Just Another Day in Paradise...

Or just another day in the life of a busy stay at home AND GO GO GO mom. ..

It’s been a busy week and it’s only Tuesday (technically it's almost Wednesday). Austin has been having a difficult time in Physical Therapy. He’s unable to concentrate and appears to be seeking out movement. This is often referred to as “Sensory Seeking Vestibular Sensations.”  Our awesome PT mentioned that his behavior seemed to coincide with some type of sensory issue. THANK GOD she noticed because I was convinced my child had endless energy and no fear.  I emailed our OT to discuss and she gave me some helpful tips that can be implemented in Austin’s daily routine.  I LOVE LOVE LOVE our therapists! I know I've stated this before, but words cannot descrive how awesome they are.

Some of Austin’s behaviors are age appropriate. However, a lot of his behavior coincides with a Vestibular Hyposensitivity.  I was never alarmed because Austin never seemed to shy away from bouncing, being thrown in the air, playing “airplane” or any type of activity that involves vigorous movement.  I thought Austin was “really tough” because he rarely seems to notice when he falls down, runs into something, etc. In fact, he laughs when I think he should be crying.  I also thought he was a “dare devil” because he literally seems to have no fear (yet, he’s careful in his own way when doing these fear filled activities- if that makes sense?)  He also LOVES the therapy swing (the kind where he’s basically wrapped up in a sheet and cannot see anything.)  Apparently, this type of movement calms him down. His OT had him in the swing for 10 minutes this morning and when she took him out he was incredibly calm and much less hyper. It was actually AMAZING to see.

There are other activities that we are going to incorporate into his daily life that will help him with this sensory issue. I believe I read (although I cannot recall where?) that all children with hypotonia (low muscle tone) have some type of sensory issue or issues.  I’m not sure if that statement is entirely true- as I don’t remember the source. It’s interesting to ponder though.

 Here are a few “traits” of a  Vestibular Hyposensitivity:

• Loves amusement park rides (he will when he’s old enough)
• Described as hyperactive – always running, jumping, and hopping (YES! He’s also been described as a “handful.” I prefer the term “hyperactive.”)
• Engages in rocking or rhythmic movements (Not that I’m aware of? At least not on his own? He likes to be rocked…but doesn’t rock himself necessarily.)
• Trouble sitting still or staying seated (Yes! However, would this not describe most 2 year olds?)
• May vigorously shake head or rock rhythmically (Sporadically, at most.)
• Crave intense movement including jumping, upside-down positions (YES!!)
• Enjoy swinging very high (The higher the better!)
• Loves seesaws, teeter totters or trampolines more than other children (YES!!)
• Can’t seem to sit still (Again, this describes most 2 year olds?)
• Likes spinning in circles (I suppose he does? He likes it when I’m holding him and spin in circles.)

I feel like I’m constantly on the GO! Austin goes to bed around 8:30. I can usually muster up enough energy to answer a few emails, fold laundry, take a shower and maybe watch a few shows on the DVR. It doesn’t look like things are going to slow down anytime soon- so we will just take everything in stride and keep on, keepin’ on.

It looks like I had time to update my blog tonight- which is always a plus! Life is good. God is great!  Until next time…

Sweet Summertime

We had a busy and fun 3-day weekend!  While it’s technically not summer, the temperature outside says otherwise.  Austin LOVES to be outside. In fact, I’m pretty sure he’d stay outside all day long if I let him.  We love to swim and go to the park. 

Here are some pictures from our Memorial Day Festivities.  

                                           

Our Precious Abby

Last year, we had the amazingly wonderful experience of meeting Abby and her beautiful mom, Jenn.  The Down syndrome community goes beyond being local. We’ve formed close friendships from all over the country thanks to the Down syndrome group on Baby Center. Jenn and Abby live in Michigan, but visit McKinney about once a year to see family. Last year, we met up at my our very favorite mall in Frisco. 

                                                Abby and Austin (MARCH 2011)

 This year, Abby did not accompany Jenn.  While we missed seeing Abby, it was SO good to visit and catch up with Jenn. For those who don’t know, Abby has an incredibly rare blood disorder. It doesn’t even have a specific name because it’s literally unique and one of a kind to Abby. The only thing I can compare it to is Leukemia?  The only exception is that the Doctors don’t really have any answers or solutions. Every stuffy nose or spiked fever can be life threatening for Abby. Jenn explained that Abby doesn’t even cry anymore when having her blood drawn because she’s used it. It’s heartbreaking! Abby is such a little fighter. You’d never know by looking at her that she has this rare disorder. Jenn also said, “It’s not Down syndrome that poses challenges- it’s this rare blood disorder.” Of course, Jenn is SUPER MOM…and I’m pretty sure she knows MORE than the doctors do at this point concerning Abby’s blood disorder. She’s constantly researching, but it’s still frustrating when the doctors still don’t have any answers.

We spent a few hours at The Cheesecake Factory catching up with each other, laughing and venting about stuff only WE can understand. As our visit came to an end, we decided to make Austin and Abby matching bears from Build-A-Bear.

Please keep Abby in your prayers. She’s such a smart, beautiful and miraculous little girl.

WE LOVE YOU, ABIGAIL!!

Shrine Circus 2012

We went to the Shrine Circus last weekend with our good friends, Rachel and Mr. T (Miss T's awesome big brother.)

I have a confession to make: I had NEVER been to a circus before. I grew up in small town in the Texas Hill Country. The only “attractions” that came to town were those creepy carnivals in the mall parking lot.

I wasn’t sure WHAT to expect from the circus?  However, I was excited for Austin to experience it. It also helped that Mr. T was a circus veteran- so he showed us the ropes!  We had SO MUCH FUN!  I wasn’t sure how Austin would handle it, but he LOVED it! Needless to say, I will keep my eyes out for tickets next time the circus is in town.

Playing with his circus toy!

He was SO EXCITED!!

Eating a snack and waiting for the show to start!

The animals are SO BIG!

                                             

Happy World Down Syndrome Day

Today is VERY special. It’s WORLD Down Syndrome Day! Why 3/21? Well, every individual born with Down syndrome has 3 copies of his/her 21^st chromosome. Those of us that were not born with Down syndrome only have 2 copies of the 21^st chromosome. Individuals with Down syndrome have an extra copy. I’m pretty sure that extra chromosome is all the extra good stuff-sprinkled with an extra dose of STUBBORN. 

Austin has opened my eyes to a completely different world. It’s a beautiful world with acceptance and love. He has made me more aware to the fact that those with disabilities have strengths and weaknesses just like all of us. Disabilities (in general) have far too many stereotypes. People don’t understand. Therefore, this different life that we lead must be filled with heartache, sadness and grieving the child I thought I would have. In honor of World Down Syndrome Day, I would like to set the record straight. Our life is anything but sad. It’s busy and some days are crazier than ever- but I still wouldn’t trade my sweet boy for anything. Would he have the same sweet laugh without that extra chromosome? Would he make silly animal noises without that extra chromosome? Would he be the smart little boy who tries to use his cute smile to get out of working during his therapies? The truth is that I don’t want to know what he’d be like without an extra chromosome because he wouldn’t be Austin!

He was fearfully and wonderfully made. The traits of Down syndrome that some see as “imperfect” are beautiful to those who love him. Most of all, they are beautiful to his Lord and Savior. We get a lot of “second glances” while out in public. Most of our encounters with other people are pleasant, but there’s always the occasional not so pleasant encounter. You know, those dreadful looks of pity or even sadness.  If they only knew…I don’t need pity or sadness. In fact, I feel sorry for those who are so misinformed and uneducated. Our life is much more “normal” than you would ever guess.  Most of all, we are so thankful to God for making Austin extra special.  I’m not really sure that HE is the one who faces more challenges in this world...perhaps it’s those around him who are misinformed? Get informed! Educate yourself!

Happy World Down Syndrome day to all of our friends with an extra chromosome. We are so blessed to have such an amazing group of friends brought together all in the name of that sweet chromosome.

Austin's 2!

Austin turned 2 on Friday. My sweet boy had a big birthday bash at The Ark (part of First Baptist Church in Coppell).

This was taken at Austin's Birthday lunch with Nana and Mommy :)

I saved the best for last:

WE HAVE A WALKER!

 

Where have we been?

Life has been crazier and busier than usual lately. I feel like I say that all the time, but what can you do? The truth is boring.

It's hard to believe that Austin will be 2 in 10 days! Where has the time gone?

Austin has been dealing with chronic sinus infections since the end of October. We should probably have our own room at Dr. C’s office because it has been like a second home over the past 2 months. We’ve seen the ENT and visited the allergist today. They performed the skin test on Austin. I was hoping this would give us answers AND A SOLUTION. It’s a good thing I didn’t hold my breath because the results of the allergy testing left me with more questions than answers. The allergist is the second doctor to tell me, “Sorry, there’s nothing we can do.” (The first was the ENT)  Unfortunately, there’s just not a lot they can do (as far as testing) with younger children. Austin tested positive for allergies to the following:

Trees (Cedar, Mesquite and Red Oak)

Grasses (Meadow Fescue, Timothy)

Weeds (Dandelion, Ragweed)

Miscellaneous (Dogs, Cats)

Apparently, even though Austin tested positive for these allergies (particularly dogs/cats) it really doesn’t “mean anything in everyday life.”  The allergist said there’s no reason to avoid dogs/cats. This makes me feel good because Austin LOVES our dog, Cagle and vice versa. All of the positive allergies are mild, according to the scale- except for Cedar. Austin has a moderate allergy to cedar.

What did we learn today? You can test positive for an allergy, but it doesn’t really mean anything.

Ugh. And don’t even get me started on what we were told about his RED cheeks. The allergist said he thinks Austin’s red cheeks will “go away” once he stops putting his fingers in his mouth because there’s acid in the mouth and he’s rubbing it on his cheeks. That is, hands down, the most ridiculous reason for a child having red cheeks that I’ve ever heard. Toddlers put their hands and EVERYTHING else in their mouth. It’s age appropriate. So, why don’t ALL toddlers have unexplained red cheeks? I have to stop now before my brain explodes.

Austin continues to amaze me, his father, family and all of his therapists. His mind is truly like a sponge…he holds on to everything he learns and sees. He’s using sign language (finally!). So far, we don’t have very many words, just “Mama” “Mom” “Dad” “DaDa” “Bubble” “No”. However, Austin comprehends A LOT of words/phrases. He follows directions (when he wants to.) If I ask him to bring me his shoes, book, toy or some other various object, he will. He does the motions to several songs. He puts his hands in the air for “up” and puts them down for “down.” He walks 50% of the time. His PT and OT have both had to write new goals for him.

Here are some pictures to catch you up: