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!!

Complications

Cyler has done extremely well following his stoma closure surgery.  Week one the incision looked like it was completely healed.  Week two the trouble began. He woke up on Saturday morning with drainage from the incision site.  We took him to the hospital and were given ABT cream and med.  Week three it started to look pretty good again but towards the end of the week he developed a ball at one end of the incision.  Finally a few days a go a pretty good sized piece of stitch was laying on Cyler's chest when he woke up.  Here we are a few days later and the ball is still there!   I am not sure if there is more that needs to come out or not.  Keeping Cyler's hands away from it is quite challanging.  I sure hope that it heals soon!

Stoma Closure

Well Cyler had his stoma closure surgery on August 4, 2011.  He did very well.  We did have to spend the night in the hospital for observation and Cyler was not to happy about that but we did it.  We are now home and every thing is going super.  We actually allowed Cyler to splash a little in the tub last night, with the doctors permission of course.  I am so proud of my little hero!

Eating

Something that we take for granted on a daily basis is the ability to chew and swallow food.  When someone doesn't get the opportunity to experience this early on in their development they can struggle a great deal with this very issue.  This is what happened to Cyler.  Cyler has been fed by a tube his entire life.  It began in the NICU.  He was fed via tube because he was intubated and sedated for quite sometime. He came home with a feeding tube and that is how he gets his nutrition.  We have tried several times since he has been home to introduce different tastes and textures.  We have been a little more persistant now that the trach is out.  Well about two weeks ago Cyler decided that he would eat for us.  He worked himself up to almost 2 jars worth of baby food per day. All of a sudden a few days ago he just stopped...he has no interest anymore.  We were warned that this might happen but it doesn't make it any easier to deal with.  All we can do at this point is keep offering and keep the faith!