R.I.P. Godfather

Is it just me, or did the NYT obituary of James Brown seem way too short? Looks like they vamped it up to 2 pages now.

Yelena L. Jackson

I leave Yelena alone with the boys for a few hours and see what they do? I don't have the energy to photoshop the thought bubble, "Get the motha f-----g hat of my motha f-----g head!" but I am sure that's what she was thinking.

OT

One of the advantages to not touch typing is that having a finger splint doesn't really slow me down too much. As a violinist (let's hope this injury doesn't make me all erstwhily) I am used to alternate fingerings. But the bugger does hurt, thanks for the flowers. (Ahem.)

Thursday, Yelena had her occupational therapy evaluation. Of all the varied therapists and doctors she's seen, I felt the OT therapist instantly got her. When asked if she liked the water and I replied that she loved swimming, the main therapist asked, "When she is in the water does she come alive, and act as if that is her natural element?" Apparently, the pressure of the water gives children with motor planning (MP) difficulties a better sense of their body in space and helps them with body mapping, which the OTs instantly realized is one of her challenges. She also said she sees a 5 year old boy with coordination issues, similar to Yelena, who has been doing great with OT and is the star of his swim team, where he is the youngest kid and already placing with the backstroke! She also asked if Yelena loved music, saying that children with MP problems are typically very responsive to music. When Yelena bent forward into her ultra-flexible pose that we like to call Yelena asana, that everyone else thinks is either just adorable (which it is!) or that she's tired (which is only sometimes), the OT said that Yelena likes to look at things laterally, too, and that looking at things from different angles helps put things together visually for her. (My daughter, the cubist.) Of course, they noticed how social she was and that she was more into people than things, and didn't make it sound like an example of passivity, but of curiosity.

Until OT starts proper in January (stupid holidays), we were given some exercises, including drumming and listening to some drumming CDs. We are also supposed to keep up with the vestibular system stimulation; the OT said Yelena's craving of the bouncing means she really needs it and, along with the jumping, spinning and flying/landing on hands games we play, will further help with her body mapping. Another assignment she loved is playing with river rocks (I still have a ton from our wedding); apparently, their cool smooth texture is stimulating and she was great at finding the toys I hid amongst them. She is also, under adult supervision, supposed to play with dried beans -- their texture and weight supposedly is perfect for working with fine motor skills. (Sometimes her pincer grasp is perfect, sometimes too lateral -- it goes with her MP difficulty of isolating her index finger for pointing.) Finally, she is supposed to engage in messy play. Eli has put me on sole detail for this one -- his inner neat freak emerges the second her hand gets into the yogurt. Last night, the sight of her covered in ravioli stuffing, veggies and yogurt -- even after I wiped a layer off -- nearly did him in. She sure looked cute, covered in goo, but I did go and wash my hands and her spoon handle a few times and had to wrap a paper towel over my splint. Fortunately, the therapist suggested this only a dinner time before her bath -- although I've always let her hand scoop some oatmeal at breakfast. That stuff is paste.

Excellent

This is the other picture I took that I wanted on our holiday cards, but Eli convinced me that the one we ended up using was a little less Mr. Burns.

Sticky Wicket

Bloody hell, I have a mallet finger. The tendon may have snapped completely or only part way, the x-ray only shows my bones, which are fracture free. To heal correctly, the splint is angled upwards and I have to wear the sucker for 6 weeks. I typically heal quickly, so I am hoping by 4 weeks it looks all pointy again. I'm making an appointment with an orthopedist just to double-check the damned thing. Now there's an upside to having been way too busy to play violin these past few months -- I'd be really pissed if I were on a musical roll. Now I just have to avoid wacking or scratching Yelena with the splint.

Update

The Yelena dumpling is doing well, as snuggly and cute as ever. We've gotten more accustomed to her hazily diagnosed status and we have a better idea of what's going on. What I failed to explicitly mention is that all her delays are directly related to her issues with motor planning, which stem from whatever is wired differently in her brain. (I will snap at the next parent who tells me I'm lucky that she's not moving yet; yeah, she's really lucky she has to work her tushie off doing things that are involuntary for your kid.) Her motor planning issues explain the idiosyncratic nature of her skills (e.g. she can kiss different parts of our face on command but can't point them out on herself). Per the neurologist, worst case scenario her receptive language is only about 20% delayed, whereas the speech therapist she saw today doesn't think it's delayed -- it's difficult to determine because of her scattered expressive language skills. We can see her trying to move her mouth to form consonants but her inability to get some of them out is connected to the motor planning problems. The speech therapist was pretty confident that therapy would help, so we're looking forward to that starting.

Yesterday, she went in for an audiology evaluation, just to ensure hearing is intact. Although her infection is cleared up, she still has some fluid behind her eardrums and the audiologist didn't want to do the test because if there were any signs of reduced hearing it would probably be from the fluid and not actual loss. (The graph of the movement of her eardrum wasn't flat, but it wasn't all spiky; she estimated 40% fluidy.) The audiologist's opinion was that Yelena seemed to hear ok and that there was no reason to wait for speech therapy, she'll just do the test in a month when everything should be drained. Since neither her pediatrician nor neurologist noticed the bit of fluid (the audiologist said something snide about them not trained to look in ears properly) we might have our ENT friend take a peek-a-boo periodically in her ears.

Tomorrow we have an intake visit with Early Intervention. In the interim, we are scheduling ST and OT through Children's Memorial, where Yelena does her PT, since Lord of Bureaucracy only knows when EI will get everything in line. Even at Children's, they didn't have slots for evaluations until late January/February, but Evette pulled some strings and Yelena has her OT evaluation this week, as well. In other good news, Evette has EI certification, so Yelena can keep seeing her even when EI enters the picture. I think they would miss each other very much, since Evette tells Yelena that she could play with her all day and that her hour always goes by too quickly. Everyone loves my love bunny.

Queen Klutz

My posting is impeded as I jammed my finger. How? In the highly athletic pursuit of moving a blanket off my leg. Yup, my left middle finger is at a weird angle because it collided with my thigh. I taped it to my ring finger until I can get to buy a splint tomorrow. If it still looks funky, I guess I'll make a doctor's appointment. It's more irritating than anything, and slightly amusing to see my first joint jauntily bent. I don't have a primary care physician so now I'm going to have to go through the hassle of finding one if it doesn't get better. Grumble.

Baby Belly Dancer: or, Tangled up in Blues

Neurologist

After seeing a highly qualified neurologist, it has been determined that our lovely Yelena has a congenital brain disorder. In the doctor’s words, she is a complex case as her developmental delays are idiosyncratic (in some instances, she can perform advanced tasks without having mastered the basics). Because she is very engaged (great eye contact; highly social, affectionate and responsive; no behavior or sensory issues), has had no regression and we got an early diagnosis, it is hoped that with proper therapeutic intervention she will be completely mainstreamed by kindergarten, at the latest. Yelena has been working hard in physical therapy for the past few months and we are looking forward to working with her in speech and developmental therapy.

At this time, no MRI nor blood work has been ordered as it would not change her therapeutic course. It is more important to us and her doctors that she progresses rather than go through excruciating and exhausting tests merely to give a precise name to her condition, or to discern whether its causes are genetic or a fluke in the prenatal development of her central nervous system.

We appreciate the continued support of our friends and family at this time. Because you are all good people, we know we can count on your discretion and compassion in discussing this matter as well as you continuing to treat Yelena as the delightful, complete person she is. Although no parent would choose or foresee these hurdles, we could not love our little sweetie any more and we are determined to ensure her happiness and emotional well-being while we overcome these challenges.