Thursday, September 30, 2010

A Tough Past Two Weeks

With a birthday comes annual tests, evaluations, and doctor's appointments.  Since last Monday, my bright, energetic, happy daughter has become a cranky, tired Toddler Bear with separation anxiety, stranger anxiety, and anything-resembling-an-office anxiety.

Here is an update on Ellie's health and let's cross our fingers that tomorrow big ECI annual evaluation goes better than the past 2 weeks.

BTW, a whole year has passed and (knock-on-wood) Ellie has never been sick.  Here is my theory:

Sharing Toys.  That ball is Sophie's.

12 Month-WCC:
Ellie Bear is doing very well.  She gained one pound in the past 3 months (a little less than expected, but Dr. N is not concerned since Ellie is Little Miss Active) and she physically looks fabulous.  She is very slightly behind on the gross motor skills, a little more behind on fine motor & speech, and a little more so behind on the cognitive skills.  I expected and suspected as much, but it is still crushing to hear that your child is behind on everything.  Speech therapy has been recommended and she got her 5 shots.  Ouch!  She was a superstar through the entire exam and did great that night.

18 lb 3 oz  = 70% on DS chart, 10% regular chart
27.25 in = 70% on DS chart, 5-10% regular chart

Celiac's Disease Screen = negative :-)
Thyroid Screen =  negative :-)

We frequent to Dell's Children's Hospital for the blood work since Ellie has roley-poley veins and fat chunky-monkey rolls.  Their lab is excellent at getting the blood on the first stick.  The tech got into the veins right way.  Yes, veinS as in 3 of them!!!   The tech would get some of the blood needed and then the vein would roll or collapse so she would need to tap into another vein.  Bear-Bear's arms were black and blue in the creases of her elbows and it hurt me as a mother so bad to look at them that I dressed her in long sleeves.

This past Monday it was time for our annual exam with Dr. Holt.  Ellie had (yep had :-) a hole between the upper two chambers of the heart.  This is called an Atrial Septal Defect.  Hers was specifically called a PFO or Patent Foramen Ovale.  This is a hole that is present in fetuses and then closes at the time of birth.  Ellie's did not close and it was preventing her from going deep-sea scuba diving and flying a fighter jet.  Anyway, we did an EKG to look at her rhythm and an Echocardiogram (ultrasound of the heart).  I distracted her with rice cakes.  She did fabulous!  They got all of the pictures they needed of her heart.

Results = the hole is fully closed and we do not need to ever visit Dr. Hold again!  Yes, Dr. H is nice, but that is one more doctor for us to check off our list.

A Happy Smiling Bear

Physical Therapy:
Yesterday was PT.  We have been using an outside source (as in outside of ECI--long story on them being stingy with the services) for physical therapy.  It is very costly even with insurance so we do not go frequently.  Our therapist Cindy and I have worked out a deal where she teaches me a bunch of exercises to do with her daily and then we only need to touch base monthly.  It works great and we have seen so much improvement over the past few months since working with Cindy.  Super Bear!

Yesterday's session did not go well.  Actually, it was disastrous.  I cried afterwards.  Ellie was awesome in the waiting room.  When we went back to the therapy room with Cindy and the door shut, Bear turned into a panicked, frenzied screaming machine trying to crawl up my body.  Cindy and I have never seen her like this.  Who was this possessed child?  Ellie would not cooperate for any exercises so Cindy showed them to me by doing them herself. She also showed me how to use a soft brush on her arms and legs to help with proprioception. Ellie screamed and had big crocodile tears the whole time.  Cindy then leaves to print out some pictures and notes for me to take home.  While Cindy is gone, Ellie laughs, babbles, and plays with the toys in the therapy room.  Cindy comes back in and, you guessed it, screams.

Needless to say I am a bit nervous about tomorrow's ECI evaluation.  Jan will be here with another therapist to reassess Ellie and to formulate new goals.  What if Ellie screams again?  Also, I am prepared to battle.  I want speech therapy but ECI is very spread thin right now with providers.  They always argue with me that Ellie is at least "making noises".  Uh, okay.  So Ellie is behind, but not behind enough.  To me, it doesn't matter.  I do not care that they are spread thin, I care about Ellie and I will fight to get her the services she needs.

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