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.

untitled

There are so many ways that Lars now reminds me of Lars in his first ten weeks. I can often get him to settle if I throw all my energy into it & provide constant significant gross motor, vestibular input, singing, games, funny sounds...and it happens to be a combination that works. Then maybe after a half hour of that he'll calm down & have a few good minutes. Then something happens and he arches his back, screams, cries, turns red in the face, stiffens his limbs.

But in his first ten weeks Lars weighed 7 & 8 pounds, and was significantly shorter than he is now. There aren't too many giants like me around who can provide the input that will settle him. And ho ho ho- this giant gets tired & has a significant amount of work she needs to do at home to prepare for teaching two courses, one new to me.

Other times Lars is inconsolable, like he was his first hour of life, and there's nothing that will help. We have prescriptions for morphine & valium--with them we just might get a little bit of calm time so he can actually eat.

It's interesting to me that there have been only three significant times without seizure activity in his life: his first ten weeks, a six week period when he was 4-5 months old, and the six weeks since this past Dec. 20th, when he's been feeling terrible. Occasionally he would go a few days without having a seizure, and I had noticed several times that he seemed to have a high level of irritability after a couple days without a seizure.

What does all this mean?

Where to go from here?

It's my habit to imagine worst-case scenarios, and to figure out how I would deal with them; then what actually happens is usually not quite that bad. However, imagining Lars feeling this bad on a daily basis for the indefinite future is something I haven't been able to wrap my mind around yet. Coping with his loss of vision, intellect, verbal communication, motor abilities was nothing compared with coping with my baby in severe, ongoing pain. This is heartbreak.

With no clear path laid out before us, we're searching for the footprints of those who have gone before us. Are there parents, neurologists, anyone who can describe a similar situation, and what the trajectory looked like?

Is this something--as one of the early GI docs said--that "just happens to neuro kids sometimes"? And if so, for how long?

I haven't been feeling well today. Last night I got a vertigo migraine, and today I've been hungover from that, achy, disheartened, and so exhausted I struggle to keep my eyes open. My system is insisting that I curl up in a silent dark place and rest. For about a month.

Numerous wonderful things that have also happened the past few days. I got to go see Cornell West and Sweet Honey in the Rock at Berklee--and thanks to Karen W & CBT, tix were free, to boot. Both Sweet Honey & Cornell West were breathtakingly moving, deepening, and sublime. Definitely cracked me open.

Grandma continues to be a life-saver, taking turns caring for Lars, Joa, and Abbykyns; going shopping; doing dishes & laundry; cooking food...and tonight she has Larsy overnight in her bed because Andey's working & I'm teaching tomorrow. Let's hope he does well. Grandma needs to leave Monday; we'll miss her so much.

Joa got to go rollerblading this afternoon with Grandma, so that was great fun. He's doing well, considering the amount of screaming his little brother is doing, and how that leaves him feeling agitated.

Jean came to help at Mechanic Street yesterday; Michele came today with majorly delicious food, and rocked Larsman for a while. She was able to elicit six calm moments, and one catnap from him. On Friday afternoon Lars & I spent 2 hours in the wonderful warm Fernald pool with seven friends (4 toddlers & 3 moms), and although Lars cried much of the time (which I've never seen him do in the pool before), we traded kids & passed him around & had a generally grand time.

On the way home from the pool we got to visit our sweet Denise, who is recovering from shoulder surgery, and sweet Kali was there, as well.

Lars did have some semblance of his normal routine Thursday. OT with Sue, and there were joyful reunions with Meredith and Alice. He got his new chair & it's fabulous. A single seat with two different bases, one for rolling around out in the world, and one for home that not only rolls but also moves up and down.

Good long phone conversations with Lisa & Carylbeth, sweet emails. Thank you all.

This week we have appointments with CCS, the Complex Care Service, and with epileptology. Now I have an appointment with my pillow.

very brief update

The magic of being home has worn off. Lars is having quite a few periods of extreme pain, interspersed with a range of uncomfortableness, occasional contentment, and rare-but-still-accessible happiness.

I will write more tonight. Thanks for keeping us in your thoughts.

home, sweet home

We did it. We arrived home around 9:30 or so tonight. Lars was so sweet & so happy to be home--he could hardly contain himself. Grins from ear to ear, head thrown way back & excitement from head to toe. It was a joyful homecoming.

Larsy did great with Grandma & Jean while the moms were at his IEP meeting. When we arrived, he was asleep on Jean's lap. After he woke I sang him a going home song, and after about the fourth time through it looked like a little light bulb lit in his head, and he understood what I meant. He became very animated & excited, and pretty much remained that way through the packing & exiting scene. He was thrilled to have both his hands free, to be out of the room, in the lobby, outside, in his car seat- it was all just perfectly delightful and enthusiasm reigned.

Larsy had many, many cuddles and a much-needed and deeply-appreciated bath, climbed into his jammies, and snuggled off to sleep. Joa was happy to have his baby brother home, and wasted little time falling asleep himself.

Yesterday Joa expressed teary fears that Lars will "just scream all day like before he went to the hospital." Yeah, it's a concern. We are going to help him with ideas of what he can do when this happens, and are looking into a great lead from a friend for an ongoing sibling group at children's. He thought that sounded like "a great idea."

Joa also held some concern about his dear Denise, who had surgery on her shoulder today. He was much relieved to hear when she was home & resting comfortably. He spent a bunch of great time today with cousin Jean & continues to be just tickled that Grandma came all the way out from California to be with him while his brother was in the hospital. I haven't dared to break the news that she'll be leaving Monday.

And then there are the rats.

Joa's great disappearance into cable tv while he visited the hospital has further reinforced our resolve that this will remain a TV-free house. He watched some program on animal planet about rats, and he's now terrified that rats can "blow up your house" and he insists he learned that when you're in the city, you're "never farther than 15 feet from a rat." And he has all sorts of odd information about skulls in a church basement, hanging from a ceiling, and the plague. We haven't been able to sort it out. I'm certain we can live well without it, though.

We were again blessed with dear friends & comfort food: Abigail & Lily brought mac n cheese & their mama's brownies, and wonderful apples for me. Mmmmm. This was their second visit, and Lars screamed through it, as well as the first. Luckily they see him at Perkins when he's not screaming, too. The girls made him a cool tactile picture, and so did Chase. The laptop camera makes everything a mirror image, so reading's hard, but here they are:
I have much to say about today's IEP meeting, but I'm not going to publish it here... One just never knows who is reading what.

Some happy Lars after we told him he got to leave the hospital photos:


It's fantastic to have him home again. Tomorrow he gets to see Alice & Meredith & Sue. He also receives his new wheelchair tomorrow. Big day.

Welcome home, Larsman. Welcome home.