photos from this evening

Okay, he's only been asleep for about a half an hour, and Lars is already awake having a party in bed... Don't know how long I'll get to write. His nights are like wiggle-wiggle-madnuzzle-squirm...zzz...private party!...zz...wiggle-wiggle-madnuzzle-squirm...

Today was great, excepting the morning pain. Went to the respite center for a while & had a great time there, especially in music. They call him "the music man." He was in a bean bag chair with a bunch of kids watching a movie in the "slumber party room" when I came to get him, wiggling around & grinning ear to ear.

Napped after respite, but was nudged awake for dinner. Our friend Ginger from church came to help out & fed Lars a great dinner, then got him to sit on the floor & do some playing. He hasn't been willing to sit and play for many weeks, and it was so encouraging to see some of the play skills that have disappeared lately (like touching toys, or banging, which was just emerging when the pain started) beginning to come back.

We had a yummy quiche (thanks, Sue) and cookies (thanks, Sandra) for dinner, and then while Ginger had Joa, we scooted around and got the dishes done, kitchen cleaned, groceries from days ago put away, floor swept, part of the basement overflow food shelves organized...

Joa spent the evening with Hanna & Danny, and had a wonderful time. He got to rent a movie, eat pizza, laugh, and have a great time with two of the finest people you'll ever meet. He was a total sweetheart when he returned, wanting to snuggle his little brother. Although tired, he even managed not to melt down about the fact that he forgot his phone & ds lite at their house.

I've been harassing Andey to do some writing about the appointments she's taken Lars to this week (Epilepsy Dr. Betterthantheguybeforehim and CCS Dr. FreshFace). Silly woman thinks sleep & other such nonsense are more important than blogging. Hrumph. She did start & this is what she got:

"So Tuesday we went to see his new doc from the CCS. which is short for "complex care service". This doctor [heretofore known as Dr. FreshFace -LK] had spent two hours the day before reading Lars' whole medical record. He was empathic, a good listener, made me feel heard and respected which is relatively unusual in this whole mess. He also had a few new ideas, the best one of which was that Lars might have a fracture or other bone problem in his hips or legs or feet - kids with disorders of muscle tone often have trouble with bone development and can get fractures pretty easily. Other ideas were about optic neuritis - the epileptologist the next day thought Lars didn't really fit that picture - and also that it might be worth doing a scan of his brain to see if there are any changes."

Turns out they found he has something called a "coxa valga" structure in his hips, but it wouldn't necessarily cause pain like this. It means we need to keep an eye on his hips, as they could dislocated when he's older.

His endoscopy biopsies came back with a diagnosis of "mild chronic gastritis" of the stomach antrum. We don't know if it could theoretically cause this much pain, but are trying to find out.

I keep falling asleep...

Wednesday night I had every intention of writing for a good long while. Got the photos up & a paragraph done, then fell asleep on the couch, computer on lap.

Same story last night except I didn't even get started. The "create new post" window was open on my lap, but that's it. T'was well after 10 by the time the boys went to sleep & this mama was dog tired.

The short story is that Lars' pain continues, but is lasting for a much shorter time. We've gone from pain maybe 85% of awake time down to 15% or so. What a relief. Wednesday was the only pain-free day. Yesterday was pretty good except an hour in the late afternoon. When he experiences the pain, it's very similar to what it has been: from screaming violently & turning beet red & eggplant purple, to big tears & deep sadness, to more sedate complaining. It all seems to involve arching the back alternating with bringing knees up.

This morning he woke happy, but has been extremely sad for an hour and a half now. Much pain & big tears abound.

It's so mysterious, this pain, coming and going. Perhaps Advanced Colic, or Type II, Non-Infant-Dependant Colic?

I'll write more soon about what CCS doc had to say... Thanks for reading.

fantastic day

Lars had a wonderful day. Especially the evening--he didn't cry once between when he returned home from his appointment with Dr. Betterthantheguybeforehim and falling asleep--get this: on his own, without a peep. It was like having our sweet old Larsy back; he was totally mellow & happy, ate a great dinner, even giggled when I lay him down to change his diaper. I haven't seen him like this in...two months? So thrilling.

quick summary

Ah, I have so much to write & most of it's going to have to wait. Sleep overtook me last night, then I hit the snooze button over & over this morning...

Okay, quick summary:

So-so day yesterday in terms of pain; off & on.

Slept through most of Perkins group, woke at the end, very happy to meet Rosemary & Marcie, very happy to hear Jill. Music therapy was thoroughly breathtaking, the spark & essence of Lars so clearly present again. He's so regressed in so many areas, but there he was, IN the music. It's a beautiful thing.

Left music & had a little snack waiting for Mommy.

CCS appointment was long & good, very investigative, new ideas floated. I have to get more details from Andey.

Sorry so short, I'm off to work.

this morning

This morning things aren't too bad. After a rough day & terrible evening, Lars slept really well last night. Granted, with valium & morphine on board, but we'll take it.

This morning Lars is managing to eat a bit of breakfast while listening to his Sesame Street playlist. Elmo rocks. Intermittent pain, but so far has been able to stay in his chair, ride through it, & recover enough to go back to eating. Drinking is harder, but we're feeding lots of thickened liquid types of foods.

Lars & I go to Perkins today, then he goes to his CCS appointment at Children's, I go to teach in Cambridge, Joa goes home with a friend for dinner, I pick Joa up on the way home... Ah, logistics.

I got a great dose of gigglelaughdoubleover therapy telling stories last night with Carylbeth, Michele & Christine. And all within the context of a meeting. What a gift.

Okay, back to Oscar singing "I love trash...."

observations on discomfort

For several hours yesterday evening Lars was in clear pain if he was bent in the middle, but it eased considerably when he was not. Standing on his own feet, being held in a standing grown-up's arms, or straddled over a thigh were often okay, as long as there were lots of movement and music in the mix. But any bending in the middle, weight on his bottom, or lying on his back were decidedly awful. Until he fell asleep & we put him in bed, at which point lying on his back was okay.

The bath was torture. I think we're lucky we live in a single-family house now, or someone would surely have called DSS.

Lower intestine pressure? Alice checked hips, etc., this morning, so it's not that. Andey's mom googled depakote again last night, and we were reminded that the symptoms of pancreatitis and liver dysfunction that can be caused by depakote are similar to his symptoms. Those were ruled out in the hospital, but should we still be paying attention? Is there a gradient scale that we should be monitoring?

Drinking anything is just unacceptable to Lars right now, but sometimes we can sneak bites of watery foods in. Is there a connection with drinking? He is usually a great water drinker.

I got to thinking about how much we miss cheerios, and added some halloween photos to the "more badness" post from earlier this morning.

more badness

HELP WANTED: Weightlifter or triathlete to provide gross motor movement for 31-pound toddler 12-20 hours per day, 7 days per week. Ability to improvise songs to accompany movement a must. Salary negligible. Apply in person.

Teaching 9 hours yesterday & schlepping drums in & out was like a walk in the park compared with what Andey & her mom pulled with Larsy all day. Reports are of an occasionally sleeping, mostly hollerin' boy. Struggling to get any food or water into him, they gave him some morphine and valium at various times, with mixed results. Andey spent some time on the phone with the very good CCS (Complex Care Service) doc, who asked all the right questions, was empathetic, and called back later in the day to check in. A new model of doctor, indeed.

One of the hopes I'm hanging on the the CCS docs is their ability to wade in this grey, murky water with us. They seem to know this is probably not about just one thing, and I'm hoping they don't grow increasingly hostile or distant when they can't fix it, like we saw with the standard hospital pediatricians. I'm guessing that the latter might feel frustrated & inept when they are unable to diagnose and treat the problem, and that most of them have that I'moneofthesmartestfolksaroundafterallIwenttoHarvardmedical thang happenin'--and all blessings upon their intellect and ability to cure most kids-- But they don't have smarts enough to know how to stay present and connected with the family, to talk compassionately with parents whose child has been in the hospital for nearly a month in pain, with no answers.

The CCS docs are not only willing to talk with us at length on the phone, helping us through a crisis weekend when we're trying to stay home, but will cover Lars now, both outpatient and inpatient. When he's inpatient they'll be his primary attending docs. He has his first outpatient visit tomorrow.

A couple of you have asked about test results that I haven't written about. Docs ruled out the question of depakote irritation when they did the endoscopy, assuming that they would be able to see a small ulcer or something else physical during that test. I have not heard back the biopsy results, which included the celiac disease test, but we have had him off all gluten for about a week now (including, sadly, his beloved cheerios). The nutritionist suggested two full weeks off, then two full weeks on for a complete test, so we're still in the middle of it. He continues to eat dairy-free and soy-free, as well.

Larsman's sleep Saturday night with Grandma was pretty good; last night with me was not terrible, but very very restless & awake much of the time.

He's been screaming so intensely for the last hour that there's no possible way to get a bite of food or a sip of liquid in. We're dancing on the when-do-we-take-him-to-the-ER-for-IV-fluids line. Weighing diapers, etc.

Andey's mom flies back to Sacramento this morning. We will miss her sorely. We're looking for friends to stop by for a few hours in the evenings this week, folks to take Joa home to their house for dinner a couple evenings, etc.

In memory of cheerios and happier days, here are some photos from this past Halloween:


Hugs to you all who care enough to read. It really, really helps.