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.

A Smattering...

Just a bunch of random pictures from over the last few months.  And some updates and whatever else I think of ;)

Well I am 22 weeks as of tomorrow and so far all is going well.  I had my 20 week ultrasound a few weeks ago and the baby looks great.  Measuring just right, all her parts where they should be, she is a little wiggly dancer.

what happens when you leave Anna alone for a minute next to an open package of cookies

Thankfully nothing too exciting to report about Anna!  She is plugging along in her usual Anna way.  She has a SERIOUS obsession with shoes...it is hysterical.  We received a pair of cowboy boots as hand me downs....and let's just say "She's gone country!".  She is not TOO picky about outfits I pick out for her but I had better pick the shoes she wants!

Mr. I don't need a nap!

After all of Ben's recent GI tests came back negative Claudio and I made a long discussed, but never implemented decision to take Ben off dairy.   He has struggled with chronic constipation and eczema since he was 2M old.  At the time the only thing he was eating was a regular dairy based formula.  Despite my instincts about dairy doctor after doctor told me there was likely no correlation.  He was tested for a dairy allergy via scratch test and it came up negative.

So, finally we just went with our instinct and eliminated dairy.  Things are definitely different.  He is pooping better (unmedicated), he is eating better (even without the 400 calorie Boost shakes twice a day he is maintaining his weight with REAL food), suddenly my very sedate little boy has a ridiculous amount of energy.  If I don't get him out of the house he is literally, and I mean LITERALLY, bouncing off the walls, he is even much more social: initiating play with other children, even children he doesn't know at the playground, talking to playmates (we were on a playdate yesterday with some friends who have  daughter a little younger than Ben.  I overheard Ben go up to her and say, "You want to hold me hand?  Come on let's hold hands!" LOL sadly, he was refused, but it was just so sweet and cute and not the sort of thing I have ever seen him try to initiate before.

During our last few meetings with the Feeding/Swallowing team at CHOP they have become a bit exacerbated at me for making this decision to cut dairy without some definitive diagnosis.  It is very difficult to boost calories without dairy.  And I understood that going into this experiment, but is a very slightly fatter child worth the poisoning effects that dairy seems to have on him?  Isn't it better to have a skinny kid who eats and is healthy and happy than a slightly fatter kid who is miserable, uncomfortable and surviving on medical foods alone??

They didn't see my point of view, but of course they can't force us to give him dairy.  I did, however, make an appointment with a new allergist.  One from CHOP who knows more about the difference between IgE (typical allergeric reactions) allergies an non IgE allergies (Ben's dairy issue is likely a dairy sensitivity caused by a different type of immune reaction called IgA or Igg and it is sort of new research and new tests and standards are being developed to detect these sorts of reactions.  I am convinced Ben has this sort of sensitivity, but I am finding in order to get him the care I think he deserves AND have things covered by our insurance that a diagnosis is almost essential....Doctor Mom won't cut it apparently.  So we will see what this Alllergist has to say). 

Their feeding therapy program is nearly upon us.  They start on the 20th.  I wonder daily what our days will look like.  The program is everyday, all day.  This leaves us taking the most notoriously trafficy roads during rushhour both ways.  The program is all day, but there is a LOT of downtime.  Basically they have their three meals a day with the therapists and otherwise we are basically on our own to find something to occupy ourselves.  And the other children's hospitals that have programs like this the program is usually done inpatient.  Not sure why CHOP does it this way.

We have had our first colds of the season already.  Poor Ben ended up with croup and on a three day round of antibiotics.  It was our first bout of croup.  Thankfully it wasn't too bad for Ben...as long as he was calm he was ok and once he was on the meds he didn't have another bout of those terrible gasping, barking coughs.

Yarn Along

Catching up again with Ginny's Yarn Along (btw if you have never checked out her blog I recommend it.  I wait anxiously for her posts each day).

I have finished my Stella Pixie Hat and I must say I am quite pleased with it.  It is delicious!  I love the yarn and I love how it turned out and I can't wait to put it on my new little sweetie when she is born.  I just hope it will fit her through the winter.  It is very stretchy so I am hopeful.

I found this adorable Peter Rabbit button at JoAnn's....a little Beatrix for my little Beatrice.

I have been working and making good progress on Anna's owl sweater.  I have gotten to the yoke where the cabled owls come in.  Cabling wasn't as scary as I thought!  So far this has been a fun pattern and interesting...in other words I look forward to working on it....which is a recent phenomena with me and knitting.

And since Anna was hanging around she insisted there be a picture of her in all her bed headed glory!  Actually her combed hair doesn't look much different LOL.....Let's be honest!  The girl has some wild hair!

Check out the link for more Yarn Along posts!

Backyard Camping Trip

I am SOOO behind in blogging, but a few weekends ago I was out in the morning and came home to find Claudio had set up a tent in our yard.  And he and the kids quickly made plans to sleep there that night despite the forecast of rain.

I was doubtful about Anna sleeping in the tent.  She is a good sleeper as long as she is in her crib...otherwise she just thinks it is a game.  My kids were not born with the genes to make them capable of co-sleeping LOL.

So they gathered their lovies and waited for daddy.

Claudio, the much more tolerant and patient parent, thought Anna would be no big deal.

The kids settled in for the night all nice and cozy in their sleeping bags

Anna played along at first, but 8pm came and went and Ben fell asleep....9pm came and went and Anna was still awake and playing.  Claudio reported that she kept yelling, "GRAMPY!!!"  no idea why LOL...so at 9 even he had met his limit and brought her inside and promptly deposited her in her crib for the night (where she quickly and quietly fell to sleep)

Ben made it through the night with no problem and had a great time.

Then and Now: My Dancing Fool..