Here is the latest on our family...

Thursday, January 22, 2009


Today was Henry's video swallow with Dr. Arvedson in Milwaukee.  We spent the last week practicing for this test, so Henry felt fully prepared.  We were well rested after spending the night with our friends Vince and Jen (and Olivia and Cece).  

Henry was a star during the test.  He drank the barium and milk mixture from a spoon as well as from a bottle.  When he initially took the bottle, he performed a series of eight vigorous one-to-one suck-swallow actions that clearly demonstrated that he is both swallowing safely and ready to begin oral feeds.  Dr. Arvedson described the test as "very, very encouraging."  Basically, he is swallowing normally with no evidence of aspiration, and he has the necessary coordination and willingness to feed orally.  

We now start the process of transitioning to oral feeds.  We begin each feeding session with five minutes of bottle (or breast) time.  Whatever he doesn't finish during this session, we feed to him through his NG tube.  When he is able to feed himself for the entire five minutes, we will lengthen that period.  Eventually, he will feed 100% orally, and we will remove the NG tube permanently.  

Dr. Arvedson estimated that this process will take anywhere from four weeks to several months.  Based on his performance today, she estimated that he would initially be comfortable taking 5 - 15 mL of milk.  At his first feeding this afternoon, Henry sucked down 30 mL of milk!  At his second feeding, he took 25 more.  He seems to crave his milk once he gets started, and we have to be careful that he doesn't overwhelm his ability to swallow.  He needs to work on his pacing.  

We also met our in-home speech therapist today.  She was able to watch Henry's first bottle feeding and recommend that we switch to a slow-flow bottle nipple.  We are happy to be working with her.

We began Henry's occupational therapy earlier this week, and his physical therapy starts next week.  All together, we will have three therapists working with Henry in our home each week.  

Our next big test is an EEG and neurology visit next Thursday.  If the EEG shows no seizure activity, we will be able to wean Henry from the phenobarbital.  We remain optimistic that this will be the case. 

Enjoy a video of Henry taking his first bottle:

Here are some other photos from Henry's week:














Beth said...

I've been a "lurker" almost since Hank's birth & while he's been in my thoughts & prayers, I've never posted. What wonderful news!!! I was thrilled just to see the title of your post. It's a joy to see this little guy thrive after such a rough start! God Bless Little Hank!

Marcy said...

Great news. He looked like a veteran at it. I'm so happy for all of you. This was one of the many miracles he will bring to you.

Andrew McAninch said...

Go Hank!

RobJ said...

That's wonderful news!! We're so thrilled about all the great Hank developments. Thanks too for the videos. They are adorable.

PenJames said...

Fantastic, wonderful news. So thrilled. Px

Will said...

Cool beans. The joy of food.


Adele and Bryan Carter said...

Oh my goodness! What a great little eater you have! I just want to pinch his adorable little cheeks - he is just so handsome. Great to see his development - thanks for the great updates. We are forever thinking of all of you!!!!