Botox Injections - Round 3

Big morning for this sweet girl. It was a rough start with a process she didn't know, but she did amazing as usual~even got a few smiles while we waited!

New doctor ~ different approach ~ but everyone was awesome and after the sedation she got to go home with Daddy to rest! 

We are anxious for her to experience much needed physical/muscle rigidity relief that the botox injections provide for her.

Prayers for her: for success of the treatment, physical peace and overall unquestionable benefits.

And prayers for us: to continue to feel confident in the preventive measures we take very cautiously for Tessa throughout her life.

Clifford definitely helped pass the time...

I hope she knows how MUCH those smiles mean to her mama!

So thankful for how peaceful she was during and after the procedure.

And thankful she was able to go home with Daddy to rest :)

~Whitney

Catching Up!

9.23.2015

Sweet girl is worn out after working super hard at Lokomat!!

9.30.2015

From 10.2.2015

Our sweet girl has a big day today. Her first Botox injections are scheduled for 12:30 this afternoon.

Botox could help ease the effects Cerebral Palsy has on Tessa's little body. It could allow us to reduce one of her current medications that increases seizures as a side effect. Overall with Tessa having potentially more physical freedom and less seizure activity, we look forward to new opportunities for her to learn and grow!

In Tessa's world, medication can be a necessary evil. We are thankful for the chance to try something a little different. Please keep us in your prayers. This new road is full of excitement and hopes, but also fears and anxieties.

She's okay. I am not. Waiting on doctor....

Wearing our matching bracelets today...being brave together

Much needed. Been a long day.

10.8.2015

I think they kinda like each other

10.9.2015

Star gazing on the driveway

10.11.2015

Holding hands with both of her brothers while watching a movie

10.11.2015

Cutie pie :)

Love watching these two brothers play!!

10.12.2015

 10.13.2015

Cruising the neighborhood with these cuties!!

10.14.2015

A sweet little boy playing in his big sissy's bed :)

10.17.2015

Weston's first time in a restaurant highchair :)

 Him and ALL HIS HANDSOME at 6 1/2 months :)

10.18.2015

My perfect view at Target :)

A little evening cruising

The sweetest Bynum Crew!

10.22.2015

sweetness

10.23.2015

Tessa's 6 month check up went great! Doc loved the new glasses and Tessa got really tickled about the silly device on his head....her giggles were super contagious as usual. Love such excellent doctors...especially ones that will take a moment to laugh *with* our little ray of sunshine!

10.24.2015

My snuggly little walking buddy

10.24.2015

bynum-boy clowning around!

10.29.2015

Our little 'sleep' walker ;)

 10.30.2015

This is one of Weston's favorite toys...accompanied by his fantastic 'attacking penguin' face!

10.30.2015

Parker dressed up for Pirate Day at school

10.31.2015

A beautiful Saturday afternoon walk with my favorite big boy!

I love getting to be this amazing kid's mom!

That wraps up our October catch-up!

~Whitney

Physiatry Update

"Physical medicine and rehabilitation (PM&R), also known as physiatry /fɨˈzaɪ.ətri/ or rehabilitation medicine, is a branch of medicine that aims to enhance and restore functional ability and quality of life to those with physical impairments or disabilities. A physician having completed training in this field is referred to as a physiatrist or rehabilitation medicine specialist. Physiatrists specialize in restoring optimal function to people with injuries to the muscles, bones, tissues, and nervous system."

https://en.wikipedia.org/wiki/Physical_medicine_and_rehabilitation

Tessa had a follow-up appointment with her physiatrist on Friday, 8.7.2015.  I like to document these visits here on my blog, but honestly, it gets a bit overwhelming.  It is a lot of information that we have to cram in our heads and then ultimately come to a decision on for what's best for Tessa.  Dr. Wright drew some diagrams at this last appointment and they are really helping us process everything. 

The graph below helps outline our treatment options to consider for Tessa

 Focal vs. Generalized and Reversible vs. Irreversible:

Focal and Reversible:

1. Botox injections

2. Phenol injections

3. Casting

Focal and Irreversible:

1. Orthopedic Surgery

Generalized and Reversible:

1. Oral Medications (Baclofen)

2. Baclofen Pump (Surgical procedure)

3. DBS - Deep Brain Stimulation 

(performed at Cooks in Ft. Worth)

Generalized and Irreversible:

1. SDR - Selective Dorsal Rhizotomy

The illustration below is slightly more complicated and I won't attempt to explain in super specific detail.  I have to admit though...the term "GABA" was definitely a new one on me ;) 

The overall summary of what we learned above is that Tessa could receive Botox injections in her Hamstrings, Gluteus and Adductors in order to help reduce overall hip thrusting, which would allow her more functional movement and better positioning, leading to the potential for more weight bearing opportunities which could in turn improve the approximate 1/3rd subluxation in her left hip.

Phenol injections could be done in her Hamstrings and Adductors as well, but would have to be performed under anesthesia at OU Medical.

Botox and Phenol injections fall under the Focal and Reversible treatment options and at this point are what we feel most comfortable doing, as a starting place.  Tessa currently takes 45 mg of Baclofen orally a day to help manage her spastic cerebral palsy.  If we have success with the Botox injections, ideally we will be able to reduce the amount of oral Baclofen.  That's a huge plus because a side effect of Baclofen is seizures...so any chance we have to improve upon that, we would definitely like to consider it!

Here is a basic and helpful diagram of the Baclofen pump.  This is just another option for us to potentially start wrapping our heads around.  

Dr. Wright has clinics at the JD McCarty center the first Thursday and Friday of each month.  The first of September felt a little too quick to try to process everything and also with school just starting, so we're planning on BOTOX injections either the 1st or 2nd of October.

~Whitney

Physiatry Update & Kidwalk Fun

Physiatry update from 11/6/2014~and since I'm always asked "What's Physiatry?", here's some info :)

Info link:
What is a Physiatrist?

Physiatrists, or rehabilitation physicians, are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move
Rehabilitation physicians are medical doctors who have completed training in the medical specialty of physical medicine and rehabilitation (PM&R). Specifically, rehabilitation physicians:

Diagnose and treat pain
Restore maximum function lost through injury, illness or disabling conditions
Treat the whole person, not just the problem area
Lead a team of medical professionals
Provide non-surgical treatments
Explain your medical problems and treatment/prevention plan

We first started a treatment plan for Tessa with Dr. Wright in January 2013.  It's hard to believe she wasn't even 3 years old yet!  At that time we chose to try Baclofen to help Tessa achieve more function movement with her tone.  Here is my update from back then.  We had just recently gotten her KidWalk walker and were so ready for her to be physically able to start using it.

Well in June of 2013, we were very sad to hear that Dr. Wright was taking a position in Austin TX.  Until a couple of weeks ago, we hadn't see him since then.  It was sooooooo great to see him again!

Dr. Wright is currently holding monthly clinics at the JD McCarty center down in Norman.  We had our first appointment with him on Thursday November 6th.

He came in talking about how great Tessa looked...and as her parents, that was lovely to hear :)

Our latest challenges, other than her high tone and rigidity, have been repeated movement with her right hand.  The movement has seemed to be tied to the epileptic spasms that she started having within the last year.  The repeated movement isn't what causes concern...it's the fact that Tessa will pull her hand to her mouth and bite down...h.a.r.d!  So hard we're afraid that she'll break skin one day :/  Tessa has always had very intense oral tone and has always needed some kind of oral therapy chew toy (aka - primarily a pacifier) to help her get relief from all the tension that the excess tone in her mouth causes her.  Between that, her spastic cp, and her seizures...it can be challenging to determine what exactly is happening during those movements.

Tessa was ridiculously cute waiting to see the doctor :)
And sweet Parker was quietly playing on the iPad while we waited

Here is one of our solutions to help spare Tessa's little hand!

It's amazing the kinds of things you dream up when you're left feeling desperately creative ;)

No need to wrap it around a carseat...just wrap it around Tessa's right hand ;)

And voila!!

(this thing has been a huge hit...so probably gunna need to get a few back-ups)

Memory Lane: 10/4/2012

When her KidWalk first got delivered!

Cutie-Patootie! 

and now, 2 years later....

she's so big!

I was so proud of her!  She was on a bit of an incline here and she showed me!

(I did move her to a more level spot after this)

That walking stuff is hard work!

~Whitney