guess we bored chocolate though :)
melanie is seeming to feel somewhat better. her blood pressure is better since going back to the 100 mcg clonidine patch. she is still on edge occasionally and had a bad headache over the weekend as well as the usual tummy pain. she is doing more playing though. today, however, she started with a cold (ethan and i both have colds) and her voice is very hoarse. she had trouble clearing the "junkies" from her lungs and asked for her inhaler and CPT (chest physiotherapy) a couple times today.
melanie and ethan are both getting very good at reading dick and jane books. this weekend they were both laying on the floor reading a book together. so cute!
my parents neighbors, ron and sue, recently celebrate their 50th wedding aniversary (congratulations!!) and sent some cake with my mom to give us. yum! we sure enjoyed it! and melanie had a great time feeding me a piece and breaking a piece up with her hands.
i took the boys to the beach this evening. they had a great time! melanie was so sweet before we left. she asked where we were going. i told her we were going to the beach. her eyes got wide and she said, "the beach! will you take pictures for me so i can see the sand and the water and the boys playing there?!" she would absolutely love going to the beach, but that is not possible with her central line and other tubes. it was just so sweet and heart-breaking to see the excitment on her face and her simple request for me to take pictures. sometimes the reality of how unfair this all is hits harder than other times. it was a great joy to take the boys to the beach tonight, but i couldn't help "mourn" the fact that we can never go as a family and melanie will--in the forseeable future--never know what it is like to go to the beach. i usually try not to dwell on those things and not let them bother me, but it got to me a bit tonight. must have been bugging the boys a bit too. at one point brandon said, "ethan, do you miss melanie?" ethan said, "yeah." brandon said, "me too." then we we got home ethan alarmingly said, "mom, did you take pictures?!" then, remembering he said, "oh yeah, you took lots of pictures for our little sweetheart." he wanted to make sure there was pictures to show her in the morning. 
melanie SATS are down a bit tonight, will go put her on some oxygen.
brandon continues to wake up quite a few nights a week feeling like he is going to throw up. i haven't yet found a consistent correlation in activity or what he eats, but it is definitely not fun and makes for little sleep.
here are some pictures from last friday at my parents house:
a cousin/sibling huddle!
dylan and ireland, brandon and ethan ready to go to the pool (it's an outdoor pool and too hot for melanie, so she stayed and grandma/pa's house and rested)
No comments:
Post a Comment