The last six weeks of our life with Grace have brought every emotion there is. I have been angry, I have been sad, I have been happy, I’ve been in awe, I have been scared, I have been nervous, I have laughed, I’ve been frustrated, there have been tears.

Nothing is stable. Not her seizures, not her energy level, not her team.

It’s exhausting.

I wish that we could find her some stability. I wish I could protect her. It’s such a big world.

We had her conference at school this week. She’s meeting goals. She is showing strength and attitude. Her kindergarten teacher commented that Grace is no longer just letting people move her – she is actively engaging. She is making choices with the help of communication devices – we are hoping to have one soon that she can use at any time- not just when she’s in speech therapy and not just when she’s at school.

We are feeding her different things here and there. I just love to hear her crunch a Gerber Cheeto. She does it with such determination. It’s disheartening at times to see it float around her mouth because she loses it in her mouth when the crunchiness is gone. She will get it I tell myself..and even if she doesn’t it will dissolve… no harm done. We lost her speech therapist that had been working on this with her. No replacement plan. Frustrating…we are just off the diet…we can try anything..and no one is there to help guide us.

We got word today that her OT is also leaving. No replacement plan. Seriously?

School is back looking at the nurse question…they tell us not to worry. I think that isn’t realistic. We don’t do what we do without nursing. Our family would have to find another normal….require more flexibility of others then we already do! I mean no disrespect, but I’d like them to stop telling us not to worry- its a very personal thing for us.

Our princess friend was waiting outside of the kindergarten room when we got to conferences. She asked me where Grace was..I responded she was with our friend Julie. She said, with much feeling, “That’s too bad, if you would have brought her I could have played with her!”

Another girl in Grace’s room sends home the most beautiful artwork for Grace.

Grace woke up with a swollen leg one day. She cried when picked up. X-rays and blood work and doctor. No answers. Swelling down. Crying stopped. Cautiously getting back to regular.

New braces could be throwing off her gait.

New glasses were needed because the old ones smooshed up against her face so much they were constantly fogging over. It took 3 trips to West Des Moines to get it figured out.

She is dancing again. Love dancing…her opinion about it has not changed.

She is leaning really badly in her wheelchair. Why? (This definitely requires some kind of intervention.)

So that’s some of it.

We sign up for baseball on Saturday. What choice do we have? Bring it on.

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