I was able to do, roughly, all the things I set out to do: 1. Go on a date with Jeff, 2. Spend quality time with Keira, 3. Do something creative/crafty/artistic, and 4. Get caught up at the office. Not too shabby.
We got no real information from Keira's ophthalmology appointment. Our assessment of her vision is about as good as any, and that is that she can't see very well. Because the problem is coming from her brain and not her eyes, glasses probably won't help. We plan to go back to that doctor in 3 months, hoping that with a few more months of development under her belt, we might be able to get a better idea of what's going on.
I made an interesting (to me, anyway) observation of the difference between doctors and therapists that day. We saw the ophthalmologist and pediatrician on the same day, contrasted with the OT and PT the day before and the day after. Seeing the MD's is a little more depressing. Their job is to tell you what's "wrong" and give you a realistic prognosis. And with K, the "problem list" is long. Upon checkout, we most recently received this list in writing:
- Congenital CMV infection
- Neonatal hepatits
- Microcephaly
- Thrombocytopenia
- Conductive hearing loss, bilateral
- Cortical vision impairment
- Cerebral palsy related to congenital CMV
- Estropia
Sheesh. My point is that seeing the therapists is much more encouraging. They see Keira in her home environment. They see how much she has progressed, and their job is to help her be more functional. Thank God for them!
Keira's biggest triumph recently is her ability to self-regulate. She can tolerate so much more and it is helping me to feel more and more "normal." We are much more able to take her in the car, run errands, go to the gym, etc, with her in tow. This makes a world of difference. It always made me feel torn to leave her at home while the rest of us went out....
Which reminds me that our family outing yesterday excluded Keira, but provided a great opportunity for us to talk to the boys about disability. We participated in the Color Run, which is a 5k that supports Special Olympics. On the way over, we talked to the boys about what the Special Olympics is. They are so amazing. They take all of this in stride. It should be an example to all of us. Even when I talked to Ronin recently about how, in the future, if we were to go as a family to Disney World, Keira might have to be in a wheelchair, he thought nothing of it. Anyhow, it was such a fun event. I highly recommend it. And we'll keep enjoying it for showers and showers to come! (Liam's scalp is still green after 3 washes and Ronin sweat bright yellow today.).
As I said, things are feeling much more settled to me. It seems much less heavy to talk about K in everyday circumstances. But some things are and will always be a little different when it comes to parenting her. For example:
- I have a tendency to say, "we" instead of "she" and talk about her as if I am the disabled person and not her. A heyday for my future therapist.
- We recently thought we might be having to look for a new car. Thankfully we don't, but the idea of having to look for something that could accommodate a wheelchair and other gadgets was a little intimidating.
- I was a bit neurotic taking Keira to the doctor regarding a swollen eye the other day. I found myself thinking crazy thoughts like, "what if her infection has resumed and her brain is swelling and the swollen eye is the first sign?!"....It was a mosquito bite.
We're resuming therapy this week after a whole week off. K's going to spend lots of time with her aunt Steph, who's leaving in August for a year abroad, earning her master's in art history. We are going to miss her. I'm thinking of making a casting of her arms and inventing some "L'eau de Steph" to get K by for the year.
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