Monday, February 28, 2011

More Good News

Since I last posted, Daxton has been seen by all of his doctors/specialists again.  They all gave glowing reports.  The pediatric surgeon replaced the g-tube with a mic-key button that - after getting used to the new tubing - is much easier to use.  The last stitch that was hanging on and creating a little abscess situation finally came out so the site is looking much better.  I actually had to put the button back in after the doctor took it out so I could learn how.  I guess these things fall out occasionally and the hole will close within a couple hours if the button isn't put back in right away.  Very strange experience shoving a device into a hole in my son's stomach!  But Daxton didn't seem to mind, so I was OK!
Mic-key button.  We just hook the tubing to the button when we need it and then disconnect when we're done.  It is not nearly as bulky as the g-tube, and he can actually have a bath with this (as soon as we get the spare.) :)
The neurosurgeon said the shunt looks good and is maybe working a little too well.  We have to keep Daxton lying down when possible to keep the shunt from draining off too much fluid.   He will have another MRI in a couple months to check things out a little closer.  (I wish it was sooner.)  But, she was very pleased with how Daxton looks and acts.

The GI doc is very happy with Daxton's weight gain.  (In fact, Trent says we are done with that doc.  "We don't need to pay someone to tell us he is gaining weight!  We can see that ourselves!"  He's right!)

The speech therapist/feeding specialist said Daxton is doing "fantastic" and he continues to advance with the volume of his feeds.  He is finishing most of his bottles by himself.  Usually it is only the meds that go in the tube.  Very convenient!  We still vent with the tube during feeds so he can "burp" while eating to avoid pressure buildup (a few of the other boys are jealous!), but we can stop doing that when I feel Daxton is ready.  Or at least try and see how it goes.  The kids get quite a kick out of the tube "burps" and we even got an unexpected spray when Daxton sneezed during a feeding the other day!  Eeeww!!

The occupational therapist is also excited about Daxton's progress.  He is holding his head better and better.  He is reaching for and grasping his toys - and then they go straight to his mouth!  We are bumping up therapy to twice a week to start working on some more gross motor tasks like sitting and rolling and stuff like that.  Daxton really likes his therapy because it is basically just play.  It does wear him out though - he sleeps for hours afterword!

Playing at OT.
More interested in Mom's phone than the toy.
 The neurologist said Daxton is doing "amazing" and continues to be surprised with his progress.  He did agree with me that it might be a good idea to get an MRI a little sooner just to make sure that there isn't too much fluid being drained off.  (Too much draining can cause the lining around the brain to kind of "suck in" and pull away from the skull.  That can create bleeding.)  He is going to consult with the surgeon about maybe moving up the MRI, but only because the neurologist is admittedly paranoid and would rather be safe than sorry, not because he thinks there is anything wrong.  When we are talking about avoiding a bleed, paranoid is good!  I like paranoid!

So, we are again (and still) feeling very blessed with how Daxton is doing.  He continues to be a miracle.  He is such a happy baby and a joy to our whole family.

Sunday, February 6, 2011


When it was clear that Daxton was going to make it, we knew we had witnessed a miracle.  What I am beginning to realize more and more is that his miracle continues.  When a brain bleed as bad as Daxton's occurs, if the baby survives, it is very likely that the brain damage is so great, that major neurological deficits will quickly become apparent.  (And the left side of Daxton's brain is covered with scarring and damaged areas.  If I can get my hands on the scans, I'll try and post a pic for you medical types!)  The doctors explained the ramifications of all that to us, but I don't think the extent of what they were talking about really sunk in.  As we continue to have (tons of) follow up visits with specialists and therapists, I am learning just how unexpected Daxton's recovery thus far has been.  

Daxton is currently getting lots of therapies. He goes to occupational therapy once a week.  That frequency will increase as he is expected to do more, ie. rolling over, sitting up, crawling, etc.  (Thankfully it is just down the street.)  And a physical therapist and speech therapist/feeding specialist come to the house.  The speech therapist, Mark, is a friend of ours, so I called him when we got home from the hospital and told him Daxton's history and that we needed his professional help and referrals.  Mark and a developmental specialist came over within a short time to assess Daxton.  They were amazed.  Mark said based on Daxton's medical charts, they were not expecting to see him acting like he was acting.  They either expected a baby so stiff that he would need meds to relax enough to function, or a baby so limp that, again, he couldn't function.  Repeatedly we have been told that Daxton just doesn't fit his charts.  

When the pediatrician saw Daxton drinking from a bottle, he stopped in his tracks.  He was amazed that Daxton had the ability to coordinate the suck-swallow-breathe pattern as well as he was.  Later in that visit, he mentioned that when Daxton smiled at me the first time I would probably cry.  I thought to myself, "Yeah, it's always such a sweet moment when a baby smiles at Mommy for the first time."  I didn't realize that the doctor considered a smile a "maybe" for my baby.  Daxton smiles, SMILES!!, all the time. He has even giggled a few times too.  He is cooing and gooing like a baby his age should.  I didn't know that the medical professionals thought he might never do those things.

Yeah.  He made me cry. :)

Daxton is showing some right-sided weaknesses, and he will continue to receive occupational and physical therapy to work with that. He still needs the g-tube to finish feedings.   We have a lot of developmental milestones to reach.  But for now, we are so grateful that Daxton's miracles continue.

"God has not ceased to be a God of miracles." -Mormon 8:15