Do You Know What I Know?

Last night while everyone was asleep

I looked out my window, up through the trees

The sky was so big and covered in stars

I knew a baby brother or sister soon would be ours

Hey Ho, our family of three

Is growing beyond my mommy, daddy, and me

Hey Ho, just how will it be

When we add another branch to our family tree

I’ll be the protector, so strong and wise

I’ll be the cheerleader always by his side

This cute, little baby will soon enough see

No one could love him any more or better than me

Hey Ho, our family of three

Is growing beyond my mommy, daddy, and me

Hey Ho, just how will it be

When we add another branch to our family tree

I’ll teach him all the things I’ve learned along the way

I’ll help him blow out the candles on his first birthday

We’ll grow up together, side by side

Take care of one another - full of love, full of pride

~Family Tree by Frances England

Merry Christmas Everyone!

When I Grow Up I Want To Be Just Like My Mom

Every year Gwen gets to pick out the color and fabrics of her Christmas dress and then Gwen's very own elf, "Grandma Magee" dazzles us with her amazing sewing talents. 

       

This year's accessory.....a matching "drool" shawl ;)!

Mom, you blow me away and I can't wait to be just like you when I grow up!

Everybody Needs A Little Time Away

Being a parent is stressful.  Being a parent of a special needs child can be down right crippling.   Fueled by depression, anger, isolation, regret, and blame, not only can it break you as an individual, it can take a huge toll on a marriage.  


With everything Jesse and I had been experiencing, it was suggested that we see a counselor.  We went.  We went every two weeks, then monthly until our counselor told us how amazing we were actually doing and she didn't need to see us anymore....   

We still have our moments of weakness, but I think the reason Jesse and I have been so successful since having met with a counselor, is because we have such an INCREDIBLE support system!  

During our sessions, our counselor told us the importance of getting away, just the two of us.  From dinner and a movie, to one night away, to a weekend excursion.  We just needed to be alone with eachother without any distractions. 


Vacation #1 ~ June, we met our dear Seattle friends, Daryl and Tina, in Portland, Oregon.  


Popularly known as “The Grotto”(http://www.thegrotto.org/), our first stop was The National Sanctuary of Our Sorrowful Mother, a 62-acre Catholic shrine and botanical garden. 

Portland has some delightful farmers markets and it is there where we found the most delicious breakfast item ever created! Pine State Biscuits (http://www.pinestatebiscuits.com/): Fried chicken breast topped with apple butter, smoked bacon, and cheddar cheese all housed in the fluffiest, moistest, buttermilk biscuit!

Our next destination was Huber's Cafe (http://www.hubers.com/) for a Spanish Coffee (70% alcohol, 25% coffee, and 5% cream).  It's quite spectacular just to watch the bartender concoct this drink (you can find it YouTube)!  Oh and we couldn't pass on the infamous hot turkey sandwich!   

    

We booked a brewery tour to consume some of Portland's finest ales and then we stopped by The Grilled Cheese Grill (http://www.grilledcheesegrill.com/) for some of the best grilled cheese sandwiches known to man!  And finally we finished the night off with dessert from VooDoo Doughnuts (http://www.voodoodoughnut.com/).

 

Rounding out our mini vacation, we visited the tallest waterfall in the state of Oregon, Multnomah Falls.

Thank you Daryl and Tina for a wonderful stress free weekend!

Vacation #2 ~ August Family Vacation.

Just because our daughter is disabled, doesn't mean she should be deprived of all of the wonderful things this world has to offer!
Along with some helping hands (Grandma and Grandpa McDonald, Uncle Cody and Aunt Diana), we drove out to La Jolla, California and rented a condo for the weekend.  


We made it a point to spend as much time at the beach as possible.  We know Gwen loves water, but we were a little nervous that the ocean water would be a little too chilly!  I took Gwen down to the shoreline and I held her close as we waited in anticipation for the waves to come crashing in.  Once the waves hit and pulled the sand back through Gwen's toes, she let out the biggest laugh we had ever heard!   It's those little things that can be so gratifying: ).


For the rest of the weekend, we soaked up the sun, did a little boogie boarding and kayaking, walked along the beach, and watched perfect sunsets.

   
Vacation #3 ~ Family and Football (September).

Jesse and I hopped on a red-eye to South Bend, Indiana for the........

Notre Dame v. Michigan State Game!

We toured the most beautiful campus, the Basilica, the stadium, and the grotto. Oh and I can't forget to mention Jesse shook hands with great Dickie V (sports commentator Dick Vitale)!

Game day we tailgated with the pro's (seriously, they know how to do it out there) and then headed into the stadium to witness a Notre Dame VICTORY!

After the game, we drove four hours north to visit my grandma and extended family in Michigan!

Thank you "Weekend Warriors" for watching Gwen and allowing us the opportunities to get away!

Trick or Treat

Little Gwen Peep and her sheep would like to wish everyone a safe and Happy Halloween!

Gwen put on her apron, picked out the perfect pumpkin, gutted it, mommy carved it, and then mommy decided to be funny and make a Gwen-O-Lantern.......

    

Slow and Steady Wins the Race

When Gwen was a baby,  it was easy to shrug off people's comments.   To the outside world it appeared as though her limp noodle of a body, draped over her daddy's shoulder seemed burned out from an eventful day.  However, it was quite the opposite.  More than likely Gwen just had 12 hours of sleep and was ready to go!  When people said, "oh she's so sleepy", Jesse and I usually nodded with a "yes"....it was just easier than explaining what was really going on.                                                                                          

As Gwen's grown older, bigger, and more difficult to handle, so have the questions.  Gwen's two (almost 3) and people just assume she's talking and running all over the place like any toddler would be.  How easily people's cute anticipation turns to utter confusion when I tell them she doesn't crawl, she doesn't sit, she doesn't walk, she doesn't talk.  I can't fault people for asking stupid questions.  In fact, I welcome the stupid questions versus having people stare at Gwen like she's some kind of sideshow (really, it's true)!

Cerebral Palsy (CP) is a hard diagnosis to understand. Someone with a a brain injury can be high functioning, low functioning, or can be middle of the road.  Gwen would be categorized as low functioning and completely dependent upon others to do things for her survival. What's most frustrating as parents is that Gwen's body wants to go places, but her brain has a difficult time connecting all of those switches  to turn those movements/actions/reactions "on" and "off".

Thanks to the multiple therapies Gwen receives weekly, we're learning more and more ways to help her learn to use her arms, legs, hands, mouth, vision, etc.  

We started working with Gwen in oil and blue light.  We work in a dark (sometimes in natural light), silent room with only a blue light.  We lye Gwen on her tummy on a piece of plastic and place oil on her arms, legs, and belly.  There are no distractions, no white noise, nothing for Gwen to concentrate on other than her body's movements.  Gwen's legs are amazing!  She moves her legs in a crawling motion and scoots, but she hasn't quite grasped the same motion for her arms and hands.....but we're working on it!

After oil, we transfer Gwen into a tire inner tube that hangs about 6 inches off the ground and we turn on a heartbeat sound.  The shape of the tire puts her body into flexion simulating being back in the womb.  Since we can't always go to the school for therapy, our therapist gave us instructions on how to make an in home "tire swing".  For never building one of these before (or anything for that matter), I give myself an "A"!
Since Gwen spends a majority of her time laid out either on her back or her tummy, our therapists have taught us the importance of Gwen being in flexion to familiarize herself with her arms and legs and to help calm her nervous system.


Our physical therapist found a perfect solution for Gwen to be independent in flexion.  A European bath tub.  I squirmed at the sight of Gwen in what appeared to be a "trash can", but Gwen loved every second of it!  Even more so when her BFF Bella would help during bath time!  It was at this moment we learned Gwen's love of water.  She'd spend hours in her "trash can" if we'd let her.

I started scouring the Internet looking for other "water therapy" ideas.  Sure enough, I came across a neck float and an upright pool.  To some it may look like a choking hazard, but it's been a life saver for us!  It enables Gwen to have a sense of independence and free reign to move all of her limbs.  During the cooler months we set up shop in our guest bathroom.  Once summer comes, Gwen turns into a little fish spending at least 4 days a week in the pool.


When it comes to play time, most of Gwen's toys light up and make music.  Most everything is done against a black background or in her vision box to help cut out any outside stimuli. She does not reach or grab at things, but she does swap at them.  What's exciting for us is that she's slowly starting to relax her clenched fists to grasp things...it's those little things!


Fortunately we have access to try different positioning options for Gwen.  Since she can't sit or stand on her own, we use a high density foam chair (Tumbleform) and a stander.

           

The greatest challenge for us continues to be feeding.  We'd hoped for a miracle by now that Gwen would be able to eat a cheeseburger or french fry, but that's just not the case.


Gwen will eat very small volumes by mouth (ice cube size) before she becomes too fatigued,  gags, or puckers her lips so tight you can't get anything in there!  What she can eat needs to have some consistency: baby food, purees, oatmeal.  If we just put water in her mouth, she'd aspirate and gag instantly.  Until she's able to get more caloric intake orally, we'll have to keep the G-tube.

We started taking Gwen to the dentist around 18 months because she didn't have any teeth yet!  I was mildly panicking because she wasn't chewing on anything to help those suckers break through so I thought for sure they would have to slice her gums.  Sure enough they starting sprouting shortly after that visit and now that she has all of her teeth we're opening her up to foods with texture: baby Cheetos, biter biscuits, puffs, yogurt melts, spaghetti-o's.


We have come a long way, but the journey continues.......