Big-Girl Decor

Well, after 5 years of looking at the same nursery decor...I was thrilled to unexpectedly fall in love with some big-girl decor over the weekend!  I was planning on updating Tessa's room once we finally got moved into our new house...but I'm actually kinda glad I found what I wanted ahead of time!  The nursery has been decorated in the Zanzibar bedding collection (animal/jungle theme) since Parker was born.  I originally wanted a somewhat neutral nursery, but I must say, after 5 years, it is really nice to see some girliness!!  We'll be using Tessa's crib until we move, so for now, we are improvising with the twin bedding.

Owls, squirrels, hedgehogs, birds, trees, leaves, mushrooms; 

blue, green, orange, yellow, brown, and of course...pink! 

The lamp has a double shade with cut-outs...so clever.  

And who could pass up the adorable alarm clock!

I'd like to say I anticipated the entertainment the comforter would provide thrown over the back of the crib, but I didn't....Tessa loves it though, reaching for it and seeing it through the bars :)

I had to sneak in behind her to get this, but I just love watching her play and hearing her talk in her room.  

 Sweet dreams pretty girl in your new girly room :)

~Whitney

A Tour of Central Elementary

We got to meet the teacher Tessa will have starting in April and we got to see the therapy facility at the school where she will do her OT and PT.

No doubt April 2013 will be a difficult season...sending our precious little 3 year old to school, but meeting her precious teacher and seeing where she'll be was helpful for this mama!

 

Here she is in one of the little modified chairs they have for some of the special needs kiddos.

Too cute.

~Whitney

A Stretching Education

We've added some new 'accessories' to Tessa's inventory and I'm just realizing I never posted about them.  These fun little things are called knee immobilizers.  They definitely are not my preference in color, but they are basically for at home use only, so it's cool ;)  

Tessa had an appointment with her physiatrist on July 11th for a regular follow up and then had some x-rays done on the 20th.  Due to Tessa's spastic cerebral palsy, there has been (and probably always will be) some concern about the tightness in Tessa's hamstrings.  I am no doctor and no PT, but basically it is very important for us to make sure Tessa's muscles get stretched every day because of the high tone/tightness in her muscles, that she experiences from the CP.  Tessa needs help with stretching lots of her muscles, because of her lack of mobility, but especially her hamstrings.  Stretches are basically a preventative approach.  We are trying to make sure Tessa doesn't develop a contracture of the hamstring.  Basically, a contracture is the 'abnormal shortening of muscle tissue rendering the muscle highly resistant to passive stretching'.   

I did not read all of this article, but I copied in some pictures from it below.  

It is titled "Contracture of the Hamstrings in Spastic Cerebral Palsy".  I thought it had some good illustrations of what is happening to Tessa's hamstrings because of her spasticity. 

http://www.bjj.boneandjoint.org.uk/content/56-B/1/102.full.pdf

Tessa sleeps in one knee immobilizer a night, alternating legs each night.  This just helps her keep her leg straight to give her hamstring a bit of a stretch over night instead of having her legs scrunched up all night. 

We also use the knee immobilizers during the day.  The most productive stretch for Tessa is during long leg sitting.  Twice a day, we put both knee immobilizers on her legs and she sits at a 90 degree angle for 20 minutes.  This is a more effective stretch than what she gets at night, because at night she is laying straight (like the picture above) and isn't getting the hamstring stretch across her knee.  As the illustrations showed, having that tightness doesn't allow Tessa to stand or sit with the appropriate posture...which ultimately can lead to permanent deformities and continued limited mobility.

As long as we stick with the 20 minute max, Tessa tolerates the long sitting very well.  She, like any other 2 year old, would much rather be playing than sitting and working hard, but we make the best of it!  The other night we pretended like she was having an evening at the spa.  I brushed her hair and played with her hair.  I gave her a little neck massage and shoulder massage.  And then I tickled her back and we snuggled.  

 Another even more effective use of her knee immobilizers is in conjunction with her DAFOS.  As illustrated in Figure 3 above, along with a contracture of the hamstring can come foot deformities.  So when you pair these two accessories together, you get a really nice stretch in the hamstring while keeping her ankle and foot in the correct position for the stretch.  We use the combination of these two in long leg sitting and when she's in her stander.  Again, she's getting a better stretch in long leg sitting because the hamstring is being stretched across the knee.  In her stander, the stretch isn't as intense, but the combination does help keep her from cheating and bending those knees to avoid a stretch.

 Ok, you've officially been schooled on contractures, knee immobilizers and the importance of stretched out hamstrings.  We go back to see Tessa's physiatrist on November 12th.  For now, her x-rays look good and there are no immediate concerns.  I don't know much about the next steps if things do begin to take a turn for the worst, but I do know there are options, like botox injections, to help with the muscle tightness and contractures.  There are also surgical procedures that can be done to help, but my prayer will always be that we can dedicate ourselves to all-things-preventative and avoid the surgical route.  Time will tell, but for now, we are going to do our stretches and be creative and have as much fun as possible in the process :)

~Whitney

Video Palooza!

Power Chair Adventures 6/28/2012

Excellent driving skills 6/28/2012

Tessa Giggles-Daddy playing with the blinds 7/2/2012

Parker & Daddy Entertaining Tessa with Songs & Motions! 7/23/2012

Part 1: I'm a Little Tea Pot

Part 2: Twinkle Twinkle

Parker's best attempt at dancing with his sister ;) 8/2/2012

Sweet Good Mornings after turning her CIs on 8/13/2012

Tessa's first time to pick her bottle up off the table and take a drink

all by herself!  8/17/2012

Pesky little fly! 9/4/2012

Morning Changing Table Giggles 9/2012

Cooler weather = lots more power chair time! 9/2012

Sweet Talking from My Sweet Little Girl 9/2012

Impressive Use of Her Arms and Hands!!!  9/8/2012

This is all a first for Tessa and she did it over and over again!

Hooray for new discoveries and new abilities!

Part 1: Trying to get her ribbon wand 

Part 2: Working really hard at getting her ribbon wand

Part 3: getting some jammies down off the storage tub

Part 4: still working hard at reaching up and then passing to Daddy

Part 5: the super impressive double-pass!!

This video-explosion-post is a testament to how ridiculously busy things have been around here!  But I just can't stand to not try and catch up from time to time, regardless of presentation ;)  I've spent some time looking back at pictures and videos from this time last year, and it's hard to believe how much things have changed.  Little Miss has been driving her chair for a year now and I truly believe that so much of her progress over the last year has been a direct result of the freedom, independence and confidence she gained from that little motorized chair!

~Whitney

Promises & Provision

Boy, the last several weeks have been long!  I keep waiting and waiting for just the right time to sit down and write, and surprise ~ surprise...it's just not happening.  I have so many things to catch up on and so many details I have yet to account for on here, but today I find myself resting in God's promises, and it's worth writing about now.

Obviously there's been a lot going on for everyone, with school starting back, summer coming to an end...seasons changing.  This time of year marks a few specific things for us, annual updates to Tessa's IFSP and this year, Tessa's power mobility study soon comes to an end.  With just these two specific seasonal events, have come mounds and mounds of additional 'stuff'...both emotional and logistical processing.  Related to updates to Tessa's IFSP, we have begun discussions regarding her transition to the school district as of her 3rd birthday and moving from an IFSP to an IEP.  Related to the power chair study, Tessa will have her final evaluation on October 1st and come December, if we haven't begun the process of ordering Tessa her own power chair, we will lose the loaner she has had for the last year.

April 8th 2013 ~ Tessa will stop receiving services from her SoonerStart therapists, and will begin receiving services through Yukon Public Schools.  Over these next 7 months, we will be working with Tessa's therapists and the school district to begin agreeing on what Tessa's care/education will look like (via an IEP) come April 2013.

December 2012 ~ Tessa will no longer have access to a power chair if we haven't initiated an order for her own.  We have since found out, it wouldn't be wise to begin the process of ordering her a power chair, until her KidWalk walker order has been finalized.  The problem....Medicaid has denied Tessa's walker and I am currently in the throws of researching her claim and what our options are.  It kills me that it just took one sentence to describe 'the problem'...but it takes hours upon hours to do the research to better understand the things that directly impact Miss Tessa.

Like usual, instead of going on and on and on about the stress and anxiety and amount of work involved in every detail of Tessa's care, the Lord is calling me to fix my eyes on Him:

August 23rd: Jesus Calling: (the very night my stress level went thru the roof after our first specific discussion regarding Tessa's transition into the school district)
"Entrust Your Loved Ones To Me; release them into My protective care.  They are much safer with Me than in your clinging hands.  If you let a loved one become an idol in your heart, you endanger that one - as well as yourself." "..."  "When you release loved ones to Me, you are free to cling to My hand.  As you entrust others into My care, I am free to shower blessings on them.  My Presence will go with them wherever they go, and I will give them rest.  This same Presence stays with you, as you relax and place your trust in Me.  Watch to see what I will do."

Ephesians 3:20 NIV: "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"
Exodus 33:14 NIV: "The Lord replied, 'My Presence go with you, and I will give you rest'."

God's timing is perfect.  I am constantly amazed by His unending provision in my life.  The Lord has called us to entrust our loved ones to Him.  And while there will always be 'stuff' to process through, I am so thankful for the rest He promises me when I'll slow down and remember to trust Him with Tessa and all the details of her care.  Tessa is my daughter, but she is God's child first.  This isn't a relinquishment of my responsibilities, but a trusting in God's promises and provision in our lives.   

~Whitney

thought I'd end with a few of my recent favorites...