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!? 

FT, OT, & ST

Feeding Therapy is going pretty well!  Whitney has been drinking water from a spoon for a really long time now.  So this week, the Therapist pulled out some applesauce.  Whitney was not interested in it and she got anxious.  We do love our therapist and she does a great job with Miss Whit.  I like recording every other session so that I can see for myself how she really has improved! Now that I think of it, Whitney use to gag and vomit with the littlest peice in her mouth!  And now she can bite and chew tiny peices of Veggie Stix with out gaging!!

Whitney has been to her Occupational Therapy about 4 or 5 times now! It's once a week and it's in the same building at her feeding therapy.  The OT is really nice.  BUT Whitney cries and cries the entire time.  It's not a scary place, no one is wearing scrubs or a white coat, and nothing hurts her!  I really don't understand it but for some reason she cries the whole time!  They are just playing with toys and Whitney will just cry and eventually vomit!  Anyway, hopefully one day she will enjoy it.  Whitney is very sensitive to new situations and new people.  That's one reason why she really needs OT. 

Speech Therapy comes every other week.  For this program, a child has to be 50% delayed in the category to qualify.  I really don't think Whitney is but they still want to work with her on her speech.  She works on Whitney's sign language and tries to get her to repeat sounds or rhythms. She doesn't repeat very many sounds, just "Bah" and "Dah" and sometimes "Mah".  Whitney definitely babbles a lot more than I've seen other kids do her age.  She also knows over 25 signs!  Like More, All Done, Up, Down, Please, Help, Eat, Sleep, Dog, Duck, Mouse, Butterfly, Hat, Phone, Shoes, Bye Bye, Hi, Bubbles, Bath, Ball, Book, Car, Cat, Home, Baby, Water, and Music. She will only do the sign when she means it or wants it.  She also knows all her body parts and the actions to a ton of songs!  I'd definitely say her brain is growing and that she is not really malnourished!

Whitney's recent Blenderized Diet:

2c. Goat Milk 300 cals
1c. Rolled Oats 300 Cals
1 banana 100 cals
1 apple 95 cals
1/4 c. Sesame Seeds 145 cals.

makes 3 1/2 cups total

2c. Goat Milk 300 cals
1/2c. Quinoa 300 cals
1/4c. Peas 25 cals
1/4c. Spinach 25 cals
1 Avocado 300 cals
1/4c. Walnuts 160 cals

Makes 3 1/2 cups total


these make about 40 calories per an oz! 

HUGE WEIGHT GAIN!!

AND that's a really good thing for my little Whitney!! :)  In two weeks she shot up 10oz going from 18lbs 11oz to 19lbs 5oz.  I'm very happy! Also I'm a bit surprised because she was throwing up a lot.  But I think the trick was giving it back to her right after she throws it up.  She tolerates it very well and that way she doesn't loose those calories and nutrients! I can even give it to her faster and she handles it just fine! 

So since I last blogged, Whitney had speech therapy, I went to the POPSICLE feeding disturbances conference (which I'm working on a post about that), supercross (dirt bike race), church, family dinners, Occupational therapy, feeding therapy, and today was her synagis shot appointment. 

Whitney's speech therapy went great.  This time they hung out in the living room instead of the kitchen. Whitney is very attentive  and I think that her speech skills are very impressive.  Compared to other children her age who can only grunt and point.  :)  Whitney can make so many different sounds and know lots of sign language. 

So like I said I'm working on a nice blog post about the feeding conf. I just have to look at my notes.

Super Cross was awesome!  Check out the post on my other blog! 

Sunday was church and a family dinner so I didn't have time for much else but relaxing.

Occupational Therapy went great.  Whitney falls asleep on the way there and has a hard time wanting to wake up.  The therapist put her on the swing and Whitney freaked out, couldn't stop crying.  So after a bit I picked her up.  They did lots of games while stretching out her rib cage.  They got bubbles and blew them on the swing while it was still.  Whitney loves bubbles then after a while of blowing, the therapist started swinging a little and Whitney started crying, again.  There is so much Whitney needs to learn from OT, sensory and fine motor skill wise, so I'm so glad we get it!

Feeding therapy went great, too!  I can see Whitney improving with being comfortable using a spoon in her mouth.  She likes it when it has water on it to drink.  She was being so silly and smiley it was so cute!  Her therapist was able to use the DuoSpoon this time which is awesome too! We always reward her with bubbles when we put the spoon in her mouth for three seconds.

And today was the synagis shot. Now normally Whitney does pretty good going to any and every Dr. office, but today, this was different.  So my mom came and was carrying Whitney and as soon as they stepped into the building/waiting area, Whitney started crying.  A really sad, scared, pitiful cry.  Made me want to leave right then.  But I know she needs this shot so we continued on.  The crying got way worse when we walked in to the room.  The nurse was talking so softly that I couldn't even hear her. Whitney then threw up.  Yeah she was so scared and screaming so much that she threw up.  The nurse asked if she was sick and I just said no she just really scared and anxious. Then she wondered if she'd be okay with getting a blood pressure, that if she just cries it wouldn't work.  I said that well she going to cry, but she wanted to try anyway. Whitney freaked out more when the nurse came towards her with the blood pressure cuff.  Yeah.  Then I held Whitney and she was just shaking so much and only calmed for a minute when I sang a little.  Again, second guessing if this was worth it.  Finally I brought her over to the bed and she held on to my fingers so I couldn't just leave her.  My mom stood there as well to help hold her legs and bam...shot.  While looking at Whitney and holding her hands,  I finally broke down.  My tears gushed no matter how hard I tried to hold them back. Afterwards I immediately picked her up and quickly walked out the door and down the hallway.  I think at one point Whitney wondered why I was crying.  Then we went back in and the nurse said she could go out in the waiting room and watch the TV.  Of course Whitney is still crying and shaking.  We finally got outside and let Whitney walk around.  My mom said that next time I can leave the room, normally I'm not standing right by Whitney,  just this time I felt so so bad and she wouldn't let my fingers go.  We drove home and Whitney was pretty fussy the whole time.  But my mom feed her and she kept it down!  Went right to sleep in her crib when we got home.  And me straight to the blog to share my traumatic experience with everyone.   

A pic of Whitney today in her "One fish, two fish, red fish, blue fish" shirt, which is one of her fave books!

Feeding Therapy

Today we went to feeding therapy, which is done, of course, by the speech therapist, she just focuses on oral motor skills.  I drove this time and right when we got into the waiting room, Whitney vomited!  It wasn't much but it splattered everywhere!

 Luckily we were late so there was no one else in the room!  She didn't even give us any warning at all! My mom was holding her so it got all over her left sleeve.  This was about 3 hours after her meal this morning (which she also threw up). 

So after we got that all cleaned up we went in for the last 25 mins of therapy.  Whitney did terrific! She opened her mouth wide for the vibrating brush to rub her checks and gums and tongue. Then we reward her with bubbles.  And massage her mouth again and reward with bubbles.  Whitney hated this activity at first but is getting much better at it.  She didn't even gag!! She put a wet spoon in her own mouth today. 

I just need to make sure I do this with her at home once or twice a day.  I'm also going to try to start giving her more food to taste and hold during meals and through out the day.  Normally she doesn't want anything to do with the food but I will keep trying.

I really don't think she is ready to skip a whole tube feeding while I offer her different foods to eat. She only gets about 5oz every 4 hours.  So that would be like eating breakfast at 7am, lunch at 11am, then skipping the 3pm feed, and eating again at 7 and 11pm.  Maybe if I fed her an oz more two of those times? I might try it this month.   I don't want her to lose weight.  We did not get her weight check done today but will next week.

Whitney doesn't really have the skills to eat solids which is pretty much the only thing stopping me from offering her certain foods.  Plus, of course, she'll hardly eat them any way.  But the other day she did eat some Ramen soup with a spoon!  Then she gaged on the last little piece and threw it all up.

Whitney's friend Carsten is coming over soon so maybe they can have a lunch together!

I haven't given her the prevacid and bethanechol meds for a couple days...maybe she needs them again.