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".

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 area...so 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!

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.

Paws Farm

A few days ago we went to visit Paws Farm a children's nature center.  I had heard of this place but had never gone before.  Turns out it is about five minutes from our house and a stupendous place to go when you just need to get the kids out of the house.  And, best of all, the kids LOVED it.  Benjamin never wanted to leave.  We had to promise him that we would come back the next day with Daddy (and we did!)

The center has three indoor play areas, several small animal exhibits, a large animal area with goats, sheep, ducks, chickens, deer, llamas, pigs, horses, rabbits, and an emu!  And then outside there are several playground areas...a large wooden train, a large wooden boat, swings, slides, bridges, etc etc

The first area when you come in is probably Ben's favorite because of the transportation center.  There are cars and TWO Thomas train tables!  What more could a Benjamin want?

There are also all sorts of tunnels, and ride on toys, there is a playhouse and a play tree.  Here Anna is on the ice cream truck.  She can't even reach the peddles, but she loves it.

I love this little seesaw!!!!



Towards the back of the room there is a huge boat to climb and play in and then a big sand table with sand toys.

This is one of the train cars outside.  Ben especially loved this and even befriended two little boys there and they took turns "driving" the steam engine.

This pig totally reminded me of the pig in Charlotte's Web that wins at the state fair, "No name, just call me uncle".

So, we decided to purchase a year long family pass....because I am picturing the long winter months with two toddlers and a newborn and needing to get out of the house.  It is so stress free there and at the indoor areas the children require very little supervision.  Meaning I can sit with a baby and see the kids whereever they are and everything is so kid friendly that there is not really anything they could get into trouble with.

This indoor area has a grocery store so the kids can go shopping, this big delivery truck, puzzles and small activities, and a play tree area with acorns and a slide where they can act out being chipmunks and squirrels.

Ben had a great time with two little girls ambushing me and the other mommy with acorns.

There is a little children's theatre area with lots of costumes to try on.  Anna chose a ladybug costume than was way too big for her.

I love this picture of Anna.....SOOO precious!!

How did that old Sesame St. song go?  "One of these things is not like the others...."  Can you tell Anna was WAY overdue for a nap?



Here is one of our little friends dresses as an elephant!

And there she is with her two brothers as lions.