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 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!


claire said...

28 pounds is pretty good! Jeffrey only weighed 27 pounds at his three-year old check-up, which was actually two months late, so he was really three years and two months. I think he's now (at 3 years 5 months) around 28 or 29. But his doctor has never been concerned about his weight, because he has maintained his curve. So maybe Ben's weight gain will satisfy your pediatrician, and you won't have to do much more in terms of diagnostics, treatment, etc.

Jamie Carin and Claudio Romano said...

The weight gain doesn't satisfy his docs because it was gained through drinking special high calorie shakes and not actually eating food. We were told to give him three shakes for the month just to be sure that with more calories he COULD gain and there wasn't some absorption issue going on. It is likely that Ben's eating issues are behavioral, but that is what the Feeding/Swallowing team will decide.

claire said...

Well, it's good that he was willing to drink the shakes. A step in the right direction.

Katherine T. Lauer said...

From what I know, the CDC growth charts are based on a small group of white children from somewhere like Ohio, but the WHO charts are based on international breastfed babies.