Grant's Journey

If you check our family blog, you have already seen these fun photos from my photo shoot with Grant last week, but it was probably time for an update to the heart community as well, so we apologize for the redundancy in the pictures! My last post a month ago was just prior to heading into our cardiology appointment which I felt like was kind of a waste of time. It is a bummer to meet our cardiologist at a hospital closer to us where they do not do any testing. Our appointments are basically a chance for us to discuss any problematic symptoms and then be sent on our way until something sounds problematic to warrant driving to Salt Lake for testing. We did finally get some answers regarding our desire to try Melatonin with Grant. His poor sleeping was doing me in. Our cardiologist told us that we could start him with a very low dose and then monitor him for several hours to make sure his heart rate was stable. Grant had no problems and we have used it at bedtime a few times a week for th...

My little Skeleton is taking a quick nap, so I will try to get caught up for a minute! Isn't this outfit hysterical?? Too bad they don't have an anatomically correct for Grant version...that would really be something to laugh about! It has been over a month since I have posted to Grant's blog which I consider to be a blessing as it means that we are in a pretty normal routine right now! It is very humbling to me to see Grant doing so well when there are so many others who have lost their fight with serious congenital heart disease just this week. I have taken moments to squeeze him a little tighter and thank my Heavenly Father for giving us this wonderful time with him. Grant is now officially 18 months old (as of September 20th, so yeah, I am a little behind!) and he is very much acting his age. Our physical therapist commented to me this morning that he thought Grant was completely on track with his fine motor skills and we are close to catching up with his gross motor sk...

I thought it was about time that I added a little update about the #1 thing happening in our lives right now...GRANT! Moving closer and closer to the magic 18 month mark has brought its share of joys and challenges. A few things about Grant right now: Favorite toy: Utensils. Any kind. This kid will demand to have a spatula, wisk, or spoon with him at all times. We can keep him entertained for hours with a basket, some blocks, and a long spoon to stir them with. Biggest accomplishment: Pushing his walking toys around. Grant is very skilled at the whole walking thing, but refuses to get the confidence to take a step on his own. He will take his push toy, walk it over to the couch, park it and walk all around, then go back to the push toy to let it guide him to where he wants to go. Verbal skills: Grant has started signing a lot in the last week or so. He will now sign "More, Food, Please, Thank You, Drink, All Done", and has started a few new signs of his own that we are not qu...

On August 13th, we were fortunate to attend the Intermountain Healing Hearts family heart camp. This is an event that IHH sponsors for families and individuals affected by CHD's to come together and enjoy fun and bonding. We really wanted to attend last year, but it was held the week after Grant's Glenn surgery (can you believe it has been a YEAR!!). This year, we made it a point to go and we had a blast! Camp Wapiti is maintained by the Utah Elk's Foundation and each week, a different group of kids with chronic health problems get to come to camp. They have a full medical cabin with hospital beds to help accommodate needs of the kids and we were fortunate that no one needed the nurse on staff for anything serious! The area has a ton of cabins as well as a huge lodge for meals and activities. Isn't this place beautiful! When we arrived, we loved catching up with many of our heart friends as they arrived. We had a great dinner together in the lodge and then most everyone...

Cheering on the family "Minute to Win It" games... We have a lot to catch up on since we got home from Grant's cath! First off, I have not had a chance to express (since Kyle wrote the last update) just how grateful we are for how well things went. We were literally shocked at the results considering that just before that, we were told that the state of Grant's veins left us with almost no other options for his care. What a relief we feel now. Whether things were really that changed in three weeks or not, I prefer to recognize the wonderful hand of God in our lives once again and His ultimate power to heal. After Kyle posted about a new possible surgical option (the AV Axillary Fistula) for Grant our primary cardiologist came by to talk to us in our room. He told us that he would really advise against the fistula procedure because in his opinion, it puts too much strain on Grant's single ventricle. We were again told that he would not qualify for the Fontan as t...

Allison is holding Grant while he is recovering from the anesthesia so dad gets the opportunity to update the blog. After only 1.5 hours from the time we left Grant in the cath lab did we get the page to go down and talk to Dr. Cowley and the fellow. Everything Dr. Cowley had to tell us was great news. First, the procedure was so short because they didn't have to do anything - no balloons, no stents. The width of his arteries at the scar tissue measured 5 mm where everything else is 7 mm so there wasn't nearly as much narrowing as was perceived from the echo Grant had 3 weeks prior. The other good news is that the pressures in the arteries were still well within the normal range and right where they should be. This news was happily received and much better than we were expecting. Since no work had to be done with ballooning and placing a stent, Dr Cowley had some to explore what else might be happening inside that little mystery/miracle son of ours. Time was spent analyzing his...

We arrived at 7:30, got Grant back to the cath lab around 9 am and now we wait. It is nice to know that some things are predictable. Our favorite hidden alcove was empty as usual, the hospitality cart came around at the same time as always, and Kyle was able to get his chocolate milk from the same wonderful lady. On days of worry, it is nice to know that some things just don't change! If they are able to place the stint, we will be around 3-4 hours. He will be done sooner if they can't get the access they need. Grant was pretty grouchy this morning. No food and lousy sleep will do that to a little boy. At least he flashed a nice grin just before they took him in. Thanks for all of your well wishes and prayers today. We truly appreciate your support.