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...

We hope that everyone had a wonderful Thanksgiving holiday! Want to know what we were giving thanks for? We sure love this little turkey! Despite offering smashed up sweet potatoes straight off mama's plate, this little man much preferred to eat his plastic toys. Silly. This was the face he kept giving us. Too funny! This Thanksgiving was truly a blessing as we contemplated how much we have to be grateful for. The emotions of this year were directly opposite of last year's grief, uncertainty, and fear. Grant, as a family, I know that many many people were thinking about you this year when counting our blessings. We are continuing on in the holiday spirit at our house! Kyle helped me to get our tree and decorations up this weekend too. We were so excited to get Grant from his nap so he could get his first glimpse of our lighted tree. We have yet to capture any truly amazing shots of him, but his reaction was not what I expected. We watched him mesmerized by the lights and he kep...

I am grateful for another month with our precious little guy. I know I say this often, but every time the 20th of the month rolls around and we celebrate another month under Grant's belt (or diaper!), I can't help but feeling incredibly grateful for each moment. We have had a busy week! On Sunday, my mom was watching Grant while Kyle and I attended church. During Sunday School, Kyle got a text that said "TUBE OUT COME HOME NOW!". Uh oh. We dashed out of the meeting in hopes that we could save the tube, but by accident, Grandma had the feeding tube under her foot when she went to lift Grant off the floor and it pulled out entirely. We called the on call pediatrician and requested that an order be sent to Primary's for a tube replacement. I ran back to church and tried to figure out how I was going to give the lesson in Relief Society (the last meeting of our block). My sweet neighbor told me she could handle it and so I handed off my lesson notes and materials and ...

I have been thinking a lot this week about how different our lives are this year compared to last. It was one year ago today that Kyle and I anxiously walked into my OB's office excited to know the gender of our first baby. I remember when she first told us it was a boy laughing, kissing Kyle, and then sending out a mass text to our friends and families. I knew the ultrasound was taking a long time, but we were too excited to care. I saw the technician's face drop and noticed her trying to distract us with questions while she kept trying to look at our baby's organs. We were taken back to a room where my kind OB told us that it appeared there was a problem with our little boy's heart. He tried to soften the blow by telling us it was possible that they were just not able to get a clear picture, but it looked as though he was missing some chambers of his heart. I was sobbing in his office and had to drop Kyle off at a class on our way home. We got in the car and just crie...

We have waited so long for the chance to actually feed our baby! We are starting very slowly and despite some coughing and sputtering, Grant seems to be handling it fairly well! Here he is with Daddy just before getting his first taste at home. Excited to give it a try and wanting to do it himself! Then really not too sure what to think about it all! In his first setting, Grant probably tolerated about 1/16th of a jar of sweet potatoes. Yay! CARDIOLOGY NEWS: We took a little trip yesterday to visit Dr. Williams, Grant's cardiologist. I was really hoping to get some of my feeding questions resolved, but Dr. Williams was quick to point out that since Grant has been fed to his intestines solely over the last 8 months, it was far out of his realm to make feeding recommendations. Bummer. We have an appointment tomorrow with Grant's pediatrician and Dr. Williams said he would make a recommendation to see a GI specialist to work on trying to get Grant's tummy to tolerate food in i...