my 6 day old daughter was just diagnosed

2

2k2wranglerx

New member
A huge thanks to everyone for all the advice. I can't multiquote on this board so i'm not going to quote everyone. Just know that i really appreciate all the kind words and advice, and will definitely be following a lot of the advice that the more experienced (than me) parents have.

on a happier note. I have the coolest bosses in the world. I told them what was going on and literally 10 minutes later i have a stack of stuff on my desk to help fund the whole thing.

PA has a Medical assistance loophole that i can access to pay for her medications! She will be independent of her parents and will qualify through the loophole! That was a GIGANTIC relief! My wife is a special education teacher and i work for the county, so we are far from wealthy people.

Also, within our county i can access physical therapy, Occupational therapy, etc through early intervention. Even if she doesn't need PT/OT she will still be tracked (if i want) through the EI system and if she ever needs it, it will be readily available. What's amazing there is they come right to my house to do any therapy we need!

I know i don't have much to offer on here, but if anyone is in PA and needs help with any of this stuff please don't hesitate to let me know. ryan.dunbar@alleghenycounty.us is my work email. I specifically help kids with disabilities with school issues, but if anyone needs some of this other information i'd be glad to share it.

Thank you so much everyone!
 
2

2k2wranglerx

New member
A huge thanks to everyone for all the advice. I can't multiquote on this board so i'm not going to quote everyone. Just know that i really appreciate all the kind words and advice, and will definitely be following a lot of the advice that the more experienced (than me) parents have.
<br />
<br />on a happier note. I have the coolest bosses in the world. I told them what was going on and literally 10 minutes later i have a stack of stuff on my desk to help fund the whole thing.
<br />
<br />PA has a Medical assistance loophole that i can access to pay for her medications! She will be independent of her parents and will qualify through the loophole! That was a GIGANTIC relief! My wife is a special education teacher and i work for the county, so we are far from wealthy people.
<br />
<br />Also, within our county i can access physical therapy, Occupational therapy, etc through early intervention. Even if she doesn't need PT/OT she will still be tracked (if i want) through the EI system and if she ever needs it, it will be readily available. What's amazing there is they come right to my house to do any therapy we need!
<br />
<br />I know i don't have much to offer on here, but if anyone is in PA and needs help with any of this stuff please don't hesitate to let me know. ryan.dunbar@alleghenycounty.us is my work email. I specifically help kids with disabilities with school issues, but if anyone needs some of this other information i'd be glad to share it.
<br />
<br />Thank you so much everyone!
 
2

2k2wranglerx

New member
on an even happier note... i took a few pics this weekend

took some pics today...
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia4.jpg">
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia3.jpg">
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia2.jpg">
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia.jpg">
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia5.jpg">
 
2

2k2wranglerx

New member
on an even happier note... i took a few pics this weekend

took some pics today...
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia4.jpg">
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia3.jpg">
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia2.jpg">
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia.jpg">
<img src="http://i72.photobucket.com/albums/i199/46willys/amelia5.jpg">
 
2

2k2wranglerx

New member
on an even happier note... i took a few pics this weekend
<br />
<br />took some pics today...
<br /><img src="http://i72.photobucket.com/albums/i199/46willys/amelia4.jpg">
<br /><img src="http://i72.photobucket.com/albums/i199/46willys/amelia3.jpg">
<br /><img src="http://i72.photobucket.com/albums/i199/46willys/amelia2.jpg">
<br /><img src="http://i72.photobucket.com/albums/i199/46willys/amelia.jpg">
<br /><img src="http://i72.photobucket.com/albums/i199/46willys/amelia5.jpg">
 
W

welshwitch

Guest
No prob.

If you can keep your daughter as physically active as possible that will do wonders. Sign her up for sports, take her climbing, waterskiing, swimming, running, you name it that is super awesome. Anything cardio is great. I will also add that I really didn't have many lung issues until I was in my late 20's/early 30's but I guarantee that being a kid athlete has helped me get to where I am now.

Altitude doesn't seem to have that big of an effect on me, but that's just me.

I am allergic to dust which blows. So I just stay away from cleaning LOL!

Congratulations again on your daughter!
 
W

welshwitch

Guest
No prob.

If you can keep your daughter as physically active as possible that will do wonders. Sign her up for sports, take her climbing, waterskiing, swimming, running, you name it that is super awesome. Anything cardio is great. I will also add that I really didn't have many lung issues until I was in my late 20's/early 30's but I guarantee that being a kid athlete has helped me get to where I am now.

Altitude doesn't seem to have that big of an effect on me, but that's just me.

I am allergic to dust which blows. So I just stay away from cleaning LOL!

Congratulations again on your daughter!
 
W

welshwitch

Guest
No prob.
<br />
<br />If you can keep your daughter as physically active as possible that will do wonders. Sign her up for sports, take her climbing, waterskiing, swimming, running, you name it that is super awesome. Anything cardio is great. I will also add that I really didn't have many lung issues until I was in my late 20's/early 30's but I guarantee that being a kid athlete has helped me get to where I am now.
<br />
<br />Altitude doesn't seem to have that big of an effect on me, but that's just me.
<br />
<br />I am allergic to dust which blows. So I just stay away from cleaning LOL!
<br />
<br />Congratulations again on your daughter!
 
2

2k2wranglerx

New member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>welshwitch</b></i> No prob. If you can keep your daughter as physically active as possible that will do wonders. Sign her up for sports, take her climbing, waterskiing, swimming, running, you name it that is super awesome. Anything cardio is great. I will also add that I really didn't have many lung issues until I was in my late 20's/early 30's but I guarantee that being a kid athlete has helped me get to where I am now. Altitude doesn't seem to have that big of an effect on me, but that's just me. I am allergic to dust which blows. So I just stay away from cleaning LOL! Congratulations again on your daughter!</end quote></div> </P>
<P> </P>
<P>that's good!  it's what i wanted to hear.  It would be different if she had to be stuck at home all the time.  But i'll buy an inverter or generator for her nebulizer if i have to and i'll get her outside as much as possible.  </P>
<P> </P>
<P>I was a teacher before i did this job, and am contemplating going back to it so my wife and i can have summers/breaks off together.  I hate to do it since i love this job, but the thoughts of every summer loading up the jeep and heading to the grand canyon for whitewater rafting, mtn biking and jeeping in moab, hiking in yosemite, and skiing in colorado are just too hard to ignore.  </P>
<P> </P>
<P>i mean you know you're addicted to the outdoors when your wife's jeep looks like this:</P>
<P>(sorry i love posting pics of stuff!)  and mine is even more ridiculous:</P>
<P> </P>
<P> </P>
<P> </P>
<P><IMG alt="" src="http://i72.photobucket.com/albums/i199/46willys/2011-04-07_17-25-51_537.jpg"></P>
 
2

2k2wranglerx

New member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>welshwitch</b></i> No prob. If you can keep your daughter as physically active as possible that will do wonders. Sign her up for sports, take her climbing, waterskiing, swimming, running, you name it that is super awesome. Anything cardio is great. I will also add that I really didn't have many lung issues until I was in my late 20's/early 30's but I guarantee that being a kid athlete has helped me get to where I am now. Altitude doesn't seem to have that big of an effect on me, but that's just me. I am allergic to dust which blows. So I just stay away from cleaning LOL! Congratulations again on your daughter!</end quote> </P>
<P></P>
<P>that's good! it's what i wanted to hear. It would be different if she had to be stuck at home all the time. But i'll buy an inverter or generator for her nebulizer if i have to and i'll get her outside as much as possible. </P>
<P></P>
<P>I was a teacher before i did this job, and am contemplating going back to it so my wife and i can have summers/breaks off together. I hate to do it since i love this job, but the thoughts of every summer loading up the jeep and heading to the grand canyon for whitewater rafting, mtn biking and jeeping in moab, hiking in yosemite, and skiing in colorado are just too hard to ignore. </P>
<P></P>
<P>i mean you know you're addicted to the outdoors when your wife's jeep looks like this:</P>
<P>(sorry i love posting pics of stuff!) and mine is even more ridiculous:</P>
<P></P>
<P></P>
<P></P>
<P><IMG alt="" src="http://i72.photobucket.com/albums/i199/46willys/2011-04-07_17-25-51_537.jpg"></P>
 
2

2k2wranglerx

New member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>welshwitch</b></i> No prob. If you can keep your daughter as physically active as possible that will do wonders. Sign her up for sports, take her climbing, waterskiing, swimming, running, you name it that is super awesome. Anything cardio is great. I will also add that I really didn't have many lung issues until I was in my late 20's/early 30's but I guarantee that being a kid athlete has helped me get to where I am now. Altitude doesn't seem to have that big of an effect on me, but that's just me. I am allergic to dust which blows. So I just stay away from cleaning LOL! Congratulations again on your daughter!</end quote> </P>
<P></P>
<P>that's good! it's what i wanted to hear. It would be different if she had to be stuck at home all the time. But i'll buy an inverter or generator for her nebulizer if i have to and i'll get her outside as much as possible. </P>
<P></P>
<P>I was a teacher before i did this job, and am contemplating going back to it so my wife and i can have summers/breaks off together. I hate to do it since i love this job, but the thoughts of every summer loading up the jeep and heading to the grand canyon for whitewater rafting, mtn biking and jeeping in moab, hiking in yosemite, and skiing in colorado are just too hard to ignore. </P>
<P></P>
<P>i mean you know you're addicted to the outdoors when your wife's jeep looks like this:</P>
<P>(sorry i love posting pics of stuff!) and mine is even more ridiculous:</P>
<P></P>
<P></P>
<P></P>
<P><IMG alt="" src="http://i72.photobucket.com/albums/i199/46willys/2011-04-07_17-25-51_537.jpg"></P>
 
R

Ratatosk

Administrator
Staff member
We took DS to Rocky Mtn. National Park a few times -- age 1-3 and he didn't have any issues. We did need to make sure he stayed hydrated, which we do anyway because he sweats out a heck of a lot of salt. His daycare always had them out running around to parks, walking, activities, so we'd have them make sure to take along either salty snacks and/or a salt shaker. He's currently in gymnastics, tennis and swimming. We've had him in baseball and skating in the past. And my husband wants to see about getting him signed up for karate.

Exercise is important. I imagine they'll have you start chest physiotherapy (CPT). It's important to keep those lungs happy and healthy and if you get an early start on it, they'll get used to is and not fight or struggle. We did CPT 3-4 times a day from the time DS was diagnosed at one week and he'd actually fall asleep during his treatments. Now he has a vest, which makes life easier.
 
R

Ratatosk

Administrator
Staff member
We took DS to Rocky Mtn. National Park a few times -- age 1-3 and he didn't have any issues. We did need to make sure he stayed hydrated, which we do anyway because he sweats out a heck of a lot of salt. His daycare always had them out running around to parks, walking, activities, so we'd have them make sure to take along either salty snacks and/or a salt shaker. He's currently in gymnastics, tennis and swimming. We've had him in baseball and skating in the past. And my husband wants to see about getting him signed up for karate.

Exercise is important. I imagine they'll have you start chest physiotherapy (CPT). It's important to keep those lungs happy and healthy and if you get an early start on it, they'll get used to is and not fight or struggle. We did CPT 3-4 times a day from the time DS was diagnosed at one week and he'd actually fall asleep during his treatments. Now he has a vest, which makes life easier.
 
R

Ratatosk

Administrator
Staff member
We took DS to Rocky Mtn. National Park a few times -- age 1-3 and he didn't have any issues. We did need to make sure he stayed hydrated, which we do anyway because he sweats out a heck of a lot of salt. His daycare always had them out running around to parks, walking, activities, so we'd have them make sure to take along either salty snacks and/or a salt shaker. He's currently in gymnastics, tennis and swimming. We've had him in baseball and skating in the past. And my husband wants to see about getting him signed up for karate.
<br />
<br />Exercise is important. I imagine they'll have you start chest physiotherapy (CPT). It's important to keep those lungs happy and healthy and if you get an early start on it, they'll get used to is and not fight or struggle. We did CPT 3-4 times a day from the time DS was diagnosed at one week and he'd actually fall asleep during his treatments. Now he has a vest, which makes life easier.
 
2

2k2wranglerx

New member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> We took DS to Rocky Mtn. National Park a few times -- age 1-3 and he didn't have any issues. We did need to make sure he stayed hydrated, which we do anyway because he sweats out a heck of a lot of salt. His daycare always had them out running around to parks, walking, activities, so we'd have them make sure to take along either salty snacks and/or a salt shaker. He's currently in gymnastics, tennis and swimming. We've had him in baseball and skating in the past. And my husband wants to see about getting him signed up for karate. Exercise is important. I imagine they'll have you start chest physiotherapy (CPT). It's important to keep those lungs happy and healthy and if you get an early start on it, they'll get used to is and not fight or struggle. We did CPT 3-4 times a day from the time DS was diagnosed at one week and he'd actually fall asleep during his treatments. Now he has a vest, which makes life easier.</end quote></div> </P>
<P> </P>
<P>That's awesome to hear.  I figured we would have to do some type of therapy right away.  I didn't realize you can start that right away.</P>
<P> </P>
<P>i've been doing kind of the same thing when i burp her... i call it baby shiatzu lol <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
 
2

2k2wranglerx

New member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> We took DS to Rocky Mtn. National Park a few times -- age 1-3 and he didn't have any issues. We did need to make sure he stayed hydrated, which we do anyway because he sweats out a heck of a lot of salt. His daycare always had them out running around to parks, walking, activities, so we'd have them make sure to take along either salty snacks and/or a salt shaker. He's currently in gymnastics, tennis and swimming. We've had him in baseball and skating in the past. And my husband wants to see about getting him signed up for karate. Exercise is important. I imagine they'll have you start chest physiotherapy (CPT). It's important to keep those lungs happy and healthy and if you get an early start on it, they'll get used to is and not fight or struggle. We did CPT 3-4 times a day from the time DS was diagnosed at one week and he'd actually fall asleep during his treatments. Now he has a vest, which makes life easier.</end quote> </P>
<P></P>
<P>That's awesome to hear. I figured we would have to do some type of therapy right away. I didn't realize you can start that right away.</P>
<P></P>
<P>i've been doing kind of the same thing when i burp her... i call it baby shiatzu lol <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
 
2

2k2wranglerx

New member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> We took DS to Rocky Mtn. National Park a few times -- age 1-3 and he didn't have any issues. We did need to make sure he stayed hydrated, which we do anyway because he sweats out a heck of a lot of salt. His daycare always had them out running around to parks, walking, activities, so we'd have them make sure to take along either salty snacks and/or a salt shaker. He's currently in gymnastics, tennis and swimming. We've had him in baseball and skating in the past. And my husband wants to see about getting him signed up for karate. Exercise is important. I imagine they'll have you start chest physiotherapy (CPT). It's important to keep those lungs happy and healthy and if you get an early start on it, they'll get used to is and not fight or struggle. We did CPT 3-4 times a day from the time DS was diagnosed at one week and he'd actually fall asleep during his treatments. Now he has a vest, which makes life easier.</end quote> </P>
<P></P>
<P>That's awesome to hear. I figured we would have to do some type of therapy right away. I didn't realize you can start that right away.</P>
<P></P>
<P>i've been doing kind of the same thing when i burp her... i call it baby shiatzu lol <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
 
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