Monday, October 31, 2011

A Haloween Tradition is Born

I happened to catch a commercial for the Charlie Brown special The Great Pumpkin and even though I am insane about the kids being to bed on time we thought it would be fun to let them stay up to watch the special for the first time.

I made some of Ben's favorite chocolate "pupcakes" and the kids got their pajamas on and everything ready for bed.

I am not sure that *I* ever saw this special and I never realized how sarcastic Charlie Brown is.  I am sure most of it went over their heads, but they got a great kick out of the pumpkins and Snoopy.
And amazingly, even going to bed an hour late the world kept spinning and life continued as normal.  So lesson learned for mama as well!

Today is Anna's first follow up with the feeding/swallowing team at CHOP.  I am hoping she has gained weight that will be the crowning glory to all of this.  She continues to do great with her "bites" at home.  She is for the most part 100% that will be good news to the team I am sure.

Then we will be home for trick or treating, dinner, and a movie with popcorn (Ben has requested Toy Story).  BTW say a prayer that there is no major trauma over the likely need to confiscate much of Ben's candy due to dairy/egg ingredients.

Tomorrow Ben has his first dentist appt for a regular cleaning and check up.  I am pretty sure this won't go well, but I love our dentist and they are super caring and understanding.  So I hope they can put his mind at ease.  I am sure they deal with unhappy kids on a regular basis. 

Then in the afternoon I have a routine growth scan (ultrasound) with the perinatologist.  I am 29 weeks and happy to be entering the homestretch!

Wednesday, October 26, 2011

Yarn Along

Catching up once again with Ginny's Yarn Along!  Hopefully coming to the homestretch on the owl sweater for Anna.  I just have the sleeves to finish and then of course need to put it all together.  I don't know how you other participants seem to have a new big project started and completed each week in the Yarn Along!!  I think I lack knitting stamina LOL  Anyway, I have been quite pleased with how this is turning out and I cant wait to see the finished sweater.  It is my first try at any sort of cables and these ones were surprisingly easy and a super cute effect in my opinion!!

As for reading.  I am finally on the last book of the Narnia series, The Last Battle.  I have enjoyed the series, but I can't say I loved it.  Fantasy just ain't my thang!  I will no doubt be reading it again with my children someday and I will enjoy that, but for now I am glad to be moving on to other reading!!

Check out Ginny's blog, Small Things, to see other Yarn Alongs!  Always something inspiring to be found there!

Thursday, October 20, 2011

What a Year!

Today is the one year anniversary of Anna's surgery to correct her Annular Pancreas.  It has been a year of ups and downs for sure and here we are a year later with a fiesty, healthy, beautiful 2 year old.  It is only as we look back and understand and deal with all of the lingering issues that we realize how sick Anna was and we had no idea.  Through it all she has been so resilient and seemingly has let it all slide off her back like just another day.

Anyway, not to make the occasion over dramatic here are some pictures from the last year of little Annabella:

just out of surgery
she was attached to so many tubes and wires to deliver nutrition, drainage, vitals, pain meds, etc etc 
Getting her gtube started
Then a switch to a gtube (one of our best decisions!)
Lost her gtube right before bed and we had to take her for a late night trip to the ER
Day Hospital Feeding Program.  Hopefully her last big medical hurdle.
And here is a picture of Ben and Anna yesterday.  You would never guess what she has been through.  You would never guess there is anything wrong with her.  But I do find it pretty funny that the kids test their vitals signs on a regular basis LOL Here is Ben taking her blood pressure, which Anna calls, "A little squeeze".

Wednesday, October 19, 2011

Wordless Wednesday

A Day in Day Hospital (Better Late Than Never)

Well we finished Anna's day hospital therapy program on Friday.  So, as I said, better late than never.  When all was said and done Anna did really well with the program and left the program not having lost or gained any weight.  But her tube was weaned 50% and she was maintaining.  We ran into minor medical issues when she started vomiting when they increased her oral intake.  They are assuming it was a cross between reflux (which she has been diagnosed with but wasn't currently on meds for) and her motility issues.  They got everything worked out and she left the program taking all of her "bites" and no vomiting.

So far she continues to well at home and the transition has been smoothe.  We are doing three structured meals a day of 4oz of food each and then she has regular dinner with us as well, but whether she eats then or not is up to her and it is a no pressure situation.  Generally she does eat pretty well at dinner so she is basically getting 4 meals a day.

So here are a few pictures from our day.  I got....uhhh...reprimanded by hospital security for taking pictures in the Atrium I had to sort of cut some stuff short LOL

We made the same trek every morning from the garage to the Children's Seashore House.

Our first stop would be to the Day Hospital room where we would meet Miss Cheryl.  She was the nurse in charge there.  Once a week Anna would have her vital signs checked and twice a week she would be weighed.  I also handed in daily calorie counts here.  Anna loved Miss Cheryl and she was the darling of Day Hospital.
This is also where our "Separation Time" took place for Anna.  So the children could get comfortable being taken by the therapist I had to drop her off fifteen minutes before her sessions would begin.  The nurses at the Day Hospital room would take her for walks and play with her and then the feeding therapist would pick her up and bring her down to therapy.
During "separation time" I would go down to the therapy area.  I would sit on one side of a two way mirror.  I would have something to eat, check my e mail, stuff like that.  You can see Anna's therapy room on the other side of the mirror. Each session was recorded on my little TV there and we have them on cd.
That is Anna's little eating chair and her bin of special meal time toys.
This picture came out dark, but once Anna's therapy session was complete her therapist would take her out to the lobby to wait for me.  Anna loved looking through those windows....below them was the PT swimming pool.
After her first session we would have a 2hr window of time to fill up before her second session.  So usually we would play a little and watch some cartoons in the lobby there first.

Peek down at the pool some more...
Then we would go for a walk through the courtyard here.  We later found out there was a duck pond within close walking distance and we would often walk there instead (we only actually ever saw a duck there once though....lots of turtles and fish though).

After our walk we would head to the Atrium where there are a few interactive sculptures and some room to run around.

Recently they installed a radio station in this Atrium as well (funded by the Ryan Seacrest Foundation) and whenever the studio was in use the sculptures were turned.  Well they were in use often unfortunately.  It really bugged me to be honest because the sculptures served so many more children then the radio station which I never saw more than one or two children in there at a time.  This morning the sculptures were off for a change.

A little out of order, but we liked to visit this panda in the courtyard.

WE would usually make our way up to the Day Hospital toy room and play there until it was time for Anna's nxt sessions.

After her second session we would go to the Connelly Center to get a nap room and thankfully Anna would sleep for this two hour stretch before her last session of the day.

The nap rooms were really nice!  They were like teeny tiny personal hotel rooms!

So we would wake up all groggy and cranky and then head to the last session of the day before we got to go home.  And that is basically what our days looked like!

Monday, October 03, 2011

Quick Catchup Update Sort of Post

I don't really know even what my last update involved, so I may be repeating myself.  I have very limited blog time/energy for the next few weeks.  We are in the middle of our Feeding Therapy Day Hospital stuff.

I can't remember if I mentioned anywhere that we did decide to take Ben out of the program last minute.  So it is just me and Anna here everyday.  Ben continues to eat well and we are having moderate success getting him to taste (by taste I mean touch a new food to his tongue..maybe sounds insane to you, but to those mommies with feeding issues understand even that is a leap) a few new foods.

Anna is doing great with the therapy.  She is adjusting well to the new routine and all the new people and situations.  She caught on to how the therapy works very quickly and now accepts all of the food she is given.  She has gained some weight and has had her tube weaned down twice now.  We were giving her ten hours overnight and now she is down to six.  So lots of progress in just two weeks.  I have taken pictures for a planned "Day at Day Hospital" post, but haven't had time to upload the photos or anything yet.

Just a few pics here from the muddiest, messiest apple picking excursion ever and a pic of Ben and Anna with their cousin.

Moe, Larry, and Curly??

And this is Ben with his beloved chocolate "pupcakes".  A friend passed on a real simple recipe for absolutely delicious egg free, dairy free chocolate cupcakes.  It is literally just a box of devil food cake mix (and read the labels...some have milk some don't.   I THINK I got Dunkin Hines.  One box I read said, "May contain milk."  Uhhhh, well when will you know for sure??)  And one can of plain pumpkin.  Just mix it up and bake.  They taste like Hostess cupcakes.