Diagnosis

So we got the news today. We've been dancing around these phrases for the last year of Iva June's life, but today, the Neurologist looked at me and gave me the news I knew had been coming for months, but yet, still hoping we could wait just a little while longer just to see if perhaps, anything has changed.  The first two were not surprises: hypotonic cerebral palsy and autistic spectrum disorder. The last one was startling: mental retardation.  With tears in my eyes I asked if he thought things could change, if there was still a chance that there was a delay.  He said no and he's very sorry, handing me a paper towel to dab at my eyes. 

There is hope.  Isn't there always? He said he thinks little June may surprise us and he obviously does not know the extent of each one of these diagnoses.  She's only 18 months.  The diagnoses may change with time and with testing.  These are labels.  We have not found causes yet. 

I now have a vision for my sweet girl.  I can see her when she is 5...dancing on the beach in her pink tutu, frolicking in the water with her little quirky self and giving me that contagious giggle because she's having conversations with the angels. 

Good thing there's an eternal plan.

"For I know the plans I have for you declares the Lord. Plans to prosper and not to harm you, plans to give you a hope and a future. Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with your whole heart." Jeremiah 29:11-13

Little Miss Pilgrim

I just want you all to know that Rich and I are doing well.  We love our daughter and she is a sweet gift to us.  It's sort of a relief to have a working diagnosis.  Thanks to each one of you who support and love us on a regular basis!

Video EEG and Sleep Study

Just one more test. It seems that there's always something else they can test our precious princess for, so we find ourselves at CHKD (Children's Hospital of the King's Daughters) yet again.  This time, thankfully, no pain, just a long, annoying process. 18 hours to be exact. 

I was fairly anxious about this procedure to begin with, but the day before, the nice lady on the phone reassured me that they'd do their best to keep Iva June comfortable.  They held up their end of the bargain, however, did they forget that we have a CRAWLER on our hands here? Prep needs to happen the hour before, not 5 hours before....

Regardless, we arrived and I was relieved to see them strap her to a board. I asked the nurse if we could keep her there all night. She looked at me like I was nuts.  She was really quite happy and snug as a bug during this part...

Then they began the process of measuring, marking and gluing 25 probes to her head.  She was still pretty happy and only started squirming at the very end....






All wrapped up with a sock cap on and Rapunzel's ponytail, they asked me to pick out a "backpack" to put all the wires in. I'm thinking, "Are you kidding me? You think she's gonna wear a backpack for 4 hours? " I picked out the blue monster because it was the most colorful.  Little did I know she would never see it:

So they moved us to another room which was filled with big computer devices, a bed, and all sorts of wires and contraptions that I was supposed to keep her away from. I ordered a "toddler tray" for dinner just to have something to do with her.  Nothing she could eat there.  Perfect. Chicken strip snacks for me.  Oh-one more thing before the nurses left. They needed to "plug her in".  So now she has a long wire tail. So, here I am, following a toddler around a filthy room making sure she doesn't eat her tail or pull her stocking cap or probes off of her head.  I start moving furniture to blockade various parts of the room and goodness, we need a crib.  Do they really think she can sleep in a bed?  How many hours before my husband gets here?


My gracious husband volunteered to sleep through the night with her.  He told me the rest of the story...they glued more probes all over her body and put a mouth/nose piece in.  She finally got to sleep at 9 pm and at 3:30 am she had "had" it and was thrashing about trying to get it all off of her. At around 5:00 am they removed some of the glue with nail polish remover and sent her home around 6:00 am.

 Poor little June....she arrived in a very tired, confused, almost panicked state, still covered with hard glue all over her body and matted hair.  She fell asleep on her Daddy's chest (her favorite spot).  She's pepped right up after a three hour nap, but we're still trying to get that glue out....any suggestions?