Grant's Journey

Happy Birthday Grant! For your second birthday, we had a very low key celebration, but that didn't make it any less special! Both Grandma's joined us and we played all afternoon. Be prepared for picture overload.... I am definitely feeling a little bit nostalgic about Grant's 2nd birthday and I want to have all of these pictures to remember the fun day that we had (click to enlarge the photos, especially the collages)! We started off the party with a little game of fishing. I knew that Grant would probably not get the concept, but we did have fun with him trying to peek over the blanket and eventually he figured out that his make shift bungee cord pole could catch something! Grant caught a squirt gun! Grant loves shaking water on us, splashing us in the tub, and anything else that gets mom and dad wet, so this was a great idea! He wasn't quite strong enough to use his index finger to squirt us... ... but he did learn how to use his thumbs. The only problem was that natu...

Happy Birthday to the little boy who made me a mother. You are two today and as your parents, we can't imagine life without you! Today has been an awesome day. Two years ago, we welcomed our first son in the very early morning hours (12:23 am to be exact!) and our lives will never ever be the same! This year has been awesome for Grant. He has continued to grow and develop and catch up in almost every way. We were able to have a year without major surgeries, huge strides in oral eating, and have been able to watch Grant's personality develop into an absolutely charming little boy. This was our attempt at his two year old photoshoot. Unfortunately, despite Grant being born on the technical first day of Spring, it was still pretty cold in Idaho and so we chose the warmest day this week and gave it a try. Grant lasted about three minutes before he was so blue I had to try and bundle him up and see if we could get him to pink up. It didn't work, so we were home within...

We have been doing a lot of scheduling and rescheduling around here with everything going on, but I finally got that long anticipated phone call today. As long as Grant is determined to be a Fontan candidate, we are scheduled: MONDAY, MAY 16th!!! A few hours after they scheduled his surgery, we found out that the new Chief of CT Surgery at Primary Children's was announced today (we have been without one since a few days before Grant was born since Dr. Hawkins retired for health reasons). This news has me encouraged since they have anticipated that Grant's Fontan might need a little extra creativity to pull off. The new surgeon is named Peter Gruber and he is coming from Children's Hospital Philidelphia. He is supposed to start between May 1 and June 1, so our timing should hopefully be ideal. I have total confidence in Dr. Burch and Dr. Kaza, but it is always nice to have one more opinion in the OR. This news has been really great for me to hear today... the timing of sched...

We are all sick. Don't ask me how the germs found us since we have been quarantining ourselves all year, but it did. Grant showed the first symptoms a week ago and though he was not tested, the doctor believes that it looks and sounds like RSV, so it probably is. Thankfully, his Synagis shots (the very pricey monthly shot he gets to protect him from RSV) seem to be doing their job and are minimizing the effect on Grant. Unfortunately, Grant shared his germs with the rest of us and it has been miserable. My cold has deepened into a sinus infection and Kyle isn't feeling too hot either. Bummer. The worst part is that we had to reschedule his cath since they don't want to put Grant into surgery until his body is fully recovered. They told me he needed to be 4 weeks past his illness, so we had to reschedule for April 4th. I was ready to get some answers, but I would rather make sure that Grant will be safe, so 4 more weeks it is.

PRE FONTAN CATH SCHEDULED: March 11th I certainly hope that he qualifies for the surgery. I will be glad to get that worry out of my mind. I jump every time the phone rings. I will be glad when the surgery is scheduled too.

If you recall reading a few posts ago, we had a cardiology appointment on the 15th. I have to say, I was actually impressed with Dr. Williams, our cardiologist. This time, we walked in and he knew what was going on, and both Kyle and I felt a LOT better about it. Good thing. We need to have some confidence in him for what is coming up. I had mentioned earlier that I wanted to have a 6-12 month plan in mind so that I had time to plan our lives. We definitely got a plan, but not quite on the time frame I had in mind. After seeing Grant's awesome growth (27 lbs on their scale, 27.7 on our doctor's scale), and hearing about some of the symptoms he has (low sats, incredible clumsiness due in part to low sats, blueness, etc.) he told us that it sounded like Grant's body was telling us it was time. I figured we would hear as much, but I still anticipated that we would be looking at sometime late in the summer so Grant could grow and meet that *magic* 30 lb mark that is so desirabl...

In an attempt to recreate last year's CHD photo shoot (go HERE for a blast from the past!) I sat Grant on our bed just after his bath in hopes of capturing some precious images. He paid attention for about 15 seconds, but I was able to get a few of these great shots, so I am happy. I am now remembering how different life was last year with a baby who couldn't run away and climb off the bed! I take these pictures each year around Valentines day in order to spread some awareness of Congenital Heart Disease (CHD). In reality, by joining us and following along with Grant's journey, you are already very much aware of the impact of CHD's in our lives. 1 in 100 babies will be born with some type of heart defect. Many are not as serious as Grant's and go undetected sometimes for YEARS (think of the stories you hear about high school athletes going into cardiac arrests during games for no apparent reason). Many women do not get great prenatal care and miss important screeni...