Hi you all. It's been a while. Hope all is going well.
All is good here. Anna and Rachel both had checkups since we last posted and both are doing good. We'll be leaving on our trip to Fl. next Sat. We are all excited to be getting out of here for a while. Nebraska is kinda lonely. The closest family is 10 hrs away. We went to a couple of the college world series baseball games last week. My team (Texas Longhorns)didn't make it this year. It was fun going though.
Anna has finished up her driver's ed. class and got her license last week. She's a happy girl. FINALLY, something to get her mind off that port of hers! She hasn't brought up the subject of her bathing suit in a while. All I can say is she darn well better wear it while we are in Fl. Even if she wears a t-shirt over, I don't care. Susan, you asked once if we go every year. I can't remember if I ever answered that question. No, we don't. We went last year during our move from Ohio to here (we took the long way to Ne.). We visited my now deceased mother-in-law and my brother-in-laws. This year we are going because Anna is an aspiring model and she has a conference so we figured we'd make a vacation out of it and then my youngest brother-in-law got engaged so we'll be there for the wedding too. Two birds with one stone I'd say. Well three if you count a vacation too.
So how is Courtney doing? Are her father's orders to El Paso still on schedule? You said he'd be there around the end of July right? That'll be good. Won't it? Forgive me if I'm prying, but do you have a good relationship? Still it will make things easier on you and your family.
And your son Susan? How is he doing? Any more clues as to what's going on with him? Too bad the yogurt didn't work out. I can't even begin to imagine how hard it is for you to not be able to share your food with him. I can't recall if you ever mentioned him having allergy tests done. Has he? You know the scratch test kind. It sounds so simple but I don't know. I have no idea what kind of different reactions food allergies have. We had a friend, well my parents friends son. He was allergic to just about every kind of food. He took allergy shots that's all I know. He's outgrown the problem now. He was about 7 when I met them. It's a thought if it hasn't been brought up already. How are you doing? I know you had been having some trouble lately and were doing breathing treatments quite often. Any better?
Debbie, how are things going with you? I noticed you mentioned your son maybe not having as enjoyable time at camp this year. Do you think it was just the weather or him getting older? Has he said if there are older kids there, teens? I was just wondering if they lose interest at a certain age. You know kinda like scouts. My girls were really into GS until about 6th grade. Of course part of that may have been being in Germany. Were you ever able to get his meds done through the base pharmacy?
So ladies did any of you happen to see the Today show last week where they talked to a lady with three CF boys and about Glutathione? I was kinda excited at the prospect thinking if it wasn't harmful what could it hurt. I had missed part of it evidentally, the part about it being inhaled. I thought it was strictly oral and kinda like a vitamin. I asked at our clinic about it and they had a CF Foundation hand out for parents. It's not regulated by the FDA at all. Even as an oral supplement. But it does seem very promising. I just hope that they can get the ball rolling on it. Europe has already or getting ready to start trials on it so that's good. Kinda made me wish we were back in Germany. Well no, that's wrong, I'm always wishing we were back in Germany. It was just so nice there... (dreaming)Anyway, whether you've heard of it or not you should go take a look at the CFF website.
Well I guess I'll finish this up now. I have a cake to frost and Anna is cooking dinner so I need to go check on her. Since summer is here I've told the girls they each have to cook dinner once a week for the entire summer. During the school year there isn't enough time for them to do that, with school work and treatments. Debbie, does your son have time for "normal" chores during the school year? I'll post to you guys later.
It sounds like you are going to be busy next week getting ready for your vacation!!! I wish I was going!! Oh well.
I'm not sure why Danny didn't enjoy camp this year, there seemed to be at least 10 other boys around his same age. I'm sure with the rain and all, it made it kinda a bummer. He didn't say he hated it or anything, I just don't think he had as much fun as other year. I'm sure he missed all his friends too. Danny lives with my mom during the school year, she lives an hour away. Small schools just work for Danny better than the larger ones. I see him on the weekend, and alot of the summer. As far as the chore goes, he has chores. Granted his brother or myself have to pick them up when he's not here, but I do think it's important for him to pull his weight in the household. Just like getting his treatments done. I think since he was in the hospital a year ago Jan, it has really opened his eyes on how important those treatments are. We are real lucky that Danny has been doing really well. His next appointment is on July 1st. Danny really wants to talk to the docs about getting the vest. It doesn't matter to me one way or another. I'm pretty sure Tricare would cover it, otherwise, I would be not be so thrilled about getting one. I'll let you know how things go. As far as the meds go, Danny hasn't been seen as the base, so I really haven't researched it anymore. I know I should, I just haven't.
Enjoy your trip. I hope all goes well with you. And most of all, I hope everyone stays healthy for your trip. Take care.
chacha....i hope you have a great time on vacation!! I did not see the show about glutathione. My sister called me and told me about it. I am going to talk to Courtney's doc about it. Courtney is not doing so well the past week. Lots of tummyaches, and I am concerned because when she wakes up in the morning, and when she is active (mostly when we are swimming) she is starting to cough up mucos, and coughing a little. I have listened to her breath sounds and all sounds normal. Maybe I am just being paranoid, but it is scaring me. She is taking her enzymes like she is suppose to, but the tummyaches are coming pretty frequently again. We still have not heard back about her going to NC, so I think we are going to go see her family doc out here and make sure all is well. Everyone seems to think because I am an EMT I should know exactly what is going on with her, and exactly what to do. NOT EVEN CLOSE! Courney's dad and stepmom are still hoping to be here by the end of july. You know the military. Hurry up and wait. We all have a good relationship. I talk to Hope (the girls stepmom) more than the ex. I love her to death. She considers my girls her girls, and loves them so much. How could I ask for more. When Courtney was diagnosed she was the first one to say that they needed to get stationed out here so they could be close to her and her sister.
Debbie....i did not realize that you are military. Where are you stationed? Was it a military doc that diagnosed Danny? Is Danny on EFMP?
Susan...hope all is well! how are you and jeffrey feeling?
Well, it is 3:30 in the morning, better run. Talk to you all soon. I told Courtney's stepmom about this board and I hope she joins us soon. I know it would do her good to be able to talk to other parents with children with CF. I know it has been hard on them. They have not even been able to put their arms around her and hug her since she has been diagnosed. Courtney can't wait for them to get here!!
Seana, I am stationed believe it or not at the same place chacha is. Offutt AFB, NE. Danny was diagnosed at 2 months of age. We were stationed in England. We was not growing at all, even though he was drinking 6 8 oz bottles a day. He also had a cough from day one, and I told his pedatrician about it. She told me that "Babies get coughs, so don't worry about it" Grrrrr......I was not happy about that!!!! I was thinking, "Gee, I know I'm a new mom and all, but this just doesn't seem right" He also tasted like a salt lick everytime I kissed his head. So they sent us to Cambridge to do a sweat test. When it came back positive, they admitted us for about a week so we could get his treatment all set up and everything. I was so scared, I was only 23 and had no idea about CF, so I went to the library and did some research. I'm glad I did, otherwise I would have been totally freaked that he was going to die any day. Shortly after that we got put on the EFMP program and I got sent here. My family lives an hour away, so I was pretty happy about that.
As far as Courtney goes, it's good she coughs mucus up. When they are coughing dry hacky coughs with no mucus, that is when you need to get with the docs so they can put her on antibodics. Exercise is great for CF kids, it helps exercise the lungs and keep things moving freely. Danny is really active in sports, and I think that is part of the reason why he has been so healthy. His docs encourage it. It sounds to me like they don't have her enzymes right yet, maybe the dosages is too low. Do they have her on Zantac? Zantac neutralizes the acid in the stomach so that the enzymes can work better. I would call the doc on that. It may take a little while to get everything all worked out, it's kinda trial and error so to speak, but the doctors normally have a pretty good idea what is going to work. Every CF kid is different, so it's not like they have a height and weight chart to go by to see what is going to work. They may even switch enzymes. With Danny we have been on 4 different types in his 14 years. He's on Creon 20s right now, and has been on them for about 6 or 7 years. I hope I'm not freaking you out or anything. I'm just putting my 2 cent in. I hope it is helpful to you. I'm so glad you get along with the stepmom it certainly makes things much easier.
Well, I guess I have rattled on long enough. Take care. If you have anymore questions, just give me a shout.
Hey guys!! Danny just had his quarterly check up yesterday. He grew 1/2" and gained 3 pounds. Gosh, I would have though the dr. would have been happy with it, but he's still concerned that Danny has falled below the 5% in both height and weight. Although since he is still gaining, he's not forcing him to go on a supplement. I guess we are going to have to push even harder to get those calories in. The good thing about it, he actually likes the new Uh-oh Oreos. Thanks goodness, he actually likes something high calories. Anyways, I'm getting sidetracked. Back to the appointment. The doc put Danny on Zithromax, he said it's an maintenance antibodic with little to no side effects and the great thing about it, 1 pill 3 times a week. Monday, Wednesday and Fridays. I guess kids on this reduce thier hospitlizations by 40%, so I figured if it's going to help him keep clear, then we should try it, Danny was all for the idea also. Danny is pretty excited, he has been wanting to try the vest for a long time. We talked to the doc and he said we can give it a try. One of the medical companies that make the vest has a 30 day trail period. We are going to try it out. I have a feeling Danny will be really into it, it is hands free, so he can play his video games while he's doing it. I need to check with Tricare to see if they will pay for it. Gosh, it's expensive, I guess it's over 10,000. As long as his PFTs stay the same we will be alright.
I guess that is all for now. How are your kiddos??
Hi everyone! Just a quick note to say that I have finally returned from vacation. Seems like it's been forever. I have been thinking about you all and wondering how everyone is. We just got back last night, Tuesday and I'm just getting around to checking my e-mail and this message board. Boy does e-mail pile up when you are gone. And I told all my family we were leaving but it still piled up. I am not going to be long here tonight but just wanted to say a quick hello. I want to see if I can catch up on what's been going on and will post again tomorrow, when I'm more awake. I need a vacation from my vacation! Does anyone else ever feel that way when they get home from their vacation?
Will chat with you all tomorrow. Adios
Hi All! Deb, I see that there are a few new members. Welcome to you all ! Glad to hear that Danny had a good clinic. At least the pulmonary part was good. Who did he see this time? Sometimes I wonder if you can ever come away from clinic where all is great. I read in another post that Danny is like 85lbs? Is that right? I know they have to say what is best, like gain more weight. They like that reserve for if/when they get sick. How tall did you say he was? Rachel is like 4'10" and 83-85lbs. They seem happy with her. Neither of my girls like any of the supplements. Anna hates milk and they are mostly milk based. She says that milk makes her mouth mucusy. Sometimes i wonder if it all comes from having read one time that milk produces more mucus. Rachel will go in spurts where she will make homemade milk shakes or just drink a glass of milk. She's a stickler for the experation date on the bottle though. Almost like the kid on King of the Hill (if anyone has ever seen that show) he gets put on meds for ADD and becomes real alert and says there's a bottle of milk the the fridge that's about to exprire, ooh, there it goes. She takes the date literally, it will go bad on that date. Anyway.... rambling on. My girls don't eat "junk" food either. Candies, cookies, little debbie, hostess. Strange children they are I don't mean they don't eat it at all just hardly. Rachel will go in spurts where she will eat little debbie brownies with her lunch at school or the zebra cakes, but normally a bag of cookies can last weeks at our house. I don't know what it is. Sometimes I wonder if it's just because they can have it anytime they want, just tell me they'll eat it and I buy it. Ice cream sometimes can sit in our freezer til it gets little crystals in it, other times it runs out in three days. But pretzels, the virtually no calorie food won't last two days. So I cook, and I cook, and I cook. My girls don't even like BK, McD's, or Wendy's. Give them a Chick-fil-A though and they'll eat it every day. Does Danny like those Frostee's from Wendy's? Those pack in I believe it's 340 calories for a small, and they are only 99 cents. Chicken nuggets from KFC or Sonic are high in Cals. too. We add gravy to just about every thing. You probably do too. You mentioned before that Danny was at your mom's. Is that just for the summer or during the school year too?
Well, Seana, how are things your way? How is Courtney doing? Has her dad gotten into town yet? We are still hearing such good stuff about the clinic at Wilford Hall. My husband is anyway, he's heard or talked to a patient or two that's been seen there. If I didn't mention before he's an ENT PA. So if you have any sinus questions feel free to ask.
I haven't seen Susan post in quite a while. I wonder what's going on. I know she mentioned being sick last time she posted. That's the one thing I don't like about this message board is that you can't give out your personal e-mail address, so there's no way to check up on her. She was having to use a nebulizer like four or so times a day in her last post. That on top of the worries about her son. I hope we hear from her soon.
Deb, I forgot to ask how Danny is liking his vest. Tri-Care paid 100% didn't it? I wanted Anna to try the vest again but now she can't because of her port. She was opposed to it anyway. She tried it back at Dayton Childrens when we were at Wright Patt. She didn't like it but I think it wasn't fitted correctly.
So everyone, are your kids ready to get back to school? My Rachel is, I dont know about Anna. She will be going to a new HS they just finished. Some friends stayed at the old one, some didn't have a choice. So I guess she's got mixed feelings,not to mention nervousness about getting lost in a new building. I keep telling her that it will be new to everyone seeing as it's a NEW school. She'll get her schedule the first week of August and have two weeks until the first day. I told her I'd drop her off or she can drive to school and just walk around getting to know where everything is. And we just found out yesterday that they are going to put up a stop light at the entrance ! Let me fill you in on that. They built the new HS off a busy road, 55mph. There is a turning lane but no light what so ever. The only other way into the school is through a residential area, past a city park, down a dirt/gravel road. I am alot more comfortable about her driving to school now. Now for a car. My dad's got an old Apache truck he's going to give her. She likes trucks and is really excited. All I can think of is no power steering and on the column standard. My husband said he'd drive down to San Antonio (Texas) to get it. Guess we'll see how that goes.
We had a nice trip to Fl. It seemed really long. We took a couple of days and went to Key Largo from Satellite Beach (Patrick AFB area, for those military members here). My youngest brother in law got married and now has an instant family. We'll see how that goes, hopefully well. We are all unsure about his new wife. The girls got alot of sun and even though we piled on the sunscreen Anna still got a small burn on her shoulders. They both developed coughs while we were there. I wonder if the salt in the air loosens things up more. They managed to eat really well while we were gone. That's always my worry. You dont eat on schedule when you're on vacation. Anna doesn't eat sandwiches so I ended up taking over my sister-in-laws (not the new sister-in-law) kitchen in the middle of the day cooking. I haven't had Anna step on the scale yet though. And in case you are wondering, she did wear her swim suit and even found a new one that doesn't show her port!
Well I've rattled on and on. I'll finish up now. Hope to hear from you all soon.