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
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!
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.
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!
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!
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!
a face only a mother could