Saturday, September 28, 2013

Deep Thoughts



After surviving the first month of school, working part time, running my own sweet little preschool, and taking care of my family I should be on a high.  I am proud of all that I have accomplished with the preschool.  It has been such a rewarding experience to be teaching again, in a small and intimate setting.  It is everything I have dreamed about.

There is a small glitch in this little dream world.  She is almost two years old and she has taken motherhood to a new level of worry for me and my family.

I started blogging about Grace’s head banging last spring.  In the past six to nine months it has not improved.  If anything, it has gotten excessively worse.  Instead of sleeping peacefully like my other children did at this age Grace spends a majority of her time rocking on all fours while silently/gently banging her head into her bumper.  This all started at around one year for her, and it has just never stopped.  I had read about children who did different soothing behaviors to fall asleep, and at first this is what we thought she was doing.  But, then we slowly started to notice on the monitor her doing it again and again at different points in the night.  Then she was waking up at 1 or 3 am and rocking again.  We were never sure how long she was doing it, because usually Chris and I are dead asleep then, and she does it so quietly that we don’t hear her.  There are some nights during the week when it does wake us up. 

In June my mother made her a weighted blanket.  It worked like magic for 10 days, and then it wore off.  She still sleeps with it every night, but often she will still rock with it on her back.  Then in July we began to give her Melatonin before bed, because she was rocking for hours to fall asleep.  Each night it was a battle between going to her to get her to stop, and allowing her to do this behavior.  When we would go back in her room, it would often times make her so upset that she would cry or rock harder.  We are just tormented watching her on the monitor and trying to figure out what the right thing to do is.

Throughout the summer Grace has been receiving speech and OT therapy for her speech delays and all of these sensory needs that she seems to be exhibiting at night through rocking.

Well, we are now just a few weeks short of her second birthday.  She has made leaps and bounds in her speech development.  But the rocking, oh the endless rocking just will not let up.  We again visited the doctor to make some decisions about moving forward with Grace and getting her help for her sleep.  He said that she is basically living in a sleep deprivation, and it is effecting so much of her life.  She is tired, cranky, tantrums over so much, and just the most difficult toddler around.  As per his request we visited the Kluge Children’s Hospital which is part of UVA last week.  We had yet another formal OT evaluation through Kluge and got some more information, but not any definitive answers.  In two weeks we are visiting a pediatric sleep specialist through UVA.  I am hoping that we will finally meet the right person that will know how we can help our little girl get the rest she so needs and deserves. 

Before going to the sleep specialist Chris and I decided that we were going to video tape Grace and perform our own informal sleep study.  The first nights results were so upsetting that I couldn’t even watch them.  She rocked for 20 to 30 minutes at 9:30 pm and 11 pm, but that isn’t the worst of it.  She didn’t just rock for 30 minutes or 40 minutes, she rocked for over two complete hours straight in the middle of the night.  From roughly 1:30 am to 3:30 she rocked.  Just writing it down makes my stomach sick.  Why is she doing it?  Why can’t she sleep?  Will she ever be able to sleep soundly and wake up feeling happy and rested?  What can we do to help her?

I am praying for some peace for her and for us.  I am praying for the right people to come across our path and tell us what to do to help our baby girl.  I am praying for sleep. 


stacy said...

I'm so sorry Clare. I wish that I had some words to help but I don't. Just continue to be proactive for her healthcare. Hugs to you and your family and know that I am here if you need anything.

amy said...

Sending you a big hug Clare! I have been thinking about you guys.

Jodee said...

Bless your sweet hearts. I completely feel your pain because we battled night time anxiety with Carson from ages 6-9 and it was so frustrating. We went to many doctors and put him through a sleep study too. Melatonin was our best friend. We were constantly worried that it would affect his education because he was always tired. I hope you find the right doctor soon. In the meantime, I am sending big hugs and prayers your way. Sleep can be such a tricky thing. Hang in there!

Lindsay said...

Love you! Love Gracie! Praying for everyone.. this is breaking my heart. I am praying for the answer soon!! XOXOXO

Mary Beth said...

I'm so sorry that Grace and your family are going through this. My heart hurts just reading this. I'm hoping you get some answers SOON.

Katie Arnold said...

My heart is heavy for you too, sweet Clare. I'm sure this is so hard!! I know how much a day or night of "off-sleep" throws me into a tizzy...I cannot imagine it to this degree. Praying for answers and rest for your precious girl.

amanda said...

oh babe i just can't even imagine...

sending so much love and prayers and wishes for answers and sleep!! for lots and lots of deep sleep for all of you!!

gracie is so very lucky to have you two in her corner!

lots of love mama!!