On a slightly less positive note, we found out this week that Faith's little sister, Selah, has Vesicoureteral Reflux. Basically, the tubes from the kidneys to the bladder (ureters) are supposed to be one-way, protected with a valve-type system where they go into the bladder. Selah's ureters apparently go into her bladder in a different way, so the urine is able to travel back up to the kidneys from the bladder. She has about a 30-40% chance to grow out of it, so for now she is on antibiotic prophylaxis to prevent her from getting UTI's (because they could cause kidney infections/damage/scarring). In 6 months, she'll have testing again to see if it's gotten any better, and if not, we'll talk about options.
And, because Faith has also had at least one UTI, she will need to have the same testing done ASAP, because there is a 1 in 3 chance that she actually has the same thing. I am finding that to be the most disturbing part of this... Selah will get better, whether she grows out of it or has a procedure to fix it, and she won't remember any of it, so I'm really not worried about her. Faith has been through so much already, and thankfully to this point she has been too young to really remember any of it. I'm afraid she will remember this testing though... it was traumatic for me/Selah, and I'm imagining it will be significantly more traumatic for Faith :(
The test is a VCUG, where they put a catheter in, then fill her bladder with contrast, then take pictures under fleuroscopy as she pees to see if it is refluxing up to the kidneys. Not fun. Holding her down for testing as a baby was one thing, because babies have short memories and the hugs at the end of the test usually erased the trauma. Holding down a (really strong!) three year old is my idea of torture, for both of us. I am crossing my fingers that we might be able to get a sedative for her to take before the test...
Anyway, I will post her results after she has the testing!
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4 comments:
Hi Faith
My name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are a princess hero, beautiful trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. You will be in my thoughts and prayers. http://www.miraclechamp.webs.com I love it when people sign my guestbook. I was born with a rare life threatening disease, and other diagnosis.
hi i found your blog through someone else's gastro blog. My son was born with this diagnosis as well and is now 8 1/2 months. I have a question if you would be able to answer it. He is dying to eat real food and i am afraid to what will happen. I know its mostly trial and error but what were the first real foods you gave your precious angel?
Happy Birthday by the way......way way late lol
thank you
Kate
Hi Kate,
The first foods we fed Faith were thick foods, like avocado and banana purees. She had swallowing/feeding issues, since she was tube-fed, and the thicker consistency foods were easier for her to manage.
Before she ate those foods, she did chew on some harder foods, like big strips of dried mango or dried papaya spears, in order to desensitize her gag reflex, so I guess those were her first introduction to eating and then once she managed them well we moved on to purees. She didn't actually eat the dried fruits though, just chewed on them to get used to the idea :) We also had the guidance of an occupational therapist when we introduced Faith to eating by mouth.
I hope that you figure out what works for your son!
Raeanne
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