1-2 words at a time. The awareness of what needed to be done plus the skills to do it plus the words. The beautiful, lovely words all put together in a sentence. And used appropriately. And did I mention that he ate a banana???

So wherever you are and whatever you are doing, go ahead and have a little celebration for us, would you? I know I am getting ready to party it up with a big glass of wine a huge candy bar veggies and hummus. (Gotta love healthy eating... right?...) Three cheers for Roo! (But quiet ones because he's in bed and Mama needs some peace.)

Today

Five years ago today... I had planned a Spring Break Tea Party for Lamb (who was 4 at the time). We had a special, Fancy Nancy-inspired menu...

gem-enhanced silverware...

and friends coming over in their princess-wear finest.

Five years ago today... I still had three weeks left until my due date.

Five years ago today... I decided to get a few last things for Easter baskets. I took my kids to my parents' house before making a quick run to Target... and then my mom noticed (sly detective that she is) that I was having pretty hard contractions about every 7-8 minutes, so she thought maybe she should come with me.

Five years ago today... I woke up looking like this...

(Well, more or less... This was taken about 6 weeks earlier in Vegas... but when your baby comes by surprise, you don't have much time to get those last-minute baby belly shots!)

 

and ended the day like this...

Five years ago today... I had no idea what a wild and crazy and absolutely wonderful ride I was about to take.

 

 

Today... I shake my head at the wonder of it all.

 

 

 

 

 

Today... I thank God that He loves me enough to entrust me with this boy (and his big brother and sister).

 

 

 

 

 

Today... I celebrate 5 years with this incredible boy.

 

 

 

 

Today... Roo has something to tell you.

Happy birthday, Roo! I love you!

State of the Roo Address: What's good, what's bad, what's new, and what's next

OK, my friends, are you sitting down? Take a deep breath and take this in... next week, Roo will be FIVE YEARS OLD! FIVE!!!! I seriously got tears in my eyes as I typed that. Five. I almost said, "I must have slept through a year or two somewhere", but we all know that's not true--I've hardly slept AT ALL in the last 5 (ahem, TEN) years, so I don't know what my excuse is. But I know that it just seems so utterly impossible.

But here we are.

You guys, Roo has grown and changed so very much over the last year, and since I have been especially bad at blogging lately (I just looked back over to my blog history and realized that I was apparently awesome in 2011. That was my big year, I guess. How did I blog so much with a kindergartener, preschooler, and infant? I can't blog like that NOW with everyone in school 3-4 days per week!), I would like to bring you all up to speed on this amazing little boy.

What's Good

• While Roo continues to be stubborn and ornery, his listening and understanding have improved DRAMATICALLY over the last year. Even simple commands like "Go get your coat!" or "Come here, Buddy!" would be met with a blank stare this time last year. Now he "gets" just about everything I ask him to do. Now, whether or not he chooses to do it... that's a different story. But he's getting better at that too.
• I absolutely love his school. He currently attends a county-run preschool that is housed in our county DD school. He is incredibly loved there. I'm not in the school very often (he rides the bus), but when I am, I am overwhelmed at the people who call out his name as we walk down the hall.
• You guys, a little less than five years ago, I mentally circled this Spring on the calendar. THIS is when he was supposed to have heart surgery to repair a hole that the cardiologist said was too big to close on its own. But as you may remember, IT CLOSED ON ITS OWN! So here we are, NOT preparing my baby for heart surgery!
• Roo's vocabulary is growing by the minute, I swear. He talks so much these days, and is slowly becoming more understandable. He even has several sentences that he says regularly, like "Where did it go?" (usually after he has thrown something), "Layla (our dog) is a good girl", and "Lamby, sit here!" (pointing to the seat next to him).
• Speaking of Lamb, she is absolutely amazing with him. Both bigs are, but she just has something special with him. They are absolutely inseparable at home.
• He is eating more food! What? His favorites are still graham crackers and yogurt (and pancakes and ice cream and cookies...), but he is expanding his palate more and more. Most nights we give him a small plate of whatever we are having for dinner, and he'll eat most of that before we pull out the yogurt. He eats chicken and steak really well, and has recently started chowing down scrambled eggs and quiche whenever we have them (which is almost every morning). He's still not wild about fruits or veggies, although he likes raisins, Craisins, and pineapple. He will also eat just about anything if it is in soup form. Even if it's chunky, so it is not necessarily about having it in a smooth texture. Who knows. The kid is a mystery unfolding.
• He has actually taken on a couple of chores completely on his own (which has me thinking that I need to give him some new ones). When we come home from somewhere, he will let the dog out of her crate and let her outside. Also, any time he hears her barking at the door, he'll let her back in. (We have to monitor these to make sure he doesn't take off! More on that in the next section.) When the big kids clean up after dinner, he grabs a towel to help wipe down the table. And in the mornings, he always takes his dirty PJs and puts them in the laundry room.
• Some of Roo's current (and continuing) likes: Paw Patrol, Elmo, "Frozen" (still!), fist bumps, singing & dancing, throwing (still!), running, playing outside, and grandparents :-)

What's Bad

• Roo continues to have no regard for safety. Last summer (I can't remember if I posted this already) we were on vacation in Florida, hanging out with some friends at the rental house on the beach, and we realized that we didn't know where Roo was. He had left the house, walked across the wooden steps that go over the dunes, and was juuuuuuuuust getting ready to set foot on the neverending expanse of beach that is the Florida coastline. I have never been more scared/relieved/drained/panicked/thankful in my life. Then a few weeks ago, my entire family (my crew, my mom and dad, my brothers with their wives and kids) was hanging out at my parents' house, when my hubby looked out the window and said, "Roo is outside." You guys, it was 0 degrees outside. He had on no coat. And when my teenage nephews went out after him (with no shoes on--bless), he ran away, laughing! I also get regular reports from church about how many times he escaped from his classroom. NO REGARD FOR SAFETY.
• Play dates with Roo are tough. For one thing, his disregard for safety (have I mentioned that?) also manifests itself as an intense curiosity to explore new places, whether it is a park, someone's house, or a "play area" at a restaurant. I know that doesn't sound like a big deal, but it is extremely stressful to try to keep an eye on him every second, while also trying to manage a conversation with a friend. And if there are multiple people there, forget about it. I leave in tears, feeling like I can't connect with anyone. Another contributing factor is that we just don't get invited much. That's really not a plea for pity, just a fact of life right now. Roo is getting ready to turn 5, but he is still at a stage where he plays more by himself, alongside but not really with other kids--not to mention the fact that he doesn't communicate like a typical 3-5 year old, so no one is exactly dying to invite him over.
• When Roo was a baby, I absolutely LOVED how long that stage lasted. I mean, it was bittersweet, because it was hard that he couldn't do the things that other babies his age were doing, but the prolonged snuggly, cuddly baby stuff was AWESOME. And getting to really enjoy each new phase and milestone? Delicious. But here we are, still in this slightly-above-toddler-but-not-quite-out-of-it stage that involves lots of chasing and saying things a zillion times and playing catch and... it's just not my forte, guys. I am so sad every day that he gets on the bus, but I am overwhelmed with anxiety on the days he is home. I have no idea what to do with him all day. I can only roll the ball back & forth so many times, but I really want to invest in him when I have him home and to myself. I had this same struggle with the older two, but the phase didn't last nearly as long. I'm looking forward to nicer weather, when we can get outside more.
• Some of Roo's current (and continuing) dislikes: Fruits and veggies, holding hands, being told "no", and bedtime :-)

What's New

• Roo is now starting to answer questions! This is HUGE! Abstract concepts like that are really tough for him to understand. He has known some basic colors (red, yellow, blue) for months now, but if you would point to something and say, "What color is this?" He would reply, "This." In other words, any question you asked him, he would just repeat the last thing you said. But now he is getting it. He'll answer questions about colors and animals sounds. He'll say "no" (or at least shake his head) if he doesn't want something. He's got another question he can answer, too, but you'll have to wait to hear that one. His ability to answer is still pretty much limited to those areas, but he's making progress. It's exciting!
• For Christmas we got Roo a balance bike, and he loves it! It is so fun to watch him scooting around--so far it's just been in the living room, but I can't wait to get him outside with it. :-) If you're not familiar with balance bikes, they are a relatively new concept, and they are fantastic! It is a bike with no pedals and no training wheels--he sits on it and scoots with his feet. It teaches him to work on balance first instead of pedaling. The idea is that it is easier for kids to add pedaling later on, after they have learned the balance of coasting without training wheels.
• He has suddenly started calling me "mama" instead of "mommy." I have know idea where that came from.
• He is starting to drink (a little) from an open cup instead of a sippy. This has been a tremendous battle with him. Fortunately, one of his favorite things to drink from an open cup is a smoothie. I LOVE this because I make smoothies with fruit, kale or spinach, milk, and a little bit of protein powder. It's a great way to get my non-fruit-and-veggie-eater to gulp down some good stuff!

What's Next

• Potty training!!!! You may have seen on here or on my Facebook page that I did a short attempt at potty training after he showed some initial interest. It was a big, huge, complete disaster! I sat him on the potty every 30 minutes for 2 days, and he did not successfully use the potty ONE SINGLE TIME. We went through a lot of laundry in those two days. In April, though, I am going to try a similar-but-different approach. Although I want to be consistent and give him every opportunity for success, I am a big believer in not causing undue stress for anyone. If there is one thing that I have learned from this kid, it's that he'll be ready when he's ready. He crawled until he was three, then started RUNNING everywhere. He fought hard to sleep in his crib for months and months, then one day said, "Mommy? In the bed?" and never looked back. When he's ready for something, he's ready. Until then, he is just.not.gonna.do.it.
• School. Oh, school. Next year, Roo will be moving to a new school. He will NOT, though, be going to kindergarten. By law, he doesn't have to do that until he is 6, so we are going to do one more year of preschool. He will still be in the same program--a county-run preschool housed in another school--but now it will be housed in our local elementary school (where the bigs attend). This has pros and cons, but I think (hope) it's the right choice for us. It will be nice to have him 2 minutes away instead of 20. And it will help him to adjust to the new building/environment before kindergarten. Speaking of kindergarten, I have HUGE reservations about that and have already had sleepless nights trying to figure out the best thing for him. I'm sure I'll be talking more about that as time goes on, but if you want to pray for us, that's a good place to start.
• Church. In the next year or so, Roo will be at an age where kids are transitioning into some of the "big kid" programs. We have a fabulous kids' ministry director who is working with us on figuring out which things will be a good fit for him and what it will take to make some of those things happen. For instance, there is a Wednesday night program for boys that Monkey absolutely LOVES. (Also, Lamb is in a fantastic program for girls that night, and Mr. Fantastic and I attend a Bible study.) Right now, Roo is still in the nursery, where he just plays. In the fall, he really should move up to the preschool program, and in kindergarten he'd move up to the boys' program with Monkey--but I'm not sure how that will work. These are bigger groups of kids (where Roo can get overwhelmed and/or decide to run off), and unlike school, we're not talking about people who have a college education in working with kids or experience in working with kids with special needs. There are options we are exploring. I am incredibly thankful for yet another group of people who love Roo--and our family--and want to help him grow and learn in the best environment for everyone.

So that is Roo right now in a nutshell. A big nutshell. Maybe a coconut shell. We continue to be just... incredibly, incredibly thankful that God turned our world upside down 5 years ago.

And no, this does not take the place of a typical birthday post. That is coming too. Because, more of this.

 

 

 

The wonder of Roo

You guys, this kid. Some days I just have to shake my head in amazement. And amusement.

 

(Also, before you go any further, there's a lot of potty talk in this one. You might want to skip it if you aren't big on oversharing.)

About a month ago, I introduced Roo to the potty. I would NOT say that I started potty training. I simply took off his pants and diaper, he sat on his little potty, we read a book, and then I put his diaper back on. I've been doing that--with little to no consistency, to be honest--a few times a day ever since. Occasionally he'll ask for it, and I'll sit him there. But honestly, he hadn't seemed to make any connection between sitting on the potty and what is actually SUPPOSED to happen on the potty, and I didn't feel ready to push it yet.

Last night, my hubby and I went to a great seminar through our local Down's support group, and the first half of it was all about potty training. When we came home, I told Mr. Wonderful that sometime next month (after he and I take a much-needed grown-ups only weekend away) I will probably keep him home from school for a week and really get started on the whole process.

And then this morning. Oh my goodness. After taking the big kids to school, we came home to just chill out for the day, and Roo said, "Mommy... Potty?"

Well, sure. Let's sit on the potty. Why not? I called my mom to pass the time while I waited for him to be done.

But then I looked down at him, and I saw what looked like... a drip. Of something. What was it? He stood up... And YES! His potty had pee in it! A LOT of pee!

WHERE ARE THE M&MS?????????

I told my mom I'd call her back, hunted down Roo's treat, and praised him to high heaven. He peed on the potty! Today! Right after the potty training seminar! What are the chances???

Well, since we're on a roll, let's just go with it. Right? I set my timer for 30 minutes.

It went off, I sat him on the potty again... AND HE POOPED! What??????

It was just a tiny bit, but SERIOUSLY. You guys. He pooped on the potty. He went from NOTHING to pee and poop both on the same day.

After that, the rest of the morning was anti-climactic. We sat on the potty every 30 minutes, but no more success--and twice his diaper was wet. But whatever. We're really just trying it out--I wasn't planning on this at all.

So then we went to Panera for lunch with my mother-in-law. (Rest easy, I'm going to give you a break from the potty talk for a few minutes.) She and I each ordered soup and salad, and I said I'd just share my soup with Roo. (That kid will eat just about anything in soup form.)

Share. Right. He ate 2--TWO--bowls of broccoli cheese soup. All.by.himself. I ate THREE BITES of soup! Who the heck IS this kid??? And then Gram got him a chocolate chip cookie. He ate that too.

(He absolutely refused to smile for the camera. In fact, as soon as he saw it, he would turn away and shake his head "no." I had to snap this one quick before he realized what was happening.)

Also, a very kind lady who works at Panera took a liking to Roo. This happens everywhere we go--it is just incredible. She must have come over three or four times to talk to him. And then before we left... she brought me another cookie for him--in a bag, so he could have it later. So kind. And so crazy to me how much people just adore this boy!

So after all that, we were gone for almost 2 hours. He was, of course, in a diaper while we were gone (yep, back to the potty talk), so I just assumed that he would be soaking wet, and I was totally unconcerned. I walked him upstairs for his nap... and he asked to sit on the potty again. So I took off his diaper--which was almost totally dry--and sat him on the potty...

(This is fast becoming our official potty activity--it's What Does the Fox Say? You know... like the song. He loves it! LOVES.it.)

And he PEED and POOPED! What the heck?!?

I have to tell you, the timing of this is absolutely mind-boggling to me. I went to a potty training seminar LAST NIGHT... and now he has suddenly decided that TODAY is the day to potty train???

This boy is a wonder.

Thankfulness

Tonight after I put Roo's pajamas on, he stood up and climbed into my lap. He curled up into me like he only does when he is really, really tired. It's been a busy few days at our zoo. As he snuggled up tight, I pressed my cheek against him and remembered to "give his bald head a kiss" for a friend who is missing him. :-) And I was struck again by the love that he has brought into our lives--his incredible love, the people we have met because of him, the people we continue to meet who love him. Our hearts have grown two sizes too big because of this one sweet boy.

And I thought... I can't believe that I get to be his mommy. That out of everyone in the world, God chose me. I am so incredibly thankful.

There was a time when I couldn't imagine those words. I thought my ultimate goal would be acceptance. I thought that the people who claimed to be thankful for Down syndrome were lying--even to themselves. But I was so indescribably wrong.

I used to pity people who had loved ones with disabilities. Then after Roo was born, I cringed with the thought of people pitying me.

But now I know the truth: I am the lucky one.

And then there were sirens...

File this under "Strange but True":

On Thursday I took the kiddos to the grocery store. Just a quick pre-vacation trip to grab some snacks for the plane. In and out. No biggie.

About three-quarters of the way through, Roo got a little fussy. I asked him what was wrong. And he ANSWERED ME, "I stuck." I looked down, and he had shoved his heel between the bars of the cart and couldn't get it out.

Those of you who have a child with Down's may understand how amazing this little exchange was. Roo isn't great at understanding questions and knowing how to answer them. I also had no idea that he knew the word "stuck." While I felt bad that he was uncomfortable, I was ASTOUNDED that he had been able to communicate so effectively. And I was able to just pull his foot out of the bars easily, so all-in-all it was a pretty positive outcome.

Until we got to the parking lot.

The big kids hopped in the van while I threw our couple of bags into the back. Then I picked Roo up to get him out of the cart... and he didn't come. Sure enough, he had shoved his foot back between the bars again. Only this time, it wasn't coming out. I pulled and pushed and wiggled and massaged it, but it was stuck.

I called the big kids out of the van, and we walked back up to the sidewalk. I don't know why exactly, I guess just so that I wasn't standing in the middle of the parking lot while I worked on his foot. I was trying to be calm--he didn't seem to be hurting, and it's not like it was his head or anything--but honestly, it was a little scary.

A kind, sweet gentleman who regularly bags our groceries was outside, doing something with the carts. Let's call him Milton. He came over to try to help. Then a man going into the store with his elderly mother stopped to help. They tried to pull the bars apart enough to disengage the foot. No luck.

Then the man who had stopped with his mother said, "Oh there's a cop, maybe he can help." I looked up, and a sheriff's deputy, who just happens to be the husband of a friend of mine, was walking toward us. He just happened to be heading to the store. It was so nice to see a friendly face! He, too, tried to pull the bars apart before heading back to his truck to see if he had any tools that would help.

More customers stopped.

More employees came out.

Before I really knew what happened, we had attracted quite a crowd.

Roo, who normally loves attention, was not amused by this whole situation. I don't think having his foot stuck was especially bothering him. He just didn't like that everyone was tugging on it and messing with him.

Someone suggested putting butter or oil on it. Milton went in to get it. Someone else suggested calling the fire department.

Then Milton came back out... with maple syrup. Bless his heart. A lady said, "I think I'd put oil on that before I'd use syrup."

Poor, sweet, discombobulated Milton cried out, "I couldn't find any!"

He couldn't find any oil. In the grocery store. Bless. He was so panicked.

A cashier who had come out then went back in to call the fire department. A minute later, the store manager came out with a big ol' jug of vegetable oil, and right there at the front door to Giant Eagle, my son had his foot anointed.

There was pouring and rubbing and readjusting... and then it was OUT! There might have been applause. Maybe it was just me.

Instantly--and I mean INSTANTLY--Roo's fussing and crying stopped. He smiled, looked at his rescuer, and said, "Thank you. Bye-bye!" Stinker.

The crowd (OK, I'm using that term loosely, but there were probably around 10 people out there watching this all go down) dispersed, and my friend's husband told one of the employees to be sure they called the fire department back and told them not to come.

I got my children all loaded into the van, free of the confines of any grocery carts.

And then there were sirens.

I've never had the fire department called for my family before. They take it seriously.

A rescue ambulance came rolling into the parking lot of Giant Eagle as I blushed with embarrassment. The EMTs who had come out were very kind and understanding.

They asked that I fill out the paperwork anyway.

One of them asked if Roo (who was in the van by this time, so they couldn't see his almond eyes or his bald head or his overall I'm-rocking-an-extra-chromosome personality) had any other medical history. I replied, "Related to getting his foot stuck in a grocery store cart?"

He nodded. "Fair enough. Nevermind."

It is never a dull moment with Roo.

By the way, I totally thought about taking pictures while it was happening JUST SO THAT I COULD BLOG ABOUT IT... but I really thought the people helping us might vote me the worst mom ever for that. So I held back.

Five years ago

I turned 35 on Sunday. I've never had much of an issue with age. I've joked about it--approaching 30, turning 30, saying goodbye to 30--but it never actually bothered me. But 35. Oh, 35, you make me feel old.

But I digress.

It hit me today that it has been almost 5 years since I first knew about Roo. It was at my 30th birthday party--which was actually a few weeks after my birthday--that I whispered to my best friend, "Honestly? I haven't been feeling the best... and I'm wondering... if baby number 3 might be on the way." My hubby and I were not trying--in fact, we were actively preventing a pregnancy. But God had other plans.

These five years have been an unbelievable roller coaster, from the pregnancy right on through until now. If you had told me then that I would be loving life as a special needs mama--that I would dream of one day adopting a SECOND child with special needs--I wouldn't have believed you. I truly believed in my heart that God did not make me able to handle a child with special needs. Then again, I still believe that--He chose to equip me as we went, not prepare me ahead of time.

I don't feel like I bear a large resemblance to the me of 5 years ago. But I like the me of today. I love my life. And I absolutely love my Roo.

It's amazing the difference 5 years can make.

Heart Doctors & Expectations

If you follow me on Facebook or have spoken to me (even in passing) in the last week, then you are well aware that today was Roo's annual cardiology appointment. I can't say that I've been exactly worried about it--in fact, I really expected it to be rather uneventful--but it was something that has been on the forefront of my mind.

So let me start by giving you all some background. When Roo was diagnosed with Down's, one of the first things they asked us to do was see a cardiologist. Approximately half of all babies with Down syndrome are born with heart defects, so although we hadn't had any outstanding concerns up to then, a checkup seemed like a good idea.

At our first appointment, Roo was diagnosed with an Atrioventricular Septal Defect (ASD) and a Ventricular Septal Defect (VSD), two of the most common heart issues in babies with DS. You can read more about them here, but they are essentially holes in the heart. The ASD, usually the cause of greater concern, was quite small, and the heart had already started to grow tissue around it. The doctor was confident it would close itself completely within the next few months. The VSD, though, he believed was too big to close on its own and would need to be repaired. Fortunately, it wouldn't affect him for several years, so he told us to expect the repair to happen around age 5--AND it could be done without open heart surgery, but would simply involve a heart catheterization and an overnight stay. Until then, he just wanted to see us about once a year. All-in-all, it was much better news than it could have been.

The following year, the doctor also discovered a cleft mitral valve. This essentially means that a valve between two of the chambers wasn't/isn't closing all the way, which allows a little bit of blood to leak back into the incorrect chamber when the heart pumps. It was a minor leak, and again he just wanted to monitor it. The best news out of that appointment surrounded the VSD, which had shrunk to less than HALF of its original size. He said that was quite unusual for a hole of that size, and told us if it continued to shrink, Roo may not need to have it repaired at all.

We went back again when Roo was 2 1/2. At that point, Roo was the fun-loving (ahem, non-stop-moving) child we all know and love, and the cardiologist recommended against doing an echocardiogram. He knew that the idea of getting Roo to lie still for 45 minutes was laughable, and since he wasn't overly concerned about any of the defects, he told us to just come back again in a year.

Which brings us to today. OK, it was a year-and-a-half. Somebody I know is a procrastinator. Just deal with it.

Anyway, we went to the appointment this morning, and as some of you know, it did not get off to the best start. He completely flipped out when the nurses tried to take his blood pressure and do an EKG, making the results absolutely worthless. He cried so hard he was shaking, the poor baby. It's funny to me, since they weren't doing anything that hurts, but I think he's been to enough doctor's visits that he just hates being messed with.

And then we waited for the cardiologist. Fortunately, Nickelodeon must somehow have been made aware of this impending appointment, and they released several PAW Patrol videos for the Leap Pad last week. I may or may not have spent an hour-and-a-half last night getting them downloaded just for this morning. Whatever. It was worth it.

When the cardiologist came in, I thought, "Oh good, we're just about done!" If he didn't want to do an echocardiogram on 2 1/2-year-old Roo, there was no way he'd attempt one on 4-year-old, already-freaking-out Roo.

I was wrong.

After going over Roo's history (which began with, "I remember you, Buddy! You're bald!" :-) This kid is rocking that bald head, I tell ya.), he listened to his heart and told me that he could still hear some leakage from the cleft mitral valve. He explained that this could be repaired, but it would require an open-heart surgery--and if they did that, they would probably just repair the VSD at the same time. That was a little disconcerting, since my big comfort for this whole surgery was that his chest wouldn't need to be opened.

And THEN he said, "You know, we didn't do the echo last time, so it's not a bad idea to try it this time. I mean, I know it may not work, but it's worth a shot. If we can't get it, we'll try again next year."

Are you kidding me? You think this kid, who lost his ever-loving mind over a blood pressure cuff, is going to lay still for 45 minutes while they rub gel and a wand all over his chest?

OK, if you say so.

I might have been a little skeptical.

At first, it seemed like a total disaster. Roo laid down on the table, they put a TV with a baby signing video right by his face, and asked me to hold his hands. As soon as I did that, he started arching his back and kicking and crying and... it wasn't pretty. BUT I managed to hold both of his hands in one of mine, then I used my other hand to hold down his legs. And although he would periodically remember that he was supposed to be unhappy and give a half-hearted cry/struggle, overall he got pretty entranced in the video and was relatively still. Still enough for the tech to get every shot he needed in about 25 minutes. Hallelujah! (I would have taken a picture of this, but A-both of my hands were fully occupied in HOLDING MY CHILD DOWN on the table, and B-there was a big sign in the room that said, "No pictures or videos, please!" Gotta love us snap-happy moms...)

And then back to wait for the cardiologist. At this point, Roo finally find something that made him happy...

 

He would stack the blocks, count them (I know!!!!), and then say, "Woo-hoo! Yeah!" for himself. Over and over and over. But hey, he was happy, so I wasn't arguing!

But back to the appointment. I'm not gonna lie. At this point, I was preparing myself for him to come in and say, "So, I think we'll go ahead and schedule the surgery now--there's no real need to wait until he's 5."

INSTEAD...

He said that BOTH holes in his heart have completely closed! He doesn't need the VSD repaired at all! I know... I know I should have half-expected this, since it had started to shrink already... but I just can't tell you the relief. I just. I don't even have the words.

And the mitral valve, well, that's still leaking. BUT it is small, and the leak is minor, and it is not causing any enlargement in either chamber (which is the biggest concern). He said, "It can be repaired, but right now I don't see any need to." He asked us to come back in a year, and I'm guessing he'll want to check on that every 1-2 years until Roo is an adult, since he and his heart will be growing. But he seemed quite confident that this would need be an impediment. He cleared Roo for all activities, sports, etc. No worries.

I managed to wait until I got in the car to cry.

I am still a little astounded at the relief I feel from all of this. It really isn't that different from what I had expected going in. But when I told Mr. Fantastic about it, he reminded me of why I may have gone to that appointment holding my breath. Because 4 years ago, we walked into a doctor's office and expected a quick blood draw and a "everything is fine, you guys are good to go!" And instead we left with a diagnosis and our world turned upside down. So now with every single doctor's appointment, even when we don't expect a problem... part of us does. Part of me is waiting for the other shoe to drop, waiting to hear about that something that we missed. That's something that changed for me that day in the geneticist's office.

I expected to leave the cardiologist's office with no real news. And then again, I expected to leave in tears, calling my hubby with news of surgery to schedule or another defect found or... worse.

But I didn't leave with either of those. I left with good news and relief and a reprieve. And it felt wonderful. I did leave in tears, but good tears.

To celebrate, I took Roo (who was nonplussed by the good news, and recovering from the traumatic experience of being touched by doctors and nurses) to his favorite restaurant for lunch. Then I ran into Target for just a couple of quick things. Apparently being a major grump all morning gets all of the grumpies out at once, leaving lots of room for giggles and silliness...

And then, exhaustion.

A much-deserved nap, my little guy. It's been quite a day.

Milestone Alert: It's bedtime!

You've heard me say a million times that I love celebrating every little milestone with Roo. Thanks to that magical extra chromosome, we get to enjoy each phase for a little longer and relish each step in a way that parents of only typical kids don't understand. Like last week we saw a play where the actors were dressed as jungle animals, and he said, "Elephant!" and "Monkey!"--and he was right. I was flabbergasted! (I'm pretty sure that's the first time I've used the word "flabbergasted.") Of course, tonight we watched "Madagascar 2", and he insisted that the hippos were cows and the zebras were horses... but really, that just makes sense.

And then there are the big milestones. They are bittersweet. They are a loud proclamation that one phase has ended and a new one has begun, that my baby is growing and changing and not so much a baby any more.

Last week, I decided it was time to tackle a bigger milestone.

It was time to get Roo out of his crib and into a twin-size bed--more specifically, the bottom bunk. He was thrilled! It was a big moment... and also a short-lived one. Here's Roo at 7:30, going to bed...

(I love how excited he is!)

And this is Roo 2 hours later, at 9:35...

 

 

Don't you love how peacefully he is sleeping? 

It turns out that the "big boy bed" is just.too.darn.exciting at bedtime. So we had to move back to the crib. And that continues to be the trend. Every night I put him to bed in the bunk bed, and every night I give him about 2 hours before going back to the crib. He's not crying, and he's not getting out of bed too much (usually about once a night), but he just won't sleep!

Fortunately, nap time has been going more like this...

 

Possibly because he's not sleeping well at night, he passes right out at naptime.

 

We did have one bedtime exception. On Sunday night, after several nights of being up late, an extra day of school last week, and a big weekend, he was just plain worn out. I put him in the bottom bunk, and he went directly to sleep. On Monday morning I got up early and went downstairs for a little quiet time... and when I came back up I heard a noise in the boys' room... and found this...

 

 

I think it is hilarious that he got up out of bed, got a toy, and climbed back in! I'm pretty sure he knows he's supposed to be in the bed, but just couldn't help himself.

 

This kid is trouble. And also adorable. Which is really the main cause of the trouble. How can I be mad at that face?

 

So maybe we haven't fully made it to this milestone. But we're getting there. 

 

Roo, 4 years later

When Roo turned 1, I made a video called “Down Syndrome, 1 year later.” I posted it again yesterday. I love that video.

And now as we celebrate Roo’s 4^th birthday, I find myself wanting to give you another “State of the Zoo” address. But the title “Down syndrome, 4 years later” just didn’t seem right. This isn’t about a disability. This is about 1 amazing child, and the work God is doing through him.

So let me tell you a little bit about this 4-year-old who lives in my house.

He is incredibly sweet. Every morning when I walk into his room he says, “Hi, Mommy” in a soft little voice, trying not to wake up his big brother (who is invariably dead to the world). When I reach to pick him up out of bed (Yes, he’s still in a crib. Don’t judge me. I’m working on it.), he grabs my face with two hands and plants a beautiful kiss on my cheek. This is usually followed up with kisses to my shoulder and arm as I carry him to the changing table.

He is incredibly ornery. In fact, “incredibly” seems insufficient. “Ornery” seems insufficient. When we discipline him, he tends to respond one of three ways: 1-with a prolonged look of consternation, after which he decides, “OK, fine. I’ll obey. But only because I don’t really want to do whatever wrong thing I was doing anyway”, 2-with the same prolonged look of consternation, after which he decides, “Whatever. I’m cute. You won’t be mad for long,” and continues to do whatever it is you have just disciplined him for, or 3-by doing something completely ornery but so stinking cute that you have to walk away to keep from laughing—like making faces at you while you are trying to stare sternly into his eyes. Also, when I tell him to get out of a room (like my office, the pantry, the bathroom, etc), he will pause for a moment, then run away yelling, "RUN!!!!!" So he technically obeyed, while somehow making it out like he's being tortured by a monster and must get away. Or.ner.y.

He talks ALL.THE.TIME. We seriously do not have a moment of quiet from this boy, and it is wonderful. He still babbles in his own private language a lot, but he also has a ton of real actual words. Apparently he is much quieter at school, and after receiving his IEP report from the speech therapist that said she was hearing about 15 independent words from him (words that he spoke on his own, not just repeating what someone else said), I decided to make my own list of the words and phrases that he says regularly. The therapist’s goal was to get him to 50. So far I have come up with NINETY-THREE, plus some animal sounds and other noises. Next week I will share the list with you, because it is just so darn exciting. :-)

He loves music. LOVES music. Sing him a song, and he will start to catch on almost immediately. I have caught him in the grocery store, singing along with whatever is playing in the background, and think, “Where on earth did he learn that?” He especially loves “Jesus Loves Me”, “Happy Birthday” and “Let it Go” (from “Frozen”), but there are many, many others that he knows and sings. Far too many for me to list. Oh, but one bears mentioning: “What does the Fox Say?” If you ask this boy what a cow says, he won’t know how to answer you, even though he knows that cows say “moo.” The same if you ask him what a dog or cat or horse says. (He has trouble understanding questions.) But if you say, “Hey, Roo, what does the fox say?” He will answer emphatically, “Ding-a-ding-ding-ding-ding-ding!” For real. It is fabulous.

In case you need a visual reminder of his love of music, check out his singing skills here…

 

And his dancing skills here…

 

He is a runner. This is a somewhat serious issue of concern for me. (Dear Lord, thank you for this boy’s independent spirit that I know is going to be an attribute someday… but could you reign it in just a little? Thanks.) Because of this, his classroom is the only one in the school where you will regularly find the door closed. It has also gotten him into trouble at church (and we go to a big church with multiple additions that can be a bit harrowing to navigate), where he has (to name a few) shut himself into a classroom and no one knew where he was for forty-five minutes, run out of the classroom while other parents were coming to pick up their kids (fortunately, I arrived just then, so I was able to snag him!), and taken off down a hall without our realizing it—and we caught him just as he was trying to push open a door to a staircase that could have taken him to any number of halls (or outside). This is scary business for me. It also means that I have developed a bladder of steel, because heaven forbid that I need to pee while we’re out somewhere.

He is not totally bald. Don’t let the pictures deceive you. The fact is, he has three hairs on the right side of his head. Mr. Fantastic wants to cut them. I think they’re adorable. Also, his eyebrows and lashes are growing back, which makes us wonder if the hair on his head will grow back as well—and wonder if we really want it to. I mean, he really does rock that bald head.

He is delightfully small for his age. I recently tried some 3T clothes on him, and they are still just too big. At his most recent doctor’s appointment, he weighed just over 27 lb. (An average 4-year-old weighs 40 pounds.) To be honest, I think this works in our favor, as I think it helps people to be more patient with him. They don’t expect him to behave like a “typical” 4-year-old. Well, at least some people don’t. At other times, it’s hard for people to understand that we are teaching him boundaries and social expectations and what is or isn’t appropriate, but it just takes him longer to get it. Which leads me to my next point…

He needs to work on sharing. A lot. Is Roo playing with a toy and you want it? Tough. Are you playing with a toy that Roo wants? You’d better watch your back. The other day we went to the zoo, and we were the only ones watching the sloth bear. Then another lady came up to the exhibit and stood at the far end of the glass. Roo ran across the front of the glass and tried to push her away. Again, please don’t think that I tolerate this behavior—I do discipline him, for real. But it’s just such.a.process. His stubbornness + his orneriness + his poor short-term memory = the need for much patience. We don’t do many play dates, and the ones we do often end in tears—for me, not him. Between his tendency to run off and his tendency to demand/take whatever he thinks should be rightfully his, I have to watch him like a hawk during all social situations, and it wears this mama out.

He loves school. He gets so excited to get on the bus every Tuesday and Thursday. I haven’t had many opportunities to visit him in his class, but he was having a blast every time I have been there. And I *think* he is better behaved there than for me. You know the above social issues I mentioned? I don't hear about those from his teacher, so I take that as a good sign. (In fact, when I visited last week, he immediately climbed up on the table. When they told him to get down, he did… and then threw himself on the ground and started to scoot along like a snake. They assured me that he has never done that before, which I found funny, as those are both regular occurrences at home.)

He enjoys reading… on his terms. His favorite books are Five Little Monkeys Bake a Birthday Cake, Five Little Monkeys Jumping on the Bed, and Brown Bear, Brown Bear, What do You See? Oh, and now a pop-up book that he got for his birthday. Try to read him anything else, and he will slam it closed on your fingers.

He will finally sit still for a television show. Until the past 2 months, this was not the case. He had ZERO interest in the TV. Not that I want my kiddos sitting in front of the tube all day long, but… well, come on. A tiny bit of a TV break every now and then is kind of nice. Somehow, though, he discovered a show called “Paw Patrol”, and he is enthralled with it. Also, he has seen “Frozen” approximately a bazillion times, and will still sit through an entire showing. Actually, that’s not true. He gets up and dances to every song.

He LOVES his brother and sister. Once I’ve had my good morning kisses, he turns his attention to his siblings. First he calls for Monkey. If Monkey is still asleep (which he usually is), Roo climbs into his bed to wake him up. Then he needs to check on Lamb. When we pick them up from school, he starts calling for them by name as soon as we pull in the parking lot. When they practice the piano, he sits in the chair behind them and babbles off commands, or counts random rhythms for them to follow.

He wants everyone to be happy. He can be wary of strangers coming up to talk to him (especially women—he absolutely LOVES men), but show him someone with a frown on their face and he feels the need to fix it. And the less interested they are in him, the more determined he is to make them smile. He will bellow out, “Hi! Hiiii! HIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII!!!!!” long after the unhappy person is out of sight, or make funny faces at people who are ignoring him in Walmart. If someone in our family is grumpy or sad, they immediately become his project, and there is no rest until he has elicited a smile or laugh.

He is irresistible. I think that's actually why some people refuse to look him in the eye--because they know they just won't be able to resist the cuteness if they do. People at our local Giant Eagle get upset if I come without him. People everywhere we go will stop and talk to him or tell us how adorable he is. People in random places will come up to us and say, "Oh, so you're Roo's parents?" Which always leaves us wondering how he knows more people than we do. But you just can't look at that smile without being affected. It is an amazing gift.

And that is my boy. All of that and so much more. He is a delight… and a challenge. He makes me laugh… and cry. I celebrate with him… and discipline him. He is by far my toughest child… and my most joyful. And when I tell people these things, they ask, “Why?” “Why did he lose all of his hair? Is it because he has Down syndrome?” “Why does he have no sense of danger? Is it because of his disability?” “Does Down’s make him more ornery and stubborn, do you think?”

I spent a long time being uncomfortable with those questions. (They are perfectly reasonable questions, by the way. Ones that I myself would have asked before Roo.) Attributing all of those things to a teeny tiny extra chromosome never sat right with me. No different than people telling me, “People with Down syndrome are always so happy!” (There’s a whole zoo full of people who witnessed me pulling Roo off of the carousel who could attest to the lie in that!) It’s just too simplistic.

So here’s my answer… It’s Roo. He does and is and loves those things because he is… Roo. God gave him desires, strengths, challenges, talents, weaknesses—and an extra chromosome. None of those things can be singled out, separated from him, because all of that makes up Roo. And that is pretty incredible.
 

Throwback Thursday, Roo style

Good morning, bloggy friends! In our continuation of the Week of Roo, I am doing something I have never done before: participating in Throwback Thursday.

I made this video for Roo's first birthday, right when the fog of my depression and sadness (yes, two separate things, trust me) of his diagnosis were starting to clear. I was just seeing the light. I was just beginning to grasp that he wasn't great in spite of his extra chromosome, but with it. (I don't want to say "because of" it--I think there are many, many great things about that boy and I don't think it's fair to attribute them all to Down syndrome.)

So here is my TBT for my baby Roo...

Come back tomorrow for a full update on where we are today. :-)

Celebrate Good Times

It is day 2 of "The Week of Roo", and this morning I just want to share a few pictures from The Big Day.

We'll be celebrating with our extended family over the weekend, but tonight the grandparents--my folks and my mother-in-law--came out for dinner and a mini-party.

If you saw the video I posted yesterday, you may have guessed that my little guy enjoys the birthday song. And that he knows what to do at the end. Months ago, he started "blowing out the candles" at the end of the song, but this was his first time to do it for real. (Well, technically it was his FOURTH time to do it for real, but this was the first time since he started singing the song and pretending to do it.) I wasn't sure if he would really understand what to do. He did.

He also knew what to do after the candles were done.

Earlier in the day, Roo and I had run to the grocery store, and he saw the balloons. And one even said, "Happy Birthday!" What were the chances? It was like a sign. I had to buy it, right?

It was quite possibly the best $4 purchase in the history of ever. He.was.THRILLED.

And what is a birthday celebration without presents?

He had no trouble knowing what to do with those, either!

He immediately needed to read his new books. And Nana was happy to oblige.

It was a fun night. And then it was bedtime. For everyone. :-)

Thanks for indulging me a little with all of the photos for the past couple of days. Tomorrow, more of a real update on Roo. :-)