Poop and other stuff that stinks

Poop

10:30 on a Saturday and we're just in from a night out... at the pediatric E.R. We are fortunate have a pedatric E.R. about a block away - and we're fortunate because this is the first time we've had to use it! The issue: severe constipation, so if you are weak of constitution, you might want to skip the "Poop" part of this entry.

Of course constipation is nothing new to Noa, and it is a problem for lots of special needs kids especially those like Noa who cannot walk and therefore she just doesn't move... everything around like your average toddler who can run circles around circles. All her adventures in new foods probably add to the problem: bits of pasta or rice krispies, etc... so this was just worse than anything we'd experienced before.

Noa has a high tolerance for pain so really what we noticed was that she was sitting funny and not wanting to stand and sticking out her belly - and finally Saturday morning, she just wouldn't sit up or bend at the waist at all. We tried valiantly to get things moving, but my Saturday evening - after a day of leg moving, tummy massages, rocking chair adventures, a bike ride and a bath, it was clear nothing was moving.

An x-ray showed that indeed there was a "blockage" - and actually we were lucky that it wasn't bad enough that they had to call the surgeon. One enema later we were on our way home with a tired, but slightly more comfortable Noa. We still have four days of enemas to go. Lucky us.

The thing that stinks
I haven't written about this before, but we've been an ongoing battle with Noa's insurance to cover physical therapy. She's on a Medicaid waiver - specifically designed to make sure that people with disabilities get the healthcare they need regardless of income. At first we were fine with this new set up (through Medicaid we went into a program at HIP of NYC).

At first, it was a bit of a pain as they made me renew her PT perscription every month which meant calling her GP and asking them to fill out the paperwork and send it to HIP for approval and then they'd send a thing to the PT... a lot of work for someone who will likely be in PT her whole life. When I called to ask if they had some arrangement for disabled people (which is what the medicaid waiver is really there for) she said no - that she might get better and so they couldn't do that. When I told her Noa's situation she said - and I kid you not - "there are miracles. I have seen miracles."

At that point I asked her to stop talking. I assured her that I'd call them if there was a miracle. Frankly if there were one, I wouldn't waste my time bilking Medicaid, I'd be out with Noa dancing at a different club everynight until our feet hurt. In any case, it hardly seems like a monthly renewal in case of "miracle" was a sensible business model - though perhaps it explains why healthcare is so expensive.

ANYWAY - a couple of months back, HIP changed it's process and hired an outside company to assess the needs of patients seeking PT. This company (we'll call F) requires the Physical Therapist to call and request the renewal (rather than the doctor who is perscribing it, but who also is not someone who is an administrator and is in fact rarely at a desk because she is with patients!). After initially approving a month of visits, we were reduced the following month to 3 visits. The PT called me and said she had seen this before and that she suspected they were going to cut her off... and viola, they did. Because she hadn't improved enough (over the course of a month and a half), so obviously it wasn't working.

Silly people at "F" - they have no idea who they are dealing with.

We called and asked for a review of the situation. They said they could review it and perhaps get us 1 or 2 more sessions. We informed them that this was not going to help - that the issue was bigger. That they were denying services to a disabled person with the criteria that she should "recover" - which did not make any sense for a disabled person, much less a 5-year-old who is learning to walk.

AND NOW, after their "review" they have decided to give us 2 more sessions - their logic being that in those 2 session, the PT could show me the exercises that Noa needs to do and then I could do them with her. TOTALLY not getting that these are not exercises to recover from some injury at work - this is a child who is learning to sit and walk and who is blind and there is not one set of "exercises" for that.

Oh poor poor people at "F".... they do not know who they are up against. I just want to call them now and say (as I have to others before), we are not those people who are going to let it slide, so you might as well just give it to us. Going this route will only cost all of us lots of money and in the end you will not deny services to a 5-year-old blind disabled child because it is WRONG. And, if this is your practice (as it seems to be) then we'll do all we can to make sure you don't do it to anyone else.

So... that's the story of poop and other things that stink. We'll keep you updated.

Noa's Rockin' Birthday!

Once again, Uncle Rock rocked it out for Noa's birthday (the Noa equivilant of having Van Halen play at your party)!

It was a great fun with lots of kids to share the rockin' out with. Despite our best efforts, Noa didn't take a nap earlier in the day and at first I was afraid she wouldn't be able to pull it together, but true party girl that she is - after a short break with her calming electric toothbrush - she came back strong.

Happy Day

Don't be afraid if the video screen looks blank, as far as I can tell this video will still load if you hit the play button (let me know if it doesn't).

Here's Noa signing "Happy Day" - she just learned this on her birthday and I think she really likes saying it because the "Day" part (with the big slapping action) is particularly satisfying - I really like the triumphant Susan Boyle singing in the backgroud. She also is working on the sign for "Poop" and "Fun."

It continues to be a mystery that she doesn't use the sign for "No." We actually had some success with it at Music Therapy the other week, but it hasn't really translated into home use. She still tends to push the offending article away and then scream or hit herself (on the hand, or banging her elbow on a table), or both. But she does know the sign. She just hasn't really figured out the power of it - which I think she would enjoy, and I would be sorry she ever learned it (but hey that's the way with any kid once they learn the power of "No").

In another twist - Noa has started to show a preference for certain clothes - many shirts. If you try to get her to take her shirt off, she will resist until you let her touch the shirt you intend to put on her. If she doesn't like that shirt she will push it away (and scream and/or hit herself), but if you select a shirt she likes, she will offer you her arm so you can help her get the old shirt off. Lately she seems not to like waffle knit shirts, which is a same because I got a great deal on a bunch of them recently.

Hard to believe that tomorrow Noa will be 5-years-old!!! And she's really been piling on the skills in the past couple of weeks to catch up with her new status as a "big girl." Especially impressive right now -- food skills such as those demonstrated above. Notice how she finds the spoon. She is careful looking for it, and you get a sense when she is doing this that she is usually visual imput in some way. She is in the right area and really searching for the right spot. This is true even if I move the spoon slightly. It's not a "blind" reach, so to speak.

I love that in this clip she also reaches for the spoon for the next bite, though her sense of having to scoop more onto the spoon is just developing. Actually, she was doing this at school before she did it at home. Ben happened to be at the school for a meeting and saw her doing this - and her cover was blown. In this respect, Noa is just like any other toddler - she knows who expects what from her. She used to pretend that she couldn't pull up her pants when she potty time with Daddy... until he happened to see her do potty time with Mommy. Tricky kid.

PLUS, she's been eating more and more new foods. Just in the past week and a half she had baby food mixed with rice krispies, more pasta varities and... are you ready??... cheeseburger (fed through a food mill) mashed up with french fries and topped with a little baby food. She loves meat flavors so top most anything with a meat flavored baby food and you're good to go. She's doing well with all the stage 3 baby foods (that have chunks) which used to make her gag and even ate a whole jar of a fish flavor (salmon with wild rice). It's really a whole new world!

As we're coming up on her birthday, I guess I should share a birthday story - just a short one. As most of you know, Noa was adopted, but Ben and I got to know her birthmother ahead of time and were lucky enough to be there for her birth. In fact, when one of her friends came down sick, I ended up being one of the birthing coaches and Ben even cut the cord. But that's a different story -

For a variety of reasons, Noa's birth was induced - which gave us a great shot at being there for the actual event. Five years ago yesterday we went in for a final ultra-sound and discovered that Miss Fancy had somehow turned herself around and... basically facing the wrong way. "Go home," the doctor said, " and we'll try again next week." Of course Ben and I were disappointed - to be expected - but Noa's birth mother (we'll call her B) wasn't taking next week for an answer. Although the doctor said there was no way that Noa would turn around by tomorrow, B convinced her that we should just go to the hospital on schedule and take another look - and then she and I got to work tracking down all kinds of crazy old wives tales about getting babies to turn over.

We tried a few things - can't remember most of them but one was playing head banger music to the area where her head was so she'd move away from it. Ultimately it was a bag of frozen peas that did the trick. We put them right where her head was and within a matter of minutes she flipped right over -- and I mean it was a dramatic move. We could see it happen! So much for the doctor's theory that babies didn't turn around like that. When we went to the hosptial we were feeling pretty confident that Noa was in launching position... and she was. The rest, as they say, is history in the Land of Noa.

Shake it Up!

The most recent delay in my postings has been due to a very sad (and we hope not too tragic) event, the complete crash of my hard drive which will tomorrow undergo the computer version of heart surgery, so keep your fingers crossed!!!

But I'm so glad to be back on the blog and able to share this great video with you all today - it's actually a couple of weeks old: Noa enjoying the heck out of the blocks that Grammy and Grampy gave her for Christmas this year.

She also likes throwing them, so I don't think we've had all 50 in the box since the New Year. As you can see she loves to shake shake shake until they are all gone and then she starts all over again. She seems to get the idea that they are somewhere near enough to find and so she'll reach and roll around to find them as best she can. It's part of a whole new level of independent play that includes pulling books off shelves and opening cabinets and pulling down baskets. Makes a mess, but it's good fun and it's great to see Noa really reaching out and finding things rather than waiting for someone to come along and give her something to do.