Hope the surgery and recovery goes well and ya'll are back home and doing better soon. Hugs, Fay (Scott's Mom)



Ben goes in for his GJ tomorrow. I know it is a straight forward thing but he doesn't get over these things very quickly and it's another GA.
Thanks to you all for your advice and support.
Helen
Wife of Paul
Mummy to Izzy 5 - eosinophilic gastroenteropathy,multiple food allergies and a slow transit gut. Allergic eczema and asthma.
Meds - mesalazine, ketotifen, cetirizine, nalcrom and inhalers.
Mummy to Ben 3 - eosinophilic gastroenteritis and lymphonodular hyperplasia. Gut nerve damage causing delayed gastric emptying. Serious FTT.
Meds - sulfasalazine, nalcrom, singulair, ketotifen, lansoprazole, amitriptyline, codeine, movicol, azithromycin, folic acid and weekly methotrexate injection.
PEGJ tube fed. Failed modular feeding.Back on neocate lcp. Waiting to start TPN.
Previous multiple food allergies. Only food cornflakes.

Hope the surgery and recovery goes well and ya'll are back home and doing better soon. Hugs, Fay (Scott's Mom)


I'll be praying that everything goes well tomorrow!
Heather Wife to Paul
Mom to
Elyssa - 5 - perfectly healthy, although very strong willed
Katlyn - 2 - umbilical granulom removed 09-06, GERD which is getting worse, FTT, asthma, dyspagia (not allowed liquids by mouth, but safe with chewables and purees), slight low tone all over, weak joint, speech delayed - caught up - fell behind again - caught up again (this time they are keeping her in speech to make sure she doesn't fall behind again), g-tube placed 12-14-07, finally got MIC-Key 06-07,dificulty regulating temps, balance and strength seems to come and go, positive autonomic eye drop test result, motility seems to have slowed but can't find a reason for it, finally got MIC-Key 06-07, clinical Mito dx
meds. - Prevacid, Reglan, Singulair, Cromolyn, Xopenex as needed, Miralax, Nuproxin, B50, CoQ10




Praying all goes well.
Shannon
Wife to Gabe 11/2/96
Mom to:
:tinkerbell2: Hannah 3/22/03 - Chronic ear infections as baby with tubes placed. Otherwise, perfectly healthy.
Caleb 7/14/05 - Former 35 weeker: GERD, FTT, Chronic Constipation, Chronic gut pain, developmental delays, Dysphagia & Sensory Processing Disorder. NG tube for 8 months; G-tube (Bard) since 7/11/07.


Praying!
Sarah
Isaac-6/18/05Hypotonia Ng tube for FTT. Getting a G-tube and muscle biopsy done soon. Suspected Mito disorder. Recieves OT, PT and Speech. Very sweet little guy!
Elijah-5/29/08Easy baby and a big piggy eater! Spastic movement in legs is in PT. Going to see a neurologist too


Good luck.
Chaney
Mom to
Zoe Marie
9/22/08
TODDLER extraordinaire
&
Jackson Presley
5/31/03
Vaccine-induced encephalopathy since 12/9/04
CP (quad), seizures, 100% G-tube fed (previously GJ), neuro-related vomiting & motility issues, CVI, dysautonomia
meds: keppra, glycolax, lyrica, oral baclofen, lamictal, robinul, zofran
www.jacksonpresleydiamond.com
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"Be Kind, for everyone you meet is fighting a hard battle"--Plato
I hope it goes well!
Susan, mom toKaruna (6yo)
Karuna has Cerebral Palsy (from HIE), Dysautonomia, and Autoimmune Disease (Crohn's disease + ?). She has a Broviac Central Line, GJ tube, caths, uses a foley at night, is 100% TPN dependent, and on oxygen. Visit Karuna's Caringbridge Page
Sameer (4yo)Former refluxer with asthma and a total terror!
Neena (born 7/20)Prolific refluxer
Check out my E-magazine: www.ComplexChild.com



Praying![]()
Chris- proud Mommy to Nick (11) my frog and soccer lovin boy! :playvideogames:
Jacob (7) Skin biopsy shows DX of Neuronal Ceroid-Lipofuscinoses (NCL or Batten Disease for short) a rare progressive disease with no cure, Epilepsy, Fundo x2, hiatal hernia repair x3, patch placed to strengthen diaphram, G-tube 7-04 to 8-06, GJ placed 8-06, back to G tube 10-06, dysphasia, T & A, reflux, Global Developmental delays, Microcephaly, fatigue, heat intollerance, sensory integration disorder, DGE (improved), wears DAFO's, early stages of retinitis pigmentosa, behavior issues, completed intense day feeding program (9-7-07) and was 100% oral now tube fed again. All around lovable little guy. :mickey_balloon:
Visit me at www.caringbridge.org/visit/jacobgeer and www.jacobsprayer.org
Jacob’s Montage
Sophia (Jan. 06) my miracle baby :tinkerbell2:
Joshua 8/16/08 our surprise! :babyboy:
8 Angels in heaven (miscarriages) :angel_teu35:
wife to Rob for 13 yrs
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