Skip to main content

Pillow Angel

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

Comments

Sarah said…
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!!
Erin said…
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?

Popular posts from this blog

And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU.  My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself.  That decision did not come lightly.  Another hole in her.  Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival.  Literally to give her a chance to live.  A permanent decision.  A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...

BEAUTIFUL GREEN EYES........

Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...