Thursday, January 26, 2012

The CHOP update....

So Monday morning (January 23) I bundled up my little guy.....





and walked from our hotel in Philly (there was no room at the Ronald McD house) past the University of Pennsylvania Law School (right across the street) and past the U of Penn Medical Center to the Children's Hospital of Philadelphia (CHOP), which is the oldest Children's Hospital in the US, founded in 1855....

I think they have modernized it a bit....


We met with Dr. Campbell for our VEPTR consultation (see veptr.com for cool details on what this procedure entails) and I was so impressed by his kindness and the team they have at CHOP. Henry is definitely a candidate for this procedure...I saw "before and after" procedure x-rays of several children's spines and the results are simply amazing!!

When I told Dr. C we are also concerned about Henry's joints, he called in his colleague Dr. D, the "joint displacement" specialist. Long story short, it looks like Dr. D can do surgery to reconstruct Henry's knees and straighten his feet and improve the tendons in his legs!!

The next day we saw Dr. M, the pulmonary specialist, and he wants to have a sleep study done on Henry here in Chicago to see if he needs more oxygen at night, which would probably help him to grow and gain weight more quickly. So we will try to get that scheduled before Henry's cleft palate surgery on February 17!

We will return to CHOP for about a week sometime in April for a whole battery of tests on Henry, some of which he will need to be sedated for. We will likely bring all the children with an have our family vacation in this wonderful historical city!

While the medical side of the trip was all kinds of awesome, I did have an unpleasant few hours on Monday night as I lost my almost new iPhone (pouring rain and pitch dark, getting baby in cab, trying to fold stroller, people streaming out of hospital bumping into us.....)

But my friend Nicole and her boys Marshall and Jack waited for us at the restaurant and buoyed our spirits with with good fellowship and conversation and general little boy cuteness!! Oh, she also bought me my dinner and a much needed cosmo after my phone trauma -thanks hon! I owe you on our next visit!

New iPhone in hand we headed back to Chicago Tuesday afternoon (thanks Miracle Flights for Kids!) and jumped right back into the craziness that is everyday life with 7 children....

and I wouldn't have it any other way.

Saturday, January 21, 2012

All you Henry fans will have to wait...

....we will be at Children's Hospital of Philadelphia (CHOP) soon and my next post will share what we found out during our consultation with Dr. Campbell about the VEPTR procedure and whether or not Henry is a candidate!!

But for today, we have a visitor to the blog....

meet Malcolm!!


This sweet boy 4 year old boy is waiting in Russia for someone to adopt him!!

You can see another picture and his full story at http://reecesrainbow.org/?s=Malcolm&x=19&y=11

and I really want you to go there are read it all...

about how he is scheduled to be transferred  to a MENTAL INSTITUTION in a matter of MONTHS...

even though he is cognitively NORMAL....

how he is bullied by the bigger more physical boys in the orphanage....

how he loves his constant companion, his stuffed tiger (anyone remember the old Calvin and Hobbes cartoon???)

WE CANNOT LET THIS HAPPEN!!!

I will be shouting out for Malcolm often in the next few months...

because Henry is home and safe and loved and getting the best treatment American medicine can provide.

Malcom probably needs some therapy to walk....

but he DEFINITELY needs the love of a family and SOON!!!

Please...search your heart...donate to his fund if you can...spread the word....

The first question which the priest and the Levite asked was:  "If I stop to help this man, what will happen to me?"  But... the good Samaritan reversed the question:  "If I do not stop to help this man, what will happen to him?"  ~Martin Luther King, Jr.



Friday, January 13, 2012

Why did the Chicken Vesuvio cross the road....?

To get away from Henry!!

Our little guy who 3 months ago would not allow ANY SOLID FOOD to TOUCH his mouth, made a play for the half-eaten chicken breast on my plate at dinner last night!!

After the grab was accomplished, he studied it....


La Di Da....Just hanging out at the dinner table....


Why are you watching me with such a big smile?


Just a boy sucking and biting on a garlic-and-olive-oil-infused chicken bone....


YUM!! I am glad I have an Italian momma!


20 MINUTES of a death grip on the chicken vesuvio...biting, chewing, swallowing.....

I have never been so happy a guy liked my cooking :-)

Thursday, January 5, 2012

CHOPped!!

No, not this Chopped...


this CHOP....

Children's Hospital of Philadelphia!

Henry is going to have a consultation with Dr. Campbell there in only a few weeks...

Dr. Campbell is the co-creator of the VEPTR procedure...

It refers to the Titanium rods placed in a child's back to help improve their pulmonary function AND the curvature of their spine....it looks like this when placed....


It helps to correct this problem...


This is kind of close to what Henry's spine looks like...but his is actually worse because it curves AGAIN at the top (one reason why his head is always cocked a bit to the left) and his upper vertebrae appear to be misshapen (triangular) as well as bent out of place....

So we will CHOP away and see if this procedure will help our sweet baby boy! Will keep you posted!!

Now I need to get some real work done on the computer and will probably need to stay up late to finish.......so I agree completely with the definition below: