Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Thursday, April 25, 2013

PT Eval (And the mythical iPad fairy, anyone know one?)

We took Lauren to her eval at U of M Hospital on Wednesday. It went AMAZING!

Right away they were talking about getting Lauren Sure-Steps (ankle brace orthotics). Her ankles are super wobbly and she stands on the outside aspect of her foot or curls her toes under. And we'll do treadmill therapy where they'll strap her in a little harness and have her practice walking on a treadmill. And we're going to get her a compression vest. It's great for kids with low tone because it gives the deep sensory input the body craves and helps remind her muscles what they're supposed to do. Her standing position now is to stick her butt way out, which is adorable but ineffective. We're hoping it will help get her body in a more walking-ready position. Right now she has absolutely zero interest in putting on foot in front of the other. The compression gear is expensive, like $60-$70 but totally worth it if it works.

The PT said she's going to call our pediatrician and get the ball rolling for the things we'll need a prescription for. Talk about a game plan!

I AM SO EXCITED!!!

We also found out that Lauren is a whiz at using the iPad! We don't have one, but they have them in the therapy rooms. I need an iPad fairy to deliver one to my front door, anyone know one? ;)

She was playing with a piano app and dancing to the music she made. Then she played with one that let her use her fingers to write rainbow streaks, which also made music. All of this was done with her STANDING UP (!!!) with one of us holding the iPad or puting it on a short table. It was seriously amazing too see her little eyes light up. It was really the first time I've seen it in her eyes and know that she was really grasping a concept of making something work. I was speechless!

We really really liked the physical therapist too! She was so awesome with Lauren. When she saw Lauren using the iPad like a pro she said, "Yep, she's just like every other kid!"

Do you know how soothing to the soul it is to hear that for a parent of a kid with special needs? There aren't words.

Please pray, pray, pray that our insurance will continue to cover these visits (it looks like we've only been approved for a 60 day period and we're not sure if we can start over or what afterwords. It looks like they can cover up to 60 visits per year.)

I can't wait to take her back next week!

Tuesday, April 23, 2013

You Are So Lucky

Not long ago we were shopping at Target. The kids were being cute. And, well....kids. Ryan was in the cart demanding that we eat fruit snacks immediately. So I wandered away to leave Greg with the responsibility of saying no. (I'm a great wife.)

Then I was trying to corral Lauren and get her to stop acting like your average 1 year old...trying to throw herself out of my arms and knock down entire displays of gum and candy. A younger woman (probably early 30's) came over and was just staring at Lauren. She finally said, "You are so lucky." There was such reverence in her voice. Such wistfulness.

I wonder at the backstory because clearly there is one. Did she lose a little one? A little one with Down syndrome? I got the vibe that it was a "Down syndrome thing".

What if every expectant and new mother was told she was lucky? What if the doctors, instead of offering termination, expressed awe at the miracle of a life created? What if they said, "Your child will have a great life with the love you have to offer as her mom."

What if we said it to moms who have kids with autism? Cerebral palsy? Down syndrome? DiGeorge? Skeletal dysplasia? The list could go on and on and on.

What if we said it to moms with typical kids? So often you hear the warnings of "Wait until he's 16." Children are not a burden. Children are a gift.

As parents we have the tremendous responsibility and the honor of raising our children to be productive members of society. That looks different for some kids than for others. I never want my kids to feel that they were a burden for even one minute.

(Note: The above statement does not apply to potty training.)

My parents did an awesome job at this. Even when I dicked around in college and spend a ridiculous amount of my parents' money to eat cheap Chinese food and not go to class, I never felt like a burden to them (although I probably should've). They did an amazing job and letting us know that we were loved and yet also we grew up knowing that the world didn't owe us anything. I feel lucky to be their kid and I know they feel like they got the good end of the bargain.

My point is, I AM lucky. I am blessed. I am grateful. I am a parent. Becoming a parent happens in so many avenues. Pregnancy. Surrogacy. Adoption. Foster care. Mentoring.

Whether your kids has one too many chromosomes or one too few or just the right amount. You. Are. Lucky.

Wednesday, April 17, 2013

Refreshing!

This evening I escaped with no husband and no kids to have a sushi date with my BFF, Kristen! We've been best friends since before we were born (our dads worked together and our moms were friends well before we were in the picture).

We ordered a ton of food! When the guy dropped it off he said, "Ha, don't worry we're open 'til 10!" We finished all of it in about a half hour and then promptly fell into a food coma.

 
It's so nice to be able to get some time in with a good friend, isn't it?
 
I've been feeling so incredibly thankful lately. We have a welcoming church, a nice (if small) home, awesome kids, I have a job I really enjoy, we both have great families and we have some really good friends. What else could a person need?

Monday, April 15, 2013

Funny kid!

Ryan has been saying the funniest stuff lately!

Last night we had dinner at my parents' house. There were 12 of us. Lauren was just minding her own business eating dinner and Ryan says, "Lauren, maybe you should calm down."

LOL! He is a parrot and this is something I say sarcastically to Greg all the time. (Sorry babe!)

Then this morning I'm messing around on Facebook and he's playing with his toys and he lays down on the couch and says, "Mom, just be quiet!" I wasn't even talking!

And this morning our dog got to eat twice. I had just fed her and he was very upset because he wanted to feed her. I told him to give her a tiny scoop. He gives her a huge scoop and says, "I made a mountain!!!"

His cuteness is almost making up for waking up twice last night and then being up for good before 7am. Almost.

Sunday, April 14, 2013

Lazy blogger

I haven't updated in a while! In my defense, there isn't a whole lot going on. I was sick, then Ryan caught it. He's still sick and and mopey.

He does, however, love Tylenol which is a good thing and a bad thing. At bedtime tonight he wanted more Tylenol even though he'd had some an hour ago. My trick to avoid the inevitable I'm-sick-so-everything-is-a-major-crisis breakdown? Apple juice and red food coloring (oh, the horrors!) served in a medicine cup. Worked like a charm, thank you very much.

Lauren's been being her cute snuggly self. The only difference is that she now has 9 teeth and two more working their way in. 4 on top, 4 on the bottom, a random molar and two more joining us soon. Yikes!!

She starts private physical therapy on Wednesday! I'm pretty excited to see what they have to say. Greg's coming with us since my mom offered to watch Ryan. What a great grandma!

I joined a committee thingy at work, the first meeting I'm attending is Wednesday afternoon. I'm not really the get-involved type so we'll see how this goes! Lol.

Greg and I leave for our adult only no-kids-allowed vacation in 3 weeks! We are SO excited! I know I'll miss the kids the crazy but I can't wait to have my amazing hubby all to myself for 7 nights and 7 days! I seriously don't have words. So. Excited.

Me and Ryan snuggling on the couch this afternoon!
Girlfriend helping me unpack from our trip (finally!)


Tuesday, April 9, 2013

Frustrated!

I'm starting to get really frustrated with our Early Intervention program. They keep saying their physical therapist will "pick her up on her caseload". But nobody can tell us a timeframe.

Lauren has significant low muscle tone in her legs, ankles and feet. She does not  bear weight at all. Shes 14 months old. She needs physical therapy!

We were stressing about how to pay for private PT when we had our insurance miracle. So today I called the hospital to update her insurance info and the pediatrician's office to leave a message with the doctor that we now need a referral to their clinic.  Lauren was evaluated there when she was a tiny baby and didn't qualify because she wasn't delayed enough. Her pediatrician said that won't be a problem now, which is great!

I'm not expecting EI to provide some crazy miracle where she will start walking by age 2. But I would like to not be strung along and keep being told "later". I'm starting to feel like while her EI teacher is extremely nice and I really like her as a person, she isn't really doing a whole lot for Lauren. I feel like my frustrations with Lauren not bearing weight on her legs and that she can't even keep her legs together enough to crawl WITH Hip Helpers on are not being acknowledged. I'm frustrated big time. Part of it is just that Lo is not a super motivated kid. She's snuggly. She'd rather clap and wave at something she wants than go and get it.

And I'm starting to get the feeling that our IFSP meeting for next fall is going to be significantly less fun than last year's. I truly do feel like the awesome women running our EI program WANT our kids to succeed. But the funding just isn't there to make it work. I would hazard a guess that the PT caseload is totally full for this year and that she might get it next year. But waiting that long is not the best option for Lauren. So hopefully her insurance pulls through!

Saturday, April 6, 2013

Tolerance vs Acceptance

Something that's been on my mind lately is tolerance vs acceptance.

These two are not the same. They are not interchangeable.

Tolerance, to me, implies value judgement. Acceptance is truly meeting people where they're at and embracing them for who they are.

Sure, you can tolerate people whose beliefs differ from your own. You'll probably even be applauded for it, like you've done something so above and beyond that you get to call yourself a forward thinker and put a sticker on your car.

Parents (Of kids with special needs and without): Do you want your child to be tolerated or accepted?

People (who may be a little different, or not, or whatever): Do you want to be tolerated or accepted?

It is not our place to tolerate. We don't get to choose the decisons, lifestyle choices, chromosomal makeup, ethnicity, sexual orientation, etc. of others. So why do any of us feel it's our place to assign value judgement?

I'd rather accept. I would rather love. I would rather include.

Friday, April 5, 2013

Holy Cannoli!

I got an insurance card in the mail for Lauren today and I thought it was a mistake or something.

Apparently Blue Cross Blue Shield has a medicaid program here in Michigan and Lauren's enrolled. They cover everything...including glasses and 60 therapy visits a year!!!

This is SUCH an answer to prayer. We were stressing out over whether we were going to bite the bullet and pay for private therapy over the summer or just take a little break and see how things go. This way we can afford for her to have therapy once a week at the hospital clinic. This is awesome since she is not thrilled about bearing weight on her legs.

Even more awesome? I think Ryan is enrolled too. This is partly because we're a one-income family of four and partly because there are some sibling benefits involved in special needs healthcare-at least in our experience. Ryan needs physical therapy to help him because he toe walks and his achilles tendons are tight. I accidentally slept through his evaluation appointment (whoops! Midnights are hard, don't judge me!) so I'll reschedule that ASAP.

I am so happy and grateful for the extra help!

Thursday, April 4, 2013

Top Ten

My previous post gave me an idea. Here are my top ten favorite things about my kids. These are in no particular order because I'm not that organized.

RYAN
1. The cute little voice he does when he's asking for something that he knows I'll say no to. Like feeding the dog Sour Patch Kids.
2. The even cuter voice he does in surprise when I say yes, asking "Which color would she like?" (I said purple, she licked it once and then Ryan ate it)
3. The fact that he cannot stay still for longer than 10 seconds. It's impossible for him, he even moves around a ton in his sleep!
4. The fact that he's now potty trained (this is actually #1)
5. How he refuses to pull his pants up himself after going potty. I know he won't do it forever so I'm just enjoying how hilarious it is when he says, "I think I need a little help here."
6. His formal mannerism of speech. We have no clue where he gets this from! He speaks like a non-native English speaker and it's just hilarious! (Please see #2)
7. His totally off tune singing voice. Also, he always adds his own lyrics. Take The Itsy Bitsy Spider. He always adds that the spider crashes into the water... Every. Time! This is made funnier by the fact that he sings everything! He sings about trucks, he sings about chips, he sings about carrots...
8. His stalling tactics are legendary right around bedtime. He all of the sudden develops an intense urge to brush his teeth, go potty, hug the dog, kiss mommy, and the list goes on. He's pretty smart.
9. When he falls asleep in the car. There's nothing cuter in the world.
10. His love of hugs. Hearing "Would you like a hug, Mommy?" will never get old!
11. I almost forgot- his speech issues are definitely on this list. The way he says Optimus Prime (which he says a lot these days) is "Octopus Pie" and no amount of correcting will change it.

LAUREN
1. Her stellar dance moves. She danced herself right over today, bonking her head on the couch.
2. Her dramatics. She is such a girl! After #1 happened this afternoon she threw herself to the floor, buried her face in the carpet and cried...until I picked her up and she signed "spider" so I would sing, and promptly started dancing again.
3. The way her face crinkles up when she's doing her "I'm trying to be especially cute" smile. This is different than her normal smile! She does this one especially well when I'm trying to get her to say "mama". It always results in this special smile, accompanied by an adamant "dada!"
4. Her love of food. It's probably my very favorite. She likes everything except BBQ sauce. She shared Greg's coffee ice cream yesterday. This is how we know she's our kid- she loves coffee already!
5. Her hair. She has perfect pony tail hair without even trying! I've been striving for this for 27 years and I'm not quite there yet. Life is unfair sometimes.
6. Her positive attitude. I know this seems crazy, but I can tell already that she's a really positive person (she hasn't reached the toddler years yet so please let me maintain this fantasy for as long as I can!). She's the happiest person to be around and can make everyone smile.
7. She gives the cutest kisses ever. They're open mouth, wet and enthusiastic. We're going to have to watch this one when she becomes a teenager!
8. The fact that she will still snuggle with me. She still needs to be rocked to sleep most nights. I LOVE this. Why did I rush this with Ryan?! They are little for such a short period of time and then you can't get it back.
9. The way her cute little hands look when she signs. She has the smallest hands ever. They're like newborn sized. And her fingers are short and are all the same length. I don't know why this cracks me up so much, but it does! We just taught her "thumbs up!" (which she only does when she feels like it. Notice being stubborn is not on this list!) and I crack up every time!
10. The way she loves strangers...from a distance...if they don't touch her. She loves people. She loves waving, smiling, blowing kisses...but from the safety of mama's (okay, if I'm honest, dada's) arms. I like her suspicous nature, she gets it from me. You should hear my sister's and my theories about strangers...they're all serial killers. And people who wash their cars after dark? Definitely belong in prison. These are qualities I really want to pass down to my kids.
 
And a picture of the dog, because why not?
 

The non-update update.

I hope everyone had a great Easter! We did. We did an Easter egg hunt at our church on Saturday afternoon and then stayed for Easter service. That way our Sunday morning was laid back and kind of lazy!

We hid eggs for Ryan at home- he loved it! I was so excited to put stickers in his eggs...LOL! He only wanted the one's with M&M's. Why do I do this to myself? The Easter Bunny also got him a Transformers action figure- Heatwave! He loved it, I was so excited.

Although I'm 99% sure he thinks the Easter Bunny stuff is b.s. He said, "This came from Target!" Um, he's three. If he's this skeptical now I'm a little nervous for later, haha.

Then we went to brunch with Greg's family at their country club. We haven't gone in recent years because, well, nobody (and I mean nobody!) in their right mind would think toddlers and country clubs are a good match. We decided to give it a try this year...and he did great! He brought Heatwave and there was a petting farm outside. It's a miracle we didn't come home with a baby goat.

Lauren was a baby angel, of course. She ate a ton of super random food that most kids would barely look at. She loved this dish called Chicken Oscar. It was baked chicken with this yellow cream sauce, crab meat and asparagus. Delicious, but I may have the only 1 year old who agrees. Strange. Her love of food is one of my top 10 favorite things about her.

Then we came home, had naps and recharged for Easter dinner with my parents, sisters, cousins and grandparents! It was really fun. I can't even get over how cute Ryan is at this age. I want him to freeze, stay 3 and not get any older!

Unfortunately, Greg's grandma passed away Tuesday afternoon. She had 87 years on this earth and will enjoy an eternity in Heaven. Please pray for Greg's family as they mourn and also for their safety as they travel out of state for her burial this weekend. The kids and I are staying home because I work on Friday.