DBS will be done!

Maya's DBS is Set

          The DBS is scheduled to be done March 27th, 2015.  Of course, this being a 2 part operation, she will remain in the hospital for approximately a week and then will get the other apparatus placed in her upper chest, closer to shoulder area on April 3, 2015. 
     Maya is nervous and admits to being scared, but she is so enthused about getting better that she sort of finds humor in it some how.  She is a trooper. 
     I for one am very scared.  I prayed and asked that this whole matter be placed in God's hands and the decision be guided by the grace of our Lord and Savior Jesus Christ. 

IN JESUS' NAME TODAY WE SEE DOCTOR ANDERSON

Today we see doctor Anderson at Loyola outpatient center, and will determine if Maya will go through with the DBS operation.  We commit everything to the Lord and Savior Jesus Christ.  May He place His hand on my Dr. Anderson's decisions and skills.

Have a Plan When Something Goes Wrong

You Should Keep all Eggs in One Basket

Or at least the bigger eggs in one basket

 

     Maya's doctor's are kept as one team.  Maya was lucky enough to construct this team through Lutheran Advocate Children's hospital, which is reputable as one of the best children's hospitals in the nation.  This is a great advantage if you can get all of these services in one place, sort of when you're able to get all of your Microsoft Office on one hub, that is ideal, same thing here.

     Maya has several kind of doctor's:  Pediatrician, Pulmonologist, Traumatologist, Physiatrist, ENT doctor (Ear, Nose and Throat), Gastroenterologist, and now Neuro Surgeon.  For this kind of assembled talent it is best that they all work out of one place.  One time Maya needed to see 3 different doctor's regarding one procedure and it was so cool to see the doctor's get together on the floor right outside of Maya's patient room and discuss what the plan and action would be. 

     So if at all possible when dealing with this kind of situation for CP or any type of medical conditions, I do recommend to do this kind of network grouping.  Again, it's not possible all the time but if it is, do it.

Lutheran Advocate Hospital Offices



Mixing and Drinking

How to mix Starbien and Kenyan:

     Just remember to open the envelope with the mix at the top where it indicates to tear, but I use a scissors to make the clean cut.  Next, you can make the top of the envelope into a pour like tip and pour it directly into the water bottle, or you can use a funnel. Do this with each envelope, one of Starbien and one of Kenyan.  Finally, pour water.  Shake really well.  Drink it slowly and like a beverage, no need to guzzle it down.  In Maya's case, she uses a straw and sips it until finished during the course of the day.  Maya is relaxed and focused for her day.

     Here is my favorite doodle !  Expect to be seeing more of this doodle from proud old dad!  Seriously though, isn't she lovely?  Her favorite song is by Bruno Mars, Just the Way You Are.  Maya's favorite color is pink, her favorite food is mashed potatoes, her favorite singer is Nick Jonas, her favorite season is spring time, her relaxing thing to do is sit in the swimming pool.  She is very meticulous of what she is wearing, things must match and look good.  She is all girl this one.
    

 Maya spotted an AFO!

Ankle Foot Orthosis

Today was one of those days we call doctor days.  Maya needed to get her AFO's fitted and brought home.  This fuller polypropylene orthosis provides greater medial lateral support for unstable ankles and greater rigidity to resist extension spasticity.  Larger foot plate gives more support to the forefoot.  This is what she wears when she is at school or at home during the day on weekends.  They tend to be a little uncomfortable, especially when she first gets them, so a few hours is quite enough to get it's purpose done. 
     Maya was very friendly when we first arrived today and then not so friendly when we left .  Bottom line, it placed her foot in the way she doesn't feel relaxed.  After the 25 minute drive back home she felt better after a serving of McDonald's fries, after being together for 10 years I've discovered her weakness.  She is now in her bed watching her programs on cable and she is smiling with one or two fries sticking out of her mouth.  Maya will take advantage of this no school day and enjoy, after all the whole routine will start back up tomorrow.

Inspiration

Sophie Christiansen

Paralympic Games Medal Winner

 

     Christiansen was born two months prematurely with cerebral palsy and suffered from other health problems including jaundice, blood poisoning, a heart attack and a collapsed lung. 

     Maya was so impressed today when she came back from school, learning from the internet about this young 14 year old who has beat the odds.  Nope, she refuses to let CP keep her from doing the so many things that others can accomplish, most importantly she is not kept from competing.

     This is the new found energy that I'm telling you Maya has had since she has been taking the Kenyan and Starbien from Omnilife.  She is beating the odds with the attitude of a champion, she wants to compete and win!  Her life is getting more and more out of it due to her attitude.  Omnilife is a wonder in her life!!! I am in so much awe of it!

     Maya is coming across new heroes in her life that cause her inspiration, she doesn't realize yet that' she is mine.