Yesterday was Lexi's checkup,she was pretty excited to have a nurse look her over! she weighs 30lbs and is 37inches tall! We followed up on her heart murmur which was still there Doctor said it was innocent but he will be watching it as time goes on.For her behavioural issues, it's all apart of her not fully understanding that her brother is gone and not comming back.Putting her therapy would be pointless at this age cause she wont understand that either, maybe later in life.For now i was told to discipline her as normal and not let her get away with everything just because she's mourning her brother.At times i would feel bad for putting her time out and listening to her yell and cry.But we can't let her run us.Before we left for the appointment she really thought we were going to pick nolan up to bring him home. It's so heartbreaking having to explain to her all over again.
After her appointment we headed over to the Stollery to drop off Nolans borrowed heart/oxygen monitor,feeding pump,and suction machine...walking into the doors of the hospital that we visited during nolans sick times and surgery i didnt think i would feel so empty :( it was exremely hard.Like i just wanted to run upstairs to see if he was okay, but i still know conciously that he's gone.I talked with his nutrition team about what happend as they were all so shocked with nolans passing, but also shockd he lived 19 months! and the things he accomplished were just amazing.I know that going to that hospital will never be easy as our last memory of him alive was there and him passing was there as well, its just a place that he sometimes needed in his time of sickness.we will always miss him.
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