Willow’s doing well

It has been a little over a week since we had our big scare with Willow. She seems to be doing great. We’re in the new house now, having moved in on Wednesday, and are still unpacking the stacks and piles of boxes that followed us here (too bad some of them didn’t fall off the truck!). Our new kitchen is plenty big and has lots of storage, yet already I am reaching its limits and still have at least 20 more kitchen boxes to unpack. How did we accumulate all of this stuff? But back to more important matters. We haven’t seen any evidence of fever in Willow since we left the hospital last weekend, though I still probably touch her forehead and stick thermometers under her arms more than she wishes. She went back to daycare for a few hours this morning for the first time in more than a week. When Gong picked her up mid-day she was deliriously happy and has been laughing and giggling and basically cracking herself up all afternoon and evening. It was hard to get her to sleep tonight yet she showed no interest in an afternoon nap. I think she’s feeling pretty stimulated as she explores all the new weasels (our family’s term for small, private spaces, often behind furnishings or in closets) this house has to offer. She has also in the past couple of days decided that climbing is really fun and funny. She started out climbing onto the chairs and couches, which we thought was just fine. Within hours she was climbing up on the box stacks and tables. Now we really have to watch our little monkey. It’s hard to feel upset with her over any of this. She is exploring her world and testing her physical capabilities. That she feels so bullish to do so is a great sign that she’s feeling good and that her coordination, in the wake of the seizures, seems uncompromised. I expected a little bit of regression after we returned home from the hospital but in fact we have seen progression. So while we are still worried that the seizures might occur again sometime, so vivid do they live in our recent memory, and while we still do not really know what caused them, we are taking some comfort in Willow’s good moods and astonishing activity level. We’re exhausted on all sorts of levels and Willow’s frenetic explorations give us no time to rest. But we are so pleased to have our little whirlwind home with us, happy and seemingly healthy. I swear she grew an inch taller today. We’ll post some new photos as soon as we unearth our cameras. For now I’m concentrating on finding the box with the coffee in it.

Brief update to the last update

We have learned that a contagious throat virus that one of Willow’s daycare colleagues had last week is called Herpangina (http://www.drgreene.com/21_1113.html). It manifests in mouth blisters and sudden high fever, both of which Willow had. I just took her for a throat culture which, we hope, will determine whether it was this virus that caused her high fever. I am not sure why nobody in the hospital thought to do a throat culture, but it didn’t happen. We will see what results.

Willow is recovering

As I write this (this is Bonnie writing), Willow is lying beside me, having just awakened from a good, long, two-hour nap. (She wants to know what I’m typing.) We brought her home from the hospital on Saturday (the day we were supposed to move; we’ll be moving Wednesday instead). Since then her recovery has been amazing. By yesterday (Sunday) afternoon she was dancing to her Rockabye Rolling Stones CD in the cutest, most heart-breaking way, twirling and slowly lifting and lowering her arms like a ballerina. And she has a new move called “the monster” in which she hunches her shoulders and lifts her arm in front of her and walks around like Lurch. We’re not sure where she learned it, but we think it’s pretty funny. She’s been laughing and smiling and has started to eat and drink again, about which we are relieved. Though many of our belongings have already been moved out of the house and much of what is left is in boxes, the key items are in place to make her feel at home: our dining table, her high chair, her crib, her playpen, most of the living room furniture and the all-important TV, on which she can watch her Wiggles, Teletubbies and They Might Be Giants DVDs. The stereo and stroller are also in place, so that she can take her naps lying prone in the stroller, listening to some of her favorite music.

Aside from all of the medications she had in her, which we think caused her to feel pretty bad, we also discovered soon after leaving the hospital that she had some mega canker sores in her mouth. This probably figures highly in her disinclination to eat or imbibe. Gong found her some topical medicine for the sores at the drug store, and she has been eating and drinking much better since he began applying it.

We’re still scared, of course, that this will happen again sometime, but for the moment we feel so grateful that we have our little Willow back again, seemingly happy and healthy. We still do not know the exact cause of the fever that prompted the dramatic spike in temperature that threw her into seizure. Working hypotheses were urinary tract infection, kidney infection, or meningitis, but all of these tests came back negative. I spoke to our pediatrician this morning. He does not think it’s all that important to continue testing for the fever’s cause, since she no longer has a fever and is no longer seizing. He is advising that we take her for an EEG to test for neurological damage, and we will. But I know this little girl pretty well and do not see any cause for concern that she sustained any damage to her brain due to the seizures. I could not have said this a couple of days ago, when her tongue seemed swollen in her mouth and she couldn’t find her balance while standing or sitting. In retrospect, I believe those things were due to the legions of drugs she had had administered to her on that first day in the hospital (Dilantin, tons of Ativan, Versed, Ketamine, the list goes on). Now that her little 24-pound body has had a chance to rid itself of the drugs Willow is doing so much better. And now that she’s home from the hospital, amid familiar surrounds and enjoying her reunion with Waylon (whom she likes to cuddle up with whenever he allows it), she’s doing so much better. Thanks, everybody, for your concern.

A Big Scare

Today, amidst a week of intense and exhausting packing (we are moving to a new house), Willow had a seizure.

We noticed she wasn’t feeling well, not herself at all this morning, didn’t want to eat, felt really warm, was restless, irritable, agitated, didn’t know what she wanted. We were at the new house going over some details and about to get back into the car to go back to our current home which is in a state of total upheaval, when Willow suddenly got stiff in Bonnie’s arms and began convulsing and frothing at the mouth. It was if several timescales all collapsed into one, neither of us conferring as to what to do, me wildly gesturing to get into the car, Bonnie holding Willow in the front seat, Bonnie calling 911 on her cell phone, me gritting my teeth and in a nanosecond calculating that it would be faster for us to drive to St. Vincents than to wait for an ambulance.

We got there in less than 5 minutes. I don’t think I’ve ever driven as precisely or honked as much in one shot in my entire 25 years behind a steering wheel. There was an entire triage team congealed around Willow within seconds of Bonnie bursting through the emergency room doors screaming, “Baby! Seizure! SEIZURE!”. The whole day was a blur. She had close to 103 degree fever, the many hours in radiology for her spinal tap to test for meningitis was a shocking ordeal. The sheer number of sedatives it took to calm this strong little girl down was astonishing. She seized at least 3 times over 45 minutes and it was utter slow motion torture watching it all unfold. Our friend Lizzie (Dash’s mom) came immediately when we called her. Willow’s teeth were clenched so tight I thought they would all shatter. Dr. Putnam and his team were incredible. Man, the high-tech equipment in hospitals these days. Tape, tape, so many kinds of tape. And tubes. The needles. So many needles. So many hands needed to hold Willow down…….

This is Gong writing (Bonnie usually writes Willow’s blog), and I must fast forward all the emergency room drama since I just can’t relive it all right now. Bonnie and Willow are resting in a comfortable room in the pediatric ward. Willow stabilized and most of her tests point to a urinary tract infection which caused the fever, and the sudden spike to almost 103 degrees caused a complex febrile seizure. She is not out of the woods yet, but we hope that she is going to be ok. More tests tomorrow. I am back at home tending to our dog Waylon. I need to sign off now as I need to let the day’s events pass through me so that I may release. I spent the whole day trying to maintain my center and remain stoic, and I definitely feel like I am about to unravel now.

Bonnie and I have never been so scared in our lives.

Willow Likes Art

Last Saturday Gong and I and our new friend Dori Tunstall (who is visiting Santa Fe this summer from Chicago) took Willow to an art show in Albuquerque called the Cradle Project. Five hundred artists designed and made cradles out of found materials in order to support the efforts of the Firelight Foundation, which helps feed, educate and generally support the health and well-being of children orphaned in sub-Saharan Africa due to disease and poverty (www.thecradleproject.org). All of the cradles are being auctioned off online in order to help raise funds and awareness. It was fascinating being led through the vast exhibit by Willow, who had quite definite ideas about which cradles were worth deep exploration. Dori noticed that she favored colorful cradles with shiny objects and streamer-y type elements that were ripe for tugging, pulling, probing, and rocking. Dori caught Willow’s serious expression as she explored the first cradle to which she was drawn. Perhaps she had some pre-literate awareness of the somberness of the exhibit’s occasion. Or, as I mentioned to Dori, maybe her diaper was wet.