Life's a Beach

We all took a hike through the park this weekend. This will be the last day to use the park this year as it's closing tomorrow for construction as they remodel some of the outdated buildings, then bow hunting for deer later this fall.

We couldn't resist taking advantage of the perfect weather. Not too hot for Angela, and the only person whining was Dean. (maybe because he was wearing slip-on sandals? And he didn't want to go in the first place?) Angela set the pace: fast. Axel kept running to get in front of her, which would cause her to trip on him because he wasn't fast enough. Then he'd come back by me for a bit. It was a bit circus-like.

Angela, wait up! We've lost Dean. She didn't want to. This is the "talk to the hand" pose we see a lot of around here. 

I see him! She said! Then took off again.

Axel couldn't see him. He was worried we were gonna loose the papa.

This park is pretty big, with many forks in the trail. Last year a woman and her son got lost in the park and she called the police on her cell phone to get them out. Ok, we kind of laughed about this because it's not THAT big and if you walk in one direction for a mile or two you're going to run into a neighborhood. But it IS big enough for someone like Angela to easily become lost. That's when it occurred to me to have quick talk with her. "It's really important to always stay were you can see us. If ever you can't see us you STOP and DON'T MOVE. I mean it, you DON'T MOVE and eventually someone will find you. So tell me the new rule?" Which she repeated to me.

Ten minutes later I wanted to get some pictures of flowers. Angela did not want to be taking pictures of flowers because she was on a mission to loose us. And she did. She was WELL out of sight, and several turns of the trail ahead of us. And there was a fork...one leading back to the parking area and the other is the one we usually take home, which is how we usually get to the park!  I could hear her laughing hysterically "Ha ha! You're lost! HA HA!" (she sounds like "Roz" the secretary from Monsters Inc. when she says this.) We will have to work on this "keep us in sight" rule because clearly it's just a joke to her.

At the end of the trail is the beach. We decided to put our feet in. I had Axel here a couple weeks ago but he was barely able get his toes wet before we had to leave. (I was connected to an electronic thingy for some medical tests.) So this was Axel's first REAL time at the beach, and he LOVED IT!!!!!

Getting his feet wet.

Took about 2 seconds for me to get rid of his shirt, which later became his towel. 

Dean was in charge of the camera, otherwise there wouldn't be something on the lens AND you'd be able to see Axel laughing hysterically as I swung him in the air and plopped him back in the water with a big splash.

When it was time to leave Axel didn't really want to get out of the water. It was pretty cool outside! The water felt great compared to the 60 degree air. Anyway, this is how Axel came out of the water. Walking backward splashing the entire way.

Getting a little closer to getting out. LOL

and now he's cold. LOL

Since the mom didn't plan for swimming, we didn't have towels, and it was chilly! But we'd taken the car over (we usually walk) so it only took us a minute to get home. Good thing we had shirts to dry off with.

Wish I'd had my other camera with video. Axel had the little old man walk going on, and he was NOT happy with the wet sand on his feet!

The Feeling of Success

I feel so incredibly accomplished when I get things done have seemed daunting to me, or that I've put off for a long time because they're just such a hassle to complete that I procrastinate forever. Today I got a project done that's been sitting for at least a month, just waiting for me to finally get irritated enough to do it.

Today's task was to program the universal remote. It only took me about three minutes but you just never know with these types of projects what kind of snowball effect they will have. Thankfully today was a simple task with now fall-out. What tasks have you been putting off?

Everyone has something to say

So many of our kids in the DS community find themselves fighting the toughest fight of their lives before they've even started school, and sometimes later on down the road they're fighting again. This little guy, in DS colors, says what many of us think.

Difference

With a heart in the colors of the autism ribbon

HOORAY!!!! It's coming OFF!!

On February 4th, 2011 we got the results back of Axel's MRI saying not only did he have AAI, but that there was impingement on his spinal cord. Our lives changed on that day.

Axel needed a neck brace immediately but it was not safe to bring him in the car given the condition of his spinal cord. Never mind that we'd done thousands of miles in the car by that time. LOL That day a person from an orthopedic place would come to the house to fit him for a neck brace. 

Axel had only been home with us for seven weeks at that time, and all the really fun things we'd done with him already flashed before my eyes. Things like sledding and going face-first into snow banks. You know, things that could have killed him?


He stayed in that brace 24/7. The only time he could take it off was for baths. He had to sleep in it because he would head-bang in his sleep, and sometimes fall off the bed.

Then he had his spinal fusion surgery on May 16th. That was a horrible day! The neck brace was a piece of cake compared to the halo.


We suffered through the summer together. All of us largely confined to the house because Axel was just too hot to be outside much in his halo. (the vest is lined with lambs wool.) So when he got it off three months early, on August 10th, we were SO HAPPY!!! His birthday just three days later, the first birthday he'd ever had in our family, was like a Re-birthday.

Getting his halo off meant he had NO neck strength what-so-ever. Because he had three months of not using his neck, he was like a newborn baby all over again. This, combined with the fact he had a new bone graft that wasn't 100% solid yet meant he was back in the neck brace 24/7, only this time he couldn't even take it off for baths! Instead we'd bathe him in it, then lay him down flat on the bed, and very carefully remove the wet brace and replace it with dry one. Its been a headache, but nothing like the pin-care involved with the halo. I'd take this any day!

But guess what? TODAY is the day we get to start weaning Axel from his neck brace! We're almost to the end of the road...almost...Check this out!

On learning to gloat

This morning during breakfast, I decided Axel had not had enough screen time lately, so I pulled up a short movie on Netflix. Besides, I needed him busy for a few minutes so I could take a shower. He's gotten a lot more...ummm... adventuresome in the house recently and is no longer content to just sit on the couch with his Signing Time brochures admiring Rachel. Instead he carried her along to investigate nooks and crannies in the house he has previously ignored. Like the electronics cabinet, my make up drawer, or...well...places nobody but me should go sometimes.

So anyway, he was just finishing up his movie when Angela came upstairs.

Angela: "Good morning Axel."

Axel (pointing tot he computer): "See? See? Mooo ooom" (in a sign-songy "ha-ha on you" type of voice) To interpret the Axelese, he meant, "See? I'm on MOMS computer! The one you covet. HAHA!"

Angela: "Fine. I'm going downstairs. Not you!"

Axel just grinned and turned back to his movie.

The Freshman

The Freshman, full of sass and frass. Just a little wound up about Freshman orientation.

Socks

Tonight Angela had a difficult decision to make: Walk away from the T.V. and go to bed nicely, which would guarantee her some T.V. time tomorrow, OR make Mom unplug the T.V. in which case there would be no T.V. time tomorrow.

So a few minutes later, after I unplugged the t.v., Angela went storming to her room.

Angela: "Socks!"

Me: "What socks?"

Angela, "Socks in my room!"

Me: "What are you talking about...socks? What socks?"

Angela: "Socks no T.V. tomorrow!"

Ahhh....yes...Angela has expanded her vocabulary.  "Socks" = "sucks".

New Words

I love learning new words or terminology. Not that I use them but this one I just might!

Here's my new favorite term:

"social lubricant"


Did this just make a picture come to mind? It did for me when I heard it, and it wasn't necessarily a good picture. Entertaining, yes, but not good. HA!

So what is "social lubricant"?  You go to a social gathering and feeling the need to loosen up a bit you have a couple of drinks. You're a little more chatty this way, and you know you tend to have more fun. You're not drunk, but you are under the influence. The alcohol has become the "social lubricant".

But people can also be the lubricant.

You have a party and are trying to figure out who you're inviting. You know that Sue is always the life of the party. She's a lot of fun, and everyone likes her. You invite her to keep the party going. Sue is your social lubricant.

I bet you have some other fun examples of social lubricant. Wanna share?

Tears in Speech Therapy

Axel has speech therapy two days a week. I love his ST. Not only because she's fluent in ASL and Cued Speech, but because she's just plain a great person. And even more importantly, Axel loves her. He loves his OT too, but when we're getting ready to go he always asks, "Speech..."L"?"

One of the things Axel has been doing is choosing his activities at the beginning of the session by placing 1st, 2nd, 3rd...and now 4th cards on them. That's the order he gets to do his activities. The activity he picked first today was a sound discrimination computer game. (the name has escaped me at the moment. I'll come back and add it when it comes to me....because it will. LOL) So, Axel has to listen to a sound, then click on the picture that goes with the sound. A cow mooing, a helicopter, etc.

Then there was the sound of a cat meowing. Axel pointed to the picture of the cat and said, "mačka"  which is the Serbian word for cat.

And I was instantly in tears.

To my knowledge, Axel has never said Serbian words. My Serbian friends said there was nothing recognizable.   Today something was triggered that brought out a Serbian word. What other Serbian words has he said that I don't know? Oh, what a big thing this was. I don't want him to forget all of Serbia. I don't want him to forget all of his language, but we really had no idea how much of those language memories were left.

It's there. There are pieces left in there, and they're trying to come out. This is HUGE for Axel.

Ummmm yeah

The Bravo device should be placed with sedation. Just say'in.

They said, "It takes under 5 minutes for the entire procedure." Well, that's if A) you have the will power of an elephant B) you don't have a strong gag reflex and c) just putting the mouth-holder-open thingy in your mouth doesn't make you claustrophobic.

And it hurts. Still hurts. Will probably hurt until the thing dislodges itself in a week or so.  I'm going to go take some valium now, I think.

Where'd he go?

Every year we get tree frogs by our front door. They come because the front light is on at night, making hunting for bugs easy. The other day I posted a picture of this year's resident frog on our windowsill, and I haven't seen him since. I've looked in the previous daytime hiding spaces, like between the posts under the deck railing, and under the shutters on the bedroom window.  I know he's around here somewhere!

 Ok, sorry, I know you're probably tired of my tree frog pictures. LOL

Wordless Wednesday

(cuz this time it really is Wednesday, right?) 

Bravo!

Bravo! Bravo!

You've heard that before, right? Well, I'm not shouting it in excitement, or to express my positive opinion on a performance I've just seen.

Remember a few weeks ago when I was freaking out about having an endoscopy done? Well, the doctor was able to rule out esophageal cancer (Thank you, God!) but among the few things found in my esophagus, it was suspected based on my symptoms that I have Laryngopharyngeal Reflux, or LPR. If you read the symptoms listed on that link, I have every single one of them, the most bothersome being chronic throat clearing. I'm talking about every 50-90 seconds...twenty four hours a day. It even wakes me from a sound sleep. Many nights I've been sleeping in the recliner because 1) I wake up choking when I'm laying down and 2) Dean needs his sleep too! Needless to say, neither Dean nor I are sleeping very well, and living life in general is not very fun right now. The thought of sitting in a classroom in a couple weeks is really making me nervous. Because I can't do it. I can't not clear my throat because of all the crud that builds up in there every few seconds.

So yesterday was my follow-up visit from my endoscopy. The doctor told me, "based on your level of throat clearing (since I did it 4, 238 times during the visit) you have one of the more severe cases of LPR that I've seen, but lets get the Bravo testing done to verify that's what's going on."

So what's the Bravo business? Well, in Thursday I'll have a Bravo ph monitoring device placed in my esophagus. Now, with an endoscopy they sedate you. I had initially been freaked out that they wouldn't be able to relax me enough and I'd remember everything, but those doctors just happen to know what they're doing, and all went well. In fact, I'd do it again tomorrow since it gives me license to nap the rest of the afternoon. LOL But yesterday at my doctor appointment he told me they don't sedate for this test.

 Ummm...did you watch that video? First of all, I won't be able to NOT clear my throat long enough for them to put it in and secondly, HELLO! Anyone ever heard of a gag reflex????

So that's on Thursday.

Then on Friday I have a video swallow test done, along with an esophagram, both tests that Angela has had done about a thousand times. They're pretty simple, painless tests, that involve just drinking some barium, and swallowing some cracker also laced with barium. These tests are being done because of the difficulty I've been having swallowing the past few months, including food getting caught near my larynx on the way down. (similar to what happens with Angela's achalasia as seen during esophageal manometry testing which was done at Boston Children's. )

So what will we find out from all of this? Well, since my esophagus shows only a few changes indicative of Gastroesophageal Reflux Disease (GERD), yet I have chronic throat clearing and a feeling of constant phlegm in my throat, the Bravo testing will give a definitive answer.  With LPR, it's pretty common to not have symptoms of heartburn, so it's often referred to as "silent reflux". Funny...Angela had horrible silent reflux as an infant which, along with repeated bouts of aspiration pneumonia which are what led to her having a nissen fundoplycation when she was 11 months old.

I'm anxious to get this testing done. This problem has gotten so bad that it's hard to even carry on phone conversations, much less sit in a meeting or a class.

This is why

This is why I should not even be attempting human forms. Check out these babies by Camille Allen. Unbelievable.

Call it what it is

It's ok to say I'm obsessed with making heads and faces right now. It's the eyes...they eyes are bothering me. There are many dolls on the market which are labeled as "Down syndrome dolls", but people who know DS better than anyone will tell you a lot of those dolls don't really look like they have Ds. I've seen one that looked like it was a someone who'd been in a car wreck, and really I considered it an insult that this doll was being marketed to our kids as one that "looked like them".

Now, I don't have a clue what I'm doing. You know that, right? I'm lacking a couple important tools for one thing, but they'll have to wait. Fortunately polymer clay doesn't dry out until you bake it so it will wait for me to get a couple more tools. It also means I can come back and do the eyes again, and again, and again....not a good thing! LOL

So those faces, they're hard to do. Well, I don't really know what I'm going in the first place but still. And we all know that all people with DS are not alike. While their eyes might have similar traits, they're not exactly the same.  Look at Angela's eyes, which are the more common almond shape, compared to Axel's which are anything but! Angela also has epicanthal folds, while Axel does not. Angela has almost no nasal bridge, where Axel's is more developed, Angela's mid-face is flatter, Axel's has more fullness.

And so I continue to mess with the polymer, often in the middle of the night. My time is running out though, because school starts two weeks from today, and then I'll be up all night doing homework, not playing with clay. But I'll give you a sneak peak. (which looks nothing like anyone I know! LOL)

Fairies

Ok, I still have a long way to go, but they're getting better. At least this one sort of resembles a human form. LOL I made a different one a couple weeks ago, and her arms and feet are better than this one, but she doesn't have hair, and her wings need to be redone. This one isn't very photogenic. I think it's like of like High Def. T.V. People look much better in person than they do in high def!

Say what?

This guy was sitting on our window sill this morning. What's he say'in?

AAI, AOI and the DS community

If you're part of the the Down syndrome community, and you have a child who has Atlanto-axial Instability (AAI) or Atlanto-occipital Instability (AOI) and either had spinal fusion surgery, will have fusion surgery, or is on precautions because of questionable instability, please contact me ASAP at deanleah@comcast.net. If you're in the community, please help me spread this around by posting on your Facebook pages, your blogs or wherever it will get seen! I'll have more to post on this in a couple of days.

THANK YOU!

Why did we adopt?

There were many reasons we chose to adopt. (in no particular order)

1) We can
2) We have space
3) There are kids who need homes
4) We have plenty of love to give

But I will admit to having some selfish reasons too. It's ok to be selfish sometimes, as long as others benefit from your selfishness. My top selfish reason was so I don't have to play catcher anymore. I think the kids are o.k. with that.