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Welcome to you and your family!
I lurked for a while back in April and now I figured it is time to post.
I'm Erica from North East PA. I have five great kids: Nick (10); Niamh (7); Norah and Nevan (almost 3) and Baby Nathaniel is almost 11 months.
Nathaniel is the reason I'm here. I'll give a quick (as possible) history!
He was born weighing 7 lbs 13.8 oz and by 6 weeks was only 8 lbs 4 oz. We discovered he had a milk protein allergy. I quit dairy completely and he shot up 8 oz. At 10 weeks we found he had two holes in his heart and at five months he had a PDA ligation. At his two week follow up from heart surgery, we learned that not only did he have RSV but his stomach was 85% through his diaphragm. In April he had a toupet fundoplication repairing the hole in his diaphragm and fixing the silent reflux.
Now Nathaniel is 13 lbs 5 oz at 11 months. Still not growing and we went back to his Surgeon at CHOP. They did a full vitamin work up and we learned he is severely vitamin deficient with Zinc and D being the lowest points. The doctor assumed my breastmilk was deficient (I am a dairy free vegetarian BUT I just had all of my levels checked and they are in normal range.) We started him on a vitamin and microlipids mixed in to his food.
He is on solids (no gtube since he eats well.) We are still on stage 2 foods as he gags with most things with texture but no true food aversion since he will try whatever is offered. He is markidly delayed (barely sitting and rolling from front to back only) but it is thought the heart then fundo surgeries are what is causing him to be weak. We;ve had neuro, genetic, kidney, orthopedic, GI, cardio consults with no real answers.
Anyway, HELLO! LOL I look forward to reading what everyone has BTDT.
Welcome to you and your family!
Heather-
Wife to Chad for 7 years
Mom to-
Scott-my 6 year old generally healthy, peanut allergy boy.
Hollen & Hannah- my 4 year old healthy, always a handful twin girls.
Adaliese- my 2 year old extra special 3P14.1 deletion little girl. PDA with PHT closed 12/07, coloboma L eye, FTT, hearing loss (tubes 12/07), GERD, DGE, hydronephrosis of L kidney-resolved, kidneys fused at lower lobes, asthma, ng tube 1/08-4/08, 100% G tube 4/08- present, Nissen 6/09, global delays, PT OT ST.
Hi, welcome. Hope you find help and support here.
Hello and welcome!
Vicci
mom to Samuel :terri:
What lies behind us and what lies before us are tiny matters compared to what lies within us.
--Ralph Waldo Emerson
Welcome!
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
Welcome!
Julie
mom to Émilie, 7 years old, high-risk stage IV neuroblastoma (dx April 08), 6 rounds of chemo, 1 myeloablative chemo, 1 stemcell transplant, 20 radiotherapy treatments, ng tube installed in May 08, removed May 09. Cancer relapsed Oct 09.
and William, 22 months old, happy healthy walking smiling wire-grabbing climbing on the kitchen table "terror" now with 16 teeth
Welcome!
Amy, Mom toKaylaNoah :talkonphone:
Nicholas :whitecat:, Common Variable Immune Deficiency (CVID), Asthma, Reflux, IBS. Recieves IVIG
Hello and welcome
Jennifer - Mother to:
Nikki , Britney,Mandy,Muffin and Lilly
Lilly 2 years old
open heart surgery at 1 week of age (coarctation of the aorta, atrial septal defect,patent ductus arteriosus) still has a bicuspid aortic valve and two superior vena cava's,
subclavian artery perforation (requiring emergent chest reopening and resuscitation)
developmental delays, reflux, delayed gastric emptying, mild periventricular leukomalacia, mild left hemiparesis, g-tube
Lilly has taught me the true meaning of grace, strength, and the ability to make the best of every situation.
I AM LUCKY TO BE HER MOTHER!!!!!
Hello and Welcome!
Kelly-Mommy to Kaylan Kristine-former epileptic (childhood petit mal seizures)
Kaylan-12 year old little girl that wears nothing but HELLO KITTY
hydrocephalus (vp-shunt),somewhere in between 25-30 surgeries, seizures (controlled by phenobarb), CP (Spastic quadriplegia), scoliosis, mild asthma (albuterol as needed), Failure to thrive, reflux,g-tube button (nutriport) fed (prefer the j-tube she had),develpmentally delayed, classified at school as SXI...My heart and soul!!!!!
Special Children are always given to special Parents...we are the lucky ones!!!!!!!!!!
hello and welcome
Mary-mom to four beautiful kids and the biggest Germaphobe you will ever meet
Thanks for all the warm welcomes!
Welcome....from my home state
You will find a wealth of knowledge here!!
Hi and welcome.
Melinda- Wife to Dale (Married 10-3-92)
Proud Mom to:
Sarah (7-24-96)
ADHD, PDD-NOS Takes Paxil, Concerta, Melatonin
Connor (6-4-01)
Type 1 Diabetes , Reflux (off meds since his Fundo 7-31-07), Asthma, Allergies, chronic sinus disease and chronic ear infections
Takes: Pumping insulin w/ a Minimed 522 insulin pump, Pulmicort flexihaler, Rhinocort nasal spray, Hydroxyzine, allergy shots
Welcome!
Wife of Chris
Mom of:
Emma :: - 27 week preemie born weighing 2lbs 3oz. Now at age 3 weighs 34lbs and is 39 inches tall. Happy and healthy.
Teddy- 25 week preemie born weighing 1lb 7oz. Spent 6 1/2 months in the NICU. Now is 21 months old and weighs 21lbs. Has g-tube, nissen, oral aversion (except the pacifier), sensory problems, and bpd. Works with PT, OT and speech therapy. Now a busy walking and running toddler!
welcome from another CHOP family. we are frequent flyers there unfortunately. where in pa are you from?
Jaclyn
We are in Stroudsburg but at CHOP once every two weeks...
Erica
Momma to Nick (10); Niamh (7); Norah and Nevan (2.95) and Nathaniel (pushing a year.)
Nathaniel has milk protein allergy; PDA ligation 2/08; Toupet Fundo 4/08; FTT; Hypotonia
My Blog
Hi and welcome so glad that you have found us.
Danielle Proud mommy to
Nicholaus Patrick 7-26-95--abused at age 3 months resulting in CP, seizures, blindness, nonverbal, nonmobile, GERD (nissen fundo 10-3-02 and g-button) my little prince;
Alexander Martin 12-15-00 (died 12-17-00)--my angel;
Victoria Noel 3-25-02 and Elizabeth Ashley 7-6-04--my two little healthy angelic princesses;
Wife to Christopher 6-21-99
Hi
Jinjue
visit Jacob's website & Cardiomyopathy"Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight."Proverbs 3:5-6
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