The Longest Home Stretch yet

Y'all.

It has officially been 8 weeks since Nathan was in the hospital!  8 weeks in a row of no hospitalizations is more than double the longest stretch we've had in almost a year.  It's been an unbelievable gift to introduce Nathan to some family and friends that we anticipated his meeting long before now as well as just beginning to find some new rhythms as a family.

How does it feel?  Kind of like this...

The blue casts stayed on for 4 weeks and then (because they were "soft" casts) we took them off at home.  I'm not gonna lie - that was an intense moment, the removal of those casts.  There's nothing like peeling back layers of bandages that were filled with dried blood...  my sons' blood.  Blood from that time they used saws to separate bones... and scissors and needles to cut skin from one part of his body to move it to a place where no skin had previously existed...  Like I said, intense.  I started to think about it in the moment and had to quickly tell myself "think like a nurse, not his mom!" and from then on, it was fine.  The truth is from a medical standpoint - they looked great!  And now, after a week and half of "wound care" (wrapping/dressing his hands and feet three times a day) and a few weeks of freedom, the Mom-side of me can even say they look fantastic!  They are healing perfectly and he is using them like crazy!  The stringy-er (it's a word) or thinner an object is the more interested he seems to be in holding it and playing with it.

Turns out a lot of development can happen when a kid isn't in a hospital bed all drugged up.  In a timing all his own, the kid is checking off some fun developmental milestones that have his therapists and parents pretty excited...

Stay sitting on his own? check.
Rolling around like a maniac trying to get his toys? check.
First tooth? check.
Giving his sister lots of smiles and hugs? check and check :)

So cute now - absolutely terrifying in 14 years.

He just adores her.

Only 16 months older but she's clearly in charge.

Thanks to a wonderful new speech therapist, Nathan is continuing to make some great progress with his eating.  He now takes 60% of his formula by bottle and 40% through through his feeding tube.  He is also getting to start trying some baby foods and even trying some "Mum-Mums" (an easily dissolved finger food for babies.)  Considering the guy had no food by mouth from Feb 3- June, we are thrilled with this progress! 

First finger foods!

Sometimes, when my arms get tired I just used my feet.

Looking Ahead:

September 19th - Nathan is scheduled to have an MRI as long as he is healthy.  He currently on the tail end of a little cold...  This MRI is to determine that there is no tumor in his brain that is causing the nystagmus of his eyes and also to make sure that the general pressure, etc. around his brain is not being increased because of the fusions in his skull.  We don't expect to find anything new (like a tumor, etc.) but you can be praying for a clear MRI.  

October 9th - Assuming the MRI comes back clear, the second surgery for hands and feet is scheduled in Dallas.  This should look very much like the last one, except the final product will be ALL 5 fingers and toes!!!