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Ryannbaby
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daisy729 posted:
Thanks for updating on your DD. I do know how scary it is, DS has heart issues, so I do understand that dread of calling to get results. On one hand, you hope they do tell you it's something so that you can fix it. But, then you feel guilty for wishing they would tell you something is wrong because you don't want there to by anything wrong. But, then you are scared too that they will tell you they didn't find anything, kinda feels like you are back to square 1. You know what it isn't...but you would like to know what it IS.

I am glad the meds she is on now are working. I know it can be a lifelong battle, but at least she has something that is working for her now!
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Ryannbaby responded:
Thank you :) It's so stressful and heart breaking. This is very painful for her, and when she has an episode, all we can do is comfort her through it - which doesn't feel like enough. I just get SO frustrated that I can't offer her an immediate fix to make this stop, ya know?
I'm Ryann (30), DF Gabe (31). Our beautiful DD - 14 months - Isabella Francesca Marie - Born on St Patty's Day 2009. So in love with our little beauty!
 
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jlc78 replied to Ryannbaby's response:
I'm being nosey and understand if you don't want to share but what's going on with your DD?
 
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Ryannbaby replied to jlc78's response:
She has had constipation issues since 6 weeks old. She's been through some extensive and intrusive tests and even a trip to Boston Children's Hospital a couple weeks ago (3 hrs from us, but they are THE best of the best).
I'm Ryann (30), DF Gabe (31). Our beautiful DD - 14 months - Isabella Francesca Marie - Born on St Patty's Day 2009. So in love with our little beauty!
 
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jlc78 replied to Ryannbaby's response:
Wow. I'm sorry to hear about that. Boston is a great hospital. That's our next stop for a 3rd opinion on DD's seizures although I'm hoping not to need it. It's so hard to watch your child go through that. And the worry....ugh.
Me (31) DH (32) and our 2 beautiful babes DS (6/07) and DD (9/08)
 
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Ryannbaby replied to jlc78's response:
It really is. "constipation" may not sound like much, but when your baby is pooping out stool the size of a baseball, the texture of a rock, that rips her poor little hiney - it's devastating. Boston is wonderful. I had the worst time with out local specialist, and he is the only one in our area. People travel from all over the state to come to him. He's terrible. When her pedi said he wanted us to go to Boston I was so happy. They are AMAZING. I have never encountered a Dr as thoughtful and concerned as the Dr we saw there. Good luck w your DD, you're taking her to the best place that she can possibly be seen!
I'm Ryann (30), DF Gabe (31). Our beautiful DD - 14 months - Isabella Francesca Marie - Born on St Patty's Day 2009. So in love with our little beauty!
 
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jlc78 replied to Ryannbaby's response:
Thank you. We are fortunate in that Children's Hospital of Philadelphia is in our back yard so her primary neurologist is there. Boston is really the only other place we can go since CHOP is rated #2. I'm looking forward to the day when I can look back at all of this as a memory instead of my every day life. I hope they can figure things out for you. The unknowns is quite frustrating.
Me (31) DH (32) and our 2 beautiful babes DS (6/07) and DD (9/08)
 
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Ryannbaby replied to jlc78's response:
A guy from my church brings his son there. He is 3 years old and he was having up to 60 violent seizures a DAY. He spent alot of time in Boston .... the last I knew, he was put on a gluten free, high fat low protein diet - and he was seizure free for over a month. If you'd like, I could email him and see if he could offer you any advice and support. I'm sure he knows everything and anything you would need to know.
I'm Ryann (30), DF Gabe (31). Our beautiful DD - 14 months - Isabella Francesca Marie - Born on St Patty's Day 2009. So in love with our little beauty!
 
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jlc78 replied to Ryannbaby's response:
Oh my. That's a bit more than what we're dealing with. I've read a lot on the ketogenic diet. Fortunately she's not to that point. Most of her seizures are febrile in nature (ie brought on by a quick spiking fever.) She's had only had 1 non-febrile seizure that we're aware. I would love to know which doctor he sees there. We did a lot of research a couple of months ago and we had one doctor in mind. I can't remember his name off the top of my head though. I would have to look through my paperwork at home.
Me (31) DH (32) and our 2 beautiful babes DS (6/07) and DD (9/08)
 
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daisy729 responded:
It is such a relief to find a doctor you really like. We have been blessed with a great cardiologist right off the bat. He takes his time explaining everything to me, if I don't get it, he'll even draw me a picture. He never makes me feel rushed when I have questions. He shows honest concern for his patients. He is GREAT with kids. He is frank with me, I know what is coming up in our future (surgery), and he doesn't sugar coat it. However, he is very reassuring. And..to top it all off..he's very easy on my eyes :) :)

I can't imagine the struggle that you two have gone through. I didn't have answers right away what was wrong with Dane in the NICU at first. It was several days before they figured out it was his heart. I can't imagine going months on end trying to figure out what is going on, you ladies have a great amount of strength. I really hope you guys are in the right direction with the doctor's you are currently seeing. I hope they can at least give you some answers.
 
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Ryannbaby replied to daisy729's response:
Thanks :) - Everything you said about Dane's Dr, we have found in Dr. Rodriguez @ BCH. All Dr's should be that way, especially Pedi Dr's - it's a shame that they are actually hard to come by ... he is like a breath of fresh air, and he's a total hottie too!! Haha. So what is currently going on with Dane? How is he doing?
I'm Ryann (30), DF Gabe (31). Our beautiful DD - 14 months - Isabella Francesca Marie - Born on St Patty's Day 2009. So in love with our little beauty!
 
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daisy729 replied to Ryannbaby's response:
Agreed! If you are going to be a doctor, and go into pediatrics, then don't you think you should be good with kids? Or, at least comfortable around them? Just seems common sense!

Quick background on his heart if you don't know, he was born with 4 holes and a PDA. 3 of the holes have closed on their own, yay! The 4th is in the most uncommon place to have a hole. They can't repair that hole using a catheder, so that hole has to be fixed via open heart surgery :( Honestly, I can't think about it. Oh, and the PDA is basically when a blood vessel that should close within minutes to days of being born FINALLY closed on it's own. The only problem is that it started to attach to his aorta, so when it closed, it has caused a small 'kink' in it. Kinda like when you get a kink in your garden hose, it makes the pressure in the hose greater, same thing with Dane's aorta. However, at this time, it's so small, they won't worry about it.

So, in a nutshell, we are looking to do surgery next summer. His doctor had planned on doing surgery on him before he was even a month old. We've made it this far with no surgery, and honestly, I would like to keep it that way!
 
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Ryannbaby replied to daisy729's response:
Dane is in my prayers. I'm sure everything will be just fine, but it is so scary to even think about them having surgery - let alone having it done.
I'm Ryann (30), DF Gabe (31). Our beautiful DD - 14 months - Isabella Francesca Marie - Born on St Patty's Day 2009. So in love with our little beauty!
 
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daisy729 replied to Ryannbaby's response:
Thank you :) And your DD has been in my prayers.


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