Isaac's cold is much better and I didn't even have to call Pulmonology to add meds to his bag of tricks. YAY!This weekend I was desperate for some "me" time, so I spent most of the day Saturday shopping, eating dark chocolate and watching a movie by myself.....it was SO nice. I need to remember to do that more often! On Sunday the photographer from The Littlest Heroes Project came and took shots of our shining star. He was napping when she arrived so his eyes were half closed throughout most of the session. After singing "twinkle twinkle little star" and "the abc song" about 15 times he finally perked up and we got some good pictures in. Of course I will share later and if you're good I might even send you a Christmas card with a family photo!Brownie was feeling left out so I took some photos of her this morning in her new bandana. Doesn't she look festive in her flames? She's like "OK mom, give me that cheeto already!"
She's a purebred chocolate and we bought her for Easter when my daughter was 4. Aside from trying to keep the hair out of Isaac's trach, she's the best dog around! Oh, and she loves all of Isaac's nurses.
I am totally spent! while trying to recover from the tail end of this cold, Isaac caught it and has been captain wheeze in both lungs. As we move closer to the weekend, I may have to call Pulmonology. They were probably wondering why it's Wednesday and they haven't heard my voice yet! Autumn has my cold too and she stayed home from school today as I didn't want her to share the love.
BTW she's getting her cast removed next Thursday, YAY! Since her birthday is just around the corner (October 17), she wants to celebrate having her wrist back by bowling. It doesn't seem possible that my little girl is turning 8!Well, as promised, here is that smiling face in his brand new blue stander. 
Have a great rest of the week everyone!
Friday Isaac got his ears molded for hearing aides. He was a good sport and didn't squirm as much as I thought he would when the audiologist squirted funny stuff into his ears. Of course Lynn and I sang several songs to him, including his all time fav's like "twinkle twinkle little star" and "head and shoulders, knees and toes." I have to be totally honest, I have had mixed feelings about these hearing aides. There are a few things I've had to consider, aside from the fact that he will have another exciting piece of plastic to play with. Since Isaac is non-verbal and will most likely use sign language, my dilemma has been how well the hearing aides will improve his current language development. Another thing I've considered is when Isaac was 4 months old he passed his NICU hearing exam as well as another exam when he was around 6 months old. He didn't start showing possible hearing loss on the tests until he was almost a year old. The audiologist said they are not clear as to if the loss could be from built up of fluid, wax, etc. in the ears, in which the ENT removed tons of blockage in July. Another concern is that Isaac is extremely sensitive to sudden high pitched noises. In fact certain loud toys will throw him over the edge. It's funny when I have to tell my daughter "no squeaking around your brother." So I'm not so sure how well he will tolerate the aides.So, that being said, we are going try them out. What do we have to lose? Right?Isaac finally got a stander of his very own on Thursday in blue! I will be sure to post pics in my next post. I have a yucky head cold this weekend so I've been bathing myself in hand sanitizer and hoping that Isaac doesn't get it!-Colleen
Isaac has a full medication schedule this week due to his lungs being "junky." We thought he was out of the woods with the Tobi last weekend, but by the time we started discontinuing it he didn't sound so good. I called Pulmonology on Monday and they put him on antibiotics, Tobi and frequent neb treatments. I can't wait until we are done with this crazy schedule so that we will have more time to play. It's no fun sitting around getting neb treatments all day. On the other hand I will do just about ANYTHING to keep this boy out of the hospital and away from those icky hospital germs.
Isaac is still his happy-go-lucky self and when we have some extra time we have added "art time" to his everyday routine. He enjoys watching nurse Lynnie guide his hand as they paint a water color picture together. Here's a picture they painted together of Isaac. He was looking very intently at it. 
Yesterday I was guiding his hand with jumbo markers and he was laughing at the squeaky sound it made. Silly guy!
-Colleen
She's a purebred chocolate and we bought her for Easter when my daughter was 4. Aside from trying to keep the hair out of Isaac's trach, she's the best dog around! Oh, and she loves all of Isaac's nurses.
