Tube Feeding update

Audra is adjusting well to her night time tube feedings.  She knows the routine now and will help me get everything set up.  She knows which connection goes where, how to clamp the tubing and how to open and close the ports.   

The first week or so, once she was hooked up to the pump she would lay very still until she eventually fell asleep.  Either she was still a little bit sore from the surgery, or she was just a tad bit afraid of what would happen if she moved around while connected. 

Unfortunately, she has passed that stage.  Now she moves all around, to the very limit of the tubing length.  And she has figured out that she will get unhooked from the tubing/pump if she needs to use the potty.  So now she signs "potty" over and over, even if she just went potty.  It is difficult for me to deny taking her to the potty when she asks....but after the 3rd or 4th time in less than an hour I start to get suspicious. 

We have only "fed the bed" once so far...which resulted in a very messy wake-up call.  This happened because somehow the side medication port of the tubing popped open and the formula chose the path of least resistance when being pumped in...which was out the side port instead of into Audra's tummy.  Since then I have taped up the connections pretty aggressively each night. 

Sometimes I need to start her night time feeding a little earlier than bedtime.  For instance, if she stays up later than usual for a special occasion or if I need to wake up super early for work the next day, I want to feed to be finished so I can disconnect her before I leave.  In these instances Audra has a little backpack that holds her pump and bag of formula while it is running. 

sleeping beauty...part 3

because I just love adorable sleeping pictures of Audra...
and
because she makes it so easy to take adorable sleeping pictures of herself...

...here is another sleep beauty post!

Of course, she looks most adorable when sound asleep in her own big girl bed:

But she is also stinkin' adorable in any position, anywhere!

 Caught twice in one day!!

surrounded by her big brothers gaming devices:

and sports equipment:



(note she is laying across the step up to the kitchen from the family room, she's quite talented in her sleeping abilities!)

 

 but the kitchen table seems to be a favorite spot of hers :)

France & Falcons

Maura's summer soccer season began this weekend.  The organization has a World Cup theme this year and Maura is on team France.  She had a fabulous first game and even scored a goal!

 

 

 Just two years ago she was the girl who ran along side the player who had the ball and cheered them on...even if they were on the other team!

In the fall she will play on a U8 travel soccer team.

Aidan's spring ice hockey season ended this weekend.  His team made it to the championship game. 

When he was younger he thought the cup that is brought out at the end of the game was the real Stanley Cup.  I think he knows better now...but he still gets just as excited!

 

GOAL!!!

 

 

School's Out!

Today was the last day of school for Riley, Aidan and Maura.
(Audra's preschool is on break now but will be in session for the month of July).

Maura taking one last look into her kindergarten classroom after dismissal...

 The boys running from their buses!

1st grade here she comes...

Only one more year of elementary school for Aidan

 

And how is it even possible?...

only one more year of middle school for this guy!

While today may have been the official last day of school...it seems the schoolwork ended when June started.  The past couple of weeks have been filled with field trips, field day, talent shows and picnics.

Field Day for Maura

 

 

Always with her BFF

 

 

Aidan's field trip to the state capitol in Harrisburg

and Hershey's Chocolate World

 

 

Aidan's talent show...

 

Honestly...I am looking forward to some lazy mornings hanging out in our PJ's, followed by afternoons at the park and pool.

 

This is a first....

It seems I over packed for Audra's hospital stay this week?!

Usually, Audra out-stays her welcome at CHOP...
and I have to wash and re-wear the same clothes multiple times...
and I run out of quick "meals" that I can consume in the bathroom, out of Audra's sight.

But this time...
Audra rocked her recovery,
her tummy didn't give her any trouble at all,
and she was discharged yesterday!!

She tolerated her first night of half volume tube feedings, was becoming more comfortable, and was getting her appetite back,
...so she got her walking papers!

Last night at home we did full volume for her tube feeding overnight (about 2oz per hour for 10 hours)...

~she slept like a rock
~there were no annoying pump alarms during the night
~and we had no nasty leaking of formula from any tube connections

I'd call it a win! 

Today she is up and running, getting into everything, and just being her adorable little, lumberjack of an eater, self. 

The day after her big day...

 Everything went beautifully yesterday with Audra's double surgery. 

 

The hospital actually called us in the morning and asked us if we could bring her in earlier than scheduled.  We happily agreed...as we were running out of ways to distract her from wanting to E.A.T.!

 

She went into the OR at 1:00.  The ENT doctor did his part first, the tympanoplasty.  It ended up taking longer than he anticipated because she had a fair amount of scar tissue with the perforation of her ear drum.  Once he was done the general surgeon stepped in to place the gastrostomy tube.  This part was pretty quick and then she was out of the OR about 5:00. 

 

Our little trooper slept off her anesthesia for a while, and when she woke up she sat right up to the amazement of her nurses who said they haven't seen a kiddo move around so much after abdominal surgery. 

 

That's our Audra...she did the same thing after her surgery last November. 

 

One.tough.cookie!

 

Audra and her faithful friend...

pink-flamingo-bunny...

who's been with her for every test, procedure, surgery!



 

This morning her ear bandage came off

and she happily enjoyed a popsicle...

 

Today the childlife therapist brought in a "Tubie Friend" for Audra.

It's a real Build-A-Bear with an actual G-tube!

They are donated to the hospital (to give to children when they get their G-tube) by a organization called Tubie Friends.  What an awesome idea!  We used the bear all day with Audra to show her what the tube was like, let her play with it , and prepare her for what needed to be done with her own tube.  I have already sent an email to the company telling them how grateful I am.

One happy girly and her tubie friend!

 

Audra's tummy has "woken up" in record time after this surgery.  She was so happy to be able to eat real food this afternoon.  She will get the special formula through her G-tube for ten hours tonight.

The formula she will be getting is an elemental-type formula that is broken down to make it easier for her impaired GI system to digest and absorb.  She will still be able to eat what she wants by mouth, even though her body does not absorb all of it properly.  This is kind of  a "best of both worlds" situation.  She will now be getting the nutrition that her body needs and should be able to absorb, which will hopefully result in her growing better...AND she can continue to eat by mouth as she loves to do, which will really be for pleasure because her body doesn't seem to find the food as appealing as she does. 

education & nutrition....Part 2

A few posts back I wrote about the dilemmas we are facing in regards to Audra's education and nutrition.

Well, here is the follow up to that post...

Education:
Last week we had Audra's IEP meeting with the school district.

Now...I am used to IEP meetings...and I have dealt with this school district for all 8 years of Riley's education so far.

So, I was prepared.

Prepared to advocate and fight for every precious little thing that Audra needs and deserves regarding her education.

But surprised is what I was instead...

Surprised that I didn't have to fight and rationalize and even beg!
Surprised that the school district acknowledged that Audra is unique.
and
Surprised that they actually asked me to pass a picture of her around for everyone to see.

She is a beautiful, spunky little girl, whose educational fate was at the table that day...
Right next to her gorgeous little face. 

I am used to trying to convince the school district to see beyond the paperwork...the evaluations, and test scores and diagnoses...
And instead look into the eyes of the precious child they are discussing.
But this team of people at this IEP meeting got it!

And they were willing to give Audra what she needs...
even if that meant something very outside of the box.

Next fall, my newly 7 year old little girl will stay in preschool.

And, yes...I am happy about that!

After much thought and discussion, we began to realize that this is exactly what Audra needs.  She has only been hearing well for about 6 months...which means she has the hearing age of a 6 month old.  She still has so much exploring and developing to do.  It would be wrong to rush her, which might result in her missing crucial developmental stages.  She needs to be met at her own developmental level, and taught like a 2 year old at a pace that fits her needs. 

They also increased all of the therapies she will receive next year.  Just last month her services at preschool were increased!
She went from speech once a week to twice a week and next year will be three times per week.
Same thing for OT.
And they are adding PT once per week.
Her hearing therapist was recently increased from 5 to 8 hours per week, and next year it will be 10 hours per week.

Yes, she is very far behind...
but her potential is huge!
Once she starts catching up, I don't think she's gonna stop!
I just know this is going to be a big year for my little girl.

I am both thrilled and thankful for the willingness of the school district and her preschool to see Audra for who she is, and think outside of the box regarding what is in her best interest.

Nutrition:
In late May it was decided by Audra's GI doctor that we should go ahead and do a trial of tube feedings to see if it will result in any improvement in her growth and nutrition.  Sean and I have thought about this issue and discussed it multiple times since day one.  We knew that tube feedings was very likely to be in her future from the first day we read her file.  And we have managed to hold off until now. 

But now it's time.
And the timing is quite perfect.

She is out of school for 3 weeks
and
she was already scheduled for surgery on her ear drum.

So, tomorrow is a big day for our girl.  She will have her ear drum repaired (tympanoplasty) by the ENT surgeon (which we are very hopeful will improve her hearing even more!) and then the general surgeon will place a G-tube.  Sean and I both agreed we didn't want to do the NG tube with Audra.  We would have been responsible for placing that tube repeatedly...at home...through her nose and down to her stomach.  Not pleasant.  The decision to go straight to a G-tube was easier since she was already scheduled for the OR, and the G-tube could be done the same day.

Surgery is scheduled to begin around 1:30pm.  And she'll be in the hospital for at least a few days...
or as long as it takes for her sensitive tummy to recover. 

My beautiful ballerinas

Today was Maura and Audra's dance recital. 
 

This was Maura's 4th dance recital,

and Audra's very first dance recital!

Maura danced to "Fairytale Lullaby"

Audra 'danced' to "Pony on the Merri-Go-Round"

At the dress rehersal last night I caught both of them watching the big girls dancing on the stage...

What must have been going through their minds?!

Walking in to the auditorium for their big day...

 

Backstage, waiting for their turns on stage...

 

Audra was a willing participant,

(which is more than I could have hoped for)

but she must have wondered what all the fancy costumes

and the huge auditorium full of people was all about.

 

I really didn't have high expectations going into the show.

I was just hoping she would actually go on the stage,

and then stay on the stage.

 

Well, she made my heart swell with pride...

she was smiling,

clapping,

kicking,

and

twirling!

 

She is just amazing.

To think what her life was just a little over a year ago,

and then to see her up there on that stage

enjoying herself,

with a smile that lights up my world...

is priceless!

 



Oh, how I love these beautiful ballerinas!

soccer stars

Riley and Audra finished up their soccer season this week.  I have said it before...but I just can't say it enough...I LOVE this program!!

Last night was the family picnic and awards party.  Audra's favorite part was the many picnic tables full of food.  She went back for more and more and more :)

Riley's coach said he is the most considerate athlete on the field...he's always the first one to check on his teammates if they get hurt, and make sure they are ok.

Audra's coach said all of the volunteer buddies wanted to be Audra's buddy....and Audra always wanted to be buddies with everyone...not surprising from little Miss Social!