Wednesday, December 30, 2015
Even though I started a new blog I have not and will not fully abandon this blog even if I haven't posted for a while this is still a place to talk about my boys. Now yes A's heart is better and overall we have it much better then most chd families, I mean just read and cried over a four month old boy who lost his fight this morning. Gives the bigger picture, my boys are sick again and A keeps coughing to the point of throwing up. He has always had a sensitive tummy. He is also behind with some things still trying to potty train this kid. He knows how he's just stubborn about doing it Need to start pushing him harder with it just hard to when he's sick and miserable. Ok off to take care of my boys hopefully post again sooner then my last gap.
Monday, December 28, 2015
Saturday, September 13, 2014
It's been a year, one I can not fully explain. It's been hard very hard at times. There have been some major lows death of my mother in law and my job burning down. Also some highs two of my cousins welcomed new lives in there life A's last surgery went so well.
The last few days have been no different. On Thursday we took A in for his heart appointment. He did so well when they got the medical braclet out he held out his arm to have it put on and opened his mouth when asked. He didn't even cry when they put the IV in and was giving high fives with that hand minutes after. What a little trooper! It took less time for the medicine to work on him before he was asleep do they used less which meant he woke up sooner afterwards. The cardiologist is very happy with his heart and by this point the device closing the hole in his heart will stay in its place. Also his coarctation repair looks great which means they do not need to see him for at least a year to a year and a half. Also no more sedated echos.
My grandfather has been in the hospital the last few weeks and moved to rehab. Last night my mom talked to him telling him how well everything went for A. He was so happy to hear that he was doing so well. Sometime during the night my grandfather had what they suspect to be a stroke and he died this morning in his sleep. RIP grandpa.
Tuesday, September 2, 2014
Last few days have been busy! Connor turned six and had an outer space birthday party.
And lastly but definitely not least I just dropped Connor off for his first day of Kindergarten. Hope everything goes well do nervousness for him. Big, big day!!
Saturday, August 23, 2014
I'm laying here listening to my son sleeping knowing how beru lucky we are he is here alive and well. If we had him say thirty years earlier would he have survived his first year? I'm not sure. If the ultrasound technician hadn't second guessed the twenty week ultrasound I'm not sure I can say we would be in the good position that we were in. His story had the potential to end much differently.
Four heart babies have died this week. I... It kills me to think about this. They never made it to the first birthday most of their short lives was spent in the hospital. It just isn't fair. But who said life was fair? Because it's not. This year has shown me over and over that life simply is not fair and it is not always easy.
I mean let's look at this way Ausen is alive partially due to the Loss of another family. During his open heart surgery his heart was stopped and a piece of his tiny aorta was removed and replaced with the tissue of a donor. Somewhere out there is a family who I owe a debt to one that I feel can never fully be repaid. I know I am rambling right now it's late and a just ache for the families who have dealt with a lose I can not fathom. My boys are my life and all I can say is thank you, thank you for donating. I will do the only thing I can think if to pay it forward be a donor myself.
I wish more people saw how the world I have been thrown into can be. I am and always shall be a heart mom it has changed me in ways I did not know where possible i and my husband find ourselves when talking about heart kids as just saying our kids. How frustrated we have been in the lack of funds for research . People have asked me what caused Aiden's heart defects simply put we have no idea most of the families who have children with heart defects do not know . It just happens and without proper funding and research we may never fully understand.