Friday, July 02, 2010

all the king's horses

Ah, that time again. It's been a while since my last post and we've had many wonderful days, good days, okay days, stressful days, worried days, sad days. As we all do over the course of a few weeks, I suppose. ^_^ So this post might seem a far cry from the last one, a wild swing to the other side perhaps. But it is just one post, written on one day. And there will be more - hopefully lighter! - ones to come!

The boys finished school last week - they're both happy to have a break but of course already falling victim to The Big Bad Boredom. Matt and I decided to do a mini homeschool all summer so we have been trying to do an hour twice a day working with the older three, hopefully getting Cade more solid with his Kindergarten stuff (and close to reading!) and Parker and Macy more prepared for their new school experiences. It's tough with the three little ones but we've been working around therapy sessions and naptimes. So far I think we're off to a good start! :)

I spent 2 hours in IFSP meetings for Macy, Dawson and Emerson and at the end felt like I'd just been run over a few times by a larger version of Cade's yellow Power Wheels Jeep heh. Emerson's took the longest and at times I felt like laughing and other times like sobbing. She and Dawson will be starting an integrated pre-preK program at Handicapped Children's Association this fall. It's 3 hours 5 days a week and they'll get all their needed therapies there. At first there was some confusion about how Emerson would even attend because her therapists were recommending so many sessions per week, mostly individual, that she wouldn't have any time to be "in class." So they talked and altered their recommendations. She's also getting a one-on-one aide. Nearly everyone in the room had this pitying, horror-struck look on their face when the therapists and then me were talking about her various issues and problems - we had to have something put into her IFSP about her self-injurous behavior so she can be watched carefully around hard floors and walls. I kinda wished I'd brought her to the meeting so they could put a real face to the scary paperwork. But she wouldn't have done well for that long of a meeting.

Dawson needs less therapy, of course, and no one-on-one aide. He has finally started getting interested in breaking away from his momma so I am pretty excited for him!

Emerson had those few weeks of blissful progress - eating great, learning signs, being engaged, happy, playful, snuggly! - and then the little ones caught another upper respiratory infection, hers seemed to turn into a sinus infection, and it was all GONE. Just like that. Humpty-Dumpty and another Great Fall. And so far a course of antibiotics, though it cleared the illness, and two weeks of health, haven't brought her back. Now the littles are all getting a cold again, and she is slipping even further away from us. I should be used to this by now, I suppose, but somehow this time it has been even harder on me. I really thought we had finally found that corner we've been looking for and were whipping wildly, joyously around it.

Her eating is hit-and-miss, some good days, other really terrible ones. She has dropped about 1 1/2 lbs. So we made the call to the gastro yesterday. At this point, we think a g-tube is our only Next Step. Hopefully he agrees. Her love of banging her head into things and climbing up onto stuff and then throwing herself back like an Olympian off the high-dive have gotten worse. Her teeth grinding is back to where it was months and months ago. Her right cheek has looked swollen the last few days and she's been having blood on her lips which I assumed were from cracked lips or her usual cutting the edges of her sharp teeth on her lower lip. But last night while brushing her teeth I realized what was causing all of it - it appears she has been grinding her teeth on her inner cheek, with little molar marks on the soft skin left angry and red. I don't know how to stop it. Her sleeping is at its worst - she is up at least 2 to 3 hours in the middle of the night, every night, moaning and banging her head back on the mattress. I have sat with her while she slept for a while and even when she's asleep she tosses her head back and forth fast. I don't think she has sleep apnea, but we are going to talk to the pediatrician just in case. She takes a short nap each day but spends much of the day yawning or lying folded in half, listless. Melatonin doesn't work for her and when we asked the doc about a sleeping pill he looked at us like we'd asked for rat poison. No clue how to get her better rested.

I've also been talking with the cardiologist out in San Francisco who does the robotic heart repairs because well, we are trying to find any possible cause for her issues. He reviewed her records from our cardiologist and recommended she have surgery now rather than later, unless they want to "beef her up" - if only it were that easy as wanting to do that. Unfortunately, after talking further with him, we've realized surgery in California is impossible for us this year as it would require a 2 week stay. Matt doesn't have enough vacation time stored up to cover that and we cannot take that long without any income. And yeah, I'm really worried about her having major surgery right now with her current nutritional state.

So now I've had her records sent a cardiologist at NYU to see if he could perform a repair on her particular defect using the same daVinci machine the San Fran guy uses. Boston Childrens will be my next stop.

We still need to make appointments for her to have her orthotics redone (she just gets out of them and is making no progress with her ankle stability), opthamologist and a developmental pediatrician to finally, hopefully, have someone look at her issues and have a tiny inkling of what might be going on - Autism? Something else? She isn't supposed to see the ENT until the fall but we wonder if she's getting filled with fluid again. We are overloaded with her appointments right now and running out of useable vacation time for Matt - FMLA protects his job but does nothing about pay for the hours we lose with each appointment. So we try to spread them out a bit.

I feel like I'm chasing invisible bouncy balls down dark alleys - there are a lot of things we keep thinking IT could be, but never any answers. And no one in sight seems to have any.

I think I should feel overwhelmed with her issues right now but I don't think I'd use that word to describe how I feel. I feel distant from her issues, because I'm so used to it by now. And just puzzled over what to do next. For her. For our family coping with her issues.

We went to an absolutely beautiful park early in the week - lake, beach, tucked down in a valley of trees and rolling hills. There was no one there, it was quiet and warm but breezy. We had a picnic - Emerson even ate her mac n cheese sitting on the blanket next to me! - and the older three, Dawson and Matt went out to play in the sand on the beach. Emerson sat rolling a ball with me for a few minutes, then the wind picked up a bit and she started crying. And grinding. And soon we were sitting there, her screaming and grinding, me holding her on my lap with the blanket wrapped around her, shh-shhing and kissing her head. And Holden sat next to us, crawling around and babbling at me like nothing was amiss. And I watched the other kids playing happily. And she cried for the entire 20 minutes we remained there. And at one point I thought I might join her. But I held it in. And wondered how things would be for us as a family - going to an amusement park 3 hours away at the end of the month for Parker's birthday, we already know we will have to find someone to watch her for the day as she won't be able to handle it; going to the zoo, going to that lake to swim, going to soccer games in the fall when the older kids start up, going on long vacations - to Bethany Beach or Disneyworld or one day, maybe, Europe?

But I try not to dwell too much on those unknowns and just deal with what I know right now, what I can do right now, and hope we figure out the rest as we go along. And if we can't, that we will figure out what is best for everyone and just be happy with it.

We had some really exciting happenings for our family in the last few weeks too. But, this post has gotten long enough and I will save that for another day. ^_^