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12-21-2012 at 6:48 PM
preggersIN...
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preggersINschool25 is not online. Last active: 06-19-2013, 11:15 AMBronze

Brief update... or perhaps longer

Grant's genetic appointment was moved up, so that happens the day after Christmas.

I got his MRI results and found out all the parts in his brain is developed and in the right place. However, he has mild to moderate loss of white matter. Not sure what that means for us, but I will be making an appointment with a neurologist after Christmas.

Got the run around today trying to find a nutritionist or feeding specialist, but my developmental pedi seems concerned with certain goals that we need to meet or he wants to see us. My regular pedi thinks he is above 10 percentile, but he is not. He was 17lbs 8oz on the 12th and 17lbs 11oz today. I did get an RX for reflux meds, so I'm hoping that will help because his eating is getting worse. He is only taking 3oz every 4 to 5 hours during the day for most feedings.

I have been on the phone ALL day with doctors and nurses and therapists. Ugh and I had to visit the Pedi today on top of everything.

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12-21-2012 at 6:57 PM
SY Smiles
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SY Smiles is not online. Last active: 06-14-2013, 11:46 PMBronze
Aww, little Grant. I wish I could just hug him. I know all of this is so frustrating but hopefully with every phone call and every appointment you guys are closer to answers. I think of you and your family pretty much all the time.

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12-21-2012 at 7:38 PM
cs1225
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cs1225 is not online. Last active: 06-18-2013, 9:08 PMBronze

SY Smiles:
Aww, little Grant. I wish I could just hug him. I know all of this is so frustrating but hopefully with every phone call and every appointment you guys are closer to answers. I think of you and your family pretty much all the time.

This exactly.  I feel like you are getting so much closer to answers.  Constantly praying for you all. 


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12-22-2012 at 7:02 AM
karleegirl
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karleegirl is not online. Last active: 06-15-2013, 6:29 PMSilver
Check with your insurance company and see if they have a nurse case manager. They can advocate for you and Grant. also check at the hospital where the developmental pedi is and see if they have any patient advocates.
I bet Grant could qualify for wic since he has some special feeding needs. You dont have to be dirt poor to qualify. He may need a special formula with added calories.

 
12-22-2012 at 7:31 AM
CotterpinD...
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CotterpinDoozer is not online. Last active: 06-19-2013, 7:43 AMBronze
Preggers.... I know this is all hard, but it's like someone else said the other day (sorry, don't remember who).  You were chosen to handle this in life because you CAN handle it.  You and Grant are forming the most incredible bond through this whole thing.  I know with your foot and that pain that it's hard to see much past your own pain and heartache with Grant.  You guys are on a great path with all the therapies you've begun and you're beginning to get answers - which is going to make the whole process easier.  Just remember to take time out to stop and hug that beautiful little guy... you both need it!  We're thinking of you guys.  Good luck with everything... chin up! 

Karlee had some great advice about patient advocates and nurse case managers.  Someone, anyone, who can provide some support and direction for you guys would be great.  I'm sure you feel isolated by all of this - but you're doing a phenomenal job by realizing Grant's needs and doing everything you can despite the crap that you yourself are going through.  You really are doing an awesome job.  And so is Grant! 

And enjoy your first Christmas together!   Don't know what you guys have planned - but if it's nothing, you are so lucky to spend Christmas morning with that handsome, smiley guy who loves with absolutely everything he's got! 

Sorry this is long and I hope it's not preachy - but I hope you know that you are definitely supported around here.


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12-23-2012 at 4:13 PM
sparks2987
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sparks2987 is not online. Last active: 02-12-2013, 6:45 AMSilver

oh hun, I am sorry I know this is very frustrating. My nephew has chronic kidney disease, the run around from this specialist and that one is insane and incredibly frustrating. He has a swallowing aversion and has to be fed with a feeding tube, one doctor says to see a nutrtionist another says an slp will help. He also has reflux and would only drink 1oz at a time as an infant.

I hope you get some answers that you can cope with soon and learn how to help him.

we are here for you!


 
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