Busy bees

Lalo is doing fantastic with his jtube feeds!  We saw our GI doctor at the beginning of this week and he said Lalo looks great, like a whole new baby.  The plan he gave us is to stay with the jtube feeds until he is 12 months old.  At that point, we can try testing his stomach again to see how it handles food.  If Lalo still cannot tolerate feeds, then we will probably do surgery.  The only issue with this plan is that jtubes are apparently very hard to keep.  It is an extremely thin tube that runs to the jejunum and there is a greater risk of it clogging.  To prevent that, we flush the tube with water every 2 hours even though he is continuously being fed through it.  Typically, if the tube clogs or comes out, an interventional radiologist at the hospital can replace it.  However, the GI dr reminded me how difficult it was for him to get the J tube in place because of the issues with his pylorus and the way his small intestine lies (he called it a malrotation).  So if Lalo's does have an issue, it will definitely have to be the GI dr who replaces it (or at least attempts).  We may also have to discuss surgery sooner if that happens.  For now, we are trying to be very diligent about flushing it and not letting Lalo pull on it!

The improvements we see in Lalo are so amazing.  He is doing so much better with his therapies now, he is sleeping better, and he just happily chatters away and laughs frequently.  Here is a picture of him enjoying his exercises at therapy.

Here is a video of him hard at work during therapy, using his right hand!

He is very skeptical of the whole food thing, but has been doing as well with it as we can expect.  He has tried sweet potatoes and pears so far.  Our biggest focus is to teach him to open his mouth when the spoon comes at him, so he can also learn to close his mouth or turn his head when he doesn't want something.  He does much better with tastes when we just let him have the spoon and try it at his own speed.  He has also done very well chewing on bagels and some carrots - must feel good on those teeth!

We also saw our pediatrician today and got the fantastic news that she thinks we are okay to travel now.  Wahoo!!  It has been almost a year now since we have been out of town at all.  Unfortunately, the next few weekends are packed but soon enough!  She also said his right breath sounds are much improved so she agrees it is likely he may have been reherniated for awhile. 

Caleb is doing great also!  We are almost to 2!  He is always busy and always on the run.  Our neighbor jokes that he only knows how to run, not walk.  That is why we only capture blurry pics of him.

Busy week coming up - my best friend's baby shower, neurology appointment at Hopkins, and a sleep study to name a few!