Food, ABA, & big boy bed updates!

It has been a little while since I have updated on how things are going in our little world! Lots of changes :)

First of all... Food, food, and more food!! We still aren't sure what clicked after our few hour visit to Marcus feeding institute but it doesn't matter because our little man is eating! We did pretty much puree foods for a couple weeks and slowly transitioned to more solid foods. Right now, C is eating a mixture of foods and it is absolutely amazing!! Some examples of what he has eaten: slices of pizza, dill pickle spear, lemons, bananas, goldfish crackers, yogurt, chicken, quesadilla, beans, chips, broccoli and cheese soup, grilled cheese sandwich, sliced cheese!! I know some of it is junk, but right now we aren't making a huge deal because he needs to master the eating skills! The list could go on and on, he is eating! Yippee, soooo exciting!  While you read the list I am sure you noticed those things contain milk, yes milk! We are 99% sure he has outgrown the milk protein allergy he had! His skin doesn't break out where it touches, no more eczema from milk products, and no major vomiting or other GI issues! 

                                  {Getting practice, but still make a BIG mess}

We, Josh and I, made the ultimate decision to cut back his gtube feeds even more than previously to encourage more intake by mouth. Of course  all of his doctors are aware and we are now making weekly weight checks since the cut back. He still gets 2 gtube feeds per day, at 6 am and 10pm so he is asleep during those feeds. Now he has all day to work on his eating skills without feeling full from his gtube feeds. So the first week of this cut back he lost 4 ounces, the following week he has maintained his weight. Hopefully he will continue to maintain and eventually gain weight with this schedule!  

                         {Spaghetti face}

                                                   {Yummy lemon}

On to the ABA therapy updates: Back when C had the STAT test, we were told he qualifies up to 20 hours of ABA therapy per week in addition to his current therapies. Since then, we have been trying to find an ABA therapist. This is a struggle and is starting to make me very nervous. Since babynet doesn't pay the therapist the greatest, we are struggling finding one.  The reason this makes me nervous is because C looses babynet when he turns 3, therefore if ABA therapy hasn't been initiated by then he is placed on a VERY long list. He is number 1,048 on the PDD waiver, which means there are 1,047 other children in South Carolina ahead of him waiting for ABA therapy....this could be years before he could get the therapy he needs. If it gets started before 3, then my understanding is that the therapy will continue on even when he turns 3.. no breaks in therapy. See why I am nervous?! In the meantime, we continue his weekly therapies and are always learning new things to help our little man. 

He may not have an official diagnosis of Autism yet, but I am constantly researching and reading. I wanted to share this and bring more awareness to autism: 

Growing up.....C has sorta been moved to a big boy bed! We were very fortunate to make it this long in his crib. The other day when I saw him perched up on the edge of the crib, I panicked! Thank goodness he didn't have his CPAP hooked up to him yet, but that was my fear..I feared he would fall or jump from the crib and his cpap tubing get caught. Therefore we removed the front part of his crib and put a mesh rail. He has slept several nights and naps in his "new" bed and hasn't attempted to get out....yet! I am not sure what we are going to do when he gets out with his cpap hooked to him since he isn't capable of removing the mask. We will just have to cross that bridge when it happens! :) This bed change has been a big reminder to me that our little baby is no longer a baby!! People don't lie when they say that children grow up in a blink of an eye! 

That not so fun trip to Santa's Land

While we were headed to Tennessee on our vacation, we had planned to stop in Cherokee, North Carolina at a little family theme park called Santa's Land. I believe Josh was more excited than any of us to check this place out since he had gone there growing up. 

As soon as we walked through the gates C was trying to run the opposite way we were going. If you didn't know this already, public places are extremely hard to keep him with us if he isn't in a stroller or buggy. We have to physically hold his hands, sometimes he is willing, and he manages to wiggle out of our tight grasps. If we aren't holding his hand then he takes off running, no matter how dangerous the area is- This has given me multiple heart attacks in parking lots where he starts running towards moving cars! 

As soon as he sees the fun little train that travels around the park, he screams. When I say scream, it is like a scream and a growl combined, not a pleasant sound by any means. Of course we had onlookers immediately as he screamed. We were able to distract him enough to go feed some of the animals. He was most interested in the deer, after that it was hard to get his attention on the other animals. 

As soon as we made it to where all the rides were, he growled and screamed again. I guess the sounds, lights, smells, and movement was just too much for him. I was determined to get him on a carousel though! He had never been on one so we decided we would all sit on the bench. The bench doesn't move like the horses do, so I figured that would probably be a better place for the first time. We placed C in between us but that didn't last long! As soon as the carousel started to move, he flipped out. I placed him in my lap and tried to distract him by counting all of the horses in the ride, all the while he was screaming and crying. Thank goodness we were the only ones on the ride, but we gained many stares from around us. As soon as the ride stopped, Connor said "bye bye" in a pitiful whimper and we quickly got off. 

As we walked around and saw all of the other children having an amazing time, smiling from ear to ear, my heart started to break. Every parent wants their child to enjoy typical things but yet those typical things may not interest him or scare my child to death. It is tough because we never really know what he will absolutely love or hate, but I knew one thing...he was not a fan of this theme park! We found a basic slide and ladder and let him play on that for a good while before we left. 

I am glad we got to try a smaller park out first with less people, but the stares that some people gave us was ridiculous! With children that have sensory processing disorder or autism spectrum disorder, they have meltdowns. Meltdowns aren't because their child needs more discipline, discipline isn't going to cure the meltdowns or unique fears. I just wish I could tell those people that stare just a little too hard that it isn't polite to stare, and I am sure they were taught that at some point in their life! 

Needless to say, we won't be going back to any theme parks anytime soon but it was good for us to learn more of what is difficult for C to handle. We continue to expose him to things and places because you just never know what he will absolutely love! He did love the aquarium that we went to in Gatlinburg, TN.  That made Mommy feel better watching him run up to the tanks and say "fish!"  while he did the sign for fish with his hands. It is the most heartwarming feeling ever to watch your child have a good time and not show any fears :)