Ivey weighed in at 10 pounds 6 ounces yesterday. This is her heaviest so far!! She has gained a whopping tenth of an ounce in 3 weeks and she has now surpassed her weight from the week of her lip surgery 3 months ago. Eventhough her weight gain is minimal, she looks really long. She is growing.
Ivey's palate surgery is scheduled for February 2nd back at Scottish Rite. Her cranio-facial surgeon said he would like to see her put some weight on before then, she is doing her best. Ivey will spend several days at Scottish Rite following her surgery; however, the doctor will not pin point exactly how many days. During her surgery Ivey's ENT will also be in the room. He will run another hearing screen on her. He will also scope down her throat above the trach and below it to take 'pictures'. The pictures will give him an idea to how and when he will approach the reconstructive surgery to the deformity to her airway. On the downside, the ENT said under normal conditions he likes for his patients to be near 20 pounds before he will perform the reconstruction. On the upside, he added that Ivey's case is unique and he will make his decision after he scopes her airway.
Since Ivey's surgery is coming up, I have been searching around reading about the surgery, etc. I ran across THIS article. Not once have Matt and I considered that Ivey should not have her cleft lip and palate surgery. There was never even a discussion. Correcting Ivey's lip and palate is pretty straight forward, no reason for debates. And, the lip/palate surgery does pose risks for Ivey. It is hard to comprehend what really happens within the walls of homes with special needs children. I believe unless you actually live in the home 24 hours a day, there is no way to truly understand, or place judgement on decisions. Ashley's parents have established a blog to explain the family's position and the choices that have been made for Ashley. Both pages are worth reading. Ashley's parent's blog
Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
1.13.2007
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3 comments:
Gwen, I don't know if you noticed that the comment above mine is from some pervert site--you can block it from leaving a comment again. I can ask Boomama how, if you'd like. Yuck!
Anyway, congratulations of Ivey's weight! Addie is a slow grower, too--if she gains an ounce a week we're thrilled! She's tipping the scales at 13 1/2 right now;)
I'll be praying for you as you get ready for Ivey's procedure--specifically that this one only involves a SHORT stay!!
I will be praying for Ivey to gain and gain and gain!! Thanks for letting us know how to pray specifically for Ivey!
I saw that article and it is heartwrenching. You are right, I cannot imagine having the 24/7 care of a disabled child. Will be praying for you during this waiting time.
PS-Is that first comment a spam?
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