One Year Old!!!

Daxton turned one today!  And what a miracle he has been and continues to be!  Every doctor and specialist we see continues to be amazed at his progress.  He is completely off his seizure medication.  Hooray!!

We still tube about three bottles a day, but Daxton is now eating baby food and "people" food.  He especially loves pasta.  He has even started drinking a bit from a sippy cup.  We are actually starting the talks of taking out the g-tube.  Just talks.  He has a way to go before that happens, but the idea has been floated out there already.


Daxton still won't bear weight on his legs, and we have a cerebral palsy "clinic" appointment in January to discuss the possibility of support braces for his legs.  No one is overly concerned, but the clinic is an opportunity for a physical therapist, orthopaedic surgeon, brace specialist, and us, of course, to talk about what Daxton may benefit from at that point.  He is SOOO close to crawling.  He moves all over the floor, but not in any organized fashion.

Daxton continues to be a happy, happy little boy, although we are seeing a bit of attitude which is actually refreshing in a weird sort of way.  We know that he has a definite opinion about things!  I'm sure I'll change my view on that the closer we get to age two, but it's great to see for now! :)  He loves to give hugs and he smiles all the time.

There really is no explanation for his progress other than divine intervention!  We continually express gratitude for the miracle that is Daxton!

Last look at the baby curls!

Big boy, one-year-old!

Celebrity - sort of ;)

     Daxton had surgery last week to remove his adenoids.  They were blocking his airway by about 90 percent.  We are hoping this will help his breathing become easier in order to maybe help his bottle-feeding become easier too.  So far - no such luck.  His eating has gotten worse.  In fact, he refuses the bottle completely now.  But, he is still technically in the post-op period, so hopefully things will get better.  And, he will chew on peaches and avocados from one of those genius fresh-food-feeder thingies.  (This morning he had pancakes with his peaches!)  So, hopefully solid foods will become more and more enticing and we can ditch the bottle in a few months anyway.

   As a fun side note, we had a furry visitor while spending the night at UMC.  Those of you who know me know that I am not exactly a dog lover, but when they (meaning dog owner, camera crew, and reporters) brought this big Golden Retriever into our room to visit Daxton's roommate as part of a story about pet therapy, I couldn't resist the invitation to let Daxton check out the dog too.  Apparently something about the sick baby/nice doggy combo triggered a crazy amount of camera clicking.  Legal people came in, we signed some release papers, and voila... 

 we got our picture in the paper! 

Hopefully I'm not breaking any copyright laws by posting this picture.  What?  You think I actually read all those releases I signed? ;)

Daxton loved the dog, and, even though I'm still not rushing out to get a pet of our own I do think the whole pet therapy thing is great for patients of all ages. 

Shunt Buddies

When I started this blog, I vaguely remember NOT promising regular or timely updates.  In order to keep that promise, I have been very neglectful lately.  ;)  I'll work on that. :)

Way back in February, we were at a neurosurgeon appointment with Daxton.  A cute young couple with a baby came in so of course we started swapping stories.  Turns out their little guy has a medical history similar to Daxton's.  Thankfully, this baby's mom (I didn't ask permission to use their names) was smart enough to leave contact info with the office staff so we could keep in touch.  We have, and it has been great to share stories with another family with some of the same experiences.  Then in May, when they were back in town for another appointment, we got our little boys together.  Trent was working so we met at the fire station, and since this baby's dad is a firefighter too, it was fitting.

Those two adorable shunt babies were SO cute together!  Daxton was a little shy at first, but he warmed up pretty quick and started "chatting" with his new friend.  Thankfully (again) this baby's mom was also smart enough to bring a camera so we were able to capture the Kodak moments to share.

OK, this one is actually from my cell phone.  Yay, me, for taking a picture!  Daxton is using is sock as a telescope.  You can really see the shunts in this pic.

Checking each other out at the beginning.  Daxton's shunt is over-draining; the other one is under-draining - can you tell?  Poor flat-head Daxton!

Fingers ALWAYS in the mouth!!

That tuft of hair naturally grows longer over his shunt.  So dang cute!!

Daxton deep in conversation while big sis listens in.

Shunt buddies.

Best of luck to this sweet family.  Hopefully these little guys will stay this happy and healthy!

Under the weather

Daxton has been a little sick lately.  He isn't eating as well as he has been, but he is as happy as ever!  He giggles all the time!  :)  And apparently he has been having some pretty deep thoughts...

He's home!!

Daxton's got to meet his oldest brother, Trevik, when he came home from his mission this week!  Very awesome!  Daxton got to be an "E" in our family's "welcome home" lineup.  He played the part like a champ!! ;)

OK. You can't see Daxton's "E", but trust me, it was cute! :)

Oldest and youngest!

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.

Miracles

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