Grant's Journey

Just a small sample of the Autumn Photo Shoot we had this week. These pictures make me happy. :) Oops! Looked like our trick of propping him in between the pumpkins and the couches failed! More interested in the leaves than in looking at mom and dad! I love this season! It came and went so fast here....we have a 100% chance of snow accumulation tomorrow. Good thing that my decorations inside can still reflect the season! We are holding steady and loving not having anything major right now. Grant has yet another swallow study scheduled for November 6th and a cardiology appointment on November 9th. Till then, we will just enjoy having our routine down! We have been giving Grant all kinds of textures and temperatures to keep his little mouth interested in food. Under the direction of his therapist, Grant has also been trying some different tastes. We are running out of ideas on foods that he can lick, but not get anything to have to worry about swallowing. So far, he doesn't care for ...

I really do have an amazing husband. After seeing reports of huge lines, riots outside of health department offices, and total chaos relating to all things Swine Flu, we were nervous. Kyle decided to go and check out the line that morning and ended up staying, despite the cold yucky wind. By the local news report, over 3,000 people (we don't live in a huge metropolis!)were lined up before the clinic even started and they only had 660 of the injectible vaccines. Kyle waited over three hours and then called me to come when he got close to the front door. I loaded Grant up, drove right to the front door, and with very little trouble got a nurse to come to the car for Grant's shot. See? That wasn't so hard! With the supplies being far less than expected, Kyle and I will have to wait to receive our shots and probably have to stand in line all over again, but at least that is done! Why they can't make appointments for a first come first served clinic, I will never understand!...

Another month celebration today for our little miracle man! At 7 months, he loves to chew on everything! Makes me wonder sometimes if he is part puppy! He has a little tooth that keeps threatening to break through, but then it sinks back down again. This could be months of effort for this first tooth! He has also made huge gains in the last month in his ability to tolerate his tummy. He had so many restrictions for so long after all of his belly and heart surgeries that it is wonderful to keep him on his tummy for longer than a minute without instant tears! He still doesn't love it, but we keep practicing all day long because strengthening this group of muscles will hopefully be our ticket to passing his next swallow study! Lots of pictures of the tummy moments just to prove to our OT that he does tolerate it at home! Grant is no dummy....when she comes over to work him, he is so stubborn and cries till he turns blue so that he gets to be picked up. Then, he immediately flashes he...

There are a lot of really great people in the world. We have always been the family volunteering to bring dinner to others who are sick and trying to take care of other people when the need arrives. I love this type of service because it makes me feel so good at the end of the day! Since we received news of Grant's diagnosis, it has been interesting to be on the other end of the acts of service. So many people have reached out to our little family offering help with cleaning, organizing RV's for our hospital stays, mowing and watering our lawn while we were gone, meals when we were too overwhelmed to cook, visits on days we were down, financial gifts to help us with the burden of medical and travel costs, offers to run errands when we are homebound, thoughtful cards, etc. Many of these selfless acts have been anonymous and for that I regret no being able to personally thank the many who have reached out to our family. Just before Grant's Glenn surgery, I was contacted by J...

For those on the Wasatch front, yesterday was a crazy day. The weather dropped by 40 degrees overnight and we woke up to rain mixed with snow after a balmy month of September. For our household, we had even more surprises in store yesterday. I woke up to Grant's feedbag alarming that there was no flow to the pump. I grabbed a syringe of warm water to flush the line (an everyday occurrence) only to find it clogged. Not a big deal since we have been battling clogs with Grant's new tube for the last month. I have never had a clog that I could not break. After trying for an hour, I called Kyle getting a little concerned. He didn't have any suggestions and so I just kept trying. After 3 more hours, I had soaked through three towels with water that was backing up through the line and spraying all over. My best friend brought me some Coke at the direction of our homecare technician to try and break the clog. After trying that for an hour, I had made no further progress and instead...