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!!

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!

Threeeeeeee!!!!

Cyler is three now and is such a big boy. He is so funny! Every time you ask him how old he is he proudly replies "threeeeee".    His birthday was great.  We spent the entire day at Sea World.  Cyler got to see every single show they have there. On Saturday it was the party with the family.  We had hotdogs and my extremely talented sister made Cyler a Mickey Mouse cake which he wouldn't go near. 

It has been 2 months since trach decannulation and he is doing so well.  We are extremely proud of him.  The week before last we went to the beach.  It was so much fun.  Terry and Cyler got to put there toes in the sand for the first time ever!  

 



The ocean itself was a major hit.  We were really suprised how Cyler just wanted to keep running back to the ocean.  We were very cautious as the stoma is not closed yet but we had it very securely covered.

Cyler and Daddy played in the sand and had a blast. 

 We are planning a return trip after the stoma is closed.  Living in Florida does have it's pluses!

The Places We Go!!!!

Cyler has continued to do really well without his trach.  He has had one cold and his first bout of rotarvirus...yuck!   One thing that is a major change is that his nose is constantly running now.   He is exposed to everything and I guess he is developing allergies.  It doesn't help that the pollen count has been so high lately that it doesn't even register.   Those normally without allergies are finding that they too are susceptible to the yellow goop.  Anyway, the stoma looks really good even though it is still open.  The tape was really irritating to Cyler's already sensitive skin, so I fashioned a neck wrap out of trach ties.  Surprisingly it works really well.  It holds the gauze in place and if I need to change the gauze I just need to loosen one side of the tie and viola!    Just like before.

I must admit that it has been really nice being able to just get up and go without having to worry if the suction machine is fully charged or if we have enough catheters.  We have been so many places.  We went to Disney...

...Cyler had tea with Minnie Mouse!

and rode Dumbo with Daddy!



Disney was a lot of fun!  We have also gone to Sea World,  we got season passes so that we can go there whenever we have a doctors appointment in Orlando!  Last Sunday my mom took us all to the zoo.  Cyler really loved looking at the animals. He even got to feed a giraffe!





He really liked the aquarium at the zoo.   He enjoyed making faces at the fish...the tanks were huge and so were many of the creatures inside!

It was a really great day!   My mom got to spend some much needed time with Cyler and he loved it. 





We have been so busy having soo much fun.  Trying to get all this done before the real heat of summer sets in.  Here in Florida it gets quite hot and I don't think that would be too good for anyone let alone Cyler.  So we are now looking for some indoor activities!





Decannulation

Ok...so we get a call on Monday that says we have to go to APH on Thursday to get the trach out!  YAY!  We were told to be there about 2pm 1/27/2011.  Cyler loves the ride to Orlando and always gets soooo excited whenever he sees the big Mickey ears! We had some time to kill as the ENT was not there yet so we got to walk around the hospital a bit and Cyler had fun with Mickey and Pluto down in the lobby!

Finally, at about 6:30 in strolled the ENT.  This was it the big moment and we all thaught that we would allow Cyler to pull the trach out himself since that is one of his favorite things to do.  He wouldn't even touch it!  I couldn't believe it.  So I got to pull it out. Well Cyler screamed and screamed...the ENT was quite impressed. After about a minute daddy had gotten him calmed down.  Cyler then looked at me and pointed to his Mic-key button as if he was saying to take that one out also.  LOL!  It was sooo cute.  We let Cyler play with the trach tube for a little while before eventually throwing it in the garbage.

He did sooo well through the night.  Slept comfortably for the most part...untill the nurses needed vitals.  His numbers remained good throughout the night.  When Cyler woke up in the morning he did have quite a coughing fit but managed to get rid of his secretions...and that is what we want!  Yay! We are soo proud of him.  We were discharged home as promised right around 1pm.

Capped Sleep Study

Low and behold after my rant about how frustrated we are with Cyler's ENT office staff we get a call from them stating that there was a cancelation for a sleep study but we had to be there by 7pm.  We said ABSOLUTELY!  Otherwise we would have to wait until sometime in February.   We packed up and headed to Orlando, about an hour away.  We were about an hour early so we got to eat at Five Guys...mmmm!  First time there and will definatly go back.  Anyway, we were kindly at the sleep clinic.  We did have a few questions for the tech since this sleep study would be different from those in the past.  Cyler handled everything remarkebly well.  Didn't put up much of a fuss as she stuck over 25 electrodes to him in varius places.  He did however protest greatly when it came to a cannula that was to be placed under his nose to monitor his ETCO2.  He repeatedly pulled it off and all of the wires were pulled together so tightly that it was almost impossible to put it back in the correct position without totally disturbing everything.  When he finally fell asleep we tried several times to adjust this.  Everytime he would wake up crying.  I can understand why he was soo upset but the tech told us that this was actually one of the most important parts.  UGH!  Finally, she told us that if we could just hold it into position for a few minutes every half hour so that she could get a reading that would be ok.  Finally, Cyler got some good sleep.  He did soo well.  His sats stayed at about 98% all night and his ETCO2 remained within normal limits as well.   Respirations were unlabored and steady.  At 5am the tech came in and told us that we could remove all of those probes and get ready to leave.  She said Cyler did well and she didn't see anything that made her think that the cap needed to be taken off. Now all we have to do is wait for the results.

Frustration

We are getting very frustrated at Cyler's ENT's office staff.  We were told by the ENT two months ago that we could begin the downsize/capping process and that if we were ready sooner to give a call.  Well Cyler has been doing extremely well and about 3 weeks ago we gave the office a call to advise them that he is doing well and we are getting ready to put in the final downsized trach and that we don't have a back up.  I went further and asked what we need to do to get this process rolling.  She said well don't worry because she will order us a trach.  I explained several times that she can order anything that she wants but that doesn't mean the DME is going to get it to us.  Our insurance provides one trach per month and we are ordered to downsize every two weeks. She didn't get it, and yes the trach was ordered but of course we weren't going to get it because we weren't eligible yet.  We couldn't afford to purchase one as we had already made arrangements to purchase one 2 weeks prior.  Anyway, I also asked her at the same time how long Cyler needed to be capped before we can proceed to the next step.  She told me to start with 15 minutes and move up from there.  I asked again what length of time was required before moving on to the next step.  She repeated the whole start at 15 minute thing again, to which I told her that he has been capped all day.  I then gave up on that issue.  Over the following couple of days she came to the realization that we would not be eligible for the trach that she ordered until next month.  YAY, she got it.  She called again several days later to say that the ENT said February was ok!   For what?,  I asked and her answer was..."all the doctor said is that February is ok:"  UGH!!!!  She advised us to call her as soon as we get the OK from the cardiologist and she would set up a sleep study before Cyler's appointment with the ENT on Feb 2.  I called her on Monday and she said that she would set it up. Now it is Thursday and still NOTHING!!!!   I am sooo frustrated...every single time I speak with this woman she tells us that we can't rush this, like we don't know that.  We are not RUSHING anything we want answers...we want to know what we need to do to prepare Cyler and ourselves.  We want to know what to expect and all we are getting is a whole lot of nothing. 

Echocardiogram

Cyler had an echocardiogram yesterday because the cardiologist wanted to make sure that his heart was ok before we move forward with decannulation.  He required anesthesia becuase he is a wiggler.  That was more traumatic for us than it was for him...he actually did very well.  The echo took about an hour then we were discharged home.  In the evening the cardiologist called with some of the greatest news that we have ever heard. 
1. The VSD is closed.
2. Ventricles are more normal in size.
3. Pressures within the heart are completely normal-no pulmonary hypertension.
4. Cardiologist doesn't need to see him for 2 years.
5. Safe to decan from a cardiac standpoint.

YAY!!! we are sooo excited and yet petrified at the same time.