GI Meds (Again)

Since getting off the GI meds in October, Matthew's eating has taken a nose dive.  Today we went to see the GI.  Not good news. Between getting off the meds, the fact that he'd very much like to feed himself (though he isn't yet efficient enough to do so for an entire meal), and the latest stomach bug, Matthew has lost almost 2 pounds in the last almost 2 months.  That is close to 10% of his body weight.  So, Matthew is back on the pricey gastroperisis meds again.  We hope Matthew won't have to be on the meds forever, but we definitely want him on them as long as he needs them! 



Waiting for the GI appt,
Matthew plays Peek A Boo Barn on my itouch.

Craniosynostosis- 1 year post op!

1 year ago today Matthew had his craniosynostosis surgery.  There were rocky moments in the OR that day and there was a chance we could have lost him. Thanks to his fantastic surgeon, Dr. T, his great medical team, the blood donated by my Dad and Peter, and the sweet grace of God, we have had the great pleasure of holding and loving on our sweet baby Matthew for the last 365 days. (and more!) We couldn't be more thankful!

Today we went to see Dr. T for the 1 year check up. It has been so long since we had been down there, I had to check the route to Dr. T's office before we left.  Matthew's head has healed perfectly.  Additionally, we did talk about Matthew's propensity for grinding his teeth.  Matthew was born with a recessed chin and a small jaw, which may be causing the teeth grinding.  And the teeth grinding has caused the teeth to grow in slanted toward the back of his throat.  Dr. T indicated that they typically don't do anything about this until all of the adult teeth come in, including the molars (~16 years old).  But at Matthew's check up in 2 years, Dr. T will have the orthodontist and maxillofacial team come take a look if Matthew is still grinding his teeth.  Overall, it was a good appointment. 

Holiday Fun

Last week we started our Star Wars Lego advent calendar.  It is the highlight of the evenings now.  The anticipation of what each of the little doors will hold...a little character, a small ship to put together, etc.  Lots of holiday fun!

 
As well, this past Saturday, Alyssa and Jackson went with Grandma Joy to decorate gingerbread houses.  Time with Grandma, candy, and icing-- what isn't to like?  

All I Want...

...for Christmas is my two front teeth!  

They may not be 'the' two front teeth, but Alyssa is in definite need of 2 front teeth.  Her first one came out a few weeks ago, and today she pulled out her second one. And I think there are 2 more coming out soon.  She may have a very gaped grin for Christmas pictures!

Ride On Toys

At PT on Thursday, Matthew worked on riding the ride on toys.  I was saddened, realizing yet again how Matthew has to work for things that came so naturally to the other kids.  These ride on toys were a favorite of Jackson's when he was 6 months + younger than Matthew is now.  Jackson used to scoot around our living room, time and time again. And though I was saddened at how hard Matthew has to work at these seemingly simple things, I did take great joy in seeing him slowly but surely move...first backwards, and then a little forward.  

A page from Jackson's 2008 Favorites book.

 Matthew on the ride on toy at 21 months.

Crazy & Messy

When you walk into our house, there is no doubt that we have 3 small kids.  At this very moment there are plasma cars, ride on toys, books, balls, the remote control, Star Wars blasters and other random toys littering our living room.  No matter how hard I try to straighten up, it almost always has a disheveled look. 

I joke that I should add "stuff mover" to my mommy job description because I move the same items time and time again.  I put the remote on the end table, and 2 minutes later Matthew throws it back on the floor. I put the ride on toys away, and a few minutes later, Alyssa and Jackson are racing around the living room.  I put the toys in the bin, and within the hour I'll look around and find them all over the living room.  I feel like I do this a half dozen times a day. I really should only do it once, with the kids, right before they go to bed but I'm not ready to admit that my life is that crazy & messy yet.  

Right Now

Life is very good right now.  Everyone is relatively healthy, just periodically dealing with typical ailments like ear infections, head colds, and stomach bugs.  When we visit the pharmacy, it is for antibiotics, not heart meds or Vicodin.  Just comparing how far Matthew has come in the past year + reminds us to be so very thankful for this good life today.  

I was further reminded the other day.  I'm a member of couple of rare chromosome disorder support groups and one featured a little girl as their angel of December.  The sweet little girl with a rare chromosome disorder went to heaven at age 13.  Her story wasn't that different from Matthew's.  This was a reminder that though life is very good right now, that may not always be the case. Matthew's health could take a turn.  Hopefully not, but it could and because of that, I need to be very, very thankful for the goodness of now.  I am very thankful for right now.