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!
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