It's been forever since I've posted- we're plunking along.
Spencer is doing fairly well. His feeding tube was removed last March and after the initial hiccup, he's enjoying his ex-tubie status. He's slowly making progress in feeding himself.
He is getting awesome at using his walker. He walked about half a local mall and back the other day. Today he walked himself in to therapy for the first time rather than getting wheeled in.
He's enjoying being a big brother again. We had our third (and last child) in May. I can't wait until Nathaniel gets a bit bigger and can start interacting with Spencer. Right now Nate kind of just sleeps and eats and Spencer is fairly happy to ignore him.
Our long awaited heart surgery is early next month. For a while there we thought Spencer was going to have to have open heart surgery. His cardiologist has decided that he is pretty confident that he can close his ASD holes in the cath lab. Heart surgery scares me, but I'm ready for this to be over. We've had this surgery hanging over our heads for a long time.
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I started this blog when my son was diagnosed with a clubbed foot while I was pregnant. His clubbed foot is one of dozens of diagnoses now! Shortly after birth, he was diagnosed with Pierre Robin Sequence. Spencer was diagnosed with Say Barber Biesecker (Ohdo) Syndrome in April of 2012. We recently found out he likely also has Genitopatellar Syndrome. In spite of all his medical issues, he's a happy and fairly healthy kid who is always keeping us on our toes.
Hello,
ReplyDeletemy daughter had a feeding tube for 19 years (she is now 20) her Gtube was removed septemeber 1st and it's still leaking, at this point we are considering surgery to close it, can you tell me how was your experience with surgery, how long did it take, after surgery how long was he hospitalized, and how was the recovery for him?
Thank you
Darien
My advice, get the surgery asap. I don't remember if my daughter had to stay in hospital, but it shouldn't be more than one night if needed. After, you can stop worrying about it and most importantly your daughter will be much more comfortable. Healing and recovery is fairly fast and probably not as uncomfortable as the leaking site was! I would have opted for surgery sooner but wasn't given the option until a year after the removal of the peg. I know watching your child going into surgery is fucking awful and you never get used to it, but if the site hasn't healed by itself after a couple of months it's probably not going to, so I would recommend surgery as soon as you can get it, everyone will be happier 🙂
DeleteMy daughter had a peg for 5 years(1-6) and it leaked the whole time, was awful watching her constantly scratching where the stomach acid was irritating her skin. After removal, of course it didn't heal by itself, but unlike you, I had to wait a whole year for surgery to close it! She's 16 next month and doing great. I occasionally get slightly concerned that the skin seems to be permanently fused to the stomach but it's not causing any problems and I'm so glad that thing is gone!
ReplyDeletenací epiléptico y al mismo tiempo tenía a gastrointestinal trastorno, pero ahora estoy libre y curado por la medicina hecha a base de hierbas dr itua. tenía diecisiete años y estaba sentado frente a mi computer cuando me caí de la silla. lo único que recuerdo es despertarme con el peor dolor de cabeza que he tenido en mi vida. nunca había tomado medicamentos y odiaba tragar pastillas, pero tenía que empezar. cambié entre todo tipo de medicamentos porque no los tomé como se suponía que debía hacerlo. un día acababa de terminar de hacer unos mandados y estaba en casa de mi hermana cuando volví a caerme al suelo. desperté me con un fuerte dolor de cabeza y mi sobrina de 2 años bowed sober mi pierna y me preguntó si estaba bien. para entonces acababa de empezar la universidad y estaba a punto de perder mi licencia. mi escuela está a una hora de donde vivo, así que realmente me retrasé porque no me permitieron conducir hasta que tuve mis convulsiones bajo control. ¡me encantaría saber cómo otros han manejado su epilepsia! entonces, la amiga de mi hermana, emma, le contó a mi hermana sur un médico herbolario that resides in west africa (nigeria) porque emma tambiéns de áfrica, mi hermana me lo contó y decidimos intendarlo. mi hermana lo contactó y también le contó sobre mi autismo. lo hice rápidamente, lo bebí pendante dos semanas según lo recetado. Felizmente, flui a diagnosisar y descubrí que mi epilepsia y autismo habían desaparecido y hoy cumpli 9 meses y ahora estoy libre de autismo, convulsiones y epilepsia, continued compartiendo trabajos de medicina herbal natural dr itua. recommended by Dr. Itua a persona que padezca autismo, epilepsia, convulsiones, labial herpes, herpes, HIV/AIDS, culebrilla, trastornos gastronómicos, diabetes, pain of espalda, cáncer, HPV, lupus, enfermedades hepáticas y renales. información de contacto de dr itua... correo electrónico... drituaherbalcenter@gmail.com.... número de whatsapp....+2348149277967. long live feliz de nuevo con dr itua medicina hecha based on hierbas..
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