Traveling...Special Needs Style

Anthony & I like to travel - no question about it.  Whether it's driving somewhere new or flying to a different country, if we can do it we will.  Obviously we haven't gotten to travel much since Xavier has been born.  This really hasn't been because of his special needs but just because he's a kid and travelling with a kid ain't easy.  Take it from (at the time) two childless newlyweds who travelled around Spain for 10 days with two friends and a six month old.  Said six month old couldn't have been a better baby.  She was a total sport and after one minor exorcist-like vomiting incident in the car shortly after landing in Espana, there were few baby related bumps in the road.  The problem is that kids don't travel light.  You ain't going anywhere and a kid is just packing a carry-on.  Nope.  And especially not a kid with special needs.

We decided we wanted to do a little getaway to some place we've never been and to go as a family.  Ultimately we picked Pittsburgh.  I have many friends who will say, "Dear Lord, why Pittsburgh?".  Well the deciding factor was that we could drive there, it's a small city, and I wanted to go to the zoo. 

Anthony and I shared one suitcase and Xavier had his own suitcase.  And a cooler.  And a pack-n-play.  Reference last sentence where I said kids don't travel light.  But I have to say that we actually did better than we have in the past with just going to Ocean City.  Basically we wanted to have our bases covered but, as Anthony had to remind me, we are in a major city.  People in Pittsburgh have kids, they use diapers, we aren't in a random country.  Ahh yes, you are correct.  But will we be able to find Naked Juice?  We need drink thickener.  How much food should I pack?  No to mention that he needed multiple outfits.  What if a strong breeze came through and he got cold?  And I bought him a "chilly-towel"...it could get too hot and I don't want him to over-heat.  Ok, so I'm a little neurotic and maybe just a tad overprotective.  But he's my little bean and he can't tell me what he needs so I need to think ahead for him. 

So after I made sure I had a multitude of choices (of both the clothing and food variety) we were confident about our little trip.  The boy totally enjoyed himself!  This time he was the trooper. Up at 7am and stayed up through the whole ride and even after we got there.  Same thing the next day (I think this was a product of the pack-n-play though...he is way too good -so he thinks- to sleep on something so hard now and he ultimately ended up in bed with me where I had a blissfull smiling little boy chewing his tongue in my ear in the darkness).  Our only snafu was that we had requested a fridge in the room but it never got there.  We improvised used the ice bucket when we wanted to cool a drink down so it was really no biggie.

Our first real family vacation went off without a hitch!  Lots of bad food was eaten (by both mommy & daddy and Xavier...everyone needs ice cream for dinner at some point!), lots of smiles were had, and we had a great time as a family.  No worries about doctors or appointments or therapies.  Just us doing what families do.

So very unenthused of a 5 hour car ride

Mommy making X pose for a pic at the end of a long day.

Frozen yogurt for dinner? Of course.

This moment was the absolute best.  Xavier thought the suspension bridge was hilarious.  I was laughing so hard at him I could barely take the picture.

A little foot comparison.  Note to self, don't meet a polar bear in the wild.

Family pic.

Stingrays are awesome sensory input!!

After a little misting.

Pooped. Pooped. And more pooped.  This would be a great promo for the Westin's "Heavenly Bed" collection.

Ok, so maybe it's a little over-kill but the head rest and stroller fan come in handy.

Syndrome Smyndrome

As I've stated before, I'm a horrible blogger.  I keep up with blogging about as much as I keep up with a diet or any other kind of "great" idea I get.  The reality of it is that sometimes there's just not enough time in the day to DO anything besides wake up, work, feed the boy, feed ourselves...lather, rinse, repeat. It's like Groundhog's Day.

So a few months back we got the call that our geneticist had found the genetic mutation that X has.  Technically our geneticist had not "found" it but found the smart people that found it.  That's a lot of "founds".  So long story short our genetic counselor came across an article in a scientific journal and she thought it sounded like what X might "have".  She asked the smart peeps in the Netherlands if they would run his sample and they did.  Lo and behold they found the pesky little mutation that is responsible for the Bean's issues.

This all means that now we have a diagnosis and name for what he "has".  A name that no one knows except Anthony and myself and our doctors.  A name which I refuse to print because I have friends and family whom I love dearly but who are prone to fits of extreme Googling (you know who you are).  Although very little bit can be found about the syndrome it doesn't do anyone any good to read and compare.  It's not like you find out you are a diabetic and now you know you need to check your blood sugar.  Syndromes are vast and people don't always present the same way with the same syndrome.  What we know so far about Xavier's syndrome is nothing that we didn't already know about him.  He'll need to be followed by docs but again that's nothing different than what we already knew or did without a diagnosis.

I like to think that in this whole crazy journey through parenthood and having a child with special needs we've been very realistic.

So what do we know about X and his syndrome:

• Children with this sydrome have seizures (and seizures are more common than you think--you probably know someone with Epilepsy)
• Children with this sydrome are developmentally delayed (we don't expect X to one day wind up President.  For now we are happy with some better head control, playing on the iPad, and an affinity for all things sweet & yummy)
• Children with this syndrome have a hypospadias.  (Big shout out to our urologist Dr. Gearhart for some superb pee-pee fixing)
• Although this is genetic it is a mutation.  This means that it is not likely to reoccur in future little Byrds.
• And one thing is for certain....this kid is DAMN CUTE! :) 

Xavier Year 2

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Fave Product Friday (but Wednesday)

I've been saying that I'm going to start writing about some of my favorite products.  Because really, we all know I love to shop. AND I love a bargain.  AND I love "regular" products out there that can do double duty and work great for a special needs kid AKA Xavier.  What better way to sing my praises of these products and hope that maybe they will work well for other parents than to write about it.  I hope to make this a weekly thing (on Fridays hence the title of this post).

So let's begin.  Way back when the Bean was still a bean and not yet a sprout he got the bright idea in his head that he wasn't digging on bottles so much any more.  He thought they were great things to chew on but not so much to drink out of anymore.  It went something like this: suck suck chew chew cry cry.  When people worry you to hell and back about your kid's weight the last thing you want him to do is to take a vow against the bottle.

So began the quest to find the perfect sippy cup.  This involved many a trip to Babies R Us, Target, Walmart and just about any place that sold anything with the words "sippy" and "cup". 

COPYRIGHT ASTRID PHOTOGRAPHY

Many dollars spent later I came across the Tilty Cup.  The sun shone, clouds parted, angels might just have sung.  Not only does the Tilty Cup keep liquid at an angle for easier drinking (and holding for Mom and Dad) but it has a variety of lids with different flow.  What's that?  Can I get an AMEN!  They have a slow flow, regular flow, and smoothie lid (also a travel lid).  We skipped the slow flow and went right to the regular flow.  X took it like a champ!  Soon we graduated to the smoothie flow.  We use this all of the time now because X gets thickened liquids and smoothies.  What is really great about their lids is that the mouth piece has been the perfect size.  It's not too big nor is it too small (perfect for X and his lip closure) and it's hard.  The soft spouts of other sippy cups turned Xavier off; I think because they still reminded him of a bottle. 

Daycare and other parents have loved Tilty Cup. I've bought Tilty Cup from these stores:

Amazon

Tilty Cup Online Store

One Step Ahead

I've also been told they can be found at Marshall's and TJ Maxx.

And you may think, what happened to all those other sippy cups that you bought?  Funny story.  In an effort to clean out our cabinets he took all of the other cups out and decided that they had to be put away with all the other baby stuff (in case there's another Byrd sometime in the future).  Great idea! What does he decide to put them in?  A brown paper bag.  This would not be such a bad idea had he not set the whole bag next to the OTHER brown paper bag that had recycling in it and then took it out to the trash.  Yep, all those sippy cups in the trash.  Well, the recycling.  At least the recycling. 

Sunday Sunday Sunday!

Race fans, hotrodders, 2 year olds!  Yep, Sunday is the day my bean turns into a sprout.  When he was smaller I always wondered how we would celebrate birthdays or do "normal" things?  What the hell did that mean?  Seriously, I thought that?!  We celebrate them just like anyone else...with ridiculous amounts of sweets, too many presents, and lots of love.

Round #1 of birthday festivities included Mommy (and her oh so bright ideas) to make some treats for school.  I wanted to make something fun but also enriching for the kids.  So I decided to make cake pops and cupcakes! Cake pops because they were just fun and cupcakes so the little ones who might be tube feed can squish them and play with them. Believe me, when your kid has special needs you look at everything as an experience.  The cake pops recipe came from Bakerella.  She is amazing!

My venture into cake pop making started Wednesday night with making the actual cake.  Thursday I go crackin' at 5 and didn't stop until almost 9.  The night actually went by fast because they were so much fun.

Without further adieu, I present the cake pops!

All ready for school!

And the afermath!

Where Has The Time Gone?

Where in hades has the time gone?  I've neglected this blog something terrible.  But beyond that days, weeks, and months have flown by!  In a few short weeks my bean, my little itty bitty boy will be 2!  The big t-w-o!  As I think most parents of children with special needs would agree, birthdays are bittersweet.  We rejoice in how far our children have come but parts of us are saddened that at 1 or 2 or 5 or 10 they aren't doing what their typical peers are.  Nonetheless, my electric boogaloo has gone from this:

To this:

That's pretty far in my book.  Xavier is far from a typical two year old but he is progressing on so many levels.  This is thanks in part to his therapists and his wonderful daycare. Not to mention his spirit and determination.  He's definitely taking in the world more.  So we will celebrate him and everything he is -- from  his crazy hippy hair and wobbly little head, down to little feet and stinky toes!





1st Day of School

Where has the time gone?  I don't know but summer's almost over and it's been forever since I posted anything.


Today was X's first day of "school" (aka daycare).  I much prefer calling it school because daycare sounds so gloomy to me.  And for a Mommy who was grump-tastic as this day approached, school is the perfect moniker.


Anthony did the drop-off and I will be the picker-upper.  I much prefer being the picker-upper.  I can run in and scoop my little Boogers up and whisk him away rather than handing him over to someone else in the morning and ripping my heart out.


A few calls from the daycare to check-in about things and to let us know he was doing well.  I know every mother goes through this whether they have a child going to daycare, kindergarten, highschool, or college.  But you throw your child having special needs on top of that and it's a bit harder.  Will he eat enough, will he get enough attention, etc. etc.  I know that of course he will.  After all he's at a Kennedy Krieger run daycare so I don't think they are going to starve my child or sit him a corner.  Nonetheless it's hard after 17 months to let someone else take care of your baby.  Good Lord what am I going to do when he does go to school? lol


Here he is with his teacher: