Happy Birthday Max!!

Max is 4 today. How did this happen?? Really. Four.
He was playing out back in some nice spring weather earlier this week, so I grabbed my camera to take a few birthday shots.

Within minutes, he launched the disc swing, and didn't move out of the way when it came flying back toward his face, again. Guess over the winter he forgot about the laws of physics...

After a minute or two, he was fine :)

He finally figured out to swing the disc and then get out of the way or put his hands up. Happy face.

And then he got scratched by a thorny bush. Yep. He's four.

Cake is done, burnt, but done.

More on the birthday boy later... gotta go put the Easter baskets out. Piper asked me before bed if mom's help the Easter bunny (like we help Santa), or if a stranger comes in the house. I told her we help a little, and the bunny leaves the basket on the porch, and I bring it in ;) She already saw Easter stuff in my closet last week... don't think she'll keep believing too much longer - I really don't try to hide stuff very well...

...and the poor girl - she had to color eggs by herself on the kitchen floor because I was trying to get Max's cake done and didn't have time to help her. I didn't even get a picture. Mom fail.

Proud Mama Today

Proud mama moment today! 

I submitted a handful of pictures to our church recently. One of the church related Facebook groups I'm a part of requested photos of people with disabilities that they could use in magazine articles, etc. So I did. I think my friend Suzie, who is serving a service mission in the Disabilities Services Dept, gave them a heads up that I was sending pictures of Max. So anyway, to make a long story short, I got an email from the LDS Church Disabilities Services Dept asking me if I had any more pictures of Max I could send, as they were working on a specific project needing headshots of kids with disabilities showing 'the light of Christ' in their eyes. So I sent a few more. Then I got an email saying that someone on the General Primary Board had seen the pictures and wanted to use one of them to hang in the Primary General Boardroom, in the Relief Society Building down on Temple Square.

So fast forward to this afternoon. I got a call from Ginny Smith, from the Primary General Board, letting me know the picture of Max they selected was now hanging in the Primary General Board Room. She called to tell me about the day they hung the picture and had their first meeting afterwards. There are 14 kids' pictures on the wall. They replaced one with Max, but hadn't told the board members. They were going to announce it as they started the meeting, but one by one as the board gathered, before the meeting started, they saw the new picture and stopped and some even cried. She said that since they've had his picture up, there is a new special feeling in the room. 

I was so touched that she would call to share that with me, especially since Max is such a tornado in everyday life. It's so humbling to know that he truly is special, and I tend to forget that as he flushes swim goggles down the toilet! I am so proud to be his mom! And can't wait to go see the picture!

{This picture was taken about a year ago in our living room.}

Is it really spring??!

Winter is having a hard time saying goodbye...

And we have the boogers to prove it! We've all been sick on and off for 3 weeks now. I think Max has only been to 2 days of school in the last 2 weeks. Ugh. He's been waking up at night choking on his snot - anyone know how to teach a kid to sniff?

But we hit the orthopedics office yesterday, snot and all. Good news - it looks like Max's ankles are strengthening. After our last visit, the doc wanted Max to stop wearing his braces and see how he did without them. And everything looks great, so that's good. And then, since we were there (at Shriner's), they offered to xray his neck to check for any AAI gap. It's a neck/spine thing that some kids with Down syndrome have. If there is a big enough gap (generally over 4.5mm I think) they can do surgery and fuse the bones together to prevent injury. Max only had a 2mm gap, so something to watch, but really no reason for concern. Great news considering what a jumping bean this kiddo is!

Happy World Down Syndrome Day 3.21.13

I didn't send in a picture this year for the IDSC WDSD video, so I made Max his own - enjoy!

and of course, theirs too!

Wrestling and E.I.E.I.Ooooo

These two love to wrestle on the couch!

And, a new sound Max is making... oooooo!

Haircuts, Teeth and Trains

Piper gave up on growing out her bangs, and let me cut them a couple weeks ago!! I love her with bangs.

And we discovered that behind the tooth she recently lost, is the permanent one already coming in... sideways, like perpendicular to the one next to it. And it looks like another one is trying to come in behind the other front bottom one... she's scheduled for a dental check up in a month - debating if I should take her in sooner than that to pull the other one out. Guess she'll need braces regardless, so maybe it doesn't matter.

Max loves trains. For his upcoming birthday, we got him an addition to the starter GeoTrax set he got for Christmas. Piper and I set it up to try it out. We didn't close the door all the way, and he saw us! Of course, we had to let him try it for a few minutes.. He LOVED it. So much for the surprise (although, I'm sure it will seem just as new and fun when he gets to open it again in a couple weeks).

So glad this week is over!!!!!!!!!!

Quick recap of the week....

• Last Sunday I spent the afternoon in the ER passing a kidney stone, which is like having a baby without an epidural, but not having anything cute to show for it afterwards.
• Tuesday, Piper lost her first tooth.
• By midweek, we all had colds.
• Then Piper added pink eye to the mix.
• My nose was so stuffy I had an awful time trying to get to sleep at night, only to be woken up by Max crying and needing to be cuddled because of his stuffy nose. So Steve & I traded off Max duty.
• My back is STILL sore from a snow shoveling strain that happened 3 weeks ago!
• Thursday, Max flushed the goggles down the toilet.
• Friday, we just all felt like crap from lack of sleep and colds.
• Saturday, Max's oxygen started to get all wacky with oxygen stats as low as 74, and only as high as 88, after a breathing treatment. Then he developed a fever of 103, so we headed to the ER. As we were leaving for the hospital, I notice that his eyes were goopy now too. All labs were negative and he wasn't wheezing or crackling. So they suctioned him out, and he had a little nap in the ER at 8pm.

His oxygen, ironically, was 92 by the time we hit the ER, and only dropped below 90 once while sleeping. So they sent us home with a diagnosis of 'a cold', oh, and pink eye. We stopped at McDonald's for fries on the way home, and this kid was a happy camper. Of course, he just went to bed at midnight, since he had an 8pm nap ;) Hopefully he sleeps through the night! I still can't breathe and am kicking myself that I didn't ask them to suction me out while we were there ;)

SO GLAD THIS WEEK IS OVER!!!!

5 trips to the ER or instacare so far this year for our family, well, just for Max & I.... so feeling my age these days ;)

**update - finally woke him up at 10am this morning! He's still stuffy, but happy and playing :)

I'll Spare You the Picture

Piper left the gate open that keeps Max out of the bathroom... he immediately ran in and flushed something down the toilet, but Piper didn't know exactly what. Without telling me, she then proceeded to do her 'business', and then flushed.

She ran to find me to tell me water was overflowing out of the toilet... ya know, lovely brown water. So I tried plunging to no avail. To cut the visual details, lets just say that water from the bathroom that flows out of the toilet, immediately spills into the laundry room below. Oh joy.

And in case you're wondering, it costs $100 even, in my neck of the woods, for a plumber to fish your daughter's swim goggles out of a poop filled backed up toilet pipe. Actually, he only ever pulled half of them out. Not sure where the other half ended up. Happy there's a 10 day guarantee on his work.

I would have paid double that for someone else to clean up the mess left behind ;) Good thing I have a stuffy nose and can't smell much right now.

And somehow, no children were strangled in the making of this post. Pretty sure I'm getting that Mom of the Year Award afterall!

(I did take a picture to text to Steve, but I don't really think I need to post it for future remembrances.)

03.06.13

The Tooth Fairy

Since I can't draw, I just took a picture of the Tooth Fairy for Piper {ya know, when I happened to hear jingling in the hallway, and grabbed my camera at 2am} ;)

She left a sparkly $2 bill.

* Piper proceeded to taste some of the sparkles, then had a meltdown because I some comment that I don't remember about them losing their magic??? So the tooth fairy had to come back the next night and leave more sparkles in a baggie.

Ready for the Tooth Fairy

Piper lost her first tooth today. She pulled it herself! Gross. But she was soooo proud.

She really wants to know what the tooth fairy looks like, so she is hoping that the tooth fairy will draw a picture of herself ;)

On a side note, I spent Sunday in the ER passing a kidney stone. It was awful!!! Yes it is as bad as childbirth, but the pains ends sooner (thanks to morphine) and there's nothing but a grain of sand sized rock to show for it ;) And the CT scan showed there is another one forming in my other kidney. Oh joy.

Yep, I'm Going to Try to Potty Train Max

All signs point to "he's not ready", but I AM! I was going to wait til summer and just leave him naked in the backyard, but I don't think I can wait that long. Diaper changes are one of my biggest challenges with him at the moment. He's just so strong, and he fights it big time. I'm tired of getting injured in the process ;) So, I'm prepping to hit it over spring break, in a month.

After polling a group of moms on facebook who have kids with both Down syndrome and autism, it seems the average age for their kiddos to successfully potty train was 8-10!!! And took YEARS to complete the process. I cannot survive that long changing Max's diaper, so I hope this works easier for him. I think the average age for kiddos with just the Ds diagnosis is about 5. Max turns 4 this month. So yeah, I'm hoping for a MIRACLE. (And I should note that Piper at age 7, still wears pullups at night because she sleeps so soundly she never wakes up to pee. So I get that I may fail miserably here.) If we can get on the autism waiver and get the ABA therapy, that supposedly helps a great deal, so I am really crossing my fingers. If we don't get on the waiver, I may be forking out the big bucks for just a couple of therapy sessions to get us started on potty training!

I'm getting my plan in place, using these resources:
1) Video from the Children's Hospital in Boston, linked HERE.

2) PECS cards, a chart and some other tips from the NDSS HERE.

3) An ABA therapy approach HERE.

4) The book, "Toilet Training Persons with Developmental Disabilities" HERE.

Interesting factoid: Many parents rave about the book "Toilet Training in Less Than a Day". This book was actually written for children with disabilities, and the authors then tried their methods on typical children, and found they worked. They then tweaked that method and found it worked even better for the kids with disabilities. So anyway, it's basically the same book, but it does take more than a day with kids who have cognitive delays.










5) We have the froggy potty, but may get a toilet insert instead.

6) Also debating about getting one of these. But I've heard that if you train a boy to stand and pee, then it's hard to get him to sit and poop... so maybe not.

I'm not sure exactly the plan, but I know I'm going to use PECS cards. I haven't decided whether to start in the bathroom (where he's currently not allowed), or the kitchen (where's he's also gated out, but it's a much bigger space). Not sure if he's too big for a traditional potty chair. And I need to start charting when he's dry/wet during the day. He pretty much always poops soon after lunch, and lately in the evening as well, right after we put a new diaper on for bedtime. I know he's not quite ready for complete independence (at the moment he can't even get his pants on and off by himself - the thought of him wiping himself isn't even comprehensible!), but my goal is to just get him on a schedule!!!
A mom can dream, right?!

Wish me luck!

** and one other thing... recommended by a friend - install a bidet of your kiddo doesn't ever get the wiping your bum concept ;)

*** update - tried and failed over spring break ;) Max just doesn't get it yet. He doesn't get rewards, so when I gave him a piece of licorice (one of the few treats he likes), he stuck it down between his legs and stirred the pee with it - awesome! Ha. He wasn't opposed to sitting on the potty, but had no idea that he was suppose to pee in it. If he started peeing on the floor, I would grab him and sit him on the potty, but that would startle him and then he'd stop and hold it. Once in a while he would relax and go in the potty, but mostly he would hold it til he was walking around again. He does recognize his need to go - he holds himself, and looks down when he is peeing. So that's a good sign. We'll try again after we start ABA therapy this summer.