Tuesday, June 28, 2011

Shiny New Floors!!

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.

Saturday, June 25, 2011

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.


Friday, June 24, 2011

What's Bloomin?!

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??

Friday, June 17, 2011

Two For One Deal

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!

Monday, June 13, 2011

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

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!