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  • 1 Post By AngelaMarie

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  #1  
July 3rd, 2012, 02:07 PM
mamma_anna's Avatar Mega Super Mommy
Join Date: Feb 2011
Posts: 1,953
Seriously, where did everyone go?!?!

What's going on this summer? Anything exciting? Anything not so exciting? New treatments? New therapies? New dx's? New doctors? Anything?

Sarah!! (Danny's mom) I'm thinking of you my friend! How is Danny doing with the feeding tube? Did you end up moving? Get a teaching job? What's up?

Lexi, How are you doing? How is little miss Avery? Any updates on Olivia and the boys? Is Maliyah home with you yet?

Everyone post an update! Lurkers, newbies, old timers, at least come say hello.

I miss you all! We really need to get better at keeping this board going. Any ideas?
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Last edited by mamma_anna; July 3rd, 2012 at 02:09 PM.
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  #2  
July 3rd, 2012, 06:22 PM
challowell's Avatar Mega Super Mommy
Join Date: May 2010
Location: Caldwell, Ohio
Posts: 2,172
Well we just got power back yesterday from the storms that hit the midwest/east coast. We lost everything in our fridge and a lot in our freezers.
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  #3  
July 4th, 2012, 06:19 PM
AngelaMarie's Avatar Owen's Mommy
Join Date: May 2009
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I will just post here and introduce myself. I haven't posted here yet though I've popped in a few times. I'm not on here tons. My daughter Aubrey was born at 30 weeks. She was born with a congenital heart defect, severe scoliosis, hemivertebrae, missing and fused ribs, severe clubfoot (both feet). She also has GERD, a paralyzed vocal cord, laryngomalacia, clotting disorder, and the biggest smile in the whole world. We recently had genetic testing and found out she has Noonan Syndrome. She's 10.5 months old now and doing very well. She's had several surgeries, has a G Tube, didn't eat by mouth until recently but now eats a tiny bit, has sensorineural hearing loss, is learning sign language, is sitting up if we sit her up but not sitting up by herself yet, rolls over, laughs but makes no other real verbal sounds. We get PT, OT, Speech and always have several appointments a week. She had open heart surgery in February. She will need another open heart surgery eventually but hopefully not for a while. Next up is an MRI, then next major surgery should be spine. (Praying that isn't for a little while longer) Probably sounds like a lot, and at times it's overwhelming but Aubrey is awesome and the light of our lives. She is currently done with Ponsetti casting and has boots and a brace she's in 23/7. She's in a back brace as much as she tolerates as she's a sweaty kiddo. She has 2 big brothers and a big sister. My kids are 19, 14, 2, and Aubrey.




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  #4  
July 5th, 2012, 03:14 PM
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Were doing well here. Claire and Madelyn's adoptions were finalized! Highlight of our summer Claire is having a hard breathing day due to fireworks last night. I kept the girls up-wind to protect them, but apparently it wasn't good enough I feel bad for causing it. Did a breathing treatment last night, 2 so far today, and the Dr. called in a steroid that DH will pick up on the way home. Trying to prevent something worse from developing! Madelyn slept through fireworks. Olivia was out with us but for some reason isn't having a hard time breathing. Just coughing, so she had a treatment this morning as well. Olivia hasn't been eating very well, so she's been on more tube feedings than normal. Trying desperately to get her to gain some weight, Pedi says she's dangerously close to being labeled FTT

Anyway, enough of our medical pity party! My Mom is over today to help with Claire. Were stuck inside since the air quality sucks from the fire works. Have watched Snow White and a Veggie Tales movie. Had a special lunch to cheer Claire up. Took an hour long bath to appease the girls wanting to go out and swim! Got lucky today, all the girls are napping at once I should probably be napping, too!


Lexi, How are you doing? How is little miss Avery? Any updates on Olivia and the boys? Is Maliyah home with you yet? I'm IRL friends with Lexi and she asked me to respond for her when I told her you were asking about her. She has not been on due to the boys' bio dad finding her on here and "stalking" her posts. She doesn't think she'll be back due to the importance of keeping the boys safe. The adoption was finalized, though! Maliyah isn't home yet, but will be at the end of this month! Olivia is doing well, no complications with her health! Avery had a bout with pneumonia again, but it was very mild and she is home and doing well.
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  #5  
July 6th, 2012, 01:29 PM
mamma_anna's Avatar Mega Super Mommy
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Posts: 1,953
Quote:
Originally Posted by challowell View Post
Well we just got power back yesterday from the storms that hit the midwest/east coast. We lost everything in our fridge and a lot in our freezers.
UGH! so sorry you lost all that food. I'm guessing you're suffering with this awful heat too. Are you able to stay cool now at least?

Quote:
Originally Posted by AngelaMarie View Post
I will just post here and introduce myself. I haven't posted here yet though I've popped in a few times. I'm not on here tons. My daughter Aubrey was born at 30 weeks. She was born with a congenital heart defect, severe scoliosis, hemivertebrae, missing and fused ribs, severe clubfoot (both feet). She also has GERD, a paralyzed vocal cord, laryngomalacia, clotting disorder, and the biggest smile in the whole world. We recently had genetic testing and found out she has Noonan Syndrome. She's 10.5 months old now and doing very well. She's had several surgeries, has a G Tube, didn't eat by mouth until recently but now eats a tiny bit, has sensorineural hearing loss, is learning sign language, is sitting up if we sit her up but not sitting up by herself yet, rolls over, laughs but makes no other real verbal sounds. We get PT, OT, Speech and always have several appointments a week. She had open heart surgery in February. She will need another open heart surgery eventually but hopefully not for a while. Next up is an MRI, then next major surgery should be spine. (Praying that isn't for a little while longer) Probably sounds like a lot, and at times it's overwhelming but Aubrey is awesome and the light of our lives. She is currently done with Ponsetti casting and has boots and a brace she's in 23/7. She's in a back brace as much as she tolerates as she's a sweaty kiddo. She has 2 big brothers and a big sister. My kids are 19, 14, 2, and Aubrey.
Welcome AngelaMarie! so glad you posted in here. Sounds like you have your hands full with Aubrey and her siblings. Hope you'll post more often though. We'd love to get to know you better. Good luck with the MRI. Hope you can hold off on the surgery for a while. Keep us posted. Aubrey is beautiful btw.

Quote:
Originally Posted by LucyLoved View Post
Were doing well here. Claire and Madelyn's adoptions were finalized! Highlight of our summer Claire is having a hard breathing day due to fireworks last night. I kept the girls up-wind to protect them, but apparently it wasn't good enough I feel bad for causing it. Did a breathing treatment last night, 2 so far today, and the Dr. called in a steroid that DH will pick up on the way home. Trying to prevent something worse from developing! Madelyn slept through fireworks. Olivia was out with us but for some reason isn't having a hard time breathing. Just coughing, so she had a treatment this morning as well. Olivia hasn't been eating very well, so she's been on more tube feedings than normal. Trying desperately to get her to gain some weight, Pedi says she's dangerously close to being labeled FTT

Anyway, enough of our medical pity party! My Mom is over today to help with Claire. Were stuck inside since the air quality sucks from the fire works. Have watched Snow White and a Veggie Tales movie. Had a special lunch to cheer Claire up. Took an hour long bath to appease the girls wanting to go out and swim! Got lucky today, all the girls are napping at once I should probably be napping, too!


Lexi, How are you doing? How is little miss Avery? Any updates on Olivia and the boys? Is Maliyah home with you yet? I'm IRL friends with Lexi and she asked me to respond for her when I told her you were asking about her. She has not been on due to the boys' bio dad finding her on here and "stalking" her posts. She doesn't think she'll be back due to the importance of keeping the boys safe. The adoption was finalized, though! Maliyah isn't home yet, but will be at the end of this month! Olivia is doing well, no complications with her health! Avery had a bout with pneumonia again, but it was very mild and she is home and doing well.
Lucy, Thank you for sharing that update for Lexi. I'm so sorry to hear that she has to leave us but I totally understand. The boy's safety comes first. I'm sure gonna miss her though. Please tell her I'm glad her little ones are doing well and I'll continue to pray for her.

And thanks for sharing your update! Congrats on finalizing the girls adoptions! What a joy!
Please don't beat yourself up about Claire. I know that's esier said than done. I do it too. All the time. But it doesn't do our kids any good. At least she got to enjoy the fireworks. How is she breathing today? any better?
Sorry Olivia isn't eating well. I know what a stress that is. We are also very close to that FTT dx for Ellie. Hope things improve for her soon.
Sounds like you had a nice day yesturday. Hope you enjoyed that rare simultaneous nap. Were you able to get outside today?
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  #6  
July 7th, 2012, 12:41 AM
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Quote:
Originally Posted by mamma_anna

UGH! so sorry you lost all that food. I'm guessing you're suffering with this awful heat too. Are you able to stay cool now at least?

Welcome AngelaMarie! so glad you posted in here. Sounds like you have your hands full with Aubrey and her siblings. Hope you'll post more often though. We'd love to get to know you better. Good luck with the MRI. Hope you can hold off on the surgery for a while. Keep us posted. Aubrey is beautiful btw.

Lucy, Thank you for sharing that update for Lexi. I'm so sorry to hear that she has to leave us but I totally understand. The boy's safety comes first. I'm sure gonna miss her though. Please tell her I'm glad her little ones are doing well and I'll continue to pray for her.

And thanks for sharing your update! Congrats on finalizing the girls adoptions! What a joy!
Please don't beat yourself up about Claire. I know that's esier said than done. I do it too. All the time. But it doesn't do our kids any good. At least she got to enjoy the fireworks. How is she breathing today? any better?
Sorry Olivia isn't eating well. I know what a stress that is. We are also very close to that FTT dx for Ellie. Hope things improve for her soon.
Sounds like you had a nice day yesturday. Hope you enjoyed that rare simultaneous nap. Were you able to get outside today?
Claire is breathing better today! The steroid really helped! Only two treatments needed today.

Olivia is still eating the same. Praying Ellie and Olivia can avoid a FTT diagnoses!

We did get outside to swim today! We got two new foster placements so that's kept us busy
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  #7  
July 8th, 2012, 01:41 PM
mamma_anna's Avatar Mega Super Mommy
Join Date: Feb 2011
Posts: 1,953
I guess if I'm asking you all to share updates, I should share one too.

Ellie has been done with her latest round of serial casting for about a month now and so far the positive effects are not wearing off yet!!! Praise God for that! She's gaining speed and stamina with her walker. We are hopeful that will be sustained over the long term.
Her breathing is good as long as she doesn't stay in the heat too long and she's eating better too. Finally up to 36lbs!
She's taking swim lessons and loving them! Yay!! But other than that nothing new.

In other news, Meagan got her driver's license Abbey turned 14 my brother got married and we just got to spend a wonderful couple of weeks with my family in North Carolina!
All good things in this house!

Anyone else??? Come on! You know you want to share!
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  #8  
July 18th, 2012, 10:33 AM
challowell's Avatar Mega Super Mommy
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Location: Caldwell, Ohio
Posts: 2,172
We are able to stay cool now. I say all together we lost about $500 worth of food. We have reached the one year milestone since Jamie's eye surgery. We had a good day at the park that day.
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