Let's Do This!

Thrilling day today...Tessa's KidWalk is scheduled to be delivered this afternoon!!!  I was shocked to find this out, considering we are used to waiting at least twice as long to receive equipment!

I am so excited to give her the opportunity to do more of this...

Did you see that little BIG step?!?

Our little Miss absolutely loves standing up like a big girl.  And she loves it when her Daddy plays 'walking' with her.  Today is like Christmas in October...but better.  I can't wait to see the look on her face this afternoon when she is 

standing-independently-free-to-move-on-her-own!

Learning to walk will be a process, but with each and every new piece of equipment...Tessa both acknowledges and embraces the reality of the world that is being opened up for her.

My prayer is that the same way using the toggle on her power wheelchair undoubtedly led to the drastic improvements in her fine motor hand skills...the KidWalk will allow her to start exploring what her little legs can do for her!  

~Whitney

So Impressed!

Miss Tessa never ceases to amaze me.  She had the most wonderful therapy session at Hearts for Hearing yesterday and I am just so proud of her.  The challenge with Tessa sometimes, is keeping her attention; she is so much LESS interested in objects and instructions than she is in people and playful interactions.  Which really, would probably hold true for most 2 year olds ;)

It was very very exciting to see her working so hard and staying so attentive for the entire hour we were at therapy.  We have moved forward with 2-step-commands and she is doing beautifully.  Before, we would simply ask her to pick up or point to the horse, now we are not only asking her to pick it up, but we are also asking her to put it in the bye-bye bucket.  With the way these videos go, you would think she's been following 2-step-commands forever ;)

I didn't get it on video, but my favorite part of therapy today was when Ms. Tami asked Tessa to give me a plate, a cup, and then all the food on her plate.  She picked up each and every item, one by one, first with her right hand, passed them to her left hand and handed them to me.  It was so beautiful.  Each and every time she picked up the appropriate item and shared them all with me.  It was so so great!

In this first video, it took me a minute to realize that Tessa couldn't reach the horse.  It was a little too far back on the table, and yet she was still trying so hard.  She vocalizes at one point and later I wondered if she was trying to ask for us to move it closer so she could get it...

The improvements in Tessa's fine motor skills are drastic from a year ago.  But still to watch how hard she works to perform these tasks is just incredible to me.

I absolutely love the expression she gives when it's time to pick up the lettuce.  This weird, flimsy, rubbery little object is not Tessa's favorite, and I love that she takes the time to show her complete disgust with the instruction she's been given!

....that's my girl! ;)

~Whitney

Spirit League Soccer!

Well, we only made it to one of Tessa's Spirit League Soccer games, but she had a great time!

Daddy got a good workout carrying her around the court and helping her kick the ball.

It was fun to watch and a great new experience for all of us!

jerseys...one-size-doesn't-fit-all ;) 

All the kids had so much fun taking turns kicking the ball and trying to score a goal!

It's neat to watch them learn how to take turns and to wait in line.

She was having a blast with her Daddy :) 

And had a blast watching everyone else too!

And just look at her sweet brother helping her out!

Melts my heart!

The volunteers are always so great with all the kids.

And you can barely hear it, but Tessa starts giggling like crazy

after she makes the goal in this one!

And here's a little dribbling ...then a goal!

Love new experiences, spending time together as a family and having fun!

~Whitney

Exciting Fridays!

We have had some amazing Fridays over the last couple of weeks.  Darin and I both took a vacation day two weeks ago so we could attend UCO preschool with Tessa.  Darin's parents were also in town for the weekend, so we all got to see Tessa in action at school!  And this last Friday, I was home with the kids since it was a Professional Day for the Yukon teachers.

Here are some moments captured from two weeks ago:

Playtime is first on the agenda when she gets to school.  We sit and play with blocks and rings and all kinds of toys, and all of the teachers are always right there interacting with Tessa, signing and talking to her.  She stays so engaged the entire time she is there!

Then we transition to the back room and ride the horse, play with balls, play on the play gym, or spin in the big red saucer.

.

Look at our big girl sitting up so tall and holding her head up!

 This was the first time Darin has gotten to go, other than the Open House they had mid-August.  

It was very exciting for Tessa to have her Daddy and her grandparents there supporting her :)

 What's a preschool day without snack time!  There is a very sweet girl that takes care of feeding Tessa her snack.  During this time, all the parents/caregivers go back to the back room and learn new signs for the week and have great conversation about specifics and life in general.

One of my favorite parts of the morning is the singing time at the end right before class is over.  I'm still trying to get all the songs on video to help me learn all the signs...I'm getting better, but don't have all of them down yet.  Tessa looks super sleepy in these videos, it had been a long morning.  But she absolutely loves it when we sing and sign songs at home...so I'm doing my best to learn them all!

The kids love the "Who will come and play with me?" song...they all feel so special 

when they get to play the guitar!

Kayla got this picture a few weeks ago!  

I got to help Tessa play the guitar...

And what's a preschool sing-along without Twinkle Twinkle Little Star!

I just love the "Bye-Bye" song.  

We sing and sign to each and every child that came to school that day!

And here are a few moments from this last Friday.  

It was super fun to get to take Parker with us.  It actually ended up being quite the 'sibling day' at UCO since several of the other school districts were out of school too!

Parker showing all the little kids how it's done ;)

The infamous giant red saucer

 I just adore this picture.  

Tessa's sweet friend crawled up on the trampoline with her to play.

Friends are priceless...even at the age of 2.

Enjoying story time!

Yay for bubbles!

The siblings got to enjoy snack time too! 

(they're at their own table on the right) 

It was so sweet when some of the kids came together to help us spin Tessa in the saucer.

All I can say, is this UCO thing has been an amazing addition to our lives.  Such a wonderful group of people coming together to love on our kids, care for them and teach them.  I am a grateful mama.

~Whitney

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