Home of the Four Trans

The weather forecast called for clouds and rain. When I looked out the window this morning, it was bright and sunny. Perfect day for wearing a dress, I thought. I love dresses because it makes me feel put together even when I’m not. It says, hmmm, cute. Not, oh, she’s a frazzled mom who needs a shower.

I had spent the morning preparing these yummy Rachel Ray inspired chicken sausage patties to be eaten with rice or hawaiian rolls. I washed the remainder of the dishes from 2 days ago, loaded it into the dishwasher. I made Justin a banana smoothie for breakfast that he ate (yes!).

Physical therapy was canceled, again, today because Justin’s PT was just recovering from a respiratory thing. We erred on the safe side, and decided to reschedule for next week. So, our morning was more free than usual.

We did the OT thing, though. He had just been re-evaluated as required by California Children’s Services (CCS) to see where he is developmentally, whether he’s reached his goals, and what new goals are to be made for him. It seems he has sensory loss in his right hand/arm (result of stroke), which makes it difficult for him to realize to use it–he cannot feel that he has that part of his body there. He cannot flex his wrist upward, or turn his arm into supine position. He does have some control of his shoulder and elbow which enables him to voluntarily bring his arms up and down, and side to side. With those motor functions, he can help dress/undress himself, knock over blocks, spin a big wheel. He can also bear weight through his shoulders while on his belly, on all fours (assisted), and side sitting. Being able to bear weight through his shoulders also enables him to combat crawl forward and sideways (although, he still prefers to roll).

Here are some other things Justin can do:

Stand unassisted for a good 1 minute. The blue thing on his hand is a splint to help keep his hand open from a tight fisted position.

Enjoy a bottle with his brother (unassisted, but only sometimes). He’s learned to compensate.

We’ve had him for a year post bi-directional Glenn. Now, the Fontan (the third of the palliative surgeries) are in the forefront of our minds. Thoughts of how another open heart surgery will affect him are prominent and persistent. I wonder, “What if he has another —?” Then, all our hard work in the past year will mean nothing?

As unhealthy as it may seem, I will not stop thinking these thoughts. With these thoughts come questions that I hope will help me find some answers.

When I think and plan for the worse, it also helps me appreciate the here and now. Justin is here, and he smiles, and he knows his Mama. He loves his Mama, in fact. He fights with his brother for toys. He grunts when he doesn’t get his way. He whines when he wants to be carried. He follows instructions, mimics, and is always the life of the party.

Yes, I push my child in his therapy exercises and massages, everyday. And, heck, it can get exhausting when all I want to do is play with him, and let him play in peace. In the middle of it all, though, we cuddle and laugh, and let go of the heavy burdens he’s been born with in this life.

Like today, we had a ho hum day of nothingness.

When I was skeptical of the rain, I had made plans to take the boys to Woodbridge Lake, closeby Nathan’s school, for a delightful lunch with the ducks, swans, and midges. I had even packed some soon-to-be expired hot dog buns.

By the time we had gotten out of the school doors, the sunshine had gone away, and clouds had started to blanket the sky in a soft grey.

We headed to my mom’s house (Ba, to the kids), instead, to hang out. My sister was home. We watched a bit of “10 Years Younger” on TLC and each took a shot at how old the lady was before they started her transformation.

Nathan played with a broken eucalayle from his room (my old room). Justin watched his brother in awe. They slept. We ate. Just one of those ho hum days.

In the evening, I headed out to Nathan’s school for a Parent’s Education Night about Mathematics in the Montessori program. Very impressive. It was a 1 hour instruction on how toddlers and primary schoolers learn the foundation of algebra (addition, subtraction, mulitplication, division), and the idea of carrying and exchange using the Montessori tools. Nathan is definitely staying in this program.

I also asked the academic director about Justin, and when she felt it was appropriate for him to start the Montessori program, given his delayed development. She said she’d at least like for him to have his gross motor skills so that he would be upright and walking. This is for his own safety as the other toddlers will be wearing shoes and bringing in a lot of germs on the ground. Always good to know.

Hope you all are doing well. Thank you for checking in.

This entry was posted on Wednesday, February 11th, 2009 at 2:42 am and is filed under Justin, Nathan, Stroke, Videos. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.