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Thread: Think of us tomorrow

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    Think of us tomorrow

    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.

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    Re: Think of us tomorrow

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

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    pIGLET1's Avatar
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    Re: Think of us tomorrow

    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

  4. #4
    Community Host of Tube Feeding Issues, Special Sentiments and Childrens Medical Matters Shannon's Avatar
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    Re: Think of us tomorrow

    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.



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    Re: Think of us tomorrow

    Praying!
    Sarah
    Isaac-6/18/05 Hypotonia 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-5/29/08 Easy baby and a big piggy eater! Spastic movement in legs is in PT. Going to see a neurologist too

  6. #6
    P2P Moderator &
    Community Host of Infancy and Toddlerhood
    JacksonsMom's Avatar
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    Re: Think of us tomorrow

    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

    "Be Kind, for everyone you meet is fighting a hard battle"--Plato



  7. #7
    Community Host of Special Sentiments, Tube Feeding Issues, and Motility Disorders srmina's Avatar
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    Re: Think of us tomorrow

    I hope it goes well!
    Susan, mom to
    Karuna (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




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    Re: Think of us tomorrow

    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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