Tuesday, July 7, 2009

Sunny

The sun has been shining bright on the Littlejohn house lately. We had another fantastic week. Meltdowns after transitions have been few and far between. When she does have one, we ask her to go to her room and she usually goes willingly to get herself calmed down. Bob and I just kind of look at each other like "is this really happening?". I'm so proud of her and how far she's come.

She spent a couple of nights with Bob's folks last weekend and Bob and I were both dreading the few days after her return. Generally they are filled with giants sobs and an inability to cope with anything. This was not the case this time and makes us realize there is a light at the end of the tunnel. Even though we've been told this would happen and she would begin to understand more, it doesn't seem like it will ever happen when you are going thru it.

Once we picked up Payton and Koen after being gone for a couple of nights, I sat in the back seat and watched Payton stare at Bob for nearly an hour and a half trip in the car. Not just a typical stare, but a stare that looked like she hadn't seen Bob for years. She was studying his face and asking him to smile a certain way. I've never seen anything like it. It was almost mysterious, like she was memorizing every freckle, every crease. In articles, I've read about babies with ws....how they look more at faces and really gaze. Payton did that as an infant, but this is the first time I've seen her do it this much lately. She had me mesmerized.

Life is simple at our house. We spend nearly every evening at home - usually outside. Koen is typically riding his little three-wheeler, playing baseball, or swimming while Payton is usually sitting at my side using her daddy's iPhone to listen to different train signals. I sometimes get sad that she's not up and playing with her brother more often, but the sound of train signals for some reason is something that really makes her happy. And it also seems to help her relax - just sitting there doing her own thing. I'm sure some would call us quirky, but we are enjoying our peaceful evenings - even if it does include train bells :)

Sleep actually exists at our house now! Just going on mother's instinct, I believe the major cause of Payton's sleep issues were blood pressure. This past weekend she was complaining of her eyes hurting (which for her, is the clue that her blood pressure is up) and sure enough, her blood pressure was high and her sleep (and behavior) was 'off'. On one hand I am so happy she is feeling better and sleeping better and on the other hand, I feel sad for her that for five years she was miserable and we just couldn't get a good reading to know why. But - I can't think about the past....I'm just so incredibly thankful she feels better now!

Before I sign off here, I just want to ask you to please keep Avery and Michaela in your prayers. Avery is recovering in ICU and Michaela had an MRI last week. I know their families could use all the support and prayers they can get.

9 comments:

Tes said...

Tara i am so happy that you are seeing her calming. They really are amazing in their leaps. Lila has come so far lately I need to update my blog but time keeps getting away from me:)

btw WHAT is going on with Avery? I think i lost amy's blog when she went out for a while.

Tara said...
This comment has been removed by the author.
Tara said...

Tes - I'm sorry I didn't really think I explained it very well with Avery.....she had a perforated stomach because of the ulcer. Also wondering about heart block.........

Tes said...

oh my gosh! Is Amy keeping the blog up on her status? I will check on her there. Thanks for putting that on here.

Amy said...

WOW~~ Very cool!!!! Maybe I'll blog tomorrow and catch everyone up...sleepy, camping in the parents lounge in the cardiac unit...blah!
amy

Nancy said...

Awesome! Things do get better, don't they? It just takes some time. Lots and lots sometimes. Urgh. BTW, Erik had lots of autistic traits as an infant. He never looked at us like that...I had never heard of that until we went to the convention. He smiled at inanimate objects and not us. He is sure making up for that now! :) I am so happy for you and your family. xoxox

Michelle said...

It always seems to me with our WS kids that things don't gradually happen instead they happen all of a sudden and all at once. Maybe it's just my perception but even the little thing like this with Ari still take me by surprise...Things that you never dreamed of last week suddenly happen out of the blue the next week. I am glad that it is something that is bringing everyone more peace and joy....you so deserve it ...so so so much!
xoxo

Noel said...

I am so glad that things are going well at your house. I agree with the BP thing...I think Abi's new sleep issues are related to the BP again!
Sending you hugs and can't wait to see you guys again!

Julie said...

So glad things are good right now. Amy and Avery continue to be in my prayers.:)