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HOME--Home Sweet Home!!! - Parent-2-Parent & Reflux in Children
HOME--Home Sweet Home!!!
Clay has been home a week now and has done great!
I've been kept soooo busy and have not had a chance to log on.
Since he had been sleeping in a crib at the hospital, we moved him out of the cradle in our bedroom to the crib in his room.
I think it was more traumatic for me than for him.
We have only had a few days of adjustment with sleeping and he has slept through the night for the past three nights.
He went to the pediatrician on Wed and weighs 11 lbs, 5 oz.
He has another appt this week and a clinic appt at Duke next week.
They are all watching him closely, so he will probably have appts each week for a month or more.
Since coming home, Clay has been eating between 20 and 24 ounces of milk a day.
Before going in, I was lucky to get 13 or 14 in him.
I hope we are avoiding FTT and a gtube for now.
Although we have had reflux issues since restarting eating--I would have been surprised if we had not!
On a side note, Clay was to have been baptized on June 8.
We have had to postpone that for the time being.
We had thought that he would be healed and ready for it when we scheduled it back in April.
I guess he has other ideas!
There are several new pics on his website under the journal tab.
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Re: HOME--Home Sweet Home!!!
So glad everything is going well!!
Huge hugs!
Dawn
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wife to: Aaron (the bestest daddy & hubby)
mother to: Hunter 7-7-05 (my baby love!)
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-bilateral Inguinal Hernia repair (9/05)
-reflux-Fundoplication and Hiatal Hernia repair (7/06)-2nd Fundo and G-tube placement (11/07)
-infantile spasms since 5 months old-no cause found yet-on Ketogenic diet and no meds-still having seizures-global delays-non verbal
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Re: HOME--Home Sweet Home!!!
Glad things are going well being back at home now.
I hope he continues to eat and grow like crazy!
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Shannon
Wife to Gabe 11/2/96
Mom to:
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Hannah 3/22/03 - Chronic ear infections as baby with tubes placed.
Otherwise, perfectly healthy.
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Caleb 7/14/05 - Former 35 weeker: GERD, FTT, Chronic Constipation, Speech & language delay, developmental delays, Dysphagia & Sensory Processing Disorder.
NG tube for 8 months;
G-tube (Bard) since 7/11/07.
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Re: HOME--Home Sweet Home!!!
I am glad he is doing well and gaining weight.
I love the pictures on the site.
He is so sweet.
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Re: HOME--Home Sweet Home!!!
Yeah!! I am so glad you all are home!
And WOW, I can't beieve his weight, I remember just a little while ago you were hoping he would be 10lb!
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Maryanna mom to:
Devon 10 - Asthma, allergies -- Clarinex, Singular, Flovent and Albuterol as needed
Joshua 3 - GERD, Asthma, allergies, chronic ear infections, fundo 4/05, tubes and adnoids out 12/05 -- Zyrtec, prevacid, singular, pulmicort, albuterol as needed
Zachary 2 - GERD, RAD, Laryngomalacia, Fundo and G-tube 6/06, prevacid, miralax, singular, qvar, xopenex, nasacort, lactobacilis, night feeds ONLY Formula-Neocate Jr w/ Farrell Valve
Grace 8 months - GERD, Apnea, ASD, Laryngomalacia, RAD, prevacid 30mg, Levisin, glycolax, probiotics,xopenex as needed, ear tubes 5/07--formula- Neocate
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Re: HOME--Home Sweet Home!!!
Im so glad to hear you are home and that Clay is doing so well!
PattiCommunity ManagerHost of Fundoplication IssuesChildrens Respiratory DisordersHealthy Connectionsmom to Spencer
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- age 19 - wonderful young man!
Severe refractory GERD since birth, esophageal/gastric dysmotility, chronic aspiration pneumonia/pulmonary abcesses, restrictive lung disease.
1/93 - Nissen fundoplication.
1/94 - Uncut Collis gastroplasty with Nissen fundoplication, and pyloroplasty.
11/94 - Cut Collis gastroplasty, Nissen fundoplication and G-tube placement.
8/97 - partial esophagogastrecomty with modified Belsey fundoplication and new G-tube.
12/00 Esophageal reconstruction/jejunal interposition, new G-tube placement.
7/01 - Gastric augmentation using transvere colon, new G-tube placement.
G fed for years followed by J feeds for several more years.
Now eating orally and the tube site has been closed as of 10/06
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Re: HOME--Home Sweet Home!!!
Glad things are calm!
Sarah - Mommy to
Mila 2-20-2007 and
Robby 4-22-2004
Mila has : ALCAPA ( heart defect repaired 2/07/08), GERD, DYSPHAGIA, HYPERTENSION, FTT ( since 6 months ), Moderate Mitral Valve Regurgitation, Heart function approx 50%, NG tube fed 100% Peptamen JR 30 cal / oz - 28 oz per day.
Tests : Upper GI X 2, PH probe, MBSS, Endoscopy, 10 EKG, 6 echocardiograms, 3 sedated.
Coronary Angiogram, Gastric Emptying Scan.
Height : 32 inches!
Weight : 8.8 kilos!
Height for weight ratio : 5%
Meds : Captopril, Lasix, Losec, Lactulose, Zantac, Motilium
And Adding a Beta Blocker 6/2
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Re: HOME--Home Sweet Home!!!
Welcome home - it is most sertainly the best place to be
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AllisonWife to
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DaleMom to
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Reggie (9.5) - mild reflux post Fundo/pyloromyotomy, asthma, Asperger Syndrome, gifted, full of attitude and wise-cracks&
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Brigid (2.5) - Loves fish and bubbles - Originally diagnosed with CP, now it's...mitochondrial encephalomyopathy causing chronic intestinal pseudo-obstruction, feeding intolerance, low vision, autonomic instability, absent reflexes, hypotonia, ataxia, ECG abnormalities, developmental regression, asthma, left MCA stroke affecting frontal, temporal and parietal lobes, intractable epilepsy, sensory processing disorder, continuous gj feeds, separate g-tube for continuous drainage.
On a pharmacy full of meds.
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Re: HOME--Home Sweet Home!!!
I'm so glad your home and he's doing well.
Yeah on the weight!!!
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Sarah Mom to
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Corianne, former 33 weeker non stop talker 6 year old
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Wesley, former 35 weeker fast as can be 2 year old.
MSPI:Allergic Colitis: Nutramagin for 8 l ng months, Plagiocephally: Cute stinky helmet.
Reflux, Bronchoscopy finding Strep pneumo and psudamonas, NEHI (Neuroendocrine Cell Hyperplasia of Infancy) a rare interstial lung disease confirmed DX with Open Lung Biopsy.
DGE (anyone else tired of puke???
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) ASD resolving & Pulmonary Hypertension (resolved
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).
Tubes 11/07. Prevacid, Reglan, Flovent, Albuterol if needed, Oxygen dependent 2L, & Peptamen Jr., CIB Juice & Boost Breeze to help weight, but oxygen has helped the most
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.
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Melissa, Born June 2nd 2008.
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Re: HOME--Home Sweet Home!!!
Oh thank the Lord!
I'm so glad you're home and things are going well....I was started to get concerned not having seen you around here again.
HUGE HUGS!!! I'm happy he's eating so well too .
KelleyWife to VannMom to DD ^Charlotte^ my angel in heaven 4/07/07-1/14/08.
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Re: HOME--Home Sweet Home!!!
Congratulations! I hope he continues to do well.
Susan, mom to
Karuna (almost 5yo)
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Her whole gut is just a total disaster and pretty much does not work at all.
She also has Cerebral Palsy, Hypoxic-Ischemic Encephalopathy, Pancreatitis, Seizure Disorder, Autonomic Dysfunction, Pharyngo-laryngomalacia, Neurogenic Bladder and Voiding Dysfunction, and is Visually Impaired.
She has a Broviac Central Line, GJ tube, Seton drain, caths, uses a foley at night, and is100% TPN dependent.
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OR
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Sameer (3yo)
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Former refluxer with asthma and a total terror!
Check out my E-magazine:
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Re: HOME--Home Sweet Home!!!
I am so happy to hear that he is doing so well!!!
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Sasha
mom to
L.Riley - 13
Dillon - 12 - moderate asthma, allergy to all nuts
Jamison - 10 - ADHD
Kaiden - 3 - ADD, speech issues, ODD
Brody - 2 - vWD type 2A (bleeding disorder), asthma, chronic GI and nose bleeding, chronic GI issues (still undiagnosised), dev't delayed, speech delayed, difficulty maintaining weight
**Takes Prevacid, flowvent, singluair, and pediasure***
"Life is not about waiting for the storm to pass.
It's about learning to dance in the rain."
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Re: HOME--Home Sweet Home!!!
I am glad you are home and he is doing so well!!!
Yay on the weight and eating!!
Sheri mom to:
Alan 5/5/01 Asthma
Hannah 2/7/04 GERD, Asthma, Ketotic Hypoglycemia, Gluten Intolerance
Matthew 1/10/06 GERD, Asthma, Solitary Kidney, FTT, G/J Tube for Feeding, Developmental Delays, Sensory Processing Disorder, Probable Allergies, Ketotic Hypoglycemia & some other undiagnosed thing but still hoping for answers!
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