Happy Birthday, MAX!

Holy cow, my baby is 3 today!!!!

Earlier in the month, we celebrated his birthday with a few cousins and Grandma Sharron. I made Cookie Monster and Elmo cupcakes since Max seems to love Piper's old Tickle Me Elmo lately, as well as a Cookie Monster stuffed animal from Aunt Kimber.

For the kid who doesn't really like sweets, I think they were a hit.

Today we went to Lagoon (a local amusement park) to celebrate. It was a disaster. We are realizing more and more lately that Max has sensory issues. He HATED the noise. Cried for most of the time, except when we finally went to Pioneer Village away from the rides and noise and let him out of the stroller to run. Poor kiddo.
We left after about an hour and came home and did bubbles in the backyard with his new bubble machine from Grandma Joan. Much more his speed. More birthday pics to come. Just trying to get this up quickly before the day is over.

***
He finished up with early intervention services last week and will start preschool in two weeks after their spring break. I'm a wee bit nervous. He did so well in EI's structured play with one on one support. In his new preschool there are seven kids with a teacher, two aides and an OT, ST, and PT that come in at different times. Have I mentioned that he's a runner?!And a tornado? I'm sure he's not the craziest they've ever seen, but still.

Moving on...
Max has really come a long way this year. He still only says "Daddy", but he has expanded his signs to more than 20. I'll list them in a follow up post. He still needs a lot of prompts when signing and only does one or two spontaneously, but that is huge progress.
Last year on his birthday, he had just learned to walk. He is now running all over the place and jumping, too. He is getting better and better with stairs, too.
Not sure how tall he is, but at our last doctor's appointment this week, he weighed in at 30 pounds.
His favorite food is paper. He eats paper likes it's candy. Although he doesn't really love sweets. I guess his favorite real food is french fries.
He seems to be developing more sensory issues. He has gotten all out of sorts the last couple of times we've taken him to a noisy restaurant. He can no longer handle the carousel at the zoo - completely freaks out from the noise. He continues to despise haircuts. And today was a disaster at lagoon. Will be trying noise reduction headphones.
He is still on oxygen at night for his pulmonary hypertension, but his sleep apnea has greatly improved.
He is still a major daddy's boy.

Piper wants to add a birthday wish, so I'm typing as she speaks...
"Happy birthday, Max. You're the wonderfullest brother I've ever had. Oh yeah, I forgot, you're my only brother. You're my first ever. Even though you're my first brother, I love you so much. I love you as much as I love my family. Even though you're from Texas, I love you as much as I can. But now you're in Utah. Hooray! Hopefully when you're older like 7, you can probably do the things I can, but I'll still be older than you. Someday you will be 5, or 6, when you are 6 or 5, you can probably do things I can. I will never leave you behind. But sometimes I might, when you are a baby. I love you, and even though you're Down syndrome, my family loves you, too. Sometimes you can be annoying and sometimes not. Happy birthday, Max. I love you. Bye!"

Happy Birthday Max!! We love you so much!

'Roid Rage

I really have more to update with, but Max is a little needy this week. The allergy/cold got worse and Max's oxygen dropped. Then I heard crackling and wheezing. My first thought was pneumonia. So I started the oxygen, albuterol and prednisone. 

Tip of the week: duct tape socks onto child's hands to get nasal cannula on uncooperative toddlers. Strap uncooperative toddler into 5 point harness carseat to administer albuterol breathing treatment. Ignore stares from neighbors (actually no neighbors were out, thank goodness).

Next morning took Max back to doctor. Of course the wheezing and crackling were non-existant and his oxygen was back to normal. Oh well, better safe than sorry. Meds must be working, right? Maybe it's asthma? Today, wheezing starts again, oxygen drops. Ugh.

So onto the 'roid rage... prednisone, a steroid, is known to make kids a little 'feisty.' Some don't even sleep - they get wound up. So yesterday Max was pretty angry most of the day. Throwing things really hard. Screaming. So Piper was playing with him, building lego towers that he would then knock down. He was having a great time. But Piper wanted to make a really tall tower, so she kept holding it out of reach til she was finished. Well, Max got really angry and started screaming at her. Then, he walked right up to her and yanked her hair as hard as he could! It was so funny. And I was actually pretty proud of him communicating his wants. He usually just whines. I probably shouldn't have laughed. Luckily, Piper was a good sport, too!

Allergies or Cold?

Took the kiddos to the park yesterday. It was so nice out. Max was so excited he ran as fast as his little legs could go. Unfortunately, it was a little too fast. First owie of the season.

Second owie came a few minutes later when he cut his lip on who knows what. Snot, mixed with sand, mixed with blood. True boy.

{his face is red from crying because he didn't want to leave - not from the owies}

{he so needs a haircut again - I'm so not ready to go there}

Thought he just had allergies, but he barely slept at all. So I took him in to see Dr. Durham this morning. He said if it's not responding to the allergy meds, it's probably just a cold.
Maybe a little of both?

Zoo

Cutest Video Ever {and my kids aren't even in it!}

This reminds me so much of Max & Piper, except that Max doesn't quite bug Piper that much, YET ;)

So after watching 'Deedah' with other Ds friends last night, we headed to Iceberg for dinner and our free cone. They don't skimp. Max's was as big as his head. But the best part, was that as we were eating, he spontaneously signed "ice cream"!!!! over and over. Super way to end World Down Syndrome Day!

3/21 - Celebrate!

Happy World Down Syndrome Day!


{I'm at 3:44}

We pretty much celebrate Down syndrome everyday. Love my boy (and girl).

The 25 minute movie 'Deedah' will be showing at the Herriman Library today at 5:15 and 6:00 PM. The stars, Jonathon and Charlotte (Deedah), will be there with their parents Phil and Brooke, who just moved here last year. 
The Library is at:
5380 West Herriman Main Street
Herriman, Utah 84096

Deedah trailer here:
http://www.youtube.com/watch?v=vooCiGPr6O4









Free ice cream for anyone with Ds at Iceberg today!
Print this:

More WDSD posts!:
http://unforeseengifts.blogspot.com/2012/03/reminder-of-past.html
http://www.youtube.com/watch?v=TqLDXpf483Y&feature=share
http://www.deannajsmith.com/2012/03/celebrating-syndrome-called-down.html
http://www.notaperfectmomsblog.com/2012/03/world-down-syndrome-awareness-day-2/
http://babynumber10.blogspot.com/
http://myliddybug.blogspot.com/2012/03/what-we-want-you-to-know-world-down.html
http://www.youtube.com/watch?v=JvDV8_TTUvc&feature=share
http://www.worlddownsyndromeday.org/
http://plus15campaign.wordpress.com/
http://www.kellehampton.com/2012/03/3-21-2012.html
http://www.withalittlemoxie.com/2012/03/32112-blog-hop-link-up.html
http://shannonblaeske.blogspot.com/2012/03/what-is-down-syndrome.html (Max & Piper are in this one)

3 Weeks Ago...

...we went sledding.
Playing catch up.... finally got done editing these pics from earlier this month...
Should preface this post with a sidenote: my computer was having problems and somehow damaged my photoshop elements program (PSE8). Tried to uninstall/reinstall a billion times. Finally got the computer working, but not the photoshop. So I downloaded a trial version of PSE10 ('cause I was doing that workshop for the neighborhood), which just expired. Today I downloaded a trial version of full photoshop (CS5) until I fork over the money to upgrade from my old PSE8. SO... I didn't take the time to size these like I usually do, with the colorblock on the side to give them all the same uniform size, which bugs me. And when I get my PSE back, I will probably come back and change them all, so they will be uniform when I print this year's blog book. I'm really not OCD. Don't know why this bugs me so much. Yeah, had to fix 'em.
Anywhoo, onto the pics...

Max actually enjoyed himself for a few minutes. Until he got wet and cold.

It probably didn't help that his hat kept sliding down over his eyes. I can't tell you how much this picture makes me giggle though. Poor kid :)

 But Piper thoroughly enjoyed getting out with the sled.

So Max ventured on to the playground, which was even more wet than the snow.

Probably didn't help that he doesn't have snow pants... and he had to wear his sister's pink hand-me-down boots... and goofy knit gloves (because Piper couldn't find hers and wore his good ones)...

Yeah - he was wet, and cold, and DONE.

So we drove around til he went to sleep in the car and came back so Piper could spend a little more time sledding.

 Success (for at least one kiddo)!

{and while we were driving around calming Max down so he'd fall asleep, we grabbed some french fries (his fave)... I made Piper throw half of hers out the window at the seagulls trying to take a picture of one in flight - it worked though - and she never eats all her fries anyway!}

It's Staying - UGH!

This is Max's oxygen concentrator. I was really hoping it was going bye bye Friday. But, no :( 

After being diagnosed with mild obstructive sleep apnea a year ago, Max has been on oxygen at night.

In August he had his tonsils and adenoids removed hoping to give him more room in his floppy little airway to breath better at night. We finally met with our new pulmonologist, Dr. Uchida at PCMC, Friday to get the results of the last sleep study. Good news - his sleep apnea has been much improved. Hooray I thought - this will mean he doesn't need oxygen at night since he's not desatting!! Bad news - I thought wrong. He still needs oxygen at night due to his pulmonary hypertension (high blood pressures in his lungs). I was soooo bummed to hear this. We do oxygen by tent, not by nasal cannula, so it's not that bad, but still, it costs money, it's noisy, and overall, a bit annoying. I know others are dealing with much worse (can you say c-pap! yikes), but I just really had my hopes up to be done with it.

So I put the question out on facebook to see if others' kiddos had resolved their PH issues as they got older. Consensus - some did, many didn't. So I'm crossing my fingers that Max's lungs will eventually get stronger (or grow more capillaries, or whatever they need to do to work better), so he won't have to sleep with oxygen for life. He still sleeps in his crib, so the tent works great for now. I have heard that bunk beds work great for a makeshift oxygen tent, too, so maybe they're in our future. Piper would be very excited.

On a bright note, though, Dr. Uchida prescribed albuterol and prednisone to have on hand so the next time Max gets a cold that could turn into pneumonia, or croup, or whatever, we can attempt to fight it off at home without multiple trips to Instacare or the ER for breathing treatments (why haven't we had a pulmonologist on board before now? Oh yeah, because Pfeffer didn't take our insurance and Daftary refused to see us because we paid cash and saw Pfeffer once instead of him and then lied to us and said he wasn't taking new patients because he was leaving PCMC - don't get me started...)!

So I guess we'd better just get used to the little hum of the concentrator. Cause it'll be around for awhile.

Big Air

Itsy Bitsy Spider and "More, please!" video clips

Max is learning so much at structured play through early intervention. I will be very sad when he has to move on at the end of the month, because he turns 3. I really hope preschool goes as well.

He is loving the Tickle Me Elmo lately. He whines when Elmo stops laughing, but hasn't figured out how to push on the foot to make it go again. Today, I miraculously captured Max signing "more, please" when wanting me to turn Elmo back on (at about the 17-22 second mark in the clip). He is just starting to sign a little more without the visual cue from us. This is definitely thanks to structured play class!

He also just started doing the actions for 'Wheels on the Bus', and 'Itsy Bitsy Spider' - also thanks to structured play. 

(this video is kind of bright - I didn't change the camera setting before he started in on itsy bitsy spider, and I didn't want to miss it)

And thanks to nursery at church, he loves to jump in the Sunbeam song! 

He just started learning to jump a few weeks ago, so this is big stuff to him. He practices jumping all day long :) He is so proud of himself.

More Randoms...

Is it obvious that my blogging has become random pictures lately? My brain is on overload. I completely cleaned my office a month or so ago and it felt so nice to not have to wade through crap. But as I look around today, it's back to the same old mess! Mostly due to trying to find a bunch of IRS paperwork crap while on the phone and then not bothering to clean it back up out of the mental exhaustion of trying to show the government that you aren't an idiot and that their mistake(s) are suffocating you. I have mentioned on several occasions over the past month that I think we should pack up and go live in a tent on a beach in Mexico. I am so fed up with the IRS and SSA. I won't get into it here, but I think we're back to treading water ;) It's only money, right?! But seriously, can someone edit their confusing form letters that have sent us into a complete panic several times over the last few months, when in reality is was just another reminder from the same matter at hand written in bizarro world language!?!

On a good note, I spent way too much time on the Photoshop Elements workshop I did for the neighborhood last week. But I enjoyed the mental break. Something to get my mind off the government. The class went well, and I was surprised at how much I learned putting it all together, as well as how much I already knew. But then I needed a little break from the pictures and editing, so I still haven't figured out how to post the notes/tutorial. My neighbor told me to put it in google docs, but I haven't looked into it yet.

And I have a list of schools to check out for Max, but haven't gotten to that yet either. The weather got nice all of the sudden so we've been hitting the zoo and park instead on spur of the moment outings. Although I still haven't edited the rest of the sledding pics from earlier this month! And now I am way behind with the zoo pics. Oh well. They're not going anywhere.
So... here are a few more random pictures.
From the aquarium...

And the first flower in the yard this spring :)

Up next - update on Max with video!

IDSC Button Boy

Look who's the current face of the IDSC (International Down Syndrome Coalition) button...
(it's Max for those who didn't know him as a baby)
http://www.idscforlife.org/

Their Mission Statement:

IDSC for Life is dedicated to promoting the dignity and respect for all individuals with Down syndrome, from conception and throughout life. We are a coalition that has worldwide representation. Our mission is to celebrate and enhance the lives of individuals with Down syndrome, as well as to ensure fair and accurate representation in the case of prenatal diagnosis. We believe that ALL life is precious!