Grant's Journey

Anniversary day today! One year ago, we held our breath, said a prayer, and took our sweet little boy out of the hospital and HOME for the first time ever. I was scared out of my mind. It was the first of many sleepless nights, worries about medication dosing and timing (he went from 13 meds given at 6 different times a day and finally to our current 4 meds given 2x a day.) and worries about whether we would make it to the next surgeries. I am so glad to say that we got it figured out, and have been lucky to avoid lengthy hospital stays for the most part since! Happy Homecoming Grant! Today it would sure be nice if you would celebrate it by sleeping through the night, but since you have come down with a pesky case of croup, I will just be glad we are at home!

Grant wants so badly to be on the move. Our PT and OT have been working with him for months to try and get him to crawl. He is finally getting close and last week, he made his first ever connected arm and knee motion on his own. He will regularly get into all fours now to reach further for what he wants, but has yet to start getting himself around the house. For now, he settles on yelling at us until we pick him and and move him the direction he is pointing. Silly kid. The ultimate bribery for crawling... a few puff cereal pieces! Click the picture to enlarge it, but notice in the bottom right corner...this is how Grant initiates every crawl. He likes to sit Indian style and then just rolls himself up and over, still leaving both legs in a very awkward crossed position! It is pretty funny to watch. He also wants to pull to stand. His endurance is still not great, but give him a few more months and he will be cruising furniture with the best of them! At our last weight check, Grant was...

I had the fabulous opportunity to attend the Intermountain Healing Hearts luncheon a few weeks ago (I am just slow to get around to posting about it!)When I first heard about the event, I told Kyle that I really wanted to go and see if I could catch up with some of the dear friends we have made along our heart journey. There is nothing like swapping stories with a mom who can truly know and understand what daily life with a heart kid is all about. We woke up early on Saturday morning and drove the four hours (plus a little extra break time for Grant, our terrible traveler!) to get to Gardner Village for the event. As a collective group of over a hundred other women personally affected by Congenital Heart Defects, I felt strength in numbers! I only wish that I had the camera for the full event (I sent it with Kyle and therefore only got pictures after most everyone was leaving!) Margaret Cardall (mother to our heart buddy Paul) was the keynote speaker. She shared what it was like to be ...

Wow. It has been a little while since I wrote a Grant update! Perhaps that has been because some of our recent activities have been a little less than happy. Look at this little face and I bet you can imagine why I haven't blogged! After all of the birthday festivities and then a weekend to go and meet our newest nephew, we came home excited for a week of "normal". It was not to be! I took Grant to the doctor for his well child check and things were looking good. He weighed 19 lbs 8 oz, showed our doctor that he was still holding his own without a feeding tube, and we got sent home with a pat on the back! Within about 6 hours, Grant started throwing up. This was the first time we have ever seen Grant really throw up. His Nissen procedure was supposed to prevent him from being able to throw up, so we were surprised when he kept puking absolutely everything up. I figured it was a reaction to his shots, but within a few more hours, he was burning up and violently throwing up...

Our sweet heart friend Mason was given an Easter miracle this morning! He has been waiting for a heart with his mommy in California, far from the rest of their family. The whole family has been together for Easter and his sweet parents, Summer and Mark received this wonderful news last night. Mason is in surgery right now. Please pray for Mason and join with us in celebrating the wonderful Easter day that it is today. Jesus Christ indeed rose from the tomb so many years ago so that we can all be resurrected and live together with our family and loved ones eternally. This miracle again testifies to me that God is a God of miracles. Our prayers are with you Mason as well as the wonderful donor family that are grieving the loss of their own sweet child today.

Happy Birthday Hercules!! Grant gave us the best birthday present of all this week ... do you notice anything??! If you guessed the absence of a feeding tube, you would be CORRECT! Can you believe it? We were with Grant at the cabin last weekend and when we got home on Saturday night, Kyle and I were busily putting away our gear. We heard a scream and both went running only to find Grant with his tube pulled out. I had been working with him the entire previous week on oral feedings all day long and then making up the difference in his night drip. He had been doing so well with it that we made the decision to leave his tube out for the night and Sunday and then call our doctor Monday morning. He was about six ounces short of his fluids goal Sunday night. Monday he was continuing to do well and our Pediatrician agreed to let us continue to chart his fluid intake, calculate his calories, and come in for weekly weight checks to make sure we were on track. To say that I was elated is a h...

While going through my pictures this morning, I was in shock at how much Grant has changed month to month. That is the miracle of the first year...small changes that amount to big developments, so gradual that I barely even realized they were happening. You can click on each picture to make it larger. I apologize...the text got moved over his face in some pictures when I shrunk it down...just ignore it :) I will try and fix them later, but for now naptime is over! Birth: very traumatic day for Grant... a few hours after this picture was taken, Grant coded for the first of what would be many many times. He proved to us on this day that he would give us a run for our money! One month: had already survived his first open heart surgery and had made it through a few GI surgeries. He would show us that his tummy was not done having problems and would go onto another emergency tummy surgery days later. This time, our nurses thought that for sure he could not live through it as bad as he was. ...