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Jul 21, 2008
masonsmommy
Jodi, first time mom to baby Mason born at 28 weeks 12-10-07. He has GERD, DGE, MSPI, ?food allergies, and hypotonia (starts PT end of July). On Neocate (thickened with Simply Thick) and on prevacid and EES. Home apnea/bradycardia monitor d/c'd finally at 7 months!
To mom2coy
Hi, thank you he's is growing really well. I updated his picture finally, I had forgotten how! He is almost 18lbs and 26 inches I think and is really only 4 months adjusted for prematurity. At his 6 month he was on the charts as compared to term 6 month olds. Only in the 10th percentile I think but that really made me happy. Though I will say a lot of the weight was gained when his reflux was wildly out of control and he was comfort eating A LOT! The reflux and the DGE now (I am knocking hard on wood WITH my fingers crossed) has been under control for a good while. We have had a flare or two that responded to meds being adjusted up due to his weight gain I imagine. The sleep, there are two problems really, one is him being super alert and not wanting to go to bed AT ALL! He seems to overall need less sleep suddenly. Even when he sleeps it is usually more like 8 or 9 hours max and naps are only 30 minutes. The second issue is the rolling over. He does it when he's supposed to be falling asleep and then throughout the night and morning. He gets either plays for a while then gets really upset or gets really upset right away even if we run in to roll him back. He does not know how to roll both ways. I have him in a positioner now even though I've seen him roll over in it anyway. It makes it harder at least:-) Now that I am writing this he'll probably figure it out in the middle of the night lol. As for the hypotonia. I am an NP and I knew he wasn't doing what he should be. He does not bear any weight, his neck muscles are not as strong as they should be, he does not push himself up when on his belly, and a few other things. He's often kind of like a wet noodle. The "official" diagnosis was made by a developmental pediatrician. The Children's Hospital where he was in the NICU has a NICU follow up clinic where they see the NICU grads on a regular basis for the first 2 years of life. How did you guys end up with neuro? Is PT in your home or do you have to go there?
Jul 21, 2008
masonsmommy
Jodi, first time mom to baby Mason born at 28 weeks 12-10-07. He has GERD, DGE, MSPI, ?food allergies, and hypotonia (starts PT end of July). On Neocate (thickened with Simply Thick) and on prevacid and EES. Home apnea/bradycardia monitor d/c'd finally at 7 months!
ugh, I'm sorry, I just read your other post. When did he get behind in his growth? Has it been an issue all along? I wonder to if you can get the PT at home or if that is a non-issue for you? With the price of gas and my (often failing) attempts to keep his nap schedule up I'm trying to get them into our home. Mason has also reacted to every single solid I've tried and I was told to stop until he sees Allergy this week. If we don't figure this out I am afraid his growth will slow dramatically in the next weeks/months. I'm sorry too b/c I misunderstood, I thought he was hypotonic as well but it is the opposite I see. We have not had to undergo the GI testing that sounds like you will have to so I don't have any advice there. Will be thinking of you guys....
Jul 22, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
he's so cute! being on the charts for a term kiddo is great! coyle was never a 'comfort' eater.. he's always been a boob/bottle refusers. not as bad with the bottles these days as he is with solids but none the less... i'm glad that his DGE and reflux is under control. i'll knock on wood for you too. that alert stage and rolling over should go away in a few weeks but then come back again when he learns a new milesonte. i've read about 'touchpoints' and right before they learn something new they get real fussy and then they dont sleep while trying to practice their 'new thing' hopefully he'll get back to sleeping well.

nurse practitioner? that is NP right?

i hope that the PT will help with his tone. The PT is @ Mott's in Ann Arbor about 20 min from my house. The Early On intervention program in the county i live in his horrendous so I opted to just have insurance take care of it (aside from a small co-pay) rather than wait for them to get their act together. I called EO 4 months ago! and never got a response. my pedi has called several times as well. a real joke! the gas is horrible but i get pretty good gas mileage on the highway. no apologies! will be thinking of you guys as well! when does he start?
Jul 22, 2008
masonsmommy
Jodi, first time mom to baby Mason born at 28 weeks 12-10-07. He has GERD, DGE, MSPI, ?food allergies, and hypotonia (starts PT end of July). On Neocate (thickened with Simply Thick) and on prevacid and EES. Home apnea/bradycardia monitor d/c'd finally at 7 months!
When does he start? Ha! It was ordered nearly a month ago already but our Children's Hospital PT has a wait list! I called our Early Intervention program right away and it has been one delay after another. I call regularly, I think they dislike me and they haven't even met me in person yet! They come out for "paperwork" on 7/29, who knows when the therapy will actually start. It has me furious! So I completely understand why you'd chose to drive the 20 minutes! Yup, NP is nurse practitioner. Though I still haven't gone back to work since his birth. That's a whole other story:-)
Jul 22, 2008
masonsmommy
Jodi, first time mom to baby Mason born at 28 weeks 12-10-07. He has GERD, DGE, MSPI, ?food allergies, and hypotonia (starts PT end of July). On Neocate (thickened with Simply Thick) and on prevacid and EES. Home apnea/bradycardia monitor d/c'd finally at 7 months!
I keep forgetting to tell you that I love that picture of Coyle, he's a cutie too! I always love them in their little hooded back towels!
Jul 22, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
yeah, it was a miracle to have it on that long. he hates hats too! hope you get to stay home longer... well, if you want too :)
Jul 22, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
what state are you in?
Jul 23, 2008
masonsmommy
Jodi, first time mom to baby Mason born at 28 weeks 12-10-07. He has GERD, DGE, MSPI, ?food allergies, and hypotonia (starts PT end of July). On Neocate (thickened with Simply Thick) and on prevacid and EES. Home apnea/bradycardia monitor d/c'd finally at 7 months!
Yes I do want to stay home, but with all of my student debt it may take more than clipping coupons and stopping cable to make it happen. DH is military so we are far from family and home (WI) and I haven't found anyone I'd leave him with. I'm looking for something I can do from home... We are in Virginia. Mason doesn't like hats either but doesn't seem to mind the hood of his bath towel:-)
Check with your
doctor first!