Ad Silvam Ibimus

Feeding Tube Awareness Week

2012-02-08T11:53:00.000-05:00

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.....

2012-01-27T06:57:00.000-05:00

...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.

At Last....Born January 17th

2012-01-26T20:28:00.000-05:00

Our sweet and beautiful Beatrice Rose was born at 2:02PM on January 17th. 7lbs2oz. She shares a birthday with my dad! And my birthday was the next day on the 18th.

I want to write down details about labor and delivery so that I will have it here to look back at.

Her due date was Sunday the 15th and I went into to see the OB on the 16th. My fluid had been running high and the OB thought it was better off to deliver than continue on feeling miserable. I hopped on the option to be induced. She was able to get me scheduled for that night.

We went in around 8pm and got all settled in and set up. At around 3am I woke up in labor and the contractions quickly became quite intense. I thought for sure the baby would be born in an hour or two....just like it was with Anna. But as they wheeled me into labor and delivery my water broke. It was the most incredible feeling of RELIEF LOL!! The fluid was putting so much pressure on every part of my body that it was just incredible! With all that pressure gone the contractions slowed down a lot and decreased in intensity and from there labor was QUITE slow, but steady. Other than a few times when her heart rate dropped the labor was uneventful and she was born with just a push or two at 2:02PM.

She seems so tiny and dainty! She has been a mostly content and sweet baby.....not as ridiculously easy as Ben, but generally more content than Anna was.

Ben and Anna love her and want to consume her most of the time. Both have been pretty good and well adjusted with the baby in terms of their own behavior. Anna definitely is needing more snuggling and loving....and Ben will do silly baby talk now and again. But all pretty minor.

She is definitely a sweet and lovely addition to our little family!

Anyday Now...

2012-01-13T10:15:00.001-05:00

Got this extraordinary picture of the baby yesterday at the OB. I think you can even see her eyelashes! So perfectly formed.

Anyday now we should be holding her (and saying, "Oh my gosh she looks just like her picture!")

Hmmmm, should I be concerned?

2012-01-13T06:20:00.000-05:00

I mean the likeness is uncanny, no?

39 Weeks....

2012-01-12T09:18:00.001-05:00

I realized at 39 weeks that not one single picture had been taken of my growing tummy. I have several of Ben and Anna's pregnancies. So Cla quickly snapped these two pics. I truly had no idea how enormous I looked LOL....hopefully the baby will be here soon! Sunday is my due date.

Yarn Along - Nemo Mittens and Dishcloths

2012-01-04T09:14:00.000-05:00

Finally jumping in to join Ginny in her Yarn Along again!

I have been working on a pair of Nemo/clownfish mittens for Ben. Almost done with the first mitten. Just working on the thumb. Each mitten also requires a fin and a face, but I think I will wait and finish the second mitten and then do both mittens at the same time. Whenever I take this out to work on Ben asks, "are you knitting just as fast as you can??" LOL....I tell him yes, but I am just a ridiculously slow knitter and me and dpns......well, let's just say, I am not all too fond of them! Notice I didn't take a close up LOL....I am a sloppy knitter when it comes to the dpns. And normally I would say practice makes perfect, but I would prefer no more dpns and to just leave it at that! LOL of course I have promised my husband a pair of fingerless mits and after searching high and low for a pattern that was not done on dpns I have resigned myself to one more project in the round.

The project with the blue yarn is just a very simple dishcloth. I have always wanted to do a dishcloth and just never did, but I am LOVING this pattern. It can truly be done without any thought and works up super quick and can be picked up and put down easily without losing your place. It is just an excellent sort of thing to have lying around to do while you are waiting for water to boil, or computer to boot up, or pictures to load up, or while you supervise kids in the bath etc..I am using this pattern.

Also, wanted to show off my knew knitting accessories. I got the orange knitting bag and the red and black needle organizer for Christmas. The knitting bag is humongous and PERFECT. It holds ALL of my knitting supplies...a lot of my spare yarn. And this freed up an entire shelf in my kitchen which now can be used for something else. And in a tiny house with virtually no storage that is of momentous excitement!! I used to keep my projects in a pocketless tote bag and I would have needles swimming around getting stuck in yarn and pulling apart the balls. My patterns would get all wrinkled and scrunched. I could never find my scissors or my place markers or my tape measure. Those days are gone! I have complete knitting organization!!

As for what I am reading. I HAD been reading The Wilder Life about a woman's (the author) interest in and adventures in the world of Laura Ingalls Wilder. I was really enjoying it too. But I got my copy from the library and because it has been reserved it was only a two week loan. I read even slower than I knit and I read only before going to bed. So after two weeks I was only halfway through and had to return it. The reserve list is a mile long. So I will see if I can get back on it but it might be another 6 months before I can finish this book. So last night I picked up Alice's Adventures in Wonderland. It has been on my shelf for decades but I have never read it. And it is just the sort of largeish print, easy reading I like before bed.

And what's a morning without a quick pic of the kiddies?? This is the face Ben made when I asked him to give me a "real good smile". LOL This kid totally cracks me up lately. Last night I was getting ready to leave for my knitting class. And so he was trying to convince Daddy that they needed to take baths (Daddy just doesn't do baths unless absolutely necessary). So he said, "Ohh, I was told we need to take baths tonight!" And so Cla asked, "Oh? Who told you that?" and Ben points to our nativity scene and says, "Alllllll these WONDERFUL saints told me that we need to take a bath!" LOL....can't argue with that can ya?? Cleanliness is next to Godliness they say!

And Little Miss Bella Bean who had her 4th straight night of vomiting made a quick appearance for some yogurt and mint tea before asking to go take a nap. The poor thing is just totally worn out from night after night of sickness. So please keep praying for this little soul who endures these things with great spirit, but, like everyone, has her limits.

Preparing for Baby and How This Improves Fine Motor Skills

2012-01-03T09:48:00.001-05:00

We have slowly been pulling out all of the baby paraphernalia we have tucked away in the scant storage areas around the house. Not so much so we are prepared, but more to be sure we could actually locate everything!

Both kids have been very interested in all of the items...wanting to sit in bouncy chairs, to explore long ago tucked away toys they had forgotten, but most of all they are just loving this little activity mat. They will lie on it together and separately and play with all the accessories. Ben will use it as an ocean for his Playmobil Pirate Ship and Anna mostly likes to look in the mirror.

But Ben in particular is really enjoying removing each of the toys from their hook, rearranging them, and reattaching them again. It requires quiet concentration and dexterity and is giving him some excellent fine motor skills exercise which he could definitely use!

I pray that once the baby comes they are still as interested to play....by interacting with the baby and her toys (as opposed to being possessive about the toys).

I am still finding Ben's love for the space in front of our heating vent irresistibly adorable. Whenever he hears the heat start blowing he gathers up his lovies and whatever else he wants and runs for the vent.

Today it is the beloved Playmobil ship (he just got this from my inlaws for Christmas and it has been played with for many hours already) and a box of animal crackers. What more could a boy want?? He is looking away because he told me he didn't "need" his picture taken today.

Anna is not around to join him today. She went down for a nap very early after another rough night of vomiting. We are taking her to the pediatrician today. Prayers for healing and wellness in the house and especially for little Anna.

Where We Have Been...

2012-01-02T19:24:00.001-05:00

Oy, what a month it has been...and it seems to be continuing...

This is the scene from this morning: lounging with best lovies, PBS playing cartoons, completely zonked.

The kids have just been stricken by one bug after another after another... They are currently suffering through a really strange and somewhat horrendous stomach bug. This after colds, sinus infections, virus, double ear infections, and tooth extraction!

We could definitely use some prayers here for wellness!

Thankfully we had a short reprieve between ear infections and stomach bugs to head down to Virgninia to spend Christmas with my dad and stepmom.

For some reason we never take many pictures while down there but I thought these pics of the kids very patiently waiting to open gifts were just too cute.

They were all wide eyed and amazed when they came upstairs to see all the gifts put out under the tree. But they just sat and waited until everyone was ready.

I love Ben's little pile of lovies there (he totes around a cat, a doll, a pillow, and a really soft blanket with a bunny rabbit in the corner)

Even little miss compulsive disaster maker didn't dare touch until it was time LOL...

I think this is the only pic I got of an open present. I just love that little face. Both kids got lots of new toys that they are very excited about. And we had a lovely time in Virginia.Now we are *tick tock* waiting for the new baby to come! Two weeks to my due date and I am praying praying that she is not super late like her sister!!

Advent Plans: St. Nicholas Day

2011-12-05T22:05:00.000-05:00

Tomorrow is the Feast of St. Nicholas. Rather than try to explain the story of St. Nicholas and the traditions around his feast day I will share this link to the St. Nicholas Center. But just briefly he is known for helping the needy and leaving small gifts (often gold coins) for them in their shoes or stockings.

This year posed a few challenges with Ben's food allergies. First we started last year making St. Nicholas Cocoa. The recipe calls for cocoa mix, non dairy creamer (which does contain dairy), and powdered milk. All ingredients off limits for Benjamin. But I was determined to tweak the recipe and come up with something.

First I found this product called DariFree. It is a dairy free (also gluten free) powder I got in original flavor. I figured I would use this to replace the powdered milk.

Then I figured I would have to make my own cocoa mix somehow because all the mixes I have had had dairy in them. On a whim I figured let me check out the Ghirardelli brand cocoa because their chocolate chips are the only dairy free ones I could find. Sure enough it was dairy free!! This made my life a lot easier.

So we left out any replacement for the non dairy creamer assuming that the DariFree would cover all bases being creamier and richer than a regular powdered milk.

We tested it out and it is delicious. You would never know any tampering was done. So it is ready for a special warm treat tomorrow morning with breakfast!

We also have the kids put their shoes by the door so St. Nicholas could put treats in their shoes while they slept. Traditionally chocolate gold coins go in the shoes, but again it would be hard to find a dairy free gold coin. So I left out the chocolate this year and went with candy canes and small twizzlers to represent St. Nicholas's crozier.

Their little gifts included a St. Nicholas DVD I picked up at a homeschool conference this summer, The Three Wisemen, and this adorable St. Nicholas and Angel set by Playmobil.

Siblings..

2011-12-02T13:27:00.000-05:00

Every morning since it has gotten cold the kids gather what ever cuddly things they can grab, a cup of orange juice, and a bunch of toys and sit in this corner where the heating vent is (they are sitting right up against it so you can't see it).

Personal space rarely means anything to them...

Ownership is defined by possession..

Ben is in charge.........and Anna is fine with that

I have to wonder how the new baby will fit into this relationship.

Wordless Wednesday: Morning Snuggles

2011-11-30T06:31:00.000-05:00

Advent Plans: Nativity Scene

2011-11-27T21:16:00.000-05:00

We have a family tradition of putting up our Nativity scene on the first Sunday of Advent. Before we had kids the scene took up two walls of our dining room and included rivers, lakes, and mountains. We would spend HOURS getting things just how we wanted with painstaking care....

Those days are gone. We have neither the space or the time for such endeavors. But we are still quite pleased with the outcome....In the smaller space Bethlehem is a bustling town!

Our set has been accumulating since before my inlaws came to this country. Some of the pieces are old Italian pieces. But the bulk of our set is Fontanini. They are made of a strong resin, so not too breakable, but still are beautifully made.

The stable is always our center piece of course. And right now it is basically bare except for a cow and donkey. I always imagine that the large building next to the stable is inn where there was no room for Mary and Joseph.

All of the people are doing their jobs, fulfilling their vocations, but still in hopeful expectation or the coming of their messiah.

At the end of the table are the Roman soldiers giving their decree for the census and Mary and Joseph heading out on their journey. Each week until Christmas they will move closer to the stable where Jesus Christ will be born.

Advent Plans: Jesse Tree

2011-11-26T13:57:00.000-05:00

We are going to try a Jesse Tree this Advent. I think it is just another beautiful way to bring the liturgical year to life. Following Jesus's family tree through the scriptures.

I used the ornament template from here: Jesse Tree

Since we don't have a color printer I colored them with some colored pencils. Each ornament gives the date for Advent when it will be used, the topic, and the reference to what scripture reading.

I would really have loved to buy a kit like this. I think the symbols would be more meaningful and approachable to my small kids, but it just isn't in the budget this year. There is always next year.

After coloring each ornament I glued the sheets to a piece of purple felt and hung it to dry. Then I just cut out the circles, punched a hole at the top of each, tied a piece of purple yarn and we are set to go.

I don't think this could possibly be a worse picture, but you will get the idea. This is the "tree". Cla and Ben found this large branch outside with plenty of places to hang ornaments. I filled a vase with gravel and stuck the branch in.

Thanksgiving Traditions are Born...

2011-11-24T09:39:00.000-05:00

Breakfast in front of the Macy's Thanksgiving Day Parade. They are enjoying it for sure, but I must say we are a little bothered by the focus on promoting NBC programming.....you know like more face time for Al Roker than for the Mickey Mouse balloon.

Announcing....the Ad Silvam Amazon Store

2011-11-23T12:45:00.000-05:00

Jamie and I are happy to announce our own Amazon store for the blog!

We're assembling a heap of toys, books, and crafts that our kids have fallen in love with and that we've found to be most effective in nurturing a childhood rich in imagination, creativity, and a spirit of exploration: all in keeping with our theme "To the woods we will go!" Here's the link:

The Ad Silvam Store

We've also put in a sidebar to the right with some selections from our catalog. Hope you enjoy the store and can find some good ideas for your own families.

Whose The Turkey?!

2011-11-17T16:20:00.000-05:00

We haven't had a good "Ben is now dairy free" update here for a while. So thought it was about time.

Ben had an appt with his Nutritionist today (we hadn't seen her since the summer before we took Ben off dairy) and I felt like this would be the weigh-in heard around the world!!! We feel like his eating has improved by leaps and bounds, but I had this little fear that maybe we were making more of it then it was and seeing things that weren't really there. I mean he certainly doesn't look any fatter. He still looks like he is wearing his big brother's clothes LOL. So I fretted and fretted....has he lost weight, is he at least maintaining his weight, did we make the right decisions??

Ben and I made handprint turkeys. He loved to be able to have paint on his hands. And no idea what the eye poking is about! That is what he did when i said to smile!

So, I was VERY pleased when i was told he had gained a POUND since early September! An entire P.O.U.N.D.!!!! This kid has not gained a POUND in any measurable amount of time in well over a year!! And this was with NOO calorie boosting. So nothing artificial about it.....just good plain eating more food!!

now there is that goofy smile I know and love!

There is still some concern about his height. He is short, which isn't a big deal in itself. The issue is that he has had NO "linear growth" since we started seeing the nutritionist...literally not even a centimeter. So, the hope is that he just needs some catch up calories. In other words he lives approximately two years of his life starving and malnourished. He is eating an appropriate amount of calories for his age/size, but he has so much to make up. So we were given some samples of allergen free high calorie shakes and juices. We are going to work on getting as many calories into him a day as we can and see if that helps kick start the linear growth. If not then we will be referred to pediatric endocrinologist to make sure there is nothing going in that department.

finished product.

So overall awesome news. Poor little Benjamin has been suffering from the cold that just won't let go. Took him to the pediatrician today and the doc thinks he has a sinus infection. He got a Rx and hopefully he will be all better in a jiffy now!

Halloweeeeeen/All Saints Catch Up

2011-11-17T06:24:00.001-05:00

I am dreadfully behind in posts. No good excuse other than just been quietly plugging along, not in the mood to take care of anything but what must be done, plugging along through my third trimester.

So I figured let's at least finish up October and move on! We did have a nice Halloween. The first year that Ben seemed to get the gist of it and partake enthusiastically. Ben dressed as his beloved Kangaroo and Anna as a lion. I am not enough "into" the Halloween spirit to spend money or worry about costumes or what they WANT to be. These were both handmedowns from various sources. Luckily Ben fell in love with this kangaroo immediately. As for Anna, the day before Halloween I dug out this lion costume and we all ohhhed and ahhhhed over it and so she was happy to be a lion. I would imagine next year Ben will be a kangaroo again and again the year after that etc. Anna we will see what we get in the handmedowns this year!

Ben's "smile"

yes, Anna is already eating a lollipop.

I was a little worried how things would go. Both kids were in a "just feed me and put me to bed" sort of mood. We had had a long appointment at CHOP that afternoon (including bloodwork for Anna) and I feared they had reached their limit of human interaction.

but they perked up.

and we are off! We did just one block..that is enough for preschoolers.

It was the first of many Halloweens that we had to deal with Ben's allergies. I was hopeful that there would be enough non-chocolate candy that it wouldn't be a big deal, but he got almost exclusively chocolate! So I ran out and bought some safe candy and just traded out the things he couldn't have. He never knew the difference and hopefully once he is old enough to know the difference he will be able to understand.

I got just a few pictures from all saints. I am all for the easy costume. So Ben was St. Juan Diego and Anna was Our Lady of Guadalupe and I think I spent a total of maybe 20 minutes making the costumes.

love Bens crooked smile here!

Anna was pretty much non-compliant about wearing her veil AND getting a picture. This sweet girl was trying to help get her to stand still LOL

watching the other children have their turns. Each child had a turn to go up on the platform and give a description of what saint they were dressed as.

And the ham as himself.

Yarn Along - Finished Owl Sweater

2011-11-16T08:18:00.000-05:00

At last at last!!! I finished Anna's owl sweater! I am VERY pleased with how it turned out (even with a few biggish mistakes....specifically two glaring ones....I will let you find them yourself though) and so is Anna! This was really my first "big" knitting project.

Anyway, I actually blocked this project. I had never blocked before, but I am a ridiculously tight knitter and even though I made this in a size 4 it looked like it would barely fit my petite size 2 Annabella. The blocking definitely helped. I will probably get two years of wear out of this sweater...or at LEAST through the Spring.

Finished with all the buttons attached and everything!

My little sweetie was very happy to try on her "sweater owl" this morning...and I doubt I will be able to tear it off her tonight.

Look at that little pumpkin with her morning bed hair!! Ohhh she is SO squeezable!

And a quick peak at the back of the sweater.

And Mr. Mouth (also known as Ben) couldn't let Anna get all the attention! Fear not little Ben up next on the needles are Nemo mittens for you!

As for what I am reading these days. I did finally finish the Narnia series. And I took off the shelf a biography of St. Therese of Liseux. I was a bit skeptical that it would meet my bedtime reading criteria of being engaging while not causing any sweeping bursts of emotion (I am a chronic insomniac and need basically mellow reading material at bed). But so far it has been very enjoyable. I have read a lot of St. Therese stuff many years ago. So I know the story generally, but always good to get a refresher. The book isn't long, but it has small type so it should take me well into the next millenium before I finish it ;)

For more Yarn Along posts check out the link: Yarn Along

Wordless Wednesday - I am in love

2011-11-02T08:51:00.000-04:00

A Haloween Tradition is Born

2011-10-31T09:19:00.000-04:00

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% compliant...so 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!

Yarn Along

2011-10-26T10:33:00.000-04:00

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!

What a Year!

2011-10-20T11:17:00.000-04:00

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

2011-10-19T17:36:00.000-04:00

A Day in Day Hospital (Better Late Than Never)

2011-10-19T14:33:00.000-04:00

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

2011-10-03T11:37:00.000-04:00

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

2011-09-13T10:01:00.000-04:00

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...

2011-09-10T09:48:00.000-04:00

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

2011-09-07T10:31:00.000-04:00

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

2011-09-06T10:31:00.000-04:00

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..

2011-09-01T07:56:00.000-04:00

Natural Disasters...

2011-08-29T22:06:00.000-04:00

Sorry once again for the absence. Just been busy busy busy......mostly with natural disasters!!

Let's just say a transformer exploded on our block about two weeks ago leaving us without power. Then we left to visit my dad and stepmom in MINERAL, Virginia. That town sound familiar? It was the epicenter of the recent 6.0 earthquake in VA.....so broken glass, messes, no power, aftershocks. We come home to be struck by Hurricane Irene including tornado warnings, major flooding in our town, and once again no power for a few days.

The poor kids have barely slept in their own beds in the last week and a half.....we are wondering what next: plague of locusts or will the small mountain we live on erupt into a volcano??? We could definitely use some quiet peaceful times!

Below are just the pics from our Hurricane experience. We let the kids play outside when it first started raining and getting a little windy. You have to love Anna's self chosen get up!

On Sunday when the sun came out and things had mostly calmed down we decided to go for a walk downtown. I wanted to see the Rancocas Creek....thinking it would be pretty high after all that rain. LOL....uhhh let's just say it was far worse than a little high. As we approached what used to be a small creek I saw glimmering water everywhere as if we were coming up to a large lake. The pictures don't do it justice and this was before the creek crested. Now major roads around town are closed as well. We were shocked. I have never seen anything like this in person.

here the water is coming right up to the footbridge.

just passed that black truck is all water..

this cracked me up. A picnic bench poking out of the water. This is around the municipal buildings and police station/municipal court.

You can hear how windy it still was and the creek that now looks like a lake. This is the parking lot for the county offices and court and downtown shopping area.

Ben's Update

2011-08-16T15:10:00.000-04:00

I have been waiting for the results of Ben's tests before I wrote an update.

Ben did great on the day of the procedure. He was definitely brave!! He got scared and cried at the things that were legitimately scary and otherwise he was wary but very brave. My shy boy even chatted and joked with the nurses. We were so proud of him. He earned himself a new Thomas train. He chose Gordon.

I can never resist taking a picture of them before they wake.

The only snaffoo was getting an IV in him. He was very dehydrated and they told us that they were about to cancel the procedure because they had tried several times and just couldn't get a good IV going. Just from counting the bruises left from the IVs the next day I counted at least 10 tries!! Thank God he was already asleep at this point and had no idea what was going on.

the first thing he said when he woke was, "can you take my bandaid off?"

What got the results yesterday and all of his biopsies came back normal. Some of his bloodwork came back off. Specifically his liver function. Our GI is on vacation so we will talk to him about this later this week or next week.

That last bit of news we got today was that Ben and Anna will be able to start the feeding therapy program at CHOP on Sept. 20th instead of having to wait til November to start. This is a huge relief for me. I had visions of an 8M pregnant me lugging through littles through CHOP everyday and then by the time we were done with the therapy program it would be Christmas and then the baby is due. So when would we have been able to instill no eating routines and systems at home. This way we will have plenty of adjustment time etc.

Wordless Wednesday - The "What You Talkin About Willis" Edition

2011-08-16T05:41:00.001-04:00

I Love This!

2011-08-13T18:04:00.000-04:00

So thought I would share!

I found this cute iron on decal at Joann's for a few dollars. And I had this plain white turtle neck from some handmedowns. And voila...a boring shirt is now adorable and perfect for my owl loving Anna!! For just a couple of dollars.

My fear, of course, is that the decal will come right off either from washing or by the picking by Anna herself!

You Think........

2011-08-12T08:56:00.000-04:00

It's time to start potty training????

Yarn Along

2011-08-10T08:11:00.000-04:00

Ben counting the buttons while I snapped my pictures....

Well I finally got around to sewing on some buttons and weaving in my ends on my Baby Surprise sweater. I made this for Anna, but it is ridiculously too small on her....so looks like Beatrice has a first birthday present awaiting her before she is even born. (plan to make Anna and Beatrice matching sweaters with cabled owls on the yoke, but it is a huge endeavor for me....perhaps I should just make a bigger BSJ for Anna to match this one?? LOL... ahhhh *sigh*)

As for my Stella Pixie hat....I would have finished the body of it by now except I had a major, "*gasp* I lost stitches off the end of my needle and I have no idea how to fix this" fiasco on Monday and had to wait until my Tuesday night knitting class to get help fixing it. But just a few more rows of the body then just the neck strap and buttonhole and whatever finishing odds and ends.

Still working through the Narnia series. I am on Voyage of the Dawntreader now...at Claudio's suggestion I am reading them in the British order (which is the order they were written) as opposed to the American order (which is chronological order).

For more yarn along posts check out Ginny's lovely blog: here

Wordless Wednesday

2011-08-10T06:54:00.001-04:00

Bouncing Over Our Fears

2011-08-09T06:18:00.003-04:00

A week or so ago Claudio's company held a picnic for everyone and they had a BIG bouncy castle. Anyone who knows Ben knows nothing pleased him more than bouncing and jumping and tumbling, but they also know nothing DISpleases him more than new things he has never encountered before.

So I wondered what his reaction would be to this big castle of bouncing delight! Well at first he refused to go in, but Anna was interested and wanted to go. When he saw she didn't immediately fall apart he was willing to go in. But as you can see above they literally just sat side by side along the edge watching. In their defense there were a bunch of older kids in there at this time rough housing. Kids that were way too old for bouncy castles if you ask me.

Ben, loosens up ever so slightly by LOUNGING as opposed to sitting up LOL...

Then I had the bright idea to move to one of the windows across the castle to watch from the other side. I knew he would want to be as close to me as possible and so would toss his fear aside in order to accomplish this. And I was right. I peeked in the far window and he got up and scurried over to me....so I ran to the next window and he scurried there and so on and so on. Quickly he realized, "Hey.....this is fun and bouncy and just my sort of thing!!" And that was it. He was a boy in love!!

I was so happy for him because I knew that if he could just conquer his fear that he would absolutely LOVE to bounce. And it took just moments before he was literally bouncing from one side to the other laughing hysterically and chatting with the other young kids (the older kids were kicked out).

And of course Anna must do whatever Ben is doing so she rejoined him and they both had a blast. Nothing is cuter to me than Anna's little proto-jumps. She is just just learning how to jump and it is more of a gallop sort of thing right now.

And Ben will be facing another of he greatest fears on Wednesday. He is scheduled for an endoscopy/sigmoidoscopy with biopsy at CHOP. Ben is very fearful of doctors...even just a stethoscope leaves him trembling. So IVs, and sedation, and *gulp* an enema will definitely leave him quite shaken. I truly understand his fear as I suffered many many years with a doctor phobia (which I have by and large gotten over after a little therapy and a lot of hand holding by Claudio). So please pray for this little, sweet soul that he can be brave. He is such a sensitive little guy which is what has ME worried more about this little procedure for him than I think I ever worried about Anna's bigger procedures...she is just such a tough trooper and she would just go with the flow even if not enjoying it. Pray that we can just bounce through this one as well!

Anna's Birthday Party

2011-08-08T10:17:00.000-04:00

Sorry for the delay in posting! I will be honest and say I have just not been in the mood!! Sometimes it takes quite sometime to get the pictures down/uploaded, videos downloaded, links found, writing, etc etc...I don't know if I am just doing things the hard way, but it can be a cumbersome task....so sometimes I avoid it.

Anyway this is the way beyond awesome cake my friend Mary decorated for me!!!! Anna has a thing for owls and this cake came out so adorable!! THANK YOU MARY!!!

The party was at my mom's house with just my side of the family since Claudio's family had a sudden death and the funeral was scheduled for the same day (we were able to go to the visitation before Anna's party).

The Three Muskateers...Ben, Anna, and their cousin Kyleigh. All with read hair! Kyleigh is 6 months younger than Ben (and almost exactly a year older than Anna). She is very tall for her age...and Ben is very short for his LOL!

These kids crack me up!

Is he screaming??? Nope...that is Ben's camera smile :)

We made the silly mistake of leaving Anna's gifts downstairs...unsupervised....with the kids..
So, they tore into them and Anna found this owl pillow from Grandpa Bob and Grandma Judi....and she was QUITE pleased with it!!

And the kids had some fun in the pool. It was SOOO hot and sunny that day...it was hard to stay out there though.

And at the end of the day little Anna was exhausted and passed out asleep before we even got in the car to go home....slept the whole way home and all night. Happy Birthday my little pixie!!

Happy 2nd Birthday to My Pixie!!

2011-07-29T09:34:00.001-04:00

I meant to get this post up yesterday on Anna's ACTUAL birthday but time got away from me.

But yes it is true my itty bitty baby was 2 yesterday!!

disclaimer: despite the fact that I have a degree in music age, children, pregnancy, has made my singing voice a most hideous thing to behold!

Anna did a great job opening her gifts. She has seemed to get the idea of "birthday" and all that involves way earlier than Ben!

a little holtiger kitty cat.

a new Jim Weiss CD of fairy tales (I highly recommend his CDs. The kids LOVE to listen to the animal stories while playing)

some new books!! This pleases me as I am very tired of reading Ping and Blueberries for Sal that they got at Easter!

I am grateful that my kids are such book lovers!

A Mellisa and Doug magnetic paper doll set (not actually paper, but best I can describe it)

We had a special breakfast of chocolate milk and ~~cupcakes~~ banana bread muffins with icing. Interestingly neither kid would eat their iced muffin, but since had eaten several with no icing. These are bizarro kids LOL..

Anna did lick her muffin once LOL

Ohhh and the gift I forgot to wrap...a much coveted new DVD of Charlie and Lola!! Those of you with kids...if you have never seen this show check it out. There are full episodes on youtube! It is by far a favorite for my kids.

Forget cupcakes...I would rather eat my new DVD!!!

So my dear Anna is another year older. It has been a wild and crazy ride with her from the beginning, but this year especially she has taught the whole family so much. She is tough and brave and strong beyond her years. She is my snuggler. And she is my mischief maker. She remembers to stop and smell the flowers. She is hysterically funny and too cute for words. And we just love her to tiny itty bitty bits!! God Bless and Happy Birthday my dear Anna!!

Some Garden Projects

2011-07-21T14:23:00.000-04:00

I didn't think to take any before or during shots, but here are the outcomes:

Our first and experimental jar of Kosher style pickled green tomatos. We have no idea how long we need to let them pickle. So if you know please share!

And Daddy's yummy Mint Tea. The kids go NUTS for this stuff! The way we make it is we snip several stems from the mint (Cla likes to use spearmint for the tea). We put them in a large bowl and cover with water. Then you squeeze/massage/crush the mint in the water. Then you strain it into a pitcher and repeat (with the same mint) one or two more times. Add a little sugar (or I bet honey would be even better) and you have tea.

Ben was the official tea stirrer...

And Anna was the official ice cube "blooper". (bloop being the sound a heavy object makes when being dropped into water of course)

Then take many refreshing sips.....

The Very Hungry Caterpillar

2011-07-21T06:32:00.001-04:00

Yesterday Ben and I read the Very Hungry Caterpillar and then painted our own caterpillars out of an old egg carton.

Ben chose to paint his with just red paint and I went for green and red.

This is the look I got when asking for a smile. Got to love a 3yr old!

The finished product. I found it interesting that Ben seemed to only paint the parts he could see/that were facing him.

Later in the day Anna ate the google eyes off the caterpillars. So they will need a little reconstructive surgery tomorrow and they are now safely on the mantle out of reach of her destructive hands!

A Makeshift Birthday Message

2011-07-20T18:29:00.000-04:00

Yarn Along

2011-07-20T12:10:00.000-04:00

Taking part in Ginny's Yarn Along again this week. I am just about finished with my BSJ. Just have to weave in ends and sew on buttons. I should have gotten a picture of Anna WEARING it, but by the time I thought of it she was already napping. So, maybe next week.

Yesterday I started the Stella Pixie hat for the new baby. The yarn color looks way off in the picture. It is actually a light green with flecks of blue, purple, and pink in it. So far I have casted on and done one row. So at my knitting rate I should finish around the baby's 2nd bday ;)

As for reading I just got from the library (delivered for free to my door) The Story of Charlotte's Web: E. B. White's Eccentric Life in Nature and the Birth of an American Classic. I have so far read just the intro. I have to be honest and say I have never actually READ Charlotte's Web, but my kids have been loving the old cartoon movie and so it has me interested. I have put Charlotte's Web next on my bedtime reading list. I like to read very light, enjoyable things before turning off the lights at bedtime.

So my current bedtime book is Prince Caspian the second book in the Narnia series.

To check out more Yarn Along posts visit Ginny's blog for all the link ups!

I Wonder....

2011-07-20T11:45:00.001-04:00

Why I waited so long to break out the Crayola Color Wonder???!!! Markers that only work on the special Color Wonder paper!!!

This was the scene this morning....many moments of quiet coloring...

Anna is indeed wearing her raincoat...I am guessing these are the early stages of dressup play for her because she often comes to me with jackets and sweaters asking me to please put them on for her. She wore it all morning. Definitely made breakfast cleanup easier LOL

And Master Benjamin told me he didn't want to smile because he was sad. I asked him why he was sad and he said, "Because I am just trying to do something..." Well, fair enough then.

May the mess free markers reign for many months in the Salvucci household!

Daddy Tries His Own Feeding Therapy

2011-07-16T08:45:00.000-04:00

Oy! What a Week!!

2011-07-15T08:11:00.000-04:00

Well, since our anniversary never goes as planned....this year was no different. This may just look like a sweet scene between father and daughter.....but it is actually a picture of an exhausted Annabella getting comfort from daddy while waiting for her Home Healthcare Nurse to return an emergency after hours call *sigh*

The day started off with me getting sick in a public place, so in a disgusting public restroom, with two small children in tow. The two children thought it was hysterically funny to watch their mommy get sick. This was followed be an arm thrashing leg kicking temper tantrum by the boy (like full blown throw self on floor sort of tantrum....in public as well).

We all came home and took a nice long nap. Ahhh, maybe this day was getting better LOL..

Well, as Anna was getting into her crib somehow her gtube got knocked against the edge and popped out!! So now there is literally a half inch-ish open hole into her stomach. Because a stoma closes remarkably fast you have to get something in there quickly to keep it open. Claudio tried to replace the tube, but was unable to fit it back in already. We were able to get a smaller foley catheter in instead and we taped it and secured it.

After many back and forth calls to Home Healthcare we were told that we HAD TO take her to the ER immediately. So I drag her to the ER, my poor sleeping, scared, little doll. Thankfully they took us pretty quickly. But guess what the doctor said!! She said the stoma was stable and secured so there is nothing they could do there...we had done the right thing at home and to call her doc at CHOP in the am to get the tube replaced. This is of course what I had requested to do when talking to Home Healthcare. So a trip to the ER (including the bills that will come) was for nothing!! Grrr

I was able to take her into CHOP the next morning thankfully they were able to pop a new tube in with only minor trauma for Anna and they gave me a steroid cream to treat her granulation tissue which has been plaguing her.

So there is my little whine fest for the week. :)

Nobody Puts Baby In The Corner!!

2011-07-15T07:46:00.000-04:00

(and if you don't get the reference you need to brush up on your 80s movie trivia)

Wordless Wednesday

2011-07-13T06:17:00.001-04:00

My Favorite Part of the Garden

2011-07-12T06:13:00.002-04:00

Pictures aren't clear since I took them from up on the porch through the screen. But I just love my hydrangea, daisy, and black eyed susan :)

Yummy!!

2011-07-11T09:10:00.000-04:00

Anna has shown a real improvement in her eating the last few weeks. Still far from normal for her age, but she "gets" hunger finally it seems. She has more consistent "go to" foods that we can count on for her to eat when offered.

Right now she is really enjoying some plain oatmeal with brown sugar stirred in for breakfast. She won't finish a whole bowl, but close to half. And more importantly she eats it steadily, she doesn't purposefully spill it or throw it (she drips, but just because she is still working on those spoon skills) and she smiles while doing it....no whining or crying.

Thankful Thursday......The We Are Expecting Edition :)

2011-07-07T16:22:00.000-04:00

This lovely picture was taken today. We are told they are PRETTY sure it is a girl....but Ben insists it is a teddy bear and of no sex.

We have decided to put Ben and Anna in the same room so the baby can have their own, quiet room. Once the baby is old enough (a yearish?? Guess we will play it by ear) it will be switched so same sex kids are together (assuming Anna and new baby).

So Anna's room has needed some rearranging...we took out the window seat and tucked the crib in the nook there and we got Ben a real twin size bed (we are waiting for the box spring still so his mattress is currently on the floor)

And he got alphabet bedding. Ben is a total creature of habit and resists change (I suspect most 3yr olds do). So we were worried about how the transition to a different room, with a different bed, with new bedding, etc etc would go. But it has gone very smoothly and he loves his new bed and bedding. (btw yes Anna's shirt is soaking wet...the results of letting her wash her hands with no assistance)

Prayers for a healthy pregnancy appreciated!!

Yarn Along

2011-07-06T09:47:00.000-04:00

Finally catching up with Ginny's Yarn Along again! I have been working on Elizabeth Zimmerman's Baby Surprise jacket. This is the first thing I have knitted that I have really enjoyed working on! I highly recommend this pattern. I am making this sweater for Anna, but part of the sweater being a "surprise" is that it doesn't really come with options for sizing. You kind of guess and adjust needle size and yarn size. So I am HOPING this will fit Anna when all is said and done!!

As for reading I am going through the Narnia series again. I read it a number of years ago and I am not sure I even finished the series then. The kids have been enjoying the old animated version of The Lion, The Witch and The Wardrobe....so that piqued my interest again.

What are you knitting and reading??? And check out Ginny's page to see what others are working on!

btw if any of you lovely knitters out there can share with me how you get such beautiful, clear, vibrant, and detailed images of your knitting please share your tricks. I am just an awful photographer!

Our New Family Pet!

2011-07-03T08:51:00.000-04:00

Check out our adorable new hamster on the right sidebar!! Isn't he cute!! Benjamin has named him Mickey Mouse.

If you click on the center of the wheel he will run on the wheel for you and if you click anywhere else a pellet of food will drop for him to eat. And he will drink from his water and wash his face.

And we never have to clean out his cage or change his water or spend ANY money on him. Definitely the best pet ever!!!

He's a Growing Boy......

2011-07-02T20:52:00.000-04:00

Wordless Wednesdays

2011-06-29T06:19:00.000-04:00

Shiny New Floors!!

2011-06-28T07:11:00.001-04:00

Cla just put new flooring in Anna's room! It was a snap together laminate and it came out even better than we ever hoped!! The room looks like it is brand new! Her floors were the original old wood, but I had painted them white because they had been painted a dark brown when we moved in. The wood was in bad shape and the floors just always bugged Cla. Check here for the before picture.

2011-06-25T05:53:00.003-04:00

Last year my dad and stepmom got the kids an awesome inflatable pool. By the end of the summer it became apparent that these types of pools seem to last through one season and one season only. It got some holes in it that we couldn't find and the ones we could find just didn't hold the patches. And worst of all the pool would get so much dirt in it from the kids getting in and out and at least to this feeble mind I couldn't figure out a way to get it sufficiently clean (any tips??)

So my mom and stepdad got this new pool for the kids this summer. We are LOVING it. It is super deep for Anna though...she can not get in and out on her own. And Ben can just barely straddle the edge of the pool to get in and out.

Anna in a bathing suit cracks me up for some reason

Daddy brilliantly put the slide into the pool. Ben loves it. Anna went down once, went flying off the and of the slide into the water, got totally dunked under and will likely never do it again LOL! If it hadn't scared her so much it was truly awesome to see LOL....acrobatic!

You can see my cozy lounge chair in the background there where I sit and knit or read while the kids play.

It seems Benjamin doesn't really understand the purpose and use of a towel!! LOL..he got out, asked for his towel, wrapped up in it, and promptly got back in the pool.

This was the sky while the kids played. It was nice to not have the sun beating down on us. It started to downpour as soon as we got inside.

What's Bloomin?!

2011-06-24T09:50:00.000-04:00

Just a quick tour around our very small yet productive garden.

I love hydrangeas!!! And I particularly love MY hydrangeas!! The color is so vibrant and beautiful!! They are just starting to bloom. And as the summer fades the blooms stay big and healthy only they turn to a dark mauve.

My daisies are just starting to open up as well. They are another favorite of mine

These are the black eyed susans. They are just getting their buds.

We had a bumper crop of strawberries this year, but we always lose most of the berries before they are ripe to squirrels and birds. This year there was an even more aggressive blight: ANNABELLA!! In her desire to only eat weird things that you SHOULDN'T eat she literally ate every available GREEN strawberry she could find!! We got maybe two ripe ones before she took over LOL

Below the strawberries is some basil and I think chamomile and some other herbs...not sure what Cla put in there (we also have several varieties of mint, thyme, oregano...and that might be it for the herbs this year)

Tomatos are ripening!

The blueberries are just starting to get blue. Anna has eaten many of these green as well.

We have had a great crop of raspberries this year!! The best yet. The kids devour these as soon as we pick them.

More tomatos

and peppers

These are out dwarf fruit trees. There are two types of apple and a cherry and behind them I think are more tomatos and peppers and potatos.

This was our lettuce, but it has started to bolt already. This whole patch in the garden is going to be transplanted to next to our shed and then this will become more play area for the kids

Not pictures are some nasturtiums that are just starting to come up.....and I THINK Cla put in some lupine seeds too...but no idea where.

What is blooming in your garden??

Two For One Deal

2011-06-17T11:11:00.000-04:00

First a disclaimer: This post is mostly about Ben and his Feeding/Swallowing evaluation, but the only pictures I have around are of Anna. And as I have mentioned, who wants a post without pictures....so there you have it. Hope no one gets confused ;)

So Ben's evaluation was yesterday. Basically went well.....there were a few minor meltdowns about what chair to sit in while eating and who/how his yogurt would be stirred. (Part of the evaluation was watching him eat). It was informative. It is funny I leave most doctor offices annoyed at how I generally know more about what is going on then the doctor does. But I never leave CHOP feeling that way. I truly trust their expertise.

up close and personal

*taptap* anyone in there??

So they did, afterall, recommend the Day Hospital program for Ben. I went into the evaluation pretty adamant that I would not do this program with Ben, that it was more than he needed.

They made a few important points though. 1. With Ben's shyness a once or twice a week outpatient behavioral therapy program would mean that most of each session would wind up being spent re-establishing trust and a comfortable atmosphere between Ben and the therapist leaving very little time for the actual work. 2. They didn't consider Ben's eating problems to be "behavioral", but rather "learned". Based on the history I provided they felt he has had eating issues basically from birth and that his chronic constipation and eczema and diagnosed food allergies is just proof that something is not quite normal in his GI system. 3. Ben lost the two pounds he gained last month and was back down to 26lbs. He is not taking in enough calories to maintain his weight WITHOUT strictly adhering to the three Boost shakes a day (which we haven't been good about the last few weeks because we were away for a long weekend and just other things going on).

every little girl is a princess!

But the biggest factor that convinced me to go with the Day Hospital program was that they thought it BEST to have Anna and Ben go through the program TOGETHER!!! So this alleviates my worries about what I would do with Ben during Anna's 4 weeks of therapy. Also they will be trained to eat TOGETHER. With just Anna in the program after the four weeks she would have to be fed seperately from the rest of the family. With them in the program together they will always eat together and so eliminate the stress of separate meals for them.

The only snaffoo is that Anna was supposed to be starting therapy on Sept. 20th, but of course there is not a place in the schedule then for Benjamin! So now therapy is being pushed back further to mid November (in fact right during Thanksgiving....BUMMER!).

And the last hurdle is they will likely want Ben to also have an endoscopy/sigmoidoscopy like Anna did to rule out any GI issues they may have missed through the labwork/Upper GI. Because he has known food allergies they are especially concerned that this be checked before he is admitted for therapy. So our call is in to the GI to talk to him about that.

And we march on!

All The News That's Fit to Print....and a Boatload of Random Photos to go Along...

2011-06-13T10:00:00.001-04:00

Ok, here is my random post to update you on Anna's health stuff (and Ben I guess), and just the random goings ons.

This past weekend Claudio and I attended the IHM conference in Northern Virginia. This is the first year my husband's publishing company, Arx Publishing, was invited to be a vendor. This conference is the largest Catholic Home School Conference in this region...so this was very good news for Arx.

Ben enjoying the mini bathtub in my dad's RV

My dad and stepmom bravely offered to babysit Ben and Anna while we attended the conference.....This is a big deal with Anna's tube feedings and pump to contend with overnight. Plus both kids came down with a cold right before leaving for Virginia!

My parents had a short camping trip planned and so the kids went along on the camping trip in the RV!

look at my shiner!!

While camping Benjamin had an unfortunate run in with a wooden picnic table. He fell right into the edge and got himself a whopper of a bruise on his cheek and a pretty fantastic black eye. Definitely could have been a lot worse!

The conference went really well for Arx and they had great sales and made great contacts. We had an ideal location for our table which definitely didn't hurt!

And I was able to pick up some books, CDs, and DVDs for the kids that we will mostly save for birthdays and Christmas.

Benjamin is scheduled to have his Feeding/Swallowing Team evaluation this week at CHOP. I will be really interested in what they have to say. And to be honest I am hoping they do not recommend the 4week Day Hospital program that Anna will be doing. Just seems far more intense than what he needs. I am hoping for something along the lines of once a week behavioral therapy at their NJ office.

At his last weigh in he had gained TWO pounds in a month!! This was with us giving him 3 Boost shakes a day. So clearly the boy is CAPABLE of gaining weight. He was 28lbs.

having a lot of fun at the playground at the campsite

Annabella is doing well with her Gtube. It has not at all helped with her volume intolerance issues. We still can not get her above 29mls/hr overnight. Also we are having some trouble keeping the stoma site healthy looking. She has her first occurrence of granulation tissue that we are treating. She has her surgical follow up in a week and hopefully they will give us some advice. We were told that the key to a healthy stoma is keeping it dry. Well with the heat and kiddie pool play I am finding this very hard to do in the summer...with just the sweatyness alone!

Anna also had her re-evaluation with the Feeding/Swallowing team at CHOP to see if she would be admitted to their 4 week Day Hospital program.

The situation was a little weird, despite my trying to be as clear as possible, but she was reaccepted and is scheduled to start therapy on Sept. 20th. The program is an average of 4 weeks. So if we end on Oct. 20th that is the anniversary of her surgery!

Her goal for therapy will be to accept a certain amount of bites at every meal (I think they said 5 bites). So we can know at each meal we have that she will take in a consistent amount of food.

I am not at all looking forward to these 4 weeks, nor am I looking forward to the many many months to follow where Anna will have to be fed separately from the rest of the family. I am told, however, that those who have success are those that stick with the program.

I am at least 75% monkey!

Anna has had good, consistent weight gain. I think she was 22lbs at her last weigh in. So that is 5lbs since we started the tube feedings in December.

The Nutritionist we see showed us some interesting information that I kept help but ponder. On the CDC growth chart (so a growth chart put out by the US govt based on heights and weights of US children) Anna still falls just below the lowest curve. So amidst a country plagued by childhood obesity my child is considered quite small. Then the nutritionist showed us the WHO growth chart (put out by the World Health Organization and based on heights and weights of children wordwide) and Anna was in the 15th percentile!

Now I KNOW there are lots of starving children in the world, but I do not think that the majority of children worldwide are starving! Just a really interesting perspective! Also makes me less concerned about Anna's size....yeesh!

And that is just about all the news going on around here. We are otherwise busy with just the typical summertime get togethers, living life, doctor appts, etc.

These are the faces of children who have mixed a 4hr+ car ride with lots of mucous and Dorito cheese. It required a chisel to remove once we got home!!

a face only a mother could ~~wash~~ love!

Size Doesn't Matter

2011-06-08T15:06:00.000-04:00

What momma with a little girl doesn't just count down the days until they can squeeze that baby fine hair into two little pigtails??

She of course immediately went to pull them out...so they were messy once I got the camera.

But ACKKKKKK is there anything in the world sweeter???????????????????????????? I am dying of cuteness here!!

And how is one supposed to resist tickling that little neck??

And my dear Camera-getter. Look at those awesome skinned knees!! The poor little fellow seems to be coming down with a cold. Prayers that it just remains as sniffles and drips and that no one else fall victim.

Yarn Along

2011-05-18T12:20:00.002-04:00

FINALLY getting around to joining Ginny at Small Things in her weekly yarn along!!

I have been a reluctant, on and off again knitter for years, but in an effort to find something nearby/simple that I could do to get out of the house once per week I decided to sign up for a knitting class at my local fiber shop, Woolbearers (PS check out the website and like Woolbearers on FB...great little shop!!).

So the class I signed up for was to knit this mammoth afghan from Barbara Walker'sLearn-To-Knit-Afghan Book Let's just say I have been taking this class since September and I just started block 12!! There are 63 blocks in all. I should be done with it when I am about 80 LOL!

But I REALLY love getting out on Tuesday evenings, sitting with the other ladies and chit chatting...or even just sitting in silence as we are all busy counting our stitches. I always come home refreshed.

As for what I am reading. I have two books going. One is The Blueberry Years: A Memoir of Farm and Family. It is about a couple who bought an old farm and started an organic blueberry farm...haven't gotten much past the intro so that is all I can tell you LOL...

Also just started We Took to the Woods which is about a family that lives in the Northwest corner of Maine in the middle of nowhere with no roads and no neighbors. Again just started it so that is about all I can tell you at this point, but both are very interesting so far!

And just in an effort to catch up on all my missed "Yarn Along" opportunities here are my completed squares for the afghan! I am sort of questioning my color choices....I love each color, but I think I should have matched them up differently. You live and learn *shrug*

(BTW if someone can tell me what the story is with those white squares next to my links please do share!)

Our Day at CHOP

2011-05-13T14:02:00.001-04:00

After waking up, meeting with the surgical team, eating breakfast, watching Elmo, having vitals taken, and a long nap on Mommy's lap we headed out of our room to see what fun we could have.

We stopped by the toy room where I really enjoyed this little pink car. I am still a little sore so I am preferring to sit or be carried and this does the trick.

I drove around outside my door in this fun little car.

I also took several rides in a wagon to see the fishies in the adjoining wing and drew with markers and crayons all over myself, the table....ohh and a little on the paper :P

After an action filled day I am POOPED and am more than happy to just get in my jammies and watch some Sprout before lights out.

The very nice nurse assisted Mommy in setting up my very first feed with my new G-tube. It didn't hurt at all.

And now I am ready for bed and they tell me I will be going home tomorrow!!

(btw, the pink in her tube is not blood or anything gross. Just her dose of Tylenol that will be flushed through once her feed is started)

Surgery Day

2011-05-12T08:23:00.000-04:00

Anna's G-Tube Surgery

2011-05-10T08:16:00.000-04:00

So, we saw Anna's surgeon yesterday and Anna is scheduled for surgery to have her G-tube placed tomorrow. The type of button she will be getting is called an AMT Balloon Mini One. It is very low profile and basically resembles the valve on a beach ball. So today will be a day all aflutter with activity getting everything together, organized, and taken care of.

Prayers that all goes smoothly, that Anna is calm and comfortable, that Ben has a good time at Nonno and Nonna's house (he always does!).....and for a few minor things: we stay on the surgical floor not the GI floor and we have our own room!

Will try to update tomorrow once everyone is settled.

Two Steps Forward, Three Steps Back, You Do The Hokey Pokey and You Turn Yourself Around...

2011-05-04T12:36:00.000-04:00

Just the latest and greatest about Anna her progress.....

After several phone calls with her GI to discuss her ongoing issues with tolerating her overnight feeds and no change in what she is taking by mouth. And how the vomiting is causing a lot of stress for Anna (and her parents) because she is needing her tube replaced over and over. Not to mention the trauma of vomiting in itself and the eating/food aversions it causes. She definitely needs no extra food aversions! The GI felt we should do a Milk Scan to test her gastric emptying/reflux.

Anna had her scan on Monday morning and she did great (this kid could give classes on how to be a good patient). The results showed mild to moderate gastric emptying issues, but she was having several episodes of reflux. We have decided, based on the results, to switch Anna to a g-tube with the possibility that she will need to be switched to a g/j-tube in the future. We have an appointment Monday morning with her surgeon (the beloved Dr. Adzick!!) to discuss the procedure and to schedule it. The surgery requires at least a one night inpatient stay (I am saying "at least" because it seems for Anna these things tend to require more time for her!).

Last week we also received a somewhat discouraging phone call from the Feeding Team at CHOP. They had been reviewing her records and were very concerned to see the difficulty she has been having tolerating her feeds. Because of that they want to reevaluate Anna with the whole team and psych. Their feeling is why give a child intensive therapy to teach them to eat more when they literally can not physically tolerate any more food. I am hoping with the better then expected Milk Scan results that that will swing them in the right direction. So we are waiting on an appt for her new evaluation. They are so back logged and wait listed that we have to wait several weeks/months to get back in for that. We are on their cancellation list though so hopefully that will help (when she had her original eval. we called in November I think and got a February appt, but they called us with a cancellation appt for mid December....so I hope the same will happen again).

So there you have it. We are in a bit of a holding pattern right now with Anna. But we are very excited to be moving to a g tube for her. This will make things easier on everyone and will be totally discreet....unlike the big ugly orange tape across her beautiful face.

Wordless Wednesday - Great Aunts

2011-05-04T10:14:00.000-04:00

The Dress In Action

2011-05-03T11:11:00.000-04:00

Finally got some pictures of Anna in the jumper I made her. I think it looks pretty cute! And in terms of fit should could use a slightly smaller bodice so that the straps were closer together. The straps slip off her shoulders a bit. But this way she has a little room to grow.

Overall it is a great little dress. Just fun, easy, and versatile. Good for a warm day of play or to be a little dressy. Long sleeves, short sleeves, leggings, etc etc...Plus she just looks cute!

And of course Ben wanted in on the photo shoot LOL....this was the face he made when I told him I would take his picture only if he would do a big smile!

Blessed Easter Week

2011-04-28T11:08:00.000-04:00

Wordless Wednesdays - Dandelion Sniffers

2011-04-27T11:05:00.001-04:00

(notice the yellow stains under their noses?)

Just Under The Wire

2011-04-23T22:05:00.000-04:00

Many many many months ago I was at Joann's one evening and came across some ridiculously adorable corduroy fabric that I thought would make perfect little jumpers for Annabella. (I will have to get pics of the fabric to post). The only issue was that I am not a great sewer, I hadn't sewn for over three years, I had no space in the house in which to sew.

So for one of my Lenten goals I decided I would dig out the sewing machine, find/make a space for it, and make up a simple jumper out of some spare fabric as a trial run.

I put this off over and over. I found this most adorable, very easy tutorial here: Bubble Gum Jumper Tutorial but I was still intimidated. Afraid to try and screw up. Ughhh...just couldn't bring myself to do it. BUT I was truly motivated to complete all of my Lenten goals. So I finally forced myself to sit down and just DO IT!

Turned out it was SOOO much easier than I feared and I am love love loving this cute simple little pinafore jumper!! And I JUST finished sewing the buttons on tonight.....hours before Easter and the end of Lent!!

I have visions of adding a little pocket with some little embroidery on it, but it is done, and ready to wear either way. Time to break out the corduroy fabric and get some done for Fall/Winter!

Egg Free Hot Cross Buns

2011-04-22T21:50:00.001-04:00

I made hot cross buns for the first time. I found an easy allergy free recipe. I used regular milk since egg is the only allergen we worry about here. And I left out raisins because they are vile. I have never ever ever even almost had any success making anything requiring yeast, but these actually rose enough (still not great...what is my problem with yeast??!!!) that they came out nice and light. And Ben even ate one!

Recent Thrift Store Finds

2011-04-22T07:27:00.003-04:00

Over the last few weeks I have come across some great thrift store finds.

The Melissa and Doug Noah's Ark sorting toy. My kids love these sorts of toys and I was shocked to see it there on the shelf amidst the junky broken toys and stained stuffed animals!

Cute little jumper for Annabella. Love it!

This picture came out sort of blurry (I wish I was one of those bloggers that knew how to take great photos...alas...) But the statue is of a little girl dressed up to celebrate St. Lucy's feastday.

Anna's Easter dress brand new with tags still on it!

Matching white cardigan because with this weird spring weather we are just as likely to have snow as sunshine on Easter!

This is a baby quilt that I just LOVE (even Cla fell in love with it) because of the mushroom fabric. No idea what I am going to do with it (perhaps take it apart and reuse the fabric) but I just couldn't leave it there!

Find any great deals lately?

Weight/Nutrition Updates For the Wee Folk

2011-04-21T12:45:00.000-04:00

(disclaimer: these pics have nothing to do with this post...just couldn't think of another reason to post pics of the kids brushing their teeth and who wants a post without pics....so it was a match made in ~~the bathroom~~ heaven)

So, first Benjamin: He gained no weight in the last 6 weeks (despite Boost shakes and calorie boosting). He is 26lbs14oz and 35 inches tall. So, we are going to try two things with Ben this month. 1. An appetite booster and 2. For him to drink three Boost shakes a day (the concern was that even with the extra calories he did not gain at all....so lets see what happens if he is getting over 1000 calories straight from the shakes with no portion size etc to worry about...just drink. She wants me sure that absorption is not an issue (he has had several labs done to test absorption all came back normal, so this is just one last check).

And Annabella: She gained a good solid pound despite having a rough month (colds, tube issues, pump issues, etc). Kind of lessons the heartbreak of dealing with that tube! She now weighs enough to qualify for the feeding therapy program at CHOP. Most likely she will start therapy in July (apparently there is a 2yr wait list for this program and kids are accepted into the program based on need....so Anna was accepted immediately pending the weight requirement) or August.

There is now some talk about switching Anna from an NG tube to a G tube. If they offered to admit her today to do that I would have jumped at it. The G tube involves a small surgical procedure to place a port in her stomach and then the pump can be attached directly to her stomach. Definitely higher up on the gory scale, but never again would we have to worry about her tube coming out and all involved with the care of her tube that causes her quite a bit of suffering. Also it would LOOK much better. No more big piece of tape across her beautiful face and the tape tends to get all cruddy with food, dirt from playing outside, boogys etc etc. So anyway, this is just being discussed, but I hope that they recommend it.

We go back in four weeks for another round of weigh-ins etc.

The Lambs To Go Along With Our Lions....

2011-04-21T07:25:00.002-04:00

Just a few pictures of the lamb craft Ben and I did the other day.

It was real simple: Paper plate, some glue, cotton balls (I cut the cotton balls in half so as not to waste more than we have to), construction paper, pipe cleaners, googly eyes, pom poms (and of course anything can easily be substituted....no googly eyes...just cut eyes out of paper, same with the pom poms or pipe cleaners).

Ben had fun gluing the cotton balls around the plate for the first circle. By the second circle the novelty had warn off and he asked me to help him LOL....but basically we glued the black construction paper circle in the center of the plate, glued the cotton balls on in two rows around the outer edge, added the faces and the ears and let the glue dry a while. They are now hanging in our front windows. Came out pretty cute!

Any tips on working on scissor skills with little guys? Other than just keep trying? It is the open close motion he has trouble with once he has his fingers in correctly. It is funny the skills we take for granted as adults!

Relationships Bloom Over the Glow of Mommy's IPod

2011-04-20T19:44:00.000-04:00

Wordless Wednesday - Togetherness

2011-04-20T07:41:00.002-04:00

Anna Does Her Best Snotty Teenager Impression

2011-04-18T07:15:00.003-04:00

Daffodil Day

2011-04-16T12:12:00.000-04:00

Today was Daffodil Day in the town we live in. While the daffodils were definitely blooming the weather was otherwise quite frigid and UNspring-like! We ventured out early as we are expecting a day of heavy rain.

Ben thought it was quite funny to peak through the little window on the stroller. So cute that one!

Apparently there were going to be horse rides, a scavenger hunt, specials at the local restaurants, a Little Miss Daffodil contest, but it was just so cold that we just sort of quickly went around to have a quick look.

One of the little booths had this bee keeping display. That is a live hive with real bees. The man who owns the hives mostly rent his bees out to help farmers pollinate
.

close up of the bees.

They were also having a sheep shearing at the local Quaker meeting house. I peaked in at them in their trailor.

This is the Quaker meeting house.

Claudio and the kids waiting for the sheep.

It was amazing to see how patient and docile the sheep were while being shorn. The man was twisting him this way and that and bending the sheep in half and they just went along with it.

There was also a little fleamarket where we got a few little things....an Etch a Sketch for the kids, a little St. Nicholas nesting doll, some ribbon, etc.

Now we are in the warm house snuggling on the couch watching movies and drinking cocoa.

The Heat is On!

2011-04-13T11:48:00.003-04:00

Well Monday we had our first day of REAL heat. It was in the mid 80s and bright and sunny! We broke out the shorts and tshirts and sandals.....AND we broke out the little plastic wading pool!

I only meant for the kids to use it as a water table. To just kneel over it and play with the toys in it. But they immediately stepped in and plopped themselves down in the water.

They spent a good hour or more sitting in the pool (fully dressed as you see LOL) splashing around and filling buckets and other toys.

And if you look closely you will see even daddy took advantage of the good weather by working on the porch!

The warm weather was merely a fluke as it has been cool ever since! Strangest spring weather ever!

Will Wonders Never Cease?!

2011-04-09T07:40:00.000-04:00

The above is a package I received from my library!!! I requested these books from their webpage, they packaged them up in this nifty bag and delivered them TO MY HOUSE!!! FOR FREEEEEE!!!!

I now plan to have a never ending series of FREE packages delivered to my home!! I swear it is like magic!!

I have long since considered the library as just free, offsite, book storage and this new development has only fed into that delusion!

Update to Our Charlie and Lola Day...

2011-04-08T18:51:00.002-04:00

Benjamin went upstairs for a nap around 11am after falling asleep on the couch. He woke about 2 and a half hours later crying and calling for me. When I got to his room he told me his ear was hurting.

I decided, it being a Friday afternoon by this point, that I better race him over to the CVS Minute Clinic (which, btw, I HIGHLY recommend. They have been lifesavers for us over and over...and TOTALLY affordable).

The Nurse Practitioner looked in his left ear and said, "Yup, it is bright red in there and infected....is this the ear he was complaining about?" I respond, "Uhhh no, it was his right ear.." So she looks in his right ear and that one was even worse! Poor little Ben!!! So uncomfortable!

Just a note of appreciation and realization after this saga: For the first time in my life as a mother I had a child old enough to verbalize to me specifically what the matter was and what was making them feel sick. I was able to run to Benjamin and in a matter of five minutes be in the car to the clinic knowing specifically where the issue was. It was SUCH a relief! So there is the silver lining.

It's a Charlie and Lola Day...

2011-04-08T13:24:00.002-04:00

my two little critters have colds. Anna is already on the mend from hers, but Ben is in the thick of it. He basically doesn't function when sick. So we have decided that today is a Charlie and Lola sort of day.

that is what is on that glowing orb (I tried to take a picture that would show the actual image, but didn't work) that Anna is standing way too close to!

This is both Ben an Anna's by far most favorite show. And I will admit that Claudio and I really enjoy it too. They pick Charlie and Lola over Thomas, Shaun the Sheep, The Wiggles, Sesame Street, Charlotte's Web, etc etc. So, even though we have 4 volumes of the DVDs we are getting a little tired of the same episodes!!! Thankfully I thought to order a new DVD for Anna for Easter!!

Look at that poor sick boy :( He is clutching his two sippy cups. He told me he wanted juice in one hand and a "milky bots" (boost shake) in the other.

Spring Comes In Like A Lion

2011-04-07T09:15:00.000-04:00

To celebrate the cold, blustery start to Spring Ben and I did this cute lion craft using a paper plate, some construction paper, pipe cleaners, paint, glue, scissors.

I compiled what we would need and cut up two pipe cleaners into 6 pieces to make whiskers and cut black construction paper for nose and eyes and yellow construction paper for the face.

This was the first time for Ben to use paint. He was very excited and dug in with gusto!! He painted his whole plate orange with just a little bit of help from me. AND he didn't make a mess!

We let our paint dry before gluing things on.

Benjamin drew the mouth on himself and I was impressed that he got the basic shape and idea!! Not sure why he wanted two whiskers on one side and four on the other, but I think it gives his lion character! We have them hanging up on our mantel....waiting for the lambs to be made sometime soon!

Yummm!!

2011-04-07T08:10:00.002-04:00

A delicious breakfast prepared by my 3yr old. The best egg I ever ate!

(the irony....he is allergic to eggs!)

Wordless Wednesday - Everyone Needs Someone to Snuggle

2011-04-06T09:49:00.000-04:00

Excitement Is For The Birds!!

2011-04-05T13:52:00.003-04:00

The excitement started last night when Anna woke around midnight crying and then throwing up (and losing her tube). She had to be changed, the bedding had to be changed. Luckily she went right back to sleep with no problems and slept the rest of the night.

When she got up this morning it became clear the cause for upset tummy overnight was another cold :( The first sign of a cold for has been throwing up once her feed is started. So please pray that she gets better soon. Even a little cold means days of cutting her feedings in half and therefore lost calories and weight gain setbacks. And prayers please that no one else gets the cold!!!

Now if a big overnight mess wasn't enough.....

This morning Cla was collecting the trash from each room because it is garbage day here today! He comes downstairs to inform me that there seems to be a squirrel in the wall!!! WHAT??!!!!

So I ask, "Well what do we do??" And he said, "We break the wall open or we have a stinking dead squirrel in the wall!"

If you turn up your volume you can hear the animal rustling around in the wall in Anna's room!!

Cla gets everything ready (he put on several layers of clothes and heavy gloves in case it was a rabid squirrel (or possum, rat, mouse, badger....we had no idea what it was....we just assumed squirrel). Luckily Anna's room shares a wall with our bathroom closet.....I was quite happy we didn't have to put a hole in her wall....much better to put a hole in the linen closet!

Cla broke the wall open and out flew a bird!!! I peaked the door open to get this picture of it on the light fixture!! Cla eventually cornered it and was able to pick it up in his hands and put it in our cat carrier.
And there it is!! A very nice looking bird!

And we release the bird back out into the world....and hope that is all the excitement we have for a LONG time! We much prefer the quiet, boring life!!!

We Do Things Old School

2011-04-01T14:47:00.001-04:00

Yes, this is literally an Atari.

April Fools??

2011-04-01T14:30:00.004-04:00

I wonder how many bloggers have that as their title today followed by a picture of snow!! I am not sure you can even see the flakes coming down in my picture but I promise you they were!!

When I came in from taking the picture Annabella had a temper tantrum because I wouldn't let her come outside in the freezing cold and wet wearing her pajamas! I missed the part where she stomped her feet, yelled, and threw herself on the floor. But I thought her Jekyll/Hyde performance was SO funny. I laugh every time I watch this!

Ben was scribbling in this little notebook (cute note: the cover of the notebook has Strawberry Shortcake, the 80s version of course, and whenever he sees her he tells me that she is "so beautiful!" LOL) so I asked him if he could draw a face. He asked me to draw one first so he could see. And then he drew his very first little face!! A milestone for my little Bean!

The below picture I feel like I could play one of those "How many things out of place can you find" games! Ben is sitting and eating(weird thing #1) a piece of ham (that I convincingly told him was turkey: weird #2) as his stuffed pig looks on wondering if it was his cousin (weird #3), and a box of Jewish, Kosher for Passover Matzo...which is no longer Kosher now that it has shared a table with the pig and the ham (weird #4)....anything else weird I have missed?? LOL

Inertia

2011-03-26T06:30:00.000-04:00

The Before Picture

2011-03-25T20:17:00.001-04:00

My How We Have Grown!

2011-03-25T15:17:00.003-04:00

This "little" dress was a birthday gift for Anna last summer from her Uncle Matt. I thought I had a picture of her in it, but I can't find it (mom, do you have it??). It used to come to her knees and hang off her shoulders. Now it doesn't even cover her tush! Amazing!

BTW I forgot to mention the other day that Anna's biosies came back fine. So she no longer has any underlying GI issues (except from some residual motility issues) for not wanting to eat. So we stick with the assumption that it is now just behavioral and we move ahead towards her therapy! Onward and upward!!

Impromptu Picnic

2011-03-22T07:50:00.000-04:00

We have been having a lot of beautiful sunshiny days here! So the other afternoon we grabbed some lunch and took it outside to enjoy the day.

Mmmm, turkey, blueberries, potato chips, and apple juice.

After lunch there was digging, and sliding, and exploring. Unfortunately Annabella is terrified of bugs. No idea when or why it started, but if she hears them buzz by or sees the bug OR its shadow she just gets all upset, "b-bug b-bug mommy!!!" So lately she spends a good portion of her outdoor time in my lap!! This is the girl who pulled an IV from her own arm!! Totally not like her, so I hope it is a passing issue.

We let Bunny come into the yard with us. He is an indoor cat, but he will stay in the yard or sit on the steps to our porch.

Totally unrelated to picnicking, but I know a lot of people are working on organizing their homes during Lent...me included! I had worked out a pretty good schedule and I was just using a notebook to jot down the "To Dos" by hand each day. I was thinking I would need to create some sort of calendar/to do/agenda on the computer when lo and behold this post came up on my feed today: customizable household management planner. A free download at Money Saving Mom!! It is perfect and exactly what I needed. There are a few different templates and just figured if I was looking for one that others might be also!! I made up one page per day of the week and I am going to copy them and put them in a binder so I have my own homemade dayplanner. These are the things that excite me LOL

This is For Uncle Matt

2011-03-21T20:44:00.002-04:00

They worked great Matt! :)

2011-03-21T15:44:00.002-04:00

FOR TODAY...

Outside my window... The sun is poking through after a gray and dreary morning. Lots of stuff is starting to grow and bud. Birds have returned.

I am thinking...about my Lenten goals. Doing fine with accomplishing the "things", but not so great in changing the "habits" or behaviors. Luckily there is still plenty of time left in Lent!

I am thankful for...Poopies in the potty

From the learning rooms... Not much these days. Just our lenten calendar.

From the kitchen...bolognese sauce for dinner tonight. Not much baking going on since I am not doing sweets during Lent.

I am wearing... red shirt, blue velour pants, brown Crocs

I am going... to try to make the most of my days!

I am reading... The Children's Blizzard. It is about a blizzard (can't remember the year) that took place in the prairie (think Laura Ingalls time). It came on so suddenly after a mild morning and was such a vicious storm that many lives were lost. It is referred to as the children's blizzard because when the storm began rolling in in early afternoon most local schools dismissed students to go home and many of teh children got lost in the storm and perished. So far the book is a bit of a snooze because it is discussing Norwegian immigration to the area. I just want to get to the weather which is the part I was interested in. I am also reading a book about discipline by Ray Guarendi. And if anyone is interested: these talks by Dr. Guarendi are also very good.

I am hoping... that the next house we buy has self cleaning floors.

I am hearing...Ben make strange sounds as he jumps on my lap. He is asking me if his pillow is dry (I just washed it).

Around the house...seeds and dirt and sprouts and dirt and dirt and dirt LOL...Cla is starting a lot of seeds so they are all over the house in windows and shelves etc..

One of my favorite things... Holztiger figures. We love these wooden figures here. We have a nativity scene, a kangaroo, and a deer. I just got an owl for Anna and a rabbit for Ben to put into their Easter baskets this year. My kids bang them around quite a bit and they are really sturdy. And one of them accidentally got ink on one of them and I thought for sure that was the end of that figure, but it shockingly washed right off with just water! I was amazed.

A few plans for the rest of the week: Nice quiet week. We have been chockful of doctor appointments lately, but since Anna's scopes/biopsies last week I think we are basically done except a few followups in a few weeks with Nutrition for both Ben and Anna. So that is great news. This is of course until Anna's therapy starts and then we will have a super intense 4 weeks.

Here is a picture thought I am sharing: I finished coloring and laminating (with contact paper) a set of Stations of the Cross to hang in the dining room. Someday hopefully we can purchase a nice set and/or the kids will color their own. But for now these are nice and I am not embarrassed to admit that I really enjoyed the coloring!

check here for more daybooks

What's Going on at the Salvucci House?

2011-03-16T11:54:00.002-04:00

Just the usual stuff. We finally pinned Ben down and cut his hair. This is one of my least favorite chores because he screams, cries, and carries on. This is the worst thing in the world to do when little bits of hair or flying all over. So then he gets hair in his mouth and starts screaming,crying, carrying on, and gagging. But now it is done and we won't have to do it again for a few more months. I love how he looks with freshly cut hair. He reminds me of a little turtle LOL

Annabella saw the Nutritionist last week for her official weigh in and she was 20lbs on the nose!! That is 3lbs since Christmas!!! She will likely weigh enough to qualify for her therapy by next month! Anna also had an endoscopy and a sigmoidoscopy on Tuesday. She did great with the sedation this time. Woke up calmly and peacefully thank goodness!

The doctor said that the scopes looked good. There was an area of her esophagus that was inflamed and they will know more once the biopsy results come back. It could just be from her feeding tube, or the cold she had last week, or any number of random things. We should hear by Friday if the biopsies showed any further issues. This will hopefully be Anna's last major medical hurdle!! She is such a resilient, feisty, happy little ball of energy. She amazes me.

These are the typical sort of shenanigans you might see going on in our house on any given evening.

Benjamin absolutely LOVES to dance. So I asked him the other day if he would like to take a dance class. He responded a bit puzzled, "No...I can dance in my house!" Duh!! And another homebody is born!

And just a note. The stations of the cross with the votive candles worked even better than I had hoped. Benjamin paid attention through the entire thing. Listening to the prayers so he would know when to put out his next candle. It made the prayers even more beautiful. We were so happy with this idea!! We highly recommend it for any family with preschoolers that you want to pay attention throughout stations! Not to mention that Claudio and I really loved the effect as well.

Hope everyone is having a fruitful Lent!

At Long Last!!!!!

2011-03-16T11:37:00.002-04:00

Some of you know that we have been working on potty training for a very very long time (if for no other reason than because Ben is almost always pictures without pants!). He is improving with the pee pee part of the equation. We can even go out in underpants depending on how long the trip is and to where. But poops.....OY!!!!!!!!!!!!! I wondered if the boy would ever make a poop in the potty. And we tried EVERYTHING!!! With underwear, without, candy rewards, punishments, to sit with him, to leave him alone, to read stories, to rub his back, to take him to the moon, to purchase him beach front property in Arizona, etc etc etc. Nothing seemed to make ANY difference.

The other day I was at Target and I picked up the Thomas "Take Play" Tidmouth Tunnel (pictures above in the center). I placed it on top of the toilet and explained he could have it once he pooped in the potty. There was much wailing and gnashing of teeth by Benjamin.

Then today. Out of nowhere. I was upstairs putting away laundry and Ben was playing around me. He disappeared and I didn't think anything of it. A few minutes later, amidst much excitement Benjamin announced, "I DID IT!!!!" Yes indeed folks. He had finally done it. All by himself he got up on the potty and DID IT!!!!!

He is now happily being indulged with as much Shaun The Sheep as a boy could stomach and playing playing playing with the latest addition to his Thomas "Take and Play" set!!

Benjamin Update

2011-03-12T10:32:00.002-05:00

It has been a while since I updated about Ben and his weight gaining issues. So thought I would give a quick update.

I don't remember dates etc, but this was all in the last month or two. He saw the pediatric GI that Anna sees. The GI ordered a whole bunch of tests (blood, stool, urine, and an Upper GI) all of which thankfully came back as normal. The only thing slightly off was his zinc was a bit low. Interestingly, low zinc can cause small stature, lack of appetite, and a lack of a sense of taste. So he is taking a zinc supplement daily. He was also prescribed Prevacid. I was never of the "give a med even though nothing indicates this is an issue" sort of person, but after our experience with Anna I jumped at the chance to try the prevacid. Anna was taking almost NOTHING by mouth, her three Upper GIs showed no indication of reflux, but the difference once she started the Prevacid was STAGGERING!!!! Her eating by mouth has improved so much! I haven't seen any change for Ben yet but it has only been a week for him (we had a big fight with the insurance, which we lost btw, to get it covered. Apparently they feel a child over 2 should be able to swallow the OTC caplets. I have to assume none of these people have had children, let alone children with food aversions and eating problems! I can't get the kid to eat a cookie I am not going to get him to swallow a caplet, but I digress).

So, after all those tests Ben saw a nutritionist who basically said, "Yup, he is tiny!" She recommended the Boost shakes for him (which he is already taking) and that he be referred to the feeding team at CHOP to be evaluated for therapy. His height was below the 5th percentile and his weight was right at the 5th. It used to be reversed...his height was always well onto the chart with his weight hovering around the 5th. The nutritionist said the only way to improve "linear growth" is to increase calories. The more weight they gain the more they grow. period. end. of. story. This has certainly been the case with Anna who is growing out of all of her clothes and shoes by leaps and bounds, but apparently that is what happens when you gain 3lbs since Christmas!

The pictures below are of Ben enjoying his promised McDonalds treat after his Upper GI. He was SOOO nervous about the Upper GI, but he did extraordinarily well!! I was truly amazed! He did exactly what they told him and had no problems drinking the barium.....he almost seemed to LIKE it! They would say, "take three big sips Ben!" and he would just go "GULLP GULLLP GULLP" without flinching LOL....So he more than earned his "hamburgerder" and french fries!

While we were sitting there eating our lunch in teh CHOP cafeteria a woman came over to tell Ben that he was so handsome and lovely that he should be on television LOL!

And here is just a little silly video of Ben during lunch. At the end he is referring to the lights on the ceiling. He noticed they change colors every few minutes. It is amazing what children notice that adults never do. I have sat in that cafeteria an endless number of times and never noticed.

And after a stressful day for a little guy....that is what he looked like on the drive home from CHOP.