Time to eat!

The past few weeks have been quite an experience.  We have been through so much to get Cyler into this feeding clinic in Orlando.  Everything had to be coordinated perfectly and no one was on the same page.  Between the insurance, transportation, work schedules, and the feeding clinic staff it was quite a mental work out.

Finally, last Thursday we were able to begin.  Thursday and Friday went very well.  Cyler did amazing with his therapist.  He continued to eat and do well at home and ate like a champ over the weekend.

Today he ate really well also, but not without protest.  He had a new therapist today and they didn't get along so well.   He will have her all week so hopefully they will work it out.

He has been put on Eryped to help with gastric emptying.  He has been on it a few days now and all I can say is that he is giving the toilet a work out.  I am not sure if he is coming down with a cold or if he is experiencing allergy symptoms.  We did move the Zyrtec to the evening as suggested, I wonder if that has anything to do with it.

I hope this all works itself out soon.

3 years !!!

We have had a very busy week.  On Monday Cyler went to the eye doctor.  He did so well.  He thought that it was "hilarious" that both the tech and the eye doctor were going to check out his eyes. The doctor said that while Cyler has a "drift" he is not concerned because he was able to manipulate it and Cyler was able to refocus himself.  He also went on to explain that 60% of sensory processing is done through the eyes (optic nerve) and his eyes were perfect.  In his dictation the doctor noted that Cyler was "surprisingly cooperative and well behaved for his age".

Tuesday we started off at Dr. Mehta's office (GI).  Dr. was not to happy that the feeding clinic said that he wouldn't be able to get him in til March and said he would make  a few calls. This appointment was routine.  Dr. checked him out and made a few med changes.  Dr. Mehta did ask Cyler if he brushed his teeth.  Cyler at first didn't answer but then Dr. Mehta told him that brushing his teeth was most important.  Cyler than replied:  "well than, YES".   "Yes I do brush my teeth"  "I brush them everyday, day and night".  Cyler was most excited that he was now tall enough to ride the "Shamu roller-coaster".

After the GI appointment we headed over to the heart doctor for a two year followup.  He did very well again despite the fact that he wanted to get to Sea World.   They did an EKG-Cyler did great.  Then Dr. Riddle came in and said she would like an echo done. The last time he had an echo done was almost 2 years ago and he was asleep.  He did AMAZING this time.  He stayed still for the entire hour long process.  The tech had cartoons on but Cyler was more interested  in keeping the tech entertained with his impressions of what he saw on the monitor.  He noted that the flaps (valves) opened and closed to let the blood through, how many chambers there were, etc.  I was shocked.  When we got back to the room Dr. Riddle came in and she started to explain that everything was great and there weren't any restrictions.  Cyler felt it necessary to ask her if his "flaps" were ok and if the blood was alright.  (basically he wanted to know if he could ride the roller coaster).  She explained to him that his "flaps and blood were ok" and that he could ride any ride that he is tall enough for...and follow up in 3 years.

------We did go to Sea World after the Dr. appointments.  Cyler did get to ride the Shamu roller -coaster and a few other rides.

Not so intensive feeding clinic...

            As I mentioned in a previous post, Cyler had an evaluation to see if he was a candidate for an out patient feeding clinic.  The "team" agreed that he would benefit from their services.  They informed us that he would have to be there  5 days a week for 4 weeks and it should be really soon.  (no waiting list).  Now a month later and after I have worked my but off to arrange transportation to and from this "feeding therapy", they tell me that Cyler won't be scheduled until March of 2013.  I have been calling them for the past two weeks just to get a copy of the evaluation.
           Finally, today I get a call that the evaluation is ready.  It's been a whole month!   I asked the lady to email it to me because I was tired of waiting.  I was completely shocked with what I read.  They said that Cyler was cooperative and appropriate, then a few lines down said he was developmentally 22 months old.  Unfortunately, this is because they use "standardized" testing and since he isn't eating "normally" they deduct a ton of points.  Also, there is a small speech delay.  Cyler had a trach most of his life and wasn't able to talk, so that is expected.  Where is the standardized test for that?  
            I still can't help feeling a little upset.  This is my baby.  The boy that they told me probably wouldn't live. Here he is walking, talking, and amazing me every single day.

1.    I see that my son can name off every single car they sell on the market and all they see is a marker for autism.

2.    I see my son taking random objects and positioning them "just so" and then telling me what it represents (creativity and imagination) all they see is a pile of things that he is focusing too much on and if his eyes wander, even for a second, then he must be ADD.

       I did speak to his speech therapist about this evaluation.  She informed me that intellectually  Cyler is at, if not above where he should be.  I felt a little better.   Some reassurance that we are doing the right things here.  I am not in denial.  I know that there are plenty of developmental issues.   However, I take into consideration all that he has accomplished and all that he has been through.  It is important to consider all that he CAN do.  He has plenty of time to prepare for college...I think I'll just let him be a kid for a while.

The Web!

          My friend Anne Marie posted a link for this spider web activity on my facebook wall.   The idea is from a site called notimeforflashcards.com.  Check it out--lots of fun things to do!  Cyler helped me set up the web.  We used masking tape and it was quite simple.  Then the fun began!



 He loved jumping off of his turtle into the web.  He also observed that the turtle's shell resembled the web design.

He hopped around .

Walked...carefully!

Used it for his car.

Finally, he decided that he would be a spider and crawled.

          I love this idea. I love how open ended it is.  Cyler has come up with so many uses.  I think I will keep it on the floor for a few days and see what else he comes up with.  

Awkward...

           I love my son.  On Thursday my mom came to pick up Cyler and I in her new car.  It was really nice.  We ran a few errands then went to lunch at a Mexican restaurant. I had a ton of food left over to bring home for my hubby since he couldn't be with us.  As I was climbing into the car the box fell and all this lovely red colored food was all over my moms light gray interior.  We managed to get it all cleaned up but my darling little child kept tattling on me.  Telling my mom that I made a mess in her new car and that it was all over the place.  He said this over and over again just using different words for emphasis.  So my mom asked Cyler if he thinks that I should go in "time out".  Cyler's response:  But I love her.  He is so awesome!

            This morning Cyler and daddy went to Lowe's to build a "ghoul bus".   It's really great, they give you all of the supplies and it's completely free.  Cyler is so proud of himself and is enjoying telling everyone that he made it all by his self.  It is pretty cute and he is looking forward to going again in two weeks to do their next project.

              Also, today we had an important meeting with a home health nurse regarding my son and the care that he receives.  She was very nice and just asked a few questions while looking through the chart and such.  Well our lovely four year old decided to climb into the dogs cage, growl, and chew on the bars.  (our tiny poodle does this when she wants out).   We were absolutely mortified and I could feel myself turning beat red.  We are absolutely all for imaginative play.  However, the timing could have been a little better.  My husband managed to pull my at this point,  screaming in protest, son out of the cage.  They went to Cyler's room to play so that I could finish up with the nurse.  The nurse and I came to the conclusion that maybe she wasn't paying enough attention to him, so I invited him out to talk to her.  Did not work so they went out of the house for a while so we could wrap up the meeting.

            We are really anxious now because we have an adoption home study coming up.  A social worker is going to come to our home to make sure that it is suitable for a child.   We can clean and prepare our home as much as we want, but we can't predict what our imaginative and curious child will decide to do at the last minute.  I don't think that all the Xanax in the world could help me now.

I CAN...

               Cyler is growing so fast.  He is learning and gaining confidence everyday.  PAHM  is a great blog  run by 3 moms that empower their children to be independent and explore their world.  They believe that their children are capable and they trust them.  Since following their posts I have come to the conclusion that even though some things are not a good idea for safety reasons (omphalocele) there are so many things that Cyler CAN do.

Cyler  CAN...

                                                                       climb

slide

kick a soccer ball

dance

play

count to 20

spell Cyler

build really high towers

love

name many shapes and colors

jump high

drink from a cup (new)

read

draw awesome "air dancers"

jam to the oldies (the real oldies)

share

run and skip

brighten every ones day with a smile

and so much more!

Building Strength!

         We had a consult in Orlando at APH to see if Cyler was a candidate for their "intensive feeding clinic".  He had to perform a number of tasks in front of a group of specialists including a doctor, therapist, nutritionist, and social worker.  He did really well with the actual tasks.  I wasn't sure how it would go especially after he decided to tell the social worker that his name was "poop" when she asked him.  After the evaluation we were informed that they feel Cyler would benefit from the program.  YAY!   Now we just need to arrange transportation to and from Orlando 5 days a week for 4 weeks!  YIKES!
   
       Also, at the appointment a new diagnosis was thrown into the mix.  We were told that Cyler has low muscle tone, also known as Hypotonia. I was completely taken off guard with that one.  I never considered this even though all of the signs were right there in front of me.  Not being able to balance on one leg, being wobbly, and lack of shoulder definition.  I brought this up at our pediatricians office and we now have a physical therapy consult and a neurology consult.  He should have never been discharged from PT.  When he met his goals new ones should have been created.   The neuro concert is to address some of the self stimulating behaviors that Cyler has (dancing, vocal, and focusing).  So now we are taking our "learning" to a new level.  Focusing on gross and fine motor skills.

       We made Cyler a "busy board"  to work on his fine motor skills.  Some people have asked why I am teaching him to unlock things.  My son is 4 years old and already knows how to do these things.  If we have something under lock and key for his safety the key is not within his reach!  It's that simple!  Part of the board is a "geoboard".  It's just nuts and bolts placed so that he can use rubber bands to make various shapes.

     We also found a park far enough away from the road where Cyler can run.  He LOVED it!

 

     It was so awesome to see him run like this.  He is always active but tends to forget about safety. I think that it's a boy thing.   If we let go of his hand for any reason, he takes off running.   This park is PERFECT.  There is enough area to run and it's semi closed in by a fence.  Cyler has told us that next time we go that he would like to play soccer.  Sounds like a plan!

Straws!

There are so many things that can be done with a handful of straws and a few empty containers.  Cyler enjoyed making letters, shapes, and people.  I was able to sneak in some math as well.  I asked him to count how many were there, then took one or two away, and asked him to count again.  We did this several times and he did amazing.  We also worked on one to one recognition by having him place a certain amount of straws in each container.  This is to ensure that he understands that each number represents one object instead of just counting by rote.  This kept us busy for about thirty minutes.

We added letters to the mix.  Today he was able to spell GMC, Cyler, stop, and of course Ford!

Yesterday was talk like a pirate day (for real).  We didn't know until later in the day but we were still able to talk about it some and incorporate some activities.  Cyler played with his palm tree and pirate ship for a while on his private island.  We watched the Rubbadubbers--pirate episode and went on a small treasure hunt.  

Painting and such.

Glue and sand art.  Cyler really enjoyed this.  He really liked pouring the glue on the paper.  He than started sprinkling some sand on the glue. Finally he decided to mix all of the colors together and see what would happen. The end result was a really pretty peach color.   

Below is Cyler painting with classical music in the background.  I can't believe the concentration.  It's amazing.  He was completely focused.  That is until the static interfered and totally wrecked his groove.  Nevertheless he did manage to create a few nice pieces.  

Even daddy got into the fun and decided to introduce transfer painting.  He folded a piece of paper in half and asked Cyler to paint only one side.  Cyler loved this.  It was so much fun to watch his mind process how this was working.  Daddy looks like he was having fun too! 

Weathering the storm...

The weather forecasters predicted that there would be some severe weather this week here in central Florida.  Mother nature had other plans.  We got a little wet and a few random gusts of wind but mostly just overcast.  So what did we do?  Went to the park of course!

 Cyler really liked crawling through the tunnels--this is a first for him!

Slides are always fun!

 Tuesday we spent a good deal of time in the morning with Play-Doh --lots of fun!

We did end up getting a little rain and when daddy came home we went outside to get a little dirty--big time sensory play!  YES!

Yes--you may take off your boot and fill it with sand!

Cyler had a great time playing outside! In the beginning he wanted us to wash his hands right away but quickly became more interested in exploring--Hooray for dirt!

Fast forward...August!!

Cyler is AMAZING!   He has been completely potty trained for a month now.  He decided all my his self and did it in one day.  Of course, this was right after purchasing 2 cases of diapers because they were a "good deal".  How much of a good deal is it if you only use a few of them.  Oh well, donation time.  We have made some changes...ALL OF US!  We as parents are trying to say yes more.  Realizing that we will never know what Cyler is capable of if we don't let him try.  We have also come to the conclusion that Cyler was very much overstimulated.  This was not good.  We went through his toys and got it down to one cubicle and one bin of toys.  Yes, I understand that this is still a lot.  The rest were moved into the walk-in closet to be traded out later and some were donated.  Cyler was very much involved in the process.  We gave him the choice to rotate, donate, or keep out.  It was funny at one point--he climbed into an empty bin and said that he is not to be donated or rotated because he is staying.  At another point he looked at all the toys in the closet and asked why they were in there.  We explained again the whole rotate thing again then asked him what he thought.  His reply--I think you're A**Holes!   Terry, almost fell over and I was shocked that he used the word in the right context.  (remember this child couldn't even talk for 3 years).

Cyler is 4 (quick post)

Cyler is 4 now.  His birthday party was mostly racing themed.  I say mostly because he wanted a Barney/racing/pirate B-day.

 Here he is letting his AWESOME car cake melt....lol    He was happy anyway!!!

  He continues with his dance classes and even practices at home.  He really loves dance class a lot.
 Also, we are going on a trip in June.  We will be taking the AutoTrain to Lorton, VA then driving to PA.  Spending some time in my old stomping ground...so excited.  Mostly he is excited to go Sesame and Seaside Heights. We shall see!

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!