Well for the most part all I have to report is good news! Z is up another 7 oz in 7 days and is right on track in the gaining area. He is 10lbs and 14oz and is finally needing to go up a size in his clothes!
He truly is a happy little guy and just lights up when he sees Jonathan. He is developing quite well but does have a few delays. He can't support his head 100% yet but he is trying. He did manage to pull the 2 stitches out of his broviac line. They were the stitches to hold it in place. He also pulled a little bit of the line out as well. :-( But the nurse said this is common and we just double taped him. It appears that is his favorite spot to grab!!! Also, because his blood counts were so good on 3/6, he only has to have blood drawn every 2 weeks! This is a huge milestone in my book!!!
I have not asked Dr. Rob how long the line stays in but I am assuming it will be at least 6 more months. I am fine w/that. I want my little man to be fine before they take it out. I have a few question for Dr. Rob but haven't made an appt or called him yet. There are 2 other illnesses that appear to go along w/JMML. Not in all cases but it can happen. One is called Noonan's Syndrome and the other is NF1. I have read up on these and he does have some of the symptoms of each or it could simply be that this is the way he is and not be related to those illnesses at all. This is why I fear calling Dr. Rob. I want to enjoy the fact that JMML is not rearing it's ugly head yet. I don't want to rock the boat just yet. In time I will ask these questions.
Jonathan and I are battling colds. We thought Z had it too but if he did it came and went within 48 hours! His reflux cough is getting a bit worse so we may have to call the GI doc again. I was out yesterday with him and several people made comments on how small he was and "Oh my listen to that cough? Does he have a cold?". I swear sometimes people look at me like I'm a whack job b/c he looks like he is 4 wks old and sounds like he has the croup or something. I bit my tongue and said he was 4 months old (well this friday) and had reflux! I have enough to worry about with him and don't need other people adding to my worries. Yes, I am starting to get a little bitter about all this. I tried for so long not to be but I am so tired of worrying, getting myself so upset and angry and taking it out on the wrong people. I don't sleep at night and can barely function. Just when I feel good about Z, something or someone freaks me out. This past weekend was really rough on all of us.
Anyway, that is our update and we should have more this weekend! Have a great week and enjoy some green beer!!!
2 comments:
First, big HUGS, then my 2 cents. {{{{{{{{{{{HUGS}}}}}}}}}}}}
Those kind of inconsiderate airheads piss me off. Not to be mean (and you know when I say that, I'm going to be), they need a heaping helping of shut the f*&^ up. First of all, they have no manners; secondly, they don't know their butts from chocolate pudding; and finally, they're taking up good airwaves that could be used for real information instead of useless blahblahblah. I know it's hard, but I would ignore them. Who cares what they think or say? Like the Zen coan says, he who knows does not speak; he who speaks does not know.
Z is a sweet, strong boy. He is gaining weight by leaps and bounds and his blood counts are good. He has the love and prayers of more people than most any of those butt-tards will in their lifetime. So next time anyone makes a stupid remark to you, ask them from me if they can spell Vapid, Tactless, or Boor.
Love,
Judith
Yeah - what Supergirl said!
((((HUGS))))
Post a Comment