Grant's Journey

Grant's favorite new face! This post is sneaking in as my last of 2009. We hope that you all have had some good moments of reflection over the events of the last year. We know that it is forever a year that changed our lives and we are looking forward to the coming year and all of the adventures that it will bring! Christmas this year was wonderful. It was the first for us in so many ways.... Our first Christmas in our own house (not a rental), first with Grant, and first time we did not have something tainting our ability to get in the holiday spirit (thesis, finals, an unknown diagnosis, etc.!) We had so much fun making our own holiday preparations and I got a big kick out of watching Grant play with his new toys. We had our own family Christmas just the three of us and then went over to my parents to open presents with Aunt Kellie, Uncle Spencer, and Grandma and Grandpa W. So much fun! Then, after Christmas, we decided to take Grant on his first snowmobile ride! Kyle and I wante...

Another month milestone today...Nine full, chaotic, and wonderful months. At nine months, Grant is continuing to learn how to sit independently, eating high flavored foods 2x a day and tolerating about 2 oz per feeding. At last week's feeding appointment he weighed 17 lbs 9 oz and wears mostly six and nine month clothing. He is still fed via NJ tube and receives 30 calorie fortified breastmilk continuously 24 hours a day. We started teaching Grant to drink thickened liquids from a small cup this week and he is taking to it very well. He has learned how to smack his lips and loves to do it since he knows it makes us laugh! He is now babbling in consonants and his favorites are "yayayayayaya" and "mamamamamama"...makes me hope that he might decide to call me by name one of these days! He plays his own version of peek-a-boo by pulling a blanket over his head and then immediately yanking it down and looking at us expectantly with a big grin. Funny little guy. :-) Th...

The feeding game has not been going well at our house. Even after Grant passed his 6th swallow study, it seemed like he only wanted to eat for the first 2 days and then we were back to nothing. We finally got an appointment to work with a feeding expert who works at a hospital about 40 miles from us (a LOT closer than going to Salt Lake!). We have now had 10 days of consecutive feeding and I am THRILLED! Sidena (our feeding therapist) was not intimidated by Grant's case, but was also very cautious to start since the risk of him aspirating and not breathing is high. In our case, Grant's stomach has never been fed and is so atrophied that he does not know the sensation of being hungry, so she suggested that we instead have to get him to want to eat based on flavor. We had previously been told to work with stage 1 baby purees and nothing was working. Sidena told us that a more shocking taste is appealing to kids with oral aversions and feeding delays. She suggested using sour thin...