She's not ready yet...

Whitney looks so beautiful.  Sometimes it makes me forget that she is a "medically complex child."  Plus, from just looking at her, you can't really tell that she has so many medical issues.  It's hard to be THAT parent.  Pretending she great around others, but spending many hours a week at Dr. appointments and therapy.  But don't worry, we are strong and will do anything to help our daughter!

Today we had the swallow clinic do a "study" on Whitney to see if she would qualify for PCH's intensive feeding program.  The feeding program is 1 hour of therapy a day for four weeks, with the ST, OT, RD, and GI. Sounds good to me!  So, About 6 medical practitioners came into the office to watch Whitney and listen to her feeding background.  She ate a couple bites of yogurt for them.  Whitney even got brave and walked around.  She didn't throw up which was amazing, though I only feed her 2 oz of breakfast so that she would be hungry and eat for them.  After a while, they left to have a private disscusion.

I wasn't expecting Whitney to qualify because she just started eating yogurt and ramen.  But I also didn't expect them to turn us down because of her medical issues.  They said we have to figure out and resolve her reflux, slow motility, behaviour, and her anatomy. I guess I'm wrong in thinking that Whitney would be just fine is only she could eat (and gain weight) by herself.  Ya know? If she would just eat when and what she wants like a normal toddler, then maybe she wouldn't have reflux or slow motility or vomit and would just grow!  But I seriously need to realize that that is not the case.  Soon she will be on four different medications.  She won't be fine if she eats on her own, she's needs medical intervention. 

I wonder why the GI Doc. would even suggest the swallow study clinic when she should of already known that Whitney was not medically sound.  Although, it was a good experience and the Therapist there said we were doing a great job at home and to continue with the other therapist.  Plus I'm glad that she, our new GI doc, is more out going and aggressive at the getting the help Whitney needs. 

The GI doc. said that she was gaining weight, 19 lbs 5 oz, (below the 3rd percentile), 32 in, (50%) and head is in the 75 percentile,  but that's not enough.  She getting enough calories but maybe she's not digesting them properly.  Or maybe she's getting too much of something.  They want stool samples to test Whitney's fat and also blood to test enzymes and such.  They will do the blood when she's out for the endoscopey. She also wants me to start Whitney on the Erythromyicin before the endoscopey.  At a really low dose it's suppose to help with the gi tract motility.  The pharmacy has to order is special so hopefully I'll get it by Friday.   Hopefully this med will let Whitney tolerate more food at a time.

  I know Whitney's not ready for intensive feeding therapy, as much as I want her to eat and be weaned of the tube, she's just not ready.  In fact, they broke my heart by saying "We'll re-evaluate her in 6 months."  ...wow

Whitney is so cute!  I make her leave her pacifier in her crib, she does really good and puting it down after a nap or bedtime but always gets upset.  So sometimes she sees it in her crib and then does the sign for bed or "ni night"  so I put her in her crib.  I gave her my DS and she's very entertained by Mario!  Extra quiet time for me I guess! 

Today we also went on a walk to the park with Gramma and Aunt Brianna.  It feels so nice outside!  Whitney loves watching the cars and dogs on our walk.  She loves the swing!  My mom was so nervous the whole time though! I don't know why haha!  But Whitney won't fall out and I don't think I push her that high!?  Whitney also scared Gramma by not holding onto the swing! Haha! she brave like that! Whitney also loves the slide and sand.  What kid doesn't love the park anyway!?