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WELCOME, GUEST |
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(1 member)
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niylnnrae @a…6 |
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ELYNN ROSE DIAGNOSED WITH HIRSCHSPRINGS DISEASE
ElysMommy |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 | 31 |
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LOOKING UP.
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May 03, 2013 08:43pm (EST)
Well, Elys has been doing pretty good. Besides a few sleepless nights because of teeth and needing to go up on meds, hee stool has been thick, she's eating more things. We finally figured out what kind of things work for her, ans what doesn't. On a sad note, Elys father and I split up, and were all taking it hard. Ely cries for her dada and just wants to spend time with him. It's only been a weekx but I just don't understand how you can go days without seeing your child. I can barely go an hour. I guess its just true that mothers have stronger attachments to their children. I just thought he wouldn't be like this. Anyways, Ely won some stuff from www.socks4surgery.com!! She won a onsie leg warmers and socks that say nurses love me!! She wears the leg warmers to crawl on the rough rug, and she's gonna wear the onsie to go see her nicu nurses, and the socks for her next surgery! I love sites like that because they really have the kids at heart. Ellen (thefounder of s4s) didnt know her child was able to wear socks during surgery and thought, this would be a mice thing to donate to kids waiting for surgery. She's purely an angel!
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Posted by ElysMommy | Comments: (3) | Permalink
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SURGERY
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Apr 15, 2013 04:30pm (EST)
Well surgery was supposed to be on the 19th but now the surgeon wants to wait till June. I was already so nervous and scared about this surgery, and I had prepared myself for it to happen sooner rather then later. and now I have to wait again. This is driving me insane. I just want this to happen so we can get used to a new normal again, and get our lives truly started.
On a good note. Ely turned one on the 11th!!! I have a beautiful smart one year old!!!
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Posted by ElysMommy | Comments: (3) | Permalink
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HOSPITAL
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Mar 06, 2013 09:19pm (EST)
Sorry for the lack of updates. We spent a total of 2 weeks in the hospital because Ely was "dumping" meaning she would drink formula, and it would come out almost right away into the bag. she wasn't digesting or absorbing anything and becam very dehydrated and looked horrible. It doesn't take long for her to start looking this way, and it just breaks my heart to here her cry. Her doctor changed her formula and put her on a new med which is working very well. The extra fiber from the special formula is helping thicken the stool as well. Hopefully this is the only time this happens, because her surgery will probably be at the end of April to correct the disease and reverse the ileostomy.
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Posted by ElysMommy | Comments: (4) | Permalink
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SUPPORT PAGE
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Feb 07, 2013 10:45pm (EST)
For anyone who would like to stay more up to date on ely, i made a facebook support page. I tend to be on there more, lol.
www.facebook.com/elynnshdjourney
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Posted by ElysMommy | Comments: (2) | Permalink
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HEALTHY GIRL!
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Feb 05, 2013 08:49pm (EST)
Just got home from the doctors, cause Ely woke up with what looked like brush burns on her nose the other day. At first, I was afraid it was impetigo (a skin infection) but then yesterday, it was scabbed over. The only thing I can figure, is her nose got really sensitive from the nasal wipes we started using a couple days ago, and then she rubbed her nose against the side of her playpen. There were blood smears on the playpen. Basically, the doc said I'm doing everything I can for it. I threw the wipes away, ans put some of the nistatin powder for her stoma on it. It just looks so bad.  but she is a very healthy little girl despite her disease! She's in the 50th percentile for her weight. 75th for her height, and 90th for her head size!!! She is truly my miracle!!
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Posted by ElysMommy | Comments: (3) | Permalink
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ALL BETTER!
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Jan 17, 2013 08:07pm (EST)
Hello ladies!! Glad to undate that Elys much better! She had tried pancakes the day before Christmas eve, and no one told me that the batter has a lot of surger. She lost about 2 pounds within 3 days, and just wasn't herself. It only took a week to get back to herself! She now has her chubby cheeks back, and she's being more active again!! Even sick she was still a little trooper. Still smiled for me, and still laughed. And while I'm going to miss how cuddly she was during allof it, I'm so happy she's okay!! And we didn't even have to go to the hospital!! Thank you girls who follow our story for all your support. It mean so much to come on here and see that there's comments. Support is a major thing to help us get through the hardships of being a mommy of a special child!
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Posted by ElysMommy | Comments: (3) | Permalink
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STRESS
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Dec 26, 2012 07:53pm (EST)
So, things with Ely have been play, until we tried giving her a few new foods. She got to try mashed potatoes, bread, eggs, and cheese. Her body didn't agree. She started to dump, which basically means all her food goes right through her into the bag, and I think she might of lost weight. Were going to the doctors tmrw, and hopefully everyrhings okay. she's on a strict diet, so we can flush out whatevers hurting her. I'm so worried about her, I just don't want her to be sick.and hurting. I never want to hurt her.
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Posted by ElysMommy | Comments: (3) | Permalink
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MY AMAZING LITTLE BABY
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Nov 30, 2012 03:35pm (EST)
Ely has been more then a joy for me. This little girl changed my life in so many ways. She's so smart, she says mama, dada, baba and sings lala when music cones on. Her therapist says she's a baby genius. She has a 12 month grip, has been sitting on her own since she was 5 months old, and is very easy to teach thong. She figures out toys so easily!! Because of having a picc line in her arm so long, she did have low lone in that arm, but now, you would never know. Her ot says it even seems like she might be left handed, but it's way to early to tell. I am so thankful to everyone who has come here.and read elys story, and showed me such amazing support. It was really all of you strangers who reached out to me, that helped me with the sad part of all this. I have the best life!! <3
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Posted by ElysMommy | Comments: (2) | Permalink
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<3
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Nov 16, 2012 03:01pm (EST)
Sorry for not updating!!! Life is pretty busy with a 7 month old. She doesn't crawl yet, but she's still a hand full. As of right now she will be having surgery at a year old to reverse the ileostomy, and to correct the disease!!! She's doing so well, he thinks it should only take one surgery!!! I'm just so proud to be her mommy!!!
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Posted by ElysMommy | Comments: (2) | Permalink
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YAY!!
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Aug 28, 2012 02:01pm (EST)
It's only been 2 short, wonderful months with my baby girl, and she already has her picc line out!!! She has been soo amazing through everything. She's almost 5 months and is almost 16 pounds already. And coming from 5lbs that's quite amazing!!! Especially since she has digestive problems. They are already talking about the corrective surgery and hopefully scheduling it sooner then we thought!!! I'm so proud of this little girl, she teaches me something new everyday. We also had early development come to see if she needs pt and ot, and even though she does for her arm, neck, and head, she is well advanced mentally. She is speaking at a 6-7 month range. She watches and studies people and different things, and she laughs and talks like crazy!!! She is such a good baby, I couldnt ask for anything better. <3 I wouldn't trade you for the world Elynn rose. <3
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Posted by ElysMommy | Comments: (2) | Permalink
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