Thursday, January 22, 2009

Noisy Box!!

THIS THING!! LOL!! The Noisy Box!! Lil Madie just adores it! Never fusses inside...crunches that crinkle paper and puts her feet over the bars! hahaha I try to keep her legs free cause they are always in the air!
Just a smiley girl..:)

A overhead veiw....(could have moved my remote....hahaha)

Madison has had a huge breakthru in her eating!! A WHOLE JAR of Pears she did yesterday and today!! along with half jar of Bananas! What happened??? SO now after year of fussing and gagging and throwing away tons of food she decided she likes it?? Dunno folks....keep your fingers crossed.. I I still feed her shakes as well...but like today when I gave her the jar she only ate about half a bottle after which to me is a great meal!! Still the pressure to get the calories up up is pressing on me!! I am not going to stuff her! I will try to feed her every 3 hours er so....and squeeze in maybe a couple jars of food in there with half bottles...we shall see. I tell ya ..she is happy...even opened her mouth for the food!! NEEEVER did that! I wanted to call everyone I know and tell them that she is aware of the spoon!! no crying! then when she was done she clamped her mouth shut and was grateful for the warm facecloth to wipe up.
She still does not hold the spoon to let you know self feeding yet...
Madison made it just shy of a weeek with her Zonegran decrease....and her Depakote Increase...she has seen no ill effects so far as seizures...well I am hoping that today will be a seizure free we have seen seizures since chritsmas.!! She had a great day today...although I have not gotten that 15 minutes strait in the stander again she is in that thing for maybe 5 minutes...intervalls.....hope and more hope for those muscles!!
We ALSO made an appointment with the GI folks..they called me up to make the apointment and the lady said that she is calling to schedule madie's "feeding tube assesment"
Eh??? UN-known to me! I was like "oh hold on a no no Madie is not getting a feeing tube... I was under the impression that we were going for a Barium Swallow study and hoping that she does not have GI issues...." The lady was confused and then said the doctor will rule it out....OIY people!! gah!
I feel like this feeding team just doesnt know enough yet...taking the frustrated way out "ohh just tube her"
No no non no no nonononononono no no
I am working so hard with her food....she was on bad seizure meds that caused weight loss and loss of appetite!! Lets give her some time off that crap first!! Can I stand correct?? (see whole jar of food above!!) *sigh* Ok Ok I am surly not happy so far with this feeding team and i will probably go in next week with my guard up....
BUT so far....we pray for the seizures to go and that Depakote will remain her miracle drug.....
Lil one is just plain happy these days and I guess for now we will enjoy that. :)
Ill be posted!!


Reagan Leigh said...

The noisy box looks just like something Reagan has called a "little room". Reagan used to hate it but now she likes it a lot (when we use it anyway, right now it's stored away in our garage until we sell our house).Ugh. I know those GI people always wanting to take the easy way out with the G-tube. We've been totally against it from the start. And what's crazy is that Reagan has never really been that low on the growth chart but they still were suggesting it! The way I feel is that if she's still gaining weight and I'm willing to take the time to feed her (no matter how long it takes), then what's the big deal? So exciting about her eating a whole jar of pears!! What stage food is she eating? Does she have aversions to the different textures? Well, hang in there. It sounds like you're doing a great job! And I pray that Depakote will do the trick for her! Sick of the guessing game!

Reagan Leigh said...

So I asked our vision therapist and the noisy box is the same thing as the little room (just developed by two different people).
The issue with Reagan's legs...severe spasticity (almost like that of CP although her doctors have never called it this). For almost a year now she's been pointing her toes almost nonstop (they are called ankle contractures). It's not intentional and before we casted her legs it was nearly impossible to flatten her feet. The issue is if she can't flatten her feet, she can't stand or attempt to walk properly. So it's important that we do all we can to flatten those super stubborn feet out.