Update...

We are eating again.  Cyler eats a little of something with every meal.  (mostly sweet potatoes)  I am so thrilled.  He is doing really well.  Also because of all of his "dancing" we have decided to enroll him into dance classes.  He LOVES it!  There is another little boy in there about his age but the class is mostly girls.  His first night was last Tuesday and he has talked about it every day.  He really can't wait to get his tap shoes.  He is growing so much and we are so proud of him.  Furthermore, Cyler has decided that he wants to "potty train".  He will actually let me know that he has to "pee in the potty" or "potty train" about 2 times a day and he likes wearing training pants. 

Christmas 2011

Christmas was awesome this year.  This is the first year that Cyler has actually been excited.  I took about all of December but we were finally able to get Cyler to sit on Santa's lap.  After that, everytime we went to the mall he had to sit on Santa's lap so that he could tell him what he wanted...again, and again.  On the day before Christmas Cyler kept trying to go to bed because he knew that Santa comes while you are sleeping.  He is sooo darn cute!   Christmas morning was great.  Santa left lots of presents...

Ok so Santa didn't bring the fan or the Tiger but we live in a small apartment so we really didn't have anywhere to move them to. Anyway...

It took a really long time to open presents because Cyler decided that he would use one of the tiny swords that came with his dragon castle.  Then he would peek into the slit that he created with the sword.

If he liked what he saw the rest of the paper would come off! 

We even got a few smiles...

We all had such a great time this Christmas.  Merry Christmas and Happy New Year!

Christmas Tree O Christmas Tree!

         Well we put ourChristmas Tree up the other night and oh how exciting.  It did go rather quickly as we decided to purchase one of those prelit trees this year.  Once it was up Cyler decided that it should be decorated redneck style as he proceeded to hang everything from phones to shoes on it.  He then stared at it for a few minutes while yelling "TOYS" as if they would magically appear now that the tree is up.  It is quite logical that he would expect to see presents under the tree since that is what is drilled into everyones head all year long. 
         We have also decided that Cyler has to see what snow is because he calls all of the snowflakes hanging around clouds.  He has come quite a long way since our appt. with the genetecist.  Since that day Cyler has been anwering questions appropriately, naming colors, objects, and people.  It has been incredible and this did take place literally overnight!  Woohoo go Cyler!

Geneticist Appointment...underwhelming.

         Cyler has seen a geneticist every year since his birth.  She "followed" him in the NICU and performed genetic tests and such while he was there and continues this even now.  Her big thing is that she wants to find a syndrome for him.  I can't wrap my head around this.  All of the test have proven that he does not have a syndrome and yet she continues this "research".  Well during the last appointment I was completely dumbfounded by her.  She claimed that he has Echolalia because he repeats what we say.  I am not saying that it's not a possible because I have found in life that ANYTHING is possible.  However, the day after the appointment Cyler began answering questions appropriately instead of just repeating what we say.  She also let us know that we should be working more with him on his communication skills.  This totally threw me for a loop because I personally work with him all day, EVERYDAY!  I reminded her that he just had his trach removed in January and that he was unable to verbally communicate for 3 years.  Personally I feel that he is learning by leaps and bounds.  I find it absolutely amazing that this child that could not speak for 3 years is now putting 2 and 3 words together, can count to 10, and sing the alphabet song in less than one year. He also continues to use his "signs" to communicate.
           She also informed me that his "dancing" is inappropriate and must be stopped.  I can't believe this!   When Cyler is excited he dances a little, I think it's great and at times have even joined him. The last comment she made before we left really made me cringe.  She said that my husband and I were making excuses for Cyler.  Excuses for not talking, not eating, etc.
            My son has overcome so much in the time that he has been here and these are valid reasons for not reciting the dictionary and eating seven course meals in one sitting.  My son spent 7 months in a NICU ,1 year hooked up to a ventilator, and 3 years with a trach because he couldn't breathe. He is still tube fed because he developed an oral aversion from being intubated and unable to eat for such a long time.  We are extremely grateful that he CAN dance, CAN eat, and CAN talk!

Winner Winner Chicken Dinner!

This past few days has been very exciting.  Cyler won an amazing prize from Melissa and Doug.  I entered a contest online  and Cyler won a ton of stuff.  These things were actually featured on an episode of Extreme Makeover:  Home Edition.  I still can't believe it.  Way to go Cyler! 


Look at all this stuff...

He loves EVERYTHING!  We are soo blessed. 

Potty Training...

I totally think that Cyler is ready for potty training.  He is letting us know whenever he needs a diaper change and sometimes taking off his diaper right after.  Unfortunately, Cyler doesn't agree.  I have tried setting up a potty routine and he just holds it until the diaper goes back on.  I have also tried just leaving the diaper off and he put a halt to that by peeing everywhere and anywhere! We shall see! Gotta run...time for a diaper change!

Finally!!!  Cyler's stoma incision is looking really good.  It did completely heal up then a few days ago it opened and a little more stitch came out.  It is now closed over again and almost completely flat.  I can't help but wonder though if there might be a little more stitch in that that needs to come out.  I guess only time will tell. We don't have to keep it covered anymore and he keeps his hands off of it most of the time. It's all GOOD!!