Archive | July, 2015

June 2015

15 Jul

Cameron turned 4 years old last month and we all celebrated our Baby Mogg. We had some great birthday celebration(s) for Cameron! A few homemade birthday cakes and then a big kid birthday party with Grandma ‘Gamma’ Mogg all themed at an iPad game Cam plays called Plants vs Zombies. Cam is just so amazing and fun, very out going and kind we are just so proud of him and all he has overcome these 4 years! Cam will be attending preschool this year. I’m in complete denial and do not think I can acknowledge those Mommy emotions until the last possible moment. 

Cam went to his cardiologist visit last week so we have that update where he had an EKG and Echo done. He is 99.5cm tall, weighs 34lbs and on a side note almost caught up with vaccinations just one pending. He did great with the check up and the EKG stickers seeing the wires but when it came time to lay on the hospital bed we hit a touchy spot. Cam did not want to lay down on the bed and had a little melt down (understandable after all). He even asked if he could sit up for the Echo test, but with some help from Daddy distracting him and Mommy laying with him we made it through the Echo. After some complaining we were able to lay down with minimum crying but many questions of ‘Are we done?’. They put a fenestration or hole in Cam’s heart during the Fontan surgery last October to help relieve some pressures. They tried and tried during the Echo to find the fenestration but it has apparently closed on its own some time since our last appointment in February. 

I need to correct something I posted earlier about the Doctor’s expectations for the fenestration or hole they were monitoring from the Fontan surgery. I am now under the impression that they actually wanted to keep the fenestration open until they were ready to back off the Coumadin and allow it to close on their schedule. However, the fenestration has closed on its own as of now so we are to monitor him that his body and heart can handle this change. They do think Cam’s body and heart is handling the fenestration closed now but we were instructed to monitor him for any swelling, coughing with flem or any stomach issues resulting in diarrhea. Our next cardiology appointment won’t be for another 6 months (knock on real wood). Again, it is ok that the fenestration has closed and they would not do anything to him as long as he can handle the change. However, they would have preferred to make that decision rather then it happened on its own.

We are no longer on the Coumadin and we no longer need blood work done to test that medication level. I know Cam and I both are way past over the blood work pinches (We call shots, pinches)! The blood work was almost weekly since last year as his level was always on the lower side of 1.4-1.6 which they wanted it between the 1.5-2.5 area. The medication itself I don’t think was difficult for Cam to take every day just a pill or two once a day depending on the dosage and some obvious bruising on his legs because he is a boy and plays rough. It was the blood work that requires a small child being held for a shot in his arm which made it difficult for me to handle, watching him struggle and cry over it each time was hard.  

I have to say Cam was always a strong big boy when it came time to go get blood work done. He was always completely aware when we pulled in the parking lot at the clinic what was going to happen with the shot. Now I did distract him with a guarantee of a new Lego toy character with each shot and that seemed to help sometimes but there was always understandable tears and crying during the pinch. Our collection of super hero and villain Legos is sadly most extensive now. Cam would sit with me in the waiting room very patient but always concerned when they called his name as he knew it was his turn for a pinch. The staff knew us well at the St Tammany clinic from our all too many visits for blood work so I can say that I will not miss doing any of those pinches experiences and I know Cam feels the same!  

On the subject of Cameron’s little brother Wesley Raider Mogg our Baby Mogg 2.0 we are at two months old and about 8lbs on enfacare 22 calorie formula recently switching to Gentleese. We are trying to take vaccinations slow since he was premature at 35 weeks. We are in transition of baby bottles to the Dr Browns type but that is to help with gas, a normal baby issue. Besides that all is good for Wes (knock on real wood again… I know this is silly to put here and type up but I’d rather be safe then sorry)! Cam is an amazingly sweet big brother always checking on him, helping with his lost pacifier and constant hugs and kisses.

We all really enjoyed celebrating Cameron turning 4, it would not be possible without all the hard work and dedication from the amazing Surgeons, Doctors and Nurses both current and all of the past research too from the families before us! We could never express our gratitude enough for them saving our son’s life. Cam is a special light in our world and we are most thankful for him! As always thank you all for the continued support and prayers for our family, it has been a very long 4 years handling the HLHS journey but completely worth it to have Cameron with us and share his joy of life! Sometimes I feel like we should celebrate every moment of every day and that’s just what all of this has left impressed on me anyway. If there are any further updates on our Baby Mogg past this point we will do our best to post for all those following us and our HLHS journey, post Fontan third and final scheduled surgery. 

Speaking of Fontan a very sweet family is going through recovery after the Fontan with their heart warrior Dylan.  We first met the Dishons in the CICU at Chnola when I was pregnant with baby Mogg and they were a true positive guiding light for us!  Please say an extra prayer for them, thank you!