Videos of Making Whitney's Homemade Blended Food for tube feedings

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.

 

Occupational Therapy

Today was Whitney's first day of Occupational Therapy.  The car seat was still in my moms car because my husband was too tired to move back to ours.  So my mom drove us! 

 I sat in the back and fed Whitney while she slept.  The appointment was at 11am which is usually her nap time.  We were running late so we got ther 20 after. 

When we got there Whitney stayed asleep in my arms for another 15 mins or so while I talked with the therapist and I eventually gently tried waking her up.  She is a very nice (pregnant) lady. 

When Whit awoke she was very nervous at first.  She has been in that room before but with a different therapist (her regular feeding therapist).  Also she was still really tired. 

 Eventually Whitney walked around the room and got in to the bean box and played with the OT...5 minutes later it was time to go.  We go again next week but this time it will be earlier! 

I might get Whitney's weight checked tomorrow.  I suppose that even though Whitney didn't gain much weight at all in the last 2 months she did gain  4 oz in the last two weeks.
 I think the difference was that when she vomited, we feed that amount back to her so that she didn't lose any calories.  Before, I just waited till her next feed which probably wasn't best. 

She threw up three different times today.  First was about 2 hours after her meal and she was just standing by me.  No crying or burp or gag or retching.  Just a random spew.
Next was in the car. I think she got car sick for sure. 
Last was when she was crying shortly after a bolus feed. I feed her while she was asleep at 3pm.  Whitney woke around 5:30pm and around 6 she was crying and vomited about 3oz or more.

Whitney's Blended Food Formula tonight for the next two days:

2c. Goat Milk

1c. Rolled Oats

1/2c. Mixed Berries

1 med Banana

1 med Apple

1/2c. dried Cranberries

ABOUT 980 cals in 3 cups

2c. Goat Milk

1c. Granola

1c. Mixed Vegetables

1/2c. spinach

1/2c. sweet potato

1 avocado

ABOUT 1,000 cals in 3 cups

These blends are what Whitney will get for the next two days. I also add in multivitamins, probiotics, and nutritional yeast.  I pray this will help her grow and be healthy and not vomit. 

Weight check

REAL QUICK BEFORE MY HUSBAND AND I GO ON OUR VACATION I WANTED TO WRITE DOWN WHITNEY'S WEIGHT GAIN FOR THE PAST COUPLE OF MONTHS SINCE I HAVE STARTED THE BLENDERIZED DIET.  ALSO WE WEREN'T ABLE TO GO TO HER FEEDING THERAPY FOR THE PAST TWO TIMES...FOUR WEEKS WITHOUT IT.

Nov. 15= 18lbs 9oz
Nov. 29= 18lbs 9oz
Dec. 13= 18lbs 7oz
Dec. 20= 18lbs 7oz
Jan. 3= 18lbs 11oz

ME= VERY DISAPOINTED AND SAD AND BEWILDERED AND SHOCKED AND CONFUSED AND THINKING SOMETHING NEEDS TO CHANGE

WHY IS SHE STILL VOMITING (WE ARE GIVING IT BACK TO HER) AND NOT GAINING WEIGHT? DOES SHE NEED MORE THAN 900 CALS A DAY? IS THIS NORMAL? BACK TO FORMULA? FOR THIS WEEK I'LL HAVE FUN ON MY TRIP AND FIGURE THIS ALL OUT WHEN I RETURN!