The letter of the day is D!

We are now one week post palate closure operation and we are seeing some really wonderful changes in Owen. His palate closure is still healing and still has many visible stitches (which will dissolve in time), but it looks really great! The transformation of the inside of his mouth is absolutely unfathomable. I am awestruck every time he opens his mouth. Thank the God for such talented surgery staff.  I will be traveling to St. Paul two days this week to his post operation appointments with his surgeon and ENT (ears, nose and throat doctor) and to Stillwater for an eye appointment. With things going so great and looking so good, I think the appointments should go without much complication.

Since his closure we are starting to see him experiment with his new mouth and nose. This morning as I was lying in bed listening to Owen jabber on the baby monitor before I went to his room to get him there was a very clear 'Da Da Da Da' coming from the monitor! I woke Shelby up and we both just sat quiet and enjoyed the first moment we have heard Owen say Da Da! ...before surgery there was nothing for his little tongue to touch to make the 'D' sound, now there is.  He has also been vigorously blowing air in and out of his nose the last couple of days. We guess that he is learning how his nose works now that it isn't open to his mouth.

Pureed food and formula is going very well. He is taking about 75% of his formula by mouth and the remainder we are feeding through his g-tube until he is able to work back to his regular intake amounts. To tell you the truth- I am shocked at the speed of his progress! He is working so hard and is really trying to get the knack of taking a bottle with his new mouth. He still gets a significant amount of air and gets frustrated at times, but we are seeing improvements at every oral bottle feeding. He has taken to cereals and purees pretty well! He's taking about half as much at a sitting as he did prior to surgery, but we'll get there. I know and can tell by his behavior that he misses the 'fullness' that food gives him.  It's already become routine to use a regular baby spoon and feed him just like a regular baby.  It feels like that's how we have always done it. -how easily we can forget the challenges we faced just one short week ago.   I'll be glad when we can move away from his tube 100% again. It's a curse and a blessing at the same time. One of the nurses in the hospital commented that all kids should come with a button. :) It is easier to give him his medications and easier to get him fed without struggle, especially in a post oral surgery situation, but we worked so hard to get away from it the first time... we're ready to get back to that place.

One of the biggest challenges we have faced is his "No-No's". They are little arm-splints that he wears when he sleeps to keep him from touching his mouth. They essentially keep him from being able to bend his elbow joint. Since he is a blanket chewer, we have to make sure he wears them when we can't see him. It's tough and he whines at night. They really restrict his ability to move around in his crib or lay on his side like he likes to. I'm praying that at his follow-up appointment tomorrow they will tell us he doesn't have to wear them anymore.

We are continuing to see the lack of gross motor activity with Owen. He is rolling like a madman and sits up well with support, but is quite floppy when un-supported. He, like Ashton at 10 months, refuses to weight bear on his legs and is lacking in muscle tone. Even with the earlier intervention of occupational/physical therapy and medication there is still something genetic that we are unable to put our finger on to figure out how to fix. It's a tough pill to swallow knowing that we are likely to see the same gross motor path with Owen as with Ashton. We assume it is a symptom of the shared unknown/undiagnosed condition. There is comfort in seeing the improvements that Ashton has made in the recent months and how close we are to Ashton's gross motor independence.  While we know balance will be an issue for some time to come, the Independence of unassisted walking is going to open a whole new world for him. 

We will visit the Mayo Clinic in Rochester with Ashton on the 12th for his regular endocrine visit and we will see our geneticist to get and update on genetic testing. We aren't putting too much stock and emotion into a genetic breakthrough at this point. We have exhausted all standard and most non-standard genetic testing.... we have been told our kids are truly 1 in a million at this point... and possibly true 'individuals'. :)

Even with as much attention that her brothers get, Kiera continues to wow us! She has recently mastered the 'art' of drawing smiley faces!! It's her favorite things to draw. She loves to color and create and is getting quite good at it. I keep doodling new shapes or letters/numbers on the sides of her paper to challenge her a little. She is always willing to take the challenge head on and try herself. She can sing her ABC's and knows most of her letters by sight as well as count to 20. She articulates and verbalizes her needs so clearly and accurately. She's like a sponge!  Everything Ashton learns she learns too... like Nikki Fox says, "What are they going to teach her in school, she's only 2?!" We know it's a hard spot for her- sandwiched in between her brothers with their challenges, but doesn't fade into the background she shines just as bright along side of them. Some days I think she was born a big girl. Her level of caring and understanding is just amazing and beyond her years, but it's the heart of the little girl that loves her brothers unconditionally and doesn't see what makes them diffrent, but she sees what makes them just like her- truly beautiful.

Hugs, Love & Prayers Always,

Sarah & Shelby Fox