Thursday, January 31, 2013

Working Hard!

Here's Tessa working hard at auditory/verbal therapy last week.  
I don't think I've ever seen her lift a toy with her arms like this!  It was so cool to see and she was doing it all by following verbal commands!




Good job Miss Tessa!  I'm so proud of you!!
~Whitney

Some Preciousness

Sometimes all she needs is her Daddy...



Wednesday, January 30, 2013

So Thankful!


I've been staring at these pictures off and on all week...just imagining all the circles our Little Miss will be doing around us in this kitchen. A very unique, simple design...no crazy island barriers in the middle or tall, curvy breakfast bars...just straight lines and clear paths for a walker and power chair to travel!!

So thankful to the Lord who gives us hope and a future!! Jeremiah 29:11



~Whitney

Monday, January 28, 2013

Party Dinner

Parker absolutely LOVES 'the place with fire'...so a Japanese restaurant it was for his birthday dinner!
Again, so thankful for friends and family that helped us celebrate our sweet big boy!





~Whitney

Paker's Birthday Fun!

So many memories! And so much fun!!







 
 








It is so hard to believe we celebrated our little man turning 5 this last weekend!!  So thankful for sweet family and sweet friends that helped Parker feel so very special!! 

 ~Whitney



Our Sweet Boy is 5!!!

The cutest, sweetest and funniest little boy we know turned 5 today!!
We are so blessed!

Happy Birthday Parker Gage! 
Mommy, Daddy and Tessa love you sooooo much!




I found some old pics & videos....I must....I just must!

















9/29/2008 Giggles

12/15/2008 Walking 

12/15/2008 Walking & Squealing

1/3/2009 Happy & You Know It


3/4/2009 This Little Light of Mine

4/6/2009 Parking Yelling in the Kitchen

4/9/2009 Mommy & Parker's 'Quiet' Conversation ;)





Let's Rock!

Jeremiah 29: 11-13
11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.  

In March 2011 we put our home of almost 5 years, on the market, with our 1st priority to get into the Yukon School District and our second priority to find/build a home to help meet Tessa's needs.  Over 400 days later, we finally sold our 1300 square foot home.  In June of 2012, we moved into a slightly larger rent home with 1400 square feet.  Since our move, we have acquired new equipment for Tessa.  We have her bath chair, her Stander, her loaner Power Chair, her KidsFast stroller, and most recently added, her Tumble Form seat and Kidwalk Walker.  The most disappointing aspects of having all of this equipment are the limitations she experiences because of lack of space.  It is very difficult to be limited to our front driveway when we are trying to give Tessa opportunities in her equipment.  We have been told over and over again by therapist after therapist....it's all about opportunity, opportunity, opportunity!  Giving Tessa chance after chance to explore her independence and discover her freedom in her equipment is what it will take for her to begin to navigate the world around her in her own ways.

We have had lots of time to consider what kinds of modifications we would make to a home that would help us provide Tessa with the opportunities she needs.  Our goals...space and functionality.  We have been doing research for the last two years on Universal Design and specific ADA requirements.  The idea of building a home felt daunting, but necessary.  Recently we learned that our opportunity to build was being pushed back a year or two...so we decided to explore what was currently on the market.  It felt impossible, without some major re-work to most existing homes, but we have realized that space alone would be the very greatest modification at this point in time, and potentially for many many years to come.  We've been looking seriously since just before Christmas and Darin has reminded me over and over, that it will either 'be' the house or it won't.  We took some time in each home we looked at, to determine the necessary changes right off the bat, and the potential for changes in the future.  At times, it was very overwhelming...and had me reverting back to our original plan to build.

Two Saturdays ago we went our with our realtor and looked at about 10 homes.  Looking at pictures online serves very little purpose for us...we can't tell anything until we see measurements of hallways, doorways, and determine maneuverable space for Tessa.  One by one...there was minimal potential, things that might work...but would basically be a bandaid for now.  Even though our goal is a good, functional home for Tessa...it is not at the expense of being able to provide for our family or risking the peace and joy we find in staying in tune to God's will for our lives.  We strive to meet big decisions like this in our life with continual prayer and our deepest desire to truly only walk through doors we feel have been opened by Him, not ones that are opened as a result of our selfish desires or agenda for our own lives.

Well, the second to last home we saw...let's just say, it 'be' the one ;)  At almost 1,000 more square feet than the home we're in now, it is more than Darin and I could have ever dreamed of.  Instead of the 22-24 inch hall bathroom doors that we have been used to...it has 32"...ADA Fact: 4.13.5 Clear Width.  Doorways shall have a minimum clear opening of 32 in (815 mm) with the door open 90 degrees, measured between the face of the door and the opposite stop.  And all bedroom doors are 32".  The hallways measure 42"... ADA Fact: 4.3.3 Width. The minimum clear width of an accessible route shall be 36 in (915 mm) except at doors (see 4.13.5 and 4.13.6).  So, the hallways are actually 6 inches wider than we would have probably built in a new home! Wow! And well, with regard to maneuverable space...ADA Fact: 4.2.4.2 Relationship of Maneuvering Clearance to Wheelchair Spaces. One full unobstructed side of the clear floor or ground space for a wheelchair shall adjoin or overlap an accessible route or adjoin another wheelchair floor space.  If a clear floor space is located in an alcove or otherwise confined on all or part of three sides, additional maneuvering clearances shall be provided.  This existing home literally has everything we need and more.  

My favorite two pictures are below.  The first picture is standing at the kitchen sink, looking out to the entry way, all the way through to the living room.  And you may not even notice...but that little bitty piece of equipment in the middle...well that's Tessa's rather bulky Kidwalk Walker.  This picture is the epitome of functional space...freedom...for Tessa.  I spent quite a bit of time down on the floor by the entry way, feeling the floor...why?...well, the flooring transitions from tile, to wood, back to tile...the blessing?...there are absolutely NO thresholds where the wood and tile meet - completely smooth.  This is a huge thing for a little tike that has a very difficult time maneuvering her walker.  The absence of thresholds, eliminates an obstacle and the potential for any corresponding disappointment.  The result...freedom, independence, opportunity without limitations!  The next picture...well that's the pantry in the kitchen.  It may just look like any other pantry...but I about cried when I opened it up.  The two bottom doors each open up to 3 accessible pull-out drawers...and once again....more freedom and independence for Tessa.  It is a newer reality as Tessa is beginning to like big-people food...and the profound idea that she could drive her power chair, or walk her walker, over to the pantry, open up the door and pull out a drawer and CHOOSE what she wants to eat...absolutely thrills my heart.  


It is so much easier to talk about blessings regarding restored health, achieved milestones, or any other of God's provisions our life.  It is not so easy to discuss blessings having financial implications...but to leave this part of our story 'off-the-record' would not be consistent with my desire to share what the Lord can do in our lives.
We are anticipating that we will be receiving Tessa's new power chair here in the next few months.  We have to consider the fact that we will be releasing a 3 year old in a 230 lb piece of powered equipment in a matter of months...the amount of experimental interior space necessary for this kind of discovery has always been so overwhelming.  Yes, we could have always allowed Tessa opportunity outside on our driveway to 'play' in her chair...turning circles and trying to chase her brother.  But, we want more for her.  We want her to be able to go find her brother back in his room if she wants to see him, we want her to be able to go from the living room to the kitchen to come help me cook, we want her to be able to go back to her room and pick a toy from her closet, we want her to be able to get into her bathroom all the way up to her potty when she's ready for that big step, we want her to be able to CHOOSE when and where she wants to go.  Laying stationary in her her nap nanny or sitting in her Tumble Form seat is not where she belongs...she deserves hope and a future!  Tessa has the potential to achieve much and our prayer is to be able to provide much as the Lord provides for us. 

So, with God's promise in Jeremiah 29:11....Let's Rock!
~Whitney

I've been sitting on this post for several days now...waiting for everything to fall into place.  As of a few minutes ago, it did!  It is so difficult to describe what this kind of provision means to me and Darin for our family, for Parker and Tessa.  We are humbled by God's provision in our lives...big and small...and pray that we continue to move forward as faithful stewards of His blessings.


Wednesday, January 23, 2013

Expectations & Doubt

So, we have been super busy. And definitely an unexpected kind of busy.  Things have been going really good and Tessa is making incredible progress these days.  Parker will be 5 on Monday! And things should start picking up with Tessa's transition to school coming up on her 3rd birthday, April 8th.

I've been thinking a lot about expectations and doubt.  What I have decided is that both tread very heavily on any journey of faith.  Obviously our faith involves trusting the Lord...in the good, the bad and the ugly.  The standard disruption of this very concept seems to be doubt.  Simply, if we are facing doubt, we aren't trusting that the Lord will see us through.  I try to combat my doubt, with my faith.  The other thing I've come to realize, is my struggle with expectations.  I am finding them to be equally devastating to my faith.  I'm not sure there is a realm in my life, other than my blessed journey with Tessa, that I don't create and rely heavily on expectations.  It is pure evil.  I didn't just wake up today and realize my struggle with expectations...it has been developing for many many years.  And I do not foresee ever fully being able to squash it, but what I do see, is that in the mere acknowledgement of it's power in my life, I can find some freedom from its grip.

It might sound strange to you, considering it is very strange to me, that many of the things I struggle with in almost every aspect of my life, don't tend to exist when it comes to sweet Tessa.  It is odd, but at the same time, it's not.  In the hospital, the day Tessa was diagnosed, Darin and I talked and prayed and immediately gave Tessa, and everything Tessa, to the Lord.  We could not do it alone.  We knew we could never walk out of the doors of that hospital, knowing what was ahead, and attempt any of it alone.  I have the very example of faith, trusting the Lord, and giving things over to Him, in this realm of my life....but the areas that it doesn't exist, are the ones that I selfishly choose to stay in control of and falsely believe I am competent and qualified enough, to walk in them alone.

I have to pray every day for the Lord to reign in every aspect of my life.  I have to pray for the day that the lessons I have learned and the freedom I have experienced will permeate every facet of my being.  I fail every day.  Sometimes I hide behind just being 'a detailed person' or 'planning it all out because that's what responsible people do".  Let's face it, this is control.  There is a healthy dose of it to be had, but when the light of freedom gets darker and darker...we can safely assume it's in excess.

I believe the Lord values our effort.  It's not about a prize, it's the pursuit.  If we have trusted the Lord, I believe He shows favor and extends forgiveness when we at least try to embrace the lessons He teaches.    And even though I will continue to fail, over and over again, I am so thankful for His endless love and mercy for someone like myself, desperate to walk fully in His grace.

My goal today is to have lightly-treading expectation and doubt, so the Lord can begin to restore me to a fuller journey of faith.

~Whitney

Friday, January 18, 2013

Giggles of Accomplishment - Never Gets Old!

Still trying to get Tessa's very own power chair ordered.  They have requested video of her using the one from the study...and I've watched it over and over again since emailing it on.

Absolutely love this!
Her giggles of accomplishment will get me through today!






~Whitney


Tuesday, January 15, 2013

To Fear or Not to Fear

For 27 years of my life I had such exceptional hygiene (sarcasm) that I avoided a funny little virus called CMV.  That cruel little virus decided that 1 of the 9 months of my 2nd pregnancy would be a good time to attack...and attack it did.  How ironic it would be to live my life in fear of what 'could' happen.  If it happens, it happens.  The Protector and Provider in my life has and will continue to enable me to live life without fear.  I am fully aware that my personal experiences have brought me to this point...but you don't have to have lived my reality to embrace the Promises that can encourage freedom from fear.

I was caught in a minor situation over the weekend that temporarily induced feelings of stupidity & embarrassment over the fact that I was not afraid when others around me thought I should be.  The situation itself was not all that significant, but it definitely got me thinking about this freedom.  We are all wired differently, we are all afraid of different things.  We hear all the time about 'conquering your fears'...and I believe some do in fact overcome certain fears by this very method.  I, on the other hand, have not conquered anything, I simply acknowledge my inability to conquer or control anything.  The freedom I have found involves the daily acknowledgement of my weaknesses and God's immeasurable strength in them.

For me, I believe it's a choice.  Just to wake up and choose today, that it is not me, it's Him.  The Lord is the one that protects us from things staring us in the face and from things hiding in our future waiting to attack.  He provides strength and wisdom when we seek it out and I believe, graciously offers provision in those moments when our weaknesses hinder us from requesting His intercession in our lives.

~Whitney

Monday, January 14, 2013

Curls!

I wanted to try something new with Tessa's hair over the weekend...and my attempt was fairly successful :)
She was a cutie-patootie for church Sunday morning!




 ~Whitney

Thursday, January 10, 2013

Exciting Exciting Stuff!

I'm a little behind...not super behind, but a little.  We had a huge-huge moment the Friday before Christmas....huge!  I got home a little early from work for a therapy session with Lori, our deaf educator (ironically enough).  Me, Tessa and Parker were all waiting for Lori to get there and for Darin to get home.  I had Tessa sitting in her tumble form seat facing the kitchen and we were just playing and Parker was sitting on the couch playing on the iPad.  We heard the front door open and when I saw Darin in the kitchen I signed and said to Tessa "say Hi Daddy" and right after, Tessa SAYS "Ha Da-da"!  Unmistakable!  Unbelievable!  We both just started screaming "Ha Da-da" "Ha Da-da"....and Darin comes running around from the kitchen up to Tessa, tickles her and kisses her and says "You just said 'Ha Da-da'!"  And right after that, Parker - just chillin over on the couch, looks up and says "How in the world did she just do that!" :)

It was huge, it was awesome, and we marked it: on Friday December 21st 2012, at 2 years and 8 months old, Tessa said her first words/sentence!  And just a few minutes later, Lori arrives...she may have missed the big moment, but she definitely got to share in all the excitement!!

A few other really fun things:  Tuesday evening I thought I'd try and see if Tessa wanted to try my Cheetos, sure enough, Little Miss Once-Upon-a-Time-Clamped-Shut at the idea of someone trying to feed her something out of their hand...after a little convincing and a little taste of the yummy-goodness, opened up like a little hungry bird and ended up helping me finish off all the Cheetos on my plate!  It was perfect!  Then last night we had pizza and I decided to try and chop a piece up to see if she would like it...and wouldn't you know it, she did! and she ate every bite off of a real fork.  Monumental folks, monumental.

It seems like when things start changing...it ends up being a bunch of things at once.  Talking, eating chips and pizza off a real fork!  And there have been a handful of other times where it really seems like Tessa is saying "Da-da" too.  Darin absolutely loves it, of course, and reinforces it with hugs and kisses and giggles each chance he gets.

I feel like I have lots of other stuff to catch up on, but this will do for now (this huge amazing bunch of awesomeness ;).  We all got hit with the nasty nasty flu this last weekend and it did a number on us.  Parker had it first, at the end of the week last week, but bounced back pretty quick.  Then it hit Darin and me at about the same time over the weekend and there was no bouncing back!  It is a challenging thing to both be down at the same time...I would have given anything to have had family close.  But we made it through, didn't feel like we would while we were in the middle of it, but we did.  And a huge blessing in the middle of it all, is that Tessa hasn't come down with it!  God is good!  Darin and I could barely take care of ourselves, there is no way we could have handled a sick Little Miss too.  We can't quite tell if she's coming down with it now, but we are definitely better able to handle things if she does.  Tessa and I both got the flu shot this year...didn't help me much, but really praying that is what is helping her fight it off!!

~Whitney

oh...and silly me....this is exciting stuff too:


and this is a little video I took of Tessa eating pancakes!  they are a little challenging for her, but she likes them so much and works so hard to eat them like a big girl!




Thursday, January 3, 2013

Physiatrist Update

Little Miss Tessa is growing up ~ all 23 lbs and 35 inches of her!  And with that comes the harsh realities that go along with cerebral palsy and generalized spasticity.  We had a follow up appointment with Tessa's Physiatrist yesterday afternoon and were so grateful to have Melody (Tessa's PT) come too.  We anticipate that the changes that have been happening to Tessa probably coincide with her recent growth spurt.  In the last year, she has fluctuated between 21 and 23 lbs and she has grown from 34 to 34 1/2 inches and then most recently, from 34 1/2 to 35 inches.  The combination of the colder weather and the growth spurt have made her quite the tight/stiff little girl.  This obviously makes everyday things a bit more challenging; like changing her diaper, putting her clothes on, trying to hold and carry her, getting her to stay positioned properly in her equipment, keeping her feet in the proper position in her dafos...etc.  But more importantly than all of that, is how Tessa's increased tone (or spasticity) is undoubtedly stressful, frustrating, and painful for her!  We just know Tessa would love to start using her new KidWalk more, but at this point, her spasticity is making it incredibly challenging for her.

I can remember, so clearly, the day she was diagnosed and her neurologist saying to us "the damage has already been done to Tessa's brain, but the way it affects her body will begin to look different over time".  Basically, as we begin to have more expectation of movement for Tessa, it might appear as if things are getting worse, but it's more that our expectations have changed and the effects of cerebral palsy are becoming more and more apparent.  Tessa's therapists have been noticing more and more instances where Tessa's tone proves to be an interruption to what she is trying to do.  Tessa will undoubtedly have to learn how to make her tone work for her...what doctors refer to as 'functional tone'.  For instance, she has gained so much control in her neck and trunk, and at times, if her head begins to fall forward...she will try and correct it, and when she does, she ends up thrusting her entire body backwards.  This is when the tone takes over, and instead of a simple recovery of her head falling forward, she ends up thrusting completely backward.  It is possible for Tessa to learn how to make her tone work for her, we've seen her do it, but there are instances where it is completely out of her control and that is when it's time to consider options to help her.

We discussed a couple of things yesterday, a systemic option, which would be an oral medicine that Tessa would begin taking that would affect her entire body, or the botox injections option, which would be an injection that would target a particular muscle to help achieve desired results.
I found some pretty good information at: http://www.mayoclinic.com/health/cerebral-palsy/DS00302
Medications that can lessen the tightness of muscles may be used to improve functional abilities, treat pain and manage complications related to spasticity.  It's important to talk about the risk of drug treatments with your doctor and discuss whether medical treatment is appropriate for your child's needs.  The selection of medications depends on whether the problem affects only certain muscles (isolated) or the whole body (generalized).  Drug treatments may include the following:
Isolated spasticity.  When spasticity is isolated to one muscle group, your doctor may recommend injections of onabotulinumtoxinA (Botox) directly into the muscle, nerve or both.  Severe weakness is a possible side effect.  There also is some evidence of more-serious side effects, including difficulty breathing and swallowing.
Generalized spasticity.  If the whole body is affected, oral muscle relaxants may relax stiff, contracted muscles.  These drugs include diazepam (Diazepam Intensol, Valium), tizanidine (Zanaflex), dantrolene (Dantrium), and baclofen.  There is some risk of dependency with diazepam, so it's not recommended for long-term use.  Its side effects include drowsiness, weakness and drooling.  Side effects of tizanidine include sleepiness, weakness, low blood pressure and liver damage.  Side effects of dantrolene and baclofen include sleepiness.  Baclofen may also be pumped directly into the spinal cord with a tube.  The pump is surgically implanted under the skin of the abdomen.

Under the "Complications" section it addresses the following:
Muscle weakness, muscle spasticity and coordination problems can contribute to a number of complications either during childhood or later during adulthood:
Contracture.  Contracture is the shortening of muscle tissue due to severe tightening of the muscle (spasticity).  Contracture can inhibit bone growth, cause bones to bend, and results in joint deformities, dislocation or partial dislocation.

The reason the 'Complications' section is helpful, is because this helps explain what it is we are trying to help Tessa avoid.

This is not a good stopping point, but it's all I've got for today...but it's a fairly good recap for me ;)

~Whitney



Wednesday, January 2, 2013

Made My Night...

It has always been obvious how much little Tessa loves her big brother...
and I was able to capture it pretty perfectly last night :)

This was in anticipation of one of many kisses she received!

~Whitney

Growing & Still Laughing

This was just the other evening while we were all just hanging out at home.  We still aren't exactly sure what she was laughing at, but she kept us all highly entertained :)

And of course the video is completely black except for her tiny green flashing lights from her CIs, but to turn on my flash would have meant total distraction and no video ;)


It's funny how you can tell, just by her laugh, that she's growing up...it's changing...it's just as beautiful as it's ever been, but more of a big-girl laugh. 

~Whitney