Cyler is 5!

We have had an interesting couple of months.   Cyler is now 5...YAY!   He decided on an M &M birthday party.  My lovely mom and sister made an egg free cake and cupcakes and everyone had mac    and cheese.  This was also the first party in which he invited his friends (half of the neighborhood). He is growing up so quickly and we are so proud of him.  

He had his Mic-Key button removed a few days before his birthday.  Actually, he and I took it out at the doctor's office.  Cyler is doing very well with the eating.  We are doing a little more variety but not budging on the textures.  I am completely ok with that for right now and apparently so is he.  

Cyler has contracted strep throat.   We just went to the doctor today and caught it early.  He was not wanting to swallow and gagging easily.  Fortunately, he isn't fighting me too much on drinking fluids.  The MD told me not to worry about eating at this time and to just make sure that he drinks.  He even took his meds without much of a fight.  They did ask me if I wanted "flavoring" in his medication.  The medication said that it was cherry flavored as is, so I didn't feel it necessary to add more.  Additionally, I don't think that medicine should be made to taste like candy!

Lastly, I have wanted to homeschool Cyler since he was born.  I have always felt that he would be able to learn more about the real world from spending time in the real world instead of being in a room with 30 other children.  I feel strongly about education and I am running into so many different and opposing views.   I am not homeschooling for religious reasons or as a protest of the public school system.  I am not unschooling.  

We are off and running

Cyler didn't finish out that last week at the feeding clinic.  He never did work it out with that therapist.   I did have to interrupt one of the sessions.  The therapist was sitting behind him and pulling his head back while shoving the food in his face.   I was absolutely mortified and he was screaming so I had to end it.  The rest of the week he was with the other therapist and did better.  However, the following week he started acting strange.  I told them that there was a difference in the food that they were sending up.  He ended doubled over in pain on several occasions.  One time he even ended up in the emergency room.

During one of his episodes of pain he ended up biting the therapist.  She was blaming his behavior.  Turns out the food that he was being "forced" to eat was made with egg.  He is highly allergic to egg and that's what caused this severe reaction.  I did not take him back there (other than the final meeting) since I found that out.  Furthermore, as far as Cyler biting the therapist--I think that if I was strapped to a chair, in agony, all while listening to the hokey pokey might have caused a similar reaction.

Now on the the good stuff.  Cyler is eating like a champ.  We are constantly adding new foods.  Right now everything has to be pureed but that is ok.  He doesn't get any overnight feeds and is completely off of the Peptamin Jr.  We are absolutely thrilled.  Some of his favorite foods are yogurt, mac and cheese, and spag o's.   He really loves broccoli and Velveeta.

Since Cyler is not on overnight feeds anymore we have also lost our nursing.  Terry took a job at Knight's Trucking.  He is out on his first run right now.  This is all going to take some getting used to. We are used to being together all of the time and now it is going to be weeks before we are together again.  Thank GOD for cell phones.

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.