Sleeping is for Wussies-developmental update August 2010

In less than one week Corrigan returns to John’s Hopkins for his repeat endoscopy and removal of his “tummy tail.” After nearly four months of pinning and taping his feeding tube out of the way, it will be replaced with a tiny little Mic-Key button.   I am not sure what Corrigan thinks about it all but I am super excited to see that dangling tube gone for good!  The medical supply company has already sent out two replacement buttons and I keep opening the box and staring at them.  I cannot get over how tiny they are in comparison to what we are dealing with right now!

Corrigan’s yearly evaluation was postponed (it was to take place yesterday) but two of his therapists have already told me that they are rating him around the 15-16th month range.  This puts him approximately one year behind which is where he stood in January as well.

There has been very little progress in the area of speech though, when he is calm and settled, he is now babbling in a soft voice full of inflection and full range of consonants and vowels so that is encouraging.  In three months his only new words are “shoe”, “car”  and “tree” but his ability to communicate his needs without temper tantrums is getting much better.  His “signing” is becoming more natural to him and he is very firm about grabbing my hand and leading me to exactly what he wants.

Some new things that he has done in the last few days that are worth noting are:

1. Corrigan plays for long periods of time with his cars and I often hear him saying, “Bye Bye” and making the “bye” hand sign when his car reaches the end of the table that he is playing on.  It is a hint of imagination at play and it thrills me.

2. Corrigan has never stacked.  Lately he has been placing toys on top of his bigger cars and trucks and pushing them around the room.  The other evening, at the dinner table, he spent a good amount of time placing his french fry pieces on top of the lidded Gatorade bottle.  This makes his therapists very happy.

3. He has finally figured out the leg motions necessary to move across the living room on a ride-on toy.  He is considerably behind on this skill and it is a great success to see him making the connections on how to do something that is kind of complex to him cognitively.

4. Corrigan has learned how to remove his pants, diaper and socks.  He understands that he needs to pull his shirt up to get it over his head but is, as of yet, unable to complete the movements to finish the task.

5. Each time that Corrigan enters a room that I am in, I wave “hello” to him in an exaggerated manner and say, happily, “Hiiiiiiiii, Corrigan!”  Last night, as he was coming down the hall I did this and he moved his hand to mimic mine (though it was backwards, top facing out and waving instead of palm out) and said, to my GREAT delight, “Hi, my mama!!!”  After I picked myself up off of the floor, I repeated the greeting several times and so did Corrigan.  Sometimes Corrigan will do something all day long, one day, and then never again, so I was pleased to note that today, when I tried it again, he said, “Hi, my Mama!” with his goofy wave and then laughed.  We also did it with our reflections in the mirror which he found hysterical!  This is officially Corrigan’s first sentence!!!!!!

“Hi, my Mama!” is music to my ears!

Therapy is going well. Though rapid improvements are not taking place (boo!) his team reminds me often that as long as there are gains and not regressions than we should be happy. He is showing real improvement in attention span during therapy which is a blessing to witness. At yesterday’s session he sat for an entire book with Ms. Kelley and also long mutual play with a toy.  Once his attention spans improves we will be closer to being able to have cognitive testing done to better assess his cognitive development.

His eye contact is slightly improving as well.  I have noticed that he holds a gaze with another person for a few seconds longer than before and seems more comfortable with the concept of eye contact. Instead of it seeming as if he was uncomfortable with the eye contact it now seems as if he is just too busy to hang around looking deeply into people’s eyes. The kid has things to do!

He is really becoming a cuddle-bug in the past few weeks as well.  His lap-time is getting longer and longer, he is allowing for more gentle touch and willingly wraps his arms around people and places his head on their shoulders.  It melts me every single time.

Funny how the simplest things can make the world seem so much better, eh?

and then there are his sleeping problems….oy vey.

Corrigan’s sleep issues are getting worse.  A few weeks ago I was lamenting the fact that Corrigan’s days began at 3am.  However, the past three nights have been absolutely horrible due to Corrigan now waking around 1:30 am instead of 3am. It is the strangest thing though. If Corrigan wakes one night at 3:13am…then he will wake at 3:13 am, nearly on the dot, the next several nights as well.  I could almost rely on him like an alarm clock if I needed an early early morning wake-up call!

His bedtime routine is the same, his bedtime has not changed, his daily routine is pretty much the same each and yet every few days his waking time is moving farther and farther back.  I do not know how he can continue to go on 4 hours of sleep.  I thought that 6 hours was bad. Two days ago, Corrigan awoke at 1:39 am ( I keep notes on his sleeping patterns) and did not fall asleep, despite numerous attempts to lay him down for a nap, until exactly 1:30 PM!

Due to the fact that I have to pump his night feed through his g-tube, I do not get to bed until after 12:30am.  Now that he is waking shortly after my head hits the pillow it honestly feels like torture. I am contemplating not laying down at all since being awoken less than an hour after falling asleep is really making me feel angry and overly emotional.  I think that I would do better not sleeping until Corrigan crashes around sunrise(normally).  I feel more in control that way and less frustrated about the situation.

We have not had the chance to sit down with his geneticist to discuss possible solutions, or evaluations, for his sleeping issues but our own research and conversations with other professionals in the field of his disorder have led us to rule out using melatonin supplements.

Mark and I are believers in the benefits of binaural beats and I am looking into this type of therapy to help Corrigan. We use binaural sounds along with light therapies in order to induce relaxation with the Proteus Light and Sound system. Binaural beat stimulation has been used fairly extensively to induce a variety of states of consciousness, and there has been some work done in regards to the effects of these stimuli on relaxation, focus, attention, and states of consciousness.  We are investigating whether this could be an option for improving Corrigan’s sleep patterns however the most benefit for binaural therapies use headphones which I am certain Corrigan would never allow to be placed on his head (or in his ears).

Mark and I also use the Tranquil Moments sound system from Brookstone (thanks Dad!) that also uses Delta, Alpha, or Theta brainwaves which coaxes the brain to “match” these frequencies and enter healthier states of repose. Purchasing another system for Corrigan’s room is on our wish list (I don’t know that Mark and I could sleep without ours. We even take it when we travel but parenting is all about sacrifice so it might find its way into Corrigan’s room despite how much it hurts to watch it go.) and might be of some benefit though I really think that only headphones would really help Corrigan because each ear is “hardwired” (so to speak) to both hemispheres of the brain.

I do know that simply accepting that Corrigan has chemical issues in his brain causing sleep interruption, and not searching for a solution, is not an option.  Yes, I can adjust my own sleep schedule to match his because I do not work, and I consider Corrigan my full-time job, but I truly believe that until we resolve his sleep dysfunction his learning will not truly blossom.  Aside from the effects on Corrigan’s life, the sleep turmoil is disrupting the rest of our lives as well.  He shares a room with his brother who needs to return to school in a few weeks and cannot continue sleeping on the couch and Mark has a high-stress job that requires concentration that is also adversely affected by Corrigan’s nighttime issues.  No matter how hard I try to keep things quiet so that everyone else can get the rest that they need, Corrigan is a loud and boisterous two-year old with no concept of “inside voice” and thinks that my “shushing” him is a game.

Whew, what an update, eh?  It is important for me to keep track of these developments no matter how minor they may seem. Though I do keep pretty good notes in my planner and jot things down in his food journal as well, it is nice to get all of the information into one big post for review down the road.   It helps for me to gather it all in one spot so that right before I leave for an appointment with his genetics team, I can review everything that is taking place in the time since the last appointment and get it all to his team in a clearer manner.  I do not know about you but when I walk into the appointment, I tend to forget a lot of things that I wanted to talk about and when they ask what is “new” with Corrigan I always end up forgetting to tell them something, only to remember as I am pulling out of the parking garage.

If you made it this far, thanks for following along! Please continue to pray for Corrigan…your faithfulness is so appreciated!

If you are the parent of a child with special needs, whether medical, developmental etc) and are seeking support, please join us over at Support For Special Needs! (supportforspecialneeds.com)

I’d like to share a post from over there today that really spoke to me.  Please visit HERE for a post by Christy Everett from Following Elias.

Happy Tuesday to you!

Mindy

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