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.......

A Light At The End Of The Tunnel

I'd like to think most parents want their baby's first year to last forever.  We, on the other hand, wanted it over.  We had endured so much grief, frustration, depression, sadness, pain, and anger over the previous 12 months, we so badly urned for that, "light at the end of the tunnel".

(It'll be a little easier to make this blog a timeline) 

January 22, 2010 ~ Back to the Hospital
So far, 20% of Gwen's short life had already been spent in the hospital.  Here we were, back again.  This time to battle a high fever caused by a facial rash and an infection around Gwen's G-Tube.   Lucky for us, this was a short stay.  A little steroid cream, some anti-biotics, and 10 hours in the ER and we were sent on our way. 


February 05, 2010 ~ BFF's (Best Friends Forever)

I hate to sound like a broken record, but "normal" is rarely a part of our daily vocabulary.   However, today Gwen and I took our first trip to The Phoenix Zoo, along with Bella (Gwen's BFF) and Bella's mom, Jodi.  For those of you reading this not from Arizona....no that is not a rock behind Gwen and I, it is a desert  tortoise!

March 05, 2010 ~ Pneumonia, Facials and a Short Sale
Gwen had her first bout of pneumonia in the NICU and it decided to rear its ugly little head again and come back for round 2.  Fortunately Gwen enjoyed her breathing treatments,  or "facials" as Grandma Becky used to call them, since the mask was a little too large for Gwen's face.


Remember we put our house up for sale the previous summer?  Finally after 10 months of paying (that's right) for a house we were no longer living in, 2 offers, a dedicated realtor (shout out to Mrs. Rosie Fryrear!), and being the "short sale guinea pigs" of our time and banks not knowing what they were doing, we SOLD our house!  


Jesse and I thought we would be able to purchase immediately, but little did we know that having 1 late payment (paid, but 3 days late) would put us in the same group of short sellers who opted to discontinue paying their mortgages.  For 1 late payment (mind you it was paid), we were penalized from purchasing for 2 years...still a little bitter about it!


Happy Easter ~ Egg decorating, 2 weird brothers, and biscuits and gravy!

    


June 30, 2010 ~ 16 ear  infections, excuse me 17 ear infections later....

The ENT (ear nose and throat) doctor finally gave us the go ahead to get Gwen tubes to control those nasty little ear infections.  Since birth, we had battled ear infections roughly every three to four weeks.  They'd come, they'd go, and they'd occasionally test positive for MRSA (remember she contracted it in the NICU). My understanding is anyone can be a carrier of MRSA and once you have it, it never goes away.  It just takes a weak immune system or infection to shows itself again.

July 03, 2010 ~ Moving out
After exactly 12 months of living with my parents, Jesse, Gwen and I found a new home to rent a few miles away from both grandparents.  It's a great little house on a lake (man-made of course).  When its not 150 degrees outside, we like to sit out back, listen to the fountain, and watch the ducks go by.

  

July 09, 2010 ~ Fishing + Family = A Reel Good Time ( HA HA!)

For the past 5 years, we traveled 4 hours northeast of Phoenix to Pinetop to relax and getaway.  It's anywhere from 20 to 30 degrees cooler than Phoenix, layered with lakes, pine trees, mountains, wildlife, and the best prime rib I have ever eaten in my life!  

Thanks to my father-in-law, brother-in-laws, and my wonderful husband, I have been introduced to the wonderful world of fishing!  I can't believe I just said that, but it's true!  I (and our dog Tanq) enjoy everything about it ...except for my father-in-law's gourmet way of eating his fresh catches.  Trout drenched in Italian dressing cooked in the microwave just doesn't do it for me!

August - December, 2010 ~  Football Season and the Holidays  

   

    

Weddings and Blessings 2010 ~ 
Congrats to all of our wonderful friends who got married and had babies!

            

  

            

                 

For those we lost........We love you, and we miss you. 

January 17, 2011 ~ It's my party and I'll cry if I want too!

The first year was a challenge, and we wanted it to pass.  Now, looking back, I wish Gwen would stay little forever!  

This 2nd party was a little less extravagant than last year's...the goat and the sheep went to a better place (may they rest in peace).   It was beautiful outside, so we brought the jumbo television out to the backyard, watched football (had too, it was playoffs) and ate Grandma Becky's Moo-Cow cake!

How Did We Ever Make It Through The First Year?

Leaving the hospital was both a blessing and a curse.  Up to this point,  Jesse and I felt robbed of all the "normal" things most first time parents get to experience.  Bringing Gwen home, was our first step to healing. 

We settled in, but soon began to miss the "luxuries" of the hospital.  There were no more doctors.  There were no more nurses.  There were no more beeping machines to monitor Gwen's stats.  


We became the "medical professionals".  We administered the medications.  We figured out Gwen's feeds with the Joey Pump.  We hovered over her while she slept to make sure she was still breathing.  I guess you can say......we were finally parenting.

Life didn't slow down.  Most days were spent going to the pediatrician, the neurologist, the gastroenterologist, the optomologist,  and any 

other -gist you can think of.  If we weren't driving to an appointment, the doorbell rang constantly.  For the first few weeks we had nurses visit daily to check Gwen's vitals, weight, etc. 


Due to the complications and outcomes Gwen experienced, she was eligible for the Arizona Early Intervention Program (AZEIP).  This program is set up to provide immediate assistance for children, ages 0-3, in need of  rehabilitative services including: physical therapy (PT), occupational therapy (OT), and speech therapy (ST) to help them flourish and thrive.  

When it seemed things couldn't get anymore stressful, they did.  We noticed Gwen begin to roll her eyes towards the back of her head frequently.  Anytime we went from a light environment to a dark environment or vice versa she would arch and extend.  For sure I thought she starting seizing again.  


After an EEG produced no seizure activity, the optomologist confirmed she had cortical blindness (the total or partial loss of vision in a normal-appearing eye caused by damage to the visual area in the brain's occipital cortex. This damage is most often caused by loss of blood flow to the occipital cortex).  Of course all I heard was "blind".  I left the doctors office hysterical!  I remember calling Jesse sobbing, "she's blind, she's blind"!  Why God?!?  Why?!?  


Grandma Linda (Jesse's mom), had a connection to the Foundation for Blind Children and we started getting "vision therapy" once a week.  We learned Gwen is not blind.  Her eyes are perfect and in good health, but the damage to the visual center of the brain (occipital cortex) makes it challenging for Gwen to process what she sees.   


We had no choice but to get Gwen the services she desperately needed and that meant a lot of travel time.  This wouldn't be such a big deal, but Gwen HATES the car seat. Whether it is a five minute drive or an hour drive, it involved lot of screaming, a lot of gagging, a lot of choking, and a lot of vomiting.  After enough instances of turning blue, we now carry around a portable suction machine to keep Gwen from aspirating on her vomit and keep her airway clear.

After 6 months, anxiety got the best of us and we reached a breaking point.  We were mentally, emotionally, and physically drained.  We needed to be closer to our family.  We needed to be closer to our support system.   Due to the economy, we weren't in any position to purchase another home, so we moved in with my parents 4th of July weekend and placed our house up for sale.  (I don't think they were too upset about it :)). 

August 7, 2009 ~ Gwen took a turn for the worse. 

After months of medicinal treatment, Gwen's reflux had become so bad she was admitted to the hospital for dehydration.  The doctors monitored her for a week and decided it be best she have a nissen fundoplication.  (A surgical procedure to treat gastro-esophageal reflux disease and hiatus hernia, usually performed when medical therapy has failed.  The upper part of the stomach is wrapped around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter).  During the same surgery, the doctors also repositioned her G-tube to a new location.  The original  placement of her first G-tube had migrated underneath her rib cage.  A few days of recovery and we were back home.

September - December, 2009 ~ Football Season and the Holidays!

 

January 02, 2010 ~ Gwen's Baptism (#2).

Since we had the emergency baptism for Gwen in the NICU, it was very important for Jesse and I to experience a formal baptism.  Almost 1 year later, surrounded by Gwen's Godparents, Aunt Kelly and Uncle Jon, our family, and our friends, Gwen was baptized at Saint Mary Magdalene. 

      

January 17, 2010 ~ I can't believe we have a 1 year old!

Quick back story: Uncle Jon and Uncle Kevin thought it would be hilarious to give Grandma Linda a 400 pound billy goat and 200 pound black sheep for her birthday a couple months prior.   Since Grandpa Merle already had his collection of chickens and bunnies, we took full advantage of the live props and threw Gwen an "Old McDonald" themed party complete with petting zoo!  


Sheep cake courtesy of Grandma Becky!