This month baby is photographed on Kokka Lighthearted Text available at Sew Modern!
Oh, my friends, what a difficult time it's been! I wish I could bring you better news. We missed our regularly scheduled update because, you guessed it, baby was in the hospital again. We were discharged on Monday, but this time it felt so different. Instead of returning home with an optimistic "and now she'll be better" outlook, we brought her home with as many questions and concerns as we had when we arrived in the ER a full week before. She came home on two new maintenance medications and on an antibiotic for a bacterial infection. Time will tell if these medications will help her fully heal from whatever began bringing her down mid-September. Yes, September. She's been unwell since our trip to Chicago in September, with short periods of improvement followed by repeated set backs. Fevers, rashes and unpredictable oxygen needs have become a regular part of our life with Eleni. Her doctors are doing their best to pinpoint what ails her, but if these meds don't fix things we'll be looking at a surgery (or two) in the next month or so as the next step towards getting her well.
It. is. completely. exhausting.
For Eleni too, of course. Now, back home, we are trying to find what makes her feel better, how to keep those muscle/tension fits at bay, her heart rate down and, if possible, how to encourage her to move.
Despite the extra muscle tightness that being sick has been holding over her, Eleni has made some progress in the past few months. I have a foam wedge that baby can roll down unassisted. Believe it or not, she wasn't able to do that when I first tried early September. Since she got the hang of it, I've been raising the wedge little by little to make the surface less slanted. And she can still roll consistently! So, we're not rolling on flat ground, but we're getting there.
- Opens and closes her right hand throughout the day. Still not using the hand, though.
- Therapist was able to full extend her right wrist yesterday, something we've only been able to do a few times in her life. It should be noted, that we do not use splints with her.
- Getting closer to independent rolling. Has rolled on flat ground from tummy to back and from back to tummy, a few times each way by accident.
- From her stomach she has learned to lift and sustain her head up for 30-60 seconds at a time. She can not hold it for long, but has much more control than previously.
- Learning to lean on her arms, which helps with sitting and safe falling.
- Can come to sitting with plenty of assistance. She's tapping into lots of muscles to participate with this one.
- Increasing head coordination. For example, when her therapist pulled her arms to bring her to sitting, she brought her head up without a lag and in midline for the first time.
- Sometimes bringing herself into crawling position with minimal assistance. She surprised me with this the other night and did it a lot with her therapist yesterday.
- Started occasionally moving her jaw and opening her mouth.
- Can localize sound within 8" of her face.
- Improved visual reflexes in October as compared to her initial exam in July.
- Made an attempt to track (per Dr. Zelinsky), but no success yet.
When Eleni is evaluated by therapists or developmental doctors this fall, they often comment that her motor skills are better developed than they would have expected by the way her eyes and face present so absently. I credit this to her work with Anat Baniel Method (ABM). Even though she cannot do much yet, the groundwork is there. She's learned to both extend and contract, to use her spine and her pelvis. These are the basics that often allude children with cerebral palsy who don't become mobile. I am eternally grateful for the opportunities she's been given to benefit from ABM and will continue to bring her to lessons so long as her health, my sanity and finances allow.
When I put her on her tummy today during our photo shoot, she pulled her arms down and scooted her body forward on her stomach. It made a royal mess of the fabric, but demonstrates how much she wants to move!
Moments later I caught her "sour face" on camera for the first time. She makes this pain face many times each day, and we've never known with certainty why. Possibly the surgery we are considering (called a nissen) will help her feel better.
My little baby. Here's something I didn't even know was a "thing" before the early interventionalist asked... Eleni can be propped in a sitting position. Woohoo? That's a good thing. Really, it is. Some brain-damaged babies have such low muscle tone that they fall over like a wet noodle immediately. That she can do this already means it's likely she'll be able to sit in a chair someday. Eleni has enough trunk stability and spine organization that she can sit propped up like this indefinitely.
Even when she's soooooo sleepy...
And so ready to be done with mama's photoshoot!
Well done, baby girl. Let's let her rest.