Tuesday, January 21, 2014

The 100-piece puzzle

Is it Tuesday already? The days all sort of blend together for us lately. Elijah continues to improve every day. He is much more alert and he is slowly regaining his balance. We are still worried about his safety when he is away from us, so he will be doing homebound schooling for a few weeks until his balance is back to normal. Starting tomorrow, his special education case manager will come to our home to work with him for one hour/day. We are very thankful that she will be the one coming to teach him, as she has been such a positive part of his school year.

We are in the weaning process with the Valium (this has been helping with dizziness and vomiting since surgery). We are currently giving him 1mg 1x/day. This is WAY down from the 4mg 3x/day he was receiving in the hospital. Super progress!

We have a big appointment coming up for E on Thursday at an attention-learning-memory center. He will receive extensive testing over four separate appointments to test for ADHD, sleep disorders and various other things. We feel like we will walk away with valuable information, as there are so many "labels" he kind-of-but-not-really fits into. In preparation for this appointment (and also for his upcoming special education re-eval), I have been observing him very closely and writing down all of my observations. It's amazing what is revealed when I force myself to OPEN MY EYES.

There are "things" Elijah has done for years. Some since he was a baby and that I've written off as quirks. In the past week I have really paid attention to these things (as they seem to have gotten worse since surgery) and had a major lightbulb moment in church on Sunday. I will wait until it is confirmed by a professional before I share, but I feel very confident that there is something we will be adding to his "list" soon.

I also want to look into OCD (I know he has this on some level), ADHD and anxiety. It is overwhelming right now to consider all that his little mind is dealing with! Not to mention sudden one-sided deafness. We have had to start thinking about how to make his life easier since his surgery. We have begun sitting him on the left side of the car and table. I try to make eye contact before talking to him and if I speak to him from another room I tell him where I'm located. This will be a process for us.

In all of my observing/thinking lately I realized that Elijah is NOT good at telling us what his body and mind are feeling. I've started working with him on this. We do periodic "body checks" where he tells me what his current feelings are (sad? upset? happy? anxious?) and what his body needs at that particular time (thirsty? hungry? potty? pain?). He currently seems confused about his hearing loss. We told him before surgery that he'd likely be able to hear again afterward, so he keeps saying, "I can hear again! Right? Because I had surgery?" But then when we ask him if he can hear out of that ear he says, "No."

We have A LOT to get through this year, I feel it deep in my bones. But I know we'll get there. Dan and I will never give up. We will continue to fit this 100-piece puzzle together that is all blue sky and grass. It is sometimes frustrating and confusing, but we will get there, we have no doubt. We love our boy...BOYS...so much. We adore Sammy to PIECES! Oh my goodness, he is absolutely the cutest, sweetest thing (when he's not punching me in the face). Seriously, he punched me square in the face the other day and I said, "WHAT was THAT? NOT OK!" He said, "But I didn't do it! My puncher did!" :)

Thanks for reading! Please pray for ANSWERS, healing and progress. Thank you!

1 comment:

jencooper said...

Love you friend.

I am very proud of you for looking deep within yourself and E. I know that it is NOT an easy process. Answers are hard to face sometimes.

I am praying for you to put the pieces together. I am praying for strength as you face getting answers.

You are the best mama to those boys! They are so lucky to have you.