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Duh... okay, I have just caught myself failing to read posts carefully before I respond.  Sorry Amber, you have already said that you don't have a laptop.  <img src="i/expressions/face-icon-small-blush.gif" border="0">

Probably too late for you, Amber, but for the record, some hospitals now even have wireless networks or network ports in rooms.  If you have a laptop, and are a computer nerd like me, bring your computer.  I was able to sit in my room and upload photos and updates to our family web, so out of...

One other suggestion; most of Vinny's needs will be met at the hospital, so be sure to bring what you will need to keep yourself in shape. In addition to clothes, think about food and drink for the times that you have no one to relieve you. Actually, these are great things to ask others to...

I really appreciate the suggestions. I should explain, though, what I mean by keeping things fairly private; our reasons for being fairly private have to do with concerns about employment. I am an untenured professor. I would prefer if my children's condition not be used for or against me in...

Bring in things from home. We absolutely moved in during our hospitalization. For a long stay, it can be hard to keep them out of the playroom. I posted some other suggestions on your last thread on how we managed that, (good hand washing, avoid others, wear a mask), but most are echoing the...

I tend to agree with the idea that "what is best for a child" depends on many factors, all of which tend to get oversimplified because we all tend to judge others by our own positions in life. I am the child of a woman who worked, not of necessity, but because she loved her job and was...

Lindsey has great advice. I heartily second her suggestions about hospital stays, although our hospital would not let us use our own meds for some things. Our clinic was great about coaching us before our daughter's hospitalization. Definitely be aggressive about handwashing. There will be...

I think you are really very wise to be concerned about cost. My doc always says "you can't let cost drive your decisions about medical care," but the fact is that I can't take care of my kids if I don't think about how I can afford to keep them getting the care they need. First, when you talk...

I just posted elsewhere that my youngest, who has tested as pancreatic sufficient and so is not on enzymes, is 23 months and 24 pounds. And that puts her at a better BMI than she has had for a while, but nowhere near the 50th. At one point, she was about the 2nd percentile. She went for about...

33 pounds at 25 months? Sounds like you are doing great to me! I have a 23 month old who is pushing 24 pounds... of course, she is also very short for her age, so there is that. I reassure myself daily that she has a tiny, tiny bone structure and the genes of lots of very petite people (not...

You might consider asking about the vitamin levels. My youngest will be two next month, and has been followed at the clinic since she was 9 months. That was one of the first things they did, and the dietician always goes over that data with me each visit. I would suspect that they are...

I second Amy's recommendation. Also, it was recommended to us that we put a really good air purifier (a HEPA filter, no UV lights) in the bedrooms. Our allergist said that we should think of the bedrooms as the 'safe havens'; keep the air in the room clean, vacuum and dust frequently...

I think we have all faced the kind of fear you feel. Remember, though, that if it is CF, that treatment has come a long way, and it continues to improve. Also, there are lots of shades of grey with this disease. If he has not had any lung issues yet, that is a really good sign, because the...

I agree with the others. The one positive test should be enough to merit a genetic test. They are expensive, but most insurances will cover it. As I described in another post (heterozygous, but CF), I have two children that are, according to the old logic, "just carriers," and both with sweat...

Thanks. I will look at your blog. The 2 yr old has cultured twice for very small amounts of psuedomonas. Since the amounts are so small, and her sister has also had psuedomonas results, the question is whether this culture reflects bacteria in her LUNGS, or trace amounts due to routine...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bmombtoo</b></i> In Baltimore we are under an excessive heat advisory and they recommend you be cautious. The elderly, young children, and people with illnesses should take caution especially respiratory. Also we have a code RED...

There certainly is a parallel; I will respond in the thread to your post.

I meant to mention in my last post, for what it is worth: my youngest (2) had a sweat chloride of 11, but the same genotype as her sister, who has a sweat chloride of 49 and the classic lung problems of CF. The little one doesn't have the same lung problems (so far, at least) but is being...

Yeesh, I really CAN relate to this. I think part of what is happening is that they are learning more and more about CF, and that means that they are finding more and more children like ours that do not fit the classic assumptions, but who are having symptoms related to CF mutations. I hope you...

My daughter is starting Kindergarden this fall (all day), and I was wondering if any of you had any tips for handling care at school and/or warnings about things we should watch out for. At this stage, we are very open with our daughter about CF, but fairly private with others outside of close...