Presenting An Interview with Benjamin

So I FINNNALLLYYYYY started the Little Saints preschool program with Ben today. One of the activities was tape record an interview with your child. I have to imagine tape recording was suggested because it was written before everyone had cameras that can take video. So we went with a video interview. He was a bit distracted by the fact that had a bevy of paints in front of him and I was delaying his artwork. But still cute.

A Day at the Zoo

Yesterday Claudio had off from work so after a quick (and seemingly pointless) followup with Anna's surgeon at CHOP we went for a trip to the zoo!

We have been having unusually warm weather for March. So it was sunny and about 80 degrees out. (and interesting note on the weather. I am a people watcher...I can spend an entire day sitting somewhere watching people go by....and it was interesting to see so many families in shorts and tshirts and sandals etc, but still a large amount wearing long sleeve and long pants and heavy shoes. Some even in jackets. I wondered how many hadn't checked the weather and how many just are not prepared in mid-March to break out the summer clothes. *shrug* Of course then I noticed that even though I had my kids in shorts and tshirts and I was wearing capris and a tshirt....and I even took off Beatrice's socks and pants, that my husband was wearing jeans, a long sleeve shirt, and hiking boots LOL. I know his reasons though. He is just goofy like that!)

Anna just cracks me up to just look at.  Sitting there in her enormous pink throne carseat with baubles in her pigtails, and the sunglasses....it's just too much LOL

We packed our lunch and ate at the cafeteria at CHOP before heading to the zoo (notice Claudio doing "bites" with Anna to get some peanutbutter and jelly into her.)

Moe, Larry and Curly....

This is basically what Beatrice did all day.  She woke mid day for a bottle, but otherwise snoozed....what a life!!

Once the kids heard there would be kangaroos they sort of wanted to skim past everything else and get to the kangaroos (which were of course the last thing we saw on the way out of the zoo LOL)

"Ben, you want to put your face in there and be a monkey??!"  "No" Yeah that is my Ben...arms crossed and all.  Never one to perform on request.

We all giggled at this lion because she sleeps just like our cat Bunny.

I was so proud of this little guy.  He is the type of kid that is just very reserved and shy...and I would say misunderstood.  He likes to approach things on his own terms and at his own time and the more he is forced or rushed the longer he takes to warm up to a person or situation (I could write a whole post on this topic.  Largely I feel like this is fine and just how my otherwise lovely and sweet kiddo is, but there is a fine line between shy/reserved and rude/antisocial....anyway someday I will tackle this topic).

So when I asked if he wanted to ride the carousel I was SURE he would say no (as he does before many times).  But he said YES!  And then told me that I should not hold his hand because he was going to be brave.

And he LOVED it!!   

pardon me passing through...

We love hedgehogs!!

Ben was hilarious with the zoo map!  He would stop and study it and direct us where to go.  As Claudio says, "He is not shy about dictating."  So true.

And as I said, in his time he was ready to put his head through the little hole and let me take a picture LOL

Giraffes for Grandma JoJo

Finally my little kangaroo meets his beloved favorite kangaroos for real!  He was of course exhausted and half asleep by this time but he loved it (the kangaroos were exhausted too as most were lounging in the dirt LOL).  Next time we go to the zoo we will go the reverse route we took so kangaroos are FIRST!  Lesson learned 

Such a Snooze!

 I hope Claudio doesn't get mad at me for posting this.  Luckily I am not sure he knows I took it and he doesn't read my blog...so he may never know!  It was just too precious!!  And I love that they are all sitting on what looks like a Toy Story toy and sippy cup and who knows what else is underneath them.  And the handy pencil behind his ear *sigh*.  I love how Beatrice's little hand is just barely touching Bunny and he isn't running away.  Bunny is afraid of Ben and Anna.....and with good reason.

 A closeup of the gorgeous little bundle of deliciousness!!!  Today it is just the two of us.  The olders went to my inlaws for the day.  I love having a slow quiet day like today with just my tiniest.

I was just thinking yesterday of the freedom I had with Ben...to leave him wherever I liked.  I remember I would put him on his activity mat every morning and he would fall asleep there and I would then take him and put him down for a nap in his crib.  If I left Beatrice for even a moment on her activity mat she would likely be sat on and body slammed by one of the other children.  But on a day like today she can snooze or play without fear wherever she likes.

Later today we will be visiting our beloved Dr. Blair for Beatrice's 2M well check.  Can't wait to hear how big she has gotten.  Ben was 10lbs by his 2M.  I couldn't find Anna's 2M info but I found her 3M info and she had just hit 10lbs at 3M.  I am positive Beatrice is no where near 10lbs.  I will be shocked if she has hit 9M.  We shall see.  She is definitely a tiny smidge of a thing.

And last, but not least.....my dear Bunny.  My mushy squishy lump of a cat.  He only comes around once the kids are in bed....safely tucked away.  Otherwise he can be found snoozing on my bed.  Literally he snoozes on the bed ALL day.  Once the kids are in bed he comes down to snooze on the couch.  When I go to bed he comes back upstairs to snooze on the bed.  I would like to sign up for just ONE day like that!

Tag You're It - The "It's An Honor To Be Nominated" Edition

Cynthia over at the LOVELY Finding Great Joy tagged me in a fun little meme.

First I must thank the Academy Cynthia for tagging me because mine is the little unknown, unread, unloved blog.  I love to take part in the reindeer games though!!

Such fun!  It is all about the randomness that is Jamie!  I am nothing if not random!

So without further ado.....

THE RULES!:

1.  The first rule is to post these rules.
2. Post a photo of yourself then write 11 things about you/your life.
3. Answer the questions for you set in the original post.
4. Create 11 new questions and tag people to answer them.
5. Go to their blog/twitter to tell them you have tagged them.

I think finding a photo of me was the hardest part! I am the camera holder and snapper! Rare that I am in the picture!

1. I dream about CHOP just about every night these days.  Last night my neighbors growing up were working at the hospital AND I misplaced Anna on some level of the hospital you couldn't get to from where I was (interpret that however you like but the fact of the matter is if you have ever been to CHOP you know that this is a legit fear.....that place is a labyrinth!
2.  Growing up I used to hide my Cabbage Patch Kid under the cover of my bed for fear that someone would peak in my window, see the doll, and try to steal her!
3.  Now I sleep with a mushroom...much less concern about abduction!
4. My mother's maiden name is Fagot...I don't think any witty commentary is required.
5. I don't like the Beatles
6.  I also don't like Elvis
7. I have a degree in music education and used to play the flute quite well (I can also play the clarinet, saxophone, trumpet, trombone, euphonium, tuba, and can fake it at piano and french horn)
8.  When I was little I used to practice Candy Land to improve my skills at the game.
9.  All of my kids were born on Tuesdays
10. Ben was born on Super Tuesday AND Fat Tuesday
11. I once told one of my professors in college that my mom said she was the devil.  I can no longer remember if my mom actually did say that or if I made it up.

Ok, now the questions Cynthia came up with for me:

1. Mini-van or other?  Yes mini van
2. Favorite clothing item?  Oh my gosh.  I am a fashion moron so I have no idea.  My jeans, or my slippers, or my Crocs...depending on mood/season
3. Best friend in the whole wide world? Why? Can I pick two??  Of course I can this is my blog!  First Linda who has been my friend since 5th grade.  She is the least judgmental most devoted and encouraging friend.  I feel like she is always the same while I go through all sorts of crazy phases of life...she is a rock. And my #2 is my friend Sharyn who lives in Australia now.  We spent a summer together as co-counselors and she has been my soul mate of friends ever since.  Obviously, we see each other rarely.
4. Favorite movie?  Hmm, I love the Anne of Green Gables movies.
5. Your favorite trait about yourself? Sense of Humor?
6. Best concert you've ever been to?  Bare Naked Ladies
7. Most difficult decision you've ever had to make? Oh man, where do I start?? I guess to convert to Catholicism
8. What did you want to be when you were little? A mom and a teacher
9. Favorite quote? How can it be a large career to tell other people's children about the Rule of Three, and a small career to tell one's own children about the universe? How can it be broad to be the same thing to everyone, and narrow to be everything to someone? No; a woman's function is laborious, but because it is gigantic, not not because it is minute. I will pity Mrs. Jones for the for the hugeness of her task; I will never pity her for its smallness -- GK Chesterton
10. Most expensive item [at the grocery store] that you have ever purchased??  I bought my Keurig at Shop Rite...so there ya go.
11. Best television series you have ever watched?  Cla and I are really enjoying Larkrise to Candleford right now

And last but not least...the tagging!

Katherine, Elia, Meghan, Rebecca, Jessica, and Allison

And your questions:

1.  What is your earliest memory?
2. What is the last thing that made you laugh?
3. your favorite nut?
4. Your favorite candy?
5. What is your dream vacation?
6  Favorite childhood toy?
7. Most embarrassing moment you are willing to share on your blog?
8. What are you most proud of?
9. If you could have a house cleaner or a personal chef which would you choose?
10. Favorite season and why?
11. Most influential book you have read?

Days Like Today

You know those days......When you have some unpleasant sort of task to do. Like make 42 billion phone calls to doctor offices and insurance companies....

The sort of things that should take ten minutes but end up taking 3 or 4 hours....

The sort of tasks that when you finally finish and lift your head up from the voice mail vortex it looks as if a tornado has run through your house...(Do you ever feel like your pictures should have a disclaimer like a box of cereal: enlarged to show texture)

Days like today are just my reality.  You too?

But even when we are entrenched in the muck...There are still gorgeous moments like this:

And lets be honest......this is why the movie Toy Story exists right??  Everyone is currently sitting zombie like and entranced......very tidy.  :)

Yarn Along - The Dang Blasted Mitten Edition!

Yup, there they are.  The Nemo mittens for Ben.  I am happy to say I am nearly finished with the second mitten.  But then I have to do the thumb on the second mitten, do the fin on both, and the face on both.  And here we are in March and it is 75 degrees out!  Ben may be the first kid to receive Easter mittens in his basket LOL...Such is life I suppose. I must say I will be happy once they are done and I can put away the double points for another several years.  Working with double points is a lot like having babies.  While you are doing it you swear you will never do it again....but once it is finished the memory of the pain, discomfort, and timmmeeeeee fades from your mind and you think, "Nahhh it is not so bad....let me do it again..." Anyway, I have made it a Lenten goal to GET IT DONE!!

As for reading.  I am reading a biography of Laura Ingalls Wilder.  I can't remember the name or author and I didn't want to waste the few moments I have here to run upstairs and get it.  So you will have to trust me when I say it is enjoyable.  Nice bedtime reading.

Say a prayer that my next Yarn Along Post is A DIFFERENT PROJECT!!!!!!!!!!!  ;)

Ohhh and for more delightful yarn along posts, or to participate yourself, check out Ginny over at Small Things

Fast Forward!

Here is my big catch up post. A post of highlights of the last month or two? How long has it been anyway??? I am sure you, my WIIDDEEE, reader audience will forgive me. We have just been living life, adjusting to new baby, getting business done, and been otherwise occupied, but there have been a few highlights. So here they are.

February 4th Beatrice was Baptized...a truly blessed event!!

And so we had a big party for her and for Ben who turned 4 on February 5th!  I can hardly believe how big of a boy he is becoming.  Here he is with Grandpa and Papa (my dad and stepdad).

Ooops out of order, but picture with the Godparents and Fr. after the baptism.

Bea-bug got her first bath (and has many others since then as well LOL).  She seems to enjoy it.  Or at least doesn't complain, but I have her in and out so quick I am not sure if she ever realizes what just happened!  After a bath her baby hair is all cute and fuzzy.  She has a little flannel head!

This is the one and only picture I have from Claudio's birthday LOL!  We had his parents and aunt over for dinner.  As you can see Ben fell asleep at the table.  I think it was a ploy to get out of having to eat my dry pork roast!

The dyamic duo...still hilarious....still adorable.....still eating potato chips.

A little update on this tiny bundle of loveliness.  She, of course, is tiny.  At 6 weeks she weighed in at 8lbs4oz I think it was.  So she is fitting right in with Ben and Anna as being a little pixie!!  She has a well check Friday so we will see how she is growing.  Also she was having some GI upset issues (from both ends...ouch...) So, the pediatrician recommended we switch her to a hypoallergenic formula and start her one some reflux meds and she seems so much more at peace now.  She is still a little reflux-y but her poops are much better and the reflux is overall a lot better and her temperament is just so much calmer and content.  She sleeps pretty well at night.  Some nights she sleeps through like a dream.  Other nights she is up at 3:30.  No idea what the difference is between the two nights.  Overall she is just adorable and sweet.  She smiles for me basically whenever I look at her!!

After our very mild winter we are having a March heatwave it seems with temps in the 70s and 80s.  So the kids were in shorts and playing in the little wading pool!  It is nice to be able to get out, air out the house, suck in some vitamin D.  But so much warmth so early...eeeek!  I must admit I don't love it.  Hot from March through October is not my idea of wonderful.  Just too much heat.  And the worst part is the mosquitoes are already out.  They were a bit of a plague last summer.  Literally swarming and eating us alive.  So between the mild winter and the hot spring I am sure it is going to be a very buggy summer.
I am quietly still praying for one blizzard before summer!

And silly Annabella who asked me to take her picture.  But she wanted to see it on the camera before it was taken.  She doesnt get the progression of things I guess.  So she made this sad face.  All of the kids are getting over a cold (including Beatrice).  I am hoping it is the last one!  Anna is doing well.  Just plugging along.  A few weeks away from starting a second tube weaning.  She didn't do great the first time.  She wound up losing some weight after a month of illnesses and a new baby.  So she was back on all night feeds for a few months to get her bulked back up.  I am praying for better results this time.

Feeding Tube Awareness Week

This week is the second annual Feeding Tube Awareness Week and I thought it would make a good time for some updates about Anna's health and to answer some frequently asked questions about tube feedings and Gtubes.

When Anna first started her tube feeding she got an NG tube which means it went from her nose (Nasal) to her stomach (Gastric).  Other than this sort of tube just looking kind of awful taped to a baby's face it also required a lot of maintenance to keep healthy and even then, with an active toddler, we got to the point where we were having to reinsert the tube several times a week and were having a lot of issues overnight during her feeds.  In addition, because it goes down the throat, Anna was having more issues with reflux, gagging, vomiting, and eating....things the tube was supposed to be helping.

So in the spring we decided, along with her medical team, to switch her over to a G Tube.  This tube goes directly into her stomach via a small valve called a button.  It looks pretty much like the valve you would use to blow up a beach ball.  On the other side of the valve, just inside her stomach, is a small balloon filled with water and this is what keeps the tube in place and from falling out.  Above you can see her hooked up to her feeding (the red in the extension is tylenol this pic was taken at the hospital the day after she had surgery to place the tube..so she was still on pain meds). 

Switching to a Gtube was a great decision for us.  It requires almost no maintenance, it is much more sturdy...meaning very little risk of it coming out just with normal playing, no one knows it is there unless they happen to see Anna without her shirt on, hooking up her feeding is much quicker.  And as we go along this journey with Anna it is likely she will have her tube for longer than originally thought so while it required surgery to place it and another stay at the hospital it is worth it for her comfort long term.

Some questions I am often asked:

How long will Anna have to have her tube?

We really don't know.  It just depends on her progress and her ability to avoid setbacks.  December was a really rough month for her with a cold, a virus, and a stomach bug...then Christmas and very soon after a new baby.  So we had a pretty hefty setback.  She lost 6oz. And where she was down to only 3hr feeds overnight she is back up to 7hr feeds now.  And so the weaning process has to somewhat start over now.  The criteria for her to get her tube out is to maintain her weight at around the 5th percentile, without supplemental tube feedings for at least 6 months.  So far she has been unable to do this.

6oz??  That is nothing....but she looks so healthy!!

This is one of the most common things I hear and I admit it frustrates me.  People don't understand that with small kids even 6oz is a lot.  Just to give you an example.  At her last weigh-in in November she had finally reached about the 4th percentile for her weight.  She was back on the chart.  With a loss of 6oz she was back below the chart (so now below 1%) and relabeled as "severely underweight".  And yes, she looks great....I personally thing she is stunningly beautiful.  But don't let her chubby cheeks fool you.  Children her age are supposed to have a good proportion of fat on their bodies.  They need it to grow and their brains need it to develop.  Anna has very little fat on her body and unless you see her parading around naked you would never know that.  In addition, whatever weight she has gained was with the assistance of her tube feeds.  Without those extra calories she has yet to come close to being able to maintain her weight.  And THAT is the concern.  She must be able to maintain her weight ON HER OWN.

Does the tube bother her?

Not really.  In fact I think she may be a little upset once it is taken out because it just has become such a part of who she is.  She occasionally gets something called granulation tissue around her stoma.  This is basically an overgrowth of scar tissue and it is the never ending plague of tubies.  We have medicines to treat it with that usually keep it from getting too out of hand, but the granulation does sometimes get uncomfortable for her.  When we set up her feedings at bedtime we ask her to show us her tubie and she lifts up her shirt so we can plug her in.  So she knows it is there for sure and as I said it is just a part of her at this point. I doubt she remembers not having it.

Can she go swimming? 

Yes.  There is no open wound around her tube or anything.  It heals in the same way a hole in your ear for an earring would heal.  And the tube itself is sealed with a valve that is only unlocked by the extension used to plug her in for her feeds.

Is she sick? Why does she even NEED a feeding tube??

No, Anna is not sick.  In fact if you don't see her bare stomach where her tube is I doubt you would ever know there was anything wrong with her or what she has been through.  Because she had an obstruction in her small intestine (Annular Pancreas) for the first year of her life a lot of things happened.  1. Anna never learned to eat properly and developed food aversions and negative behavior around food due to discomfort when eating  2.  Anna has silent reflux  3.  Anna's stomach was distended from constantly having food in it that was not passing through in the normal amount of time.  This left her stomach stretched out and out of shape and even though the obstruction is corrected her stomach still doesn't empty properly.  So, in simple terms, Anna doesn't know how to eat enough and her body doesn't know how to give her queues for hunger as well as normal.  All of these things will hopefully continue to improve with time to heal and learn (a lot of these things are learned skills that most kids learn from birth....so Anna is a little behind in this area).  Until that is all worked out she has trouble eating enough to maintain her weight and is labelled as Failure to Thrive.

These days Anna is just pretty busy being a big sister, creating messes, and charming all who come in contact with her.

There Was a Little Girl.....

...who had a little curl
Right in the middle of her forehead,
And when she was good, she was very, very good,
But when she was bad she was horrid.
She stood on her head, on her little trundle bed,
With nobody by for to hinder;
She screamed and she squalled, she yelled and she bawled,
And drummed her little heels against the winder. Her mother heard the noise, and thought it was the boys
Playing in the empty attic,
She rushed upstairs, and caught her unawares,
And spanked her, most emphatic.

I am certain these words were written for my Annabella.  It is her so exactly!!

I have to be honest and say that with the birth of little Beatrice I have been mourning in a sense.  Mourning the loss of my "little" Anna, as I often referred to her.

This tiny little pixie who was so sick and we had no idea, who has truly suffered the last year and a half, who has shown amazing bravery and resiliency, who we cried for and worried about, who grayed our hair and made us laugh, who brought us down paths we never thought we would travel.  She was our baby who required such intense attention, care, and energy.

And with absolute suddenness I have realized she is no longer that tiny, frail, little baby.  She is downright BIG!!  She is nearly as tall as her 4yr old brother, and her hands and feet seem enormous, she talks to me, she no longer fits easily into my arms.......she is no longer my baby.