I cannot agree more! As I look back to last Mother's Day when I started working out of the home again (after 10 yrs) I am realizing that I too am rushed through the day, always going, going, going and ususally for the DSs, but nevertheless...going. It's time to slow down. Sit and read together. Watch a movie together. Make a meal together. Thank you all for this wonderful post! ~Stephanie

what/how did they test? I know it's a test of the blood, but did they do any others. We actually do not have an app't until April 28th. So, untill then we just wait. On hold. I'm not even sure what to do with our time. I was hoping we'd get in sooner. I'm so sorry for you guys. I know how scary this is for you. We'll be praying for you as well. ~Stephanie (FireFly)

what/how sis they test? I know it's a test of the blood, but did they do any others. We actually do not have an app't until April 28th. So, untill then we just wait. On hold. I'm not even sure what to do with our time. I'm so sorry for you guys. I know how scary this is for you. We'll be praying for you as well. ~Stephanie (FireFly)

I didn't know about your dd. May I ask how old she is and her symptoms? You can private message me. Thanks. We'll be praying for your family, too. ~Stephanie

After I sent it to her I read all the responses here and thought you'd all want to know as well. ***The hardest part isn't the being angry this wasn't caught earlier or "why him", it's the things that set him off - that made him cute and sweet - are the red flags that are looked for in the first place. When he was born he didn't cry - he had a squeeky lung and was on oxygen for 7 days. His ears were and still are folded at the top (like an elf-just not so pronounced) this is called "crumpled" ear. He had hernias when he was 4 - has surgery. Skin issues-eczema - was treated by a dermatologist. Always been tall and thin and has flat feet - I used to ask the ped about this is worry. He has the stretch marks on his lower back. The crowded teeth - had braces. Why didn't the doctors catch these red flag before? I'm so angry about this. I just know that when we meet with the geneticist and rhuematologist they're going to tell him he cannot train in karate anymore. This is his goal - his long term goal - he was going to open his own dojo and go into business with his teacher (sensi). I hurt so badly for him. All I want to do is cry. His heart is affected by this syndrome which is the most fatal part. His aorta is enlarged and two of his valves prolasped. Eventually he'll have to have open heart surgery. Marfan's sometimes just affects the eyes or back (the dura) and sometimes all parts of the body where there is connective tissue. And then, to top it all off...my dh and ds15 have definent signs of the same Marfan's syndrome. I guess we'll all be screened? I'll keep you in the know, okay? Thanks for listening. ~Stephanie***

with Marfan's Syndrome. It's a genetic connective tissue disease. His aortas are enlarged and two of his valves aren't working properly-they're prolapse. We will see a geneticist and a rhuematologist next week for more details. For the rest of his life he'll be in cardiologists' and specialists' offices. I don't know how to process this right now. ~Stephanie...asking for prayers...not sympathy, please.

We're looking into the Celiac. Isn't that a viral disease? I'm going to Google in a few mins. I know I heard that name come up in one of our appt's. Another something that came up was possible MS. sigh. I've been Googling that for about an hour. Than decided to come here for a break. The other sites I'll get to also. I wrote them down. Thanks agian, ~S

it's from all those storms? I know "duh", rigth? What else! But really, sis you ever find out besides what the weather man said. Over hear our weather guys are usually wrong:O) ~S

So, eventually I might become a drone or something? What about the calendar section? I don't have to have my b-day there. Just wondering how they get there. Don't laugh:O) my momma told me "there's never a stupid question." ~FF~

I agree with the idea that it doesn't matter where you start, unless you're like me and need to start at the beginning, as long as you go forward. You have to do what works for your family. If that means keeping everyone on the same page, then do it, if you/they need/can work on things separately, then do that. In our experience, my older two, (now 17 and 15) worked on the same history lessons/stories at the same time while they were in 1st-7th grades...it was easier for all of us. But now my ds9 is working on the SOTW2 and the older two are studying their own time in history. DS17 is studying Japanese Hist. and DS15 is studying American Hist. This year it works for us. HTH, ~FF~

How do I get my birthday on the calendar? and Why or how is it that I'm a visitor and not a work bee or hive watcher or whatever? Is it b/c I don't visit often. I get the rep. thing. Just wondering about these other things. I don't get here as often as I did before, sigh. I do still enjoy tha talks, though. ~FF~

What are your fav. sites for finding info.? I need to research nutrition for my DSs...from weight gain to foods to activities. As some of you know my DS17 has been tested for JRA and Lupus both of which have been neg. which is wonderful, but what's going on with him? I don't Know. I have been making him some "momma milkshakes" which have helped him with adding some weight and extra nutrtionals values, but he's going to get bored with these soon. He eats well, but excercises 4-6 hrs each day (btwn his job and training). So, most everything he takes in is burned up quickly and doesn't stay long enough to stick. I'm pretty sure that if he could put on a few pounds he'd be able to fight whatever is going on with him more easily. If you don't know his symptoms, here they are...swollen/achy redden joints(mostly hands and feet), fatigue, itchy skin, welps, cough, ... Today he went for more blood work, chest x-rays, mono test, and is to be scheduled for an echo-gram. Thanks in advance for any information you're willing to share. ~FF~

He learned how to play the Marine Corp Hymn last year -LAST YEAR- I say. And is still plunking along with it. One day he played it for 3 hours straight. I had to leave to house. Blessings:) ~Stephanie

Well, all kinds of stuff for salads: carrots, broccoli, cucumbers, Romaine lettuce, tomatoes, celery, something else I'm sure. We also have: bananas, apples, oranges, mango, something, something... Canned: everything from collards to beets to beans. Frozen: broccoli right now. Eventhough we have all these veggies/fruits doesn't mean we eat them everyday. I know we could do better. ~Stephanie

Hey Abbey, How long have you been on this? I'm interested b/c I lost 21 lbs doing sparkpeople which was fine and all, but during the hoildays, starting in Oct and ending at New Years, I've gained it all back, sigh. So, I'm trying to get back into the spark mode, but haven't been able to b/c I don't have enough time. One of the only reasons I'm back here is #1) I missed it and all the people and #2) I had a question about my oldest ds. I happen to come back to find a new format and trying to manuvere it is challenging to me. I think change is good though, so, more power to them. If I thought I'd stick with sparks and be able to access a pc all day long so I could keep up with what I eat and excercise I'd do it, but right now, I'm having a hard time doing this and working and HSing and trying to figure out my ds. I'm rambling at this point. Hope you all can use something I've said. ~Stephanie

Thanks for the link. I think it will be helpful. I'm trying to work this new format...it's blowing my mind:O) ~Stephanie

Not yet. It's all new to us. He'll go through the tests next week to confirm what his ped. thinks and then we'll go from there. I guess I'd better start looking for a rheumatologist, huh? What should I look for. questions I should ask? ~S

Awesome, Jean. We tried to see the eclipse that night, but there was too much clouding. It was fun though. We laid a blanket out on the front lawn and huddled together w/ hot cocoa. Just wanted to say how cool your photos were. Thanks. ~FF~

Hello everybody! I just popped in to check on things here (there) and found a new board and format (imagine that!) Does anyone have a child w/rhuematoid arthritis? I ask b/c my ds17 might have RA. We're (he's) going through some of the testing next week and it looks like, w/his symptoms, that it probably is RA. So, I'm trying to find out as much as I can to help him. I know it runs in my side of the family and it's hereditary. (sigh) If you have any info. on treatment, advice...anything, please let me know. ~Stephanie