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Sunday, October 07, 2007

Cracking Ellie's sleep code or The End of Nap!

OK - first off, I know she has brain damage and that people with brain damage can have a hard time regulating sleep.

That said, I think she is, dare I utter it....outgrowing her NAP!

Yikes! The sacred Nap with a capital N!

The Nap. A law unto itself allowing all mothers much needed down time. A traditional time to regroup and prepare for the next round of caring for small child 101. Time to recharge for round 2 by way of a sanctified cuppa sanity!

But, yes, it's true, it's not just a nasty rumor. They do, eventually, sooner or later or sooner, outgrow the nap, brain damage or no. And I think my warrior princess is making this developmental milestone with all the irony of that! Sitting, we missed it. Standing and walking, well we are about 4 years behind on those too. But the end of the Nap - right on schedule!

Still, I will gladly give up my cuppa sanity time in order to get that hour back at 3am. It's not a bad deal. And as all mothers of kids with a disability know, there is plenty to do, in terms of working with her. Yes, baby boot camp in full swing. With wonderful pieces of machinery around like the Pony gait trainer, the Creepster Crawler and the tried and true A-B-C foam mat - there is plenty to do, never mind our exercises from Advance which are in bad need of renewal.

So, it's the end of the Nap. End of the Nap. Did you hear that echo?

No, really, I'm OK with it. Really!
Picture Description: Baby Ellie in February 2002 in the NICU "growers and feeders" crib at 3 months actual age, minus 2 days old adjusted age as her due date was Feb 4 and this pic was taken on Feb 2. She weighs about 3.5 pounds and is wearing a preemie onesie from Jannie and Jack. The bump on the top of her head is the reservoir, since removed, that they used to to ventricular taps to control the hydrocephalus. You can see her head is a bit swollen due to the intercranial pressure. See why she is a warrior princess?!


Danielle said...

I thought that was a little tuft of hair! LOL. I have never heard of a reservoir. There is so much to learn. Off topic, is Ellie's full name Ellie? I mean is it short for anything? I don't know if you have ever talked about that or not.

Kathryn said...

Hi Danielle - Her real name is Elizabeth. But when I was pregnant with her I had this vision of her just as I was taking a nap and she told me her name was Ellie. I only gave her Elizabeth just in case she wanted a more grown up name some day. You never know when that will come in handy as a woman. And Elizabeth is the name of queens and strong women - so I thought it might help her considering the challenges ahead.

Katy said...

Elizabeth is one of my favorite names. But that's not why I'm here. I've been reading through your blog ad nauseum since I can't sleep, and wanted to share some random thoughts. I am SO GLAD that you refused a fundo for Ellie originally. I think the medical profession is BIZARRE about this stuff. The doctors MADE us put in a g-tube so we could go home with my son. No fundo needed because he didn't reflux and could have food by mouth. After that, it would astound everyone that he could have food by mouth. They essentially gave up on him because he had the g-tube. I, on the other hand, listened to my child who hated to be fed through the tube. I fed him as much as possible by mouth and within a month of being home from the hospital, we weren't using the tube at all. He's way ahead of the other child I know who went home on a g-tube. We do have to thicken his formula, but that's not a big deal to me. I think doctors sometimes have a one-size-fits all mentality about kids with head injuries. It's important for us parents to be our child's numberone advocate.

I also wanted to tell you about a product that I have begun giving my son that's really made a difference (he's only four months, but I'm seeing good things). It's called Ambertose and it's super-expensive, but it completely cured our constipation issues. I also think Charlie is generally looser and more relaxed because of this. I've found that it's the same as Manapol which is much cheaper and can be bought online. There's a lot of controversy around this supplement, but I'm so glad we gave it a try--as I said before, constipation issues have been eliminated (he does fart more now, though). Sorry for the super-long ramble. I just wanted to share some of my successes.

Kathryn said...

Hi Katy- thanks for you thoughtful comment. I totally agree that doctors have a one size fits all. I wish we had refused the g-tube altogether.

We had Ellie on Ambertose for over one year and it did not seem to help her with constipation at all. Maybe I wasn't giving her enough. Now I have her on MSM and that is definitely loosening things up. But we still have not given up the Myralaz.

As you may have read before May of 2006 we had Ellie eating everything (in pureed form) by mouth except thin liquids. We had worked long and hard since her birth to get there - then she started to have seizures and we had to medicate her for them because she was getting 3-4 in a row several times per day. And then within two weeks of medicating her she stopped eating altogether. 2 steps forward - 300 back.

So I am glad your Charlie is eating by mouth. I really think working as much as you can with him on every level, including nutritionally, will make all the difference. You might want to check out Advance too - the link is on my site in the right column under resources.

I hope you get some relief from the insomnia. I have gotton less than 4 hours of uninterrupted sleep each night now since July and am really tired! So I know what that is like. And writing this at 7am after one of those broken nights I have to say it really stinks! Charlie is lucky to have you!

Katy said...

I do think that Abertose works for some and not for others--no one thing works for every child.

I am very interested in Advance--I checked out their web site last night. Do you know how it compares to ABR? They sound very similar is philosophy. I also like that the ABR lady seems to give you a lot of nutritional guidelines--I've recently come to believe that nutrition is one of the most important things you can do for you health.

That seizure medicine is a catch-22. We're in the process of increasing Charlie's dosage even though we've not seen a seizure. Doc says better to prevent in the early years than try to stop them once they start. In the mean time he's sleepy till he gets adjusted, which means it hard to find time for tummy exercises, story-time, and the like. It's a balancing act.

Katy said...

I meant to say the Advance lady--not enough sleep.

Jacolyn said...

Not the NAP!!! My kids are starting to outgrow their early bedtime and as much as I hate to admit it, it is a little painful for me. Good Luck ;)

Anonymous said...

hey guys, that is 1 of my fav pics ever so thanx for puttin it up :) and as for the nap issue kathryn, she's a stanley so should get back into it in about 10 years ;)

See you soon and big hugs and kisses to my gorgeous goddaughter

Auntie Sue Sue

Lisa said...

I love, love, love that picture of Ellie! So cute!

The end of the nap. The thought makes me want to die of exhaustion.

Take care,

msiagirl said...

Oh oh that was so long ago and I was too tired to remember anyway, just remember being even more tired!!! That just layers on and on....and L turns 10 in a month!!! Double digits: here come the hormones.

But what a gorgeous pic of Ellie and i think she looks just like Dave in that moment, though now of course her flying pigtails remind me lots of you!