busy day at Childrens Hospital

Lets start off with yesterday Kenzee had her well baby check up. She is a little behind developmentally but nothing too concerning to the doctor. She has once or twice responded to her name. She has amazing muscle tone. She is (we are hoping) starting to smile responsively. She weighted 11 lbs 2 oz, and 22.5 in long!!!!! Ya for our big girl.


So today was a busy day....

It started this morning getting Kenzee's blood drawn. They tried again to do it in her little arms but once again her veins are too blown and weak to give them all the blood they need. So they took the blood again out of the vein in her head. So now I am done with them trying for her arm.

So the first appointment was GI. It was a recheck on her reflux. The doctor was very impressed at how well Kenzee was doing. I said she was still spitting up and vomitting. But the doctor said that is normal and the amount she is loosing isn't affecting her putting on weight. She wants us to follow up with her in 2 months.

Then we had her appointment with her Plastic Surgeon. Dr. Cohen seems to be an amazing doctor who has complete faith in this whole process. He agreed with Dr. Meltzer (the neuro surgeon) that Kenzee can have the endoscopic surgery. This is exactly what we wanted!!! YA!!!!! This is where they will put two "W" shaped cuts in the top of her head and go in and unfuse the plates. He said we should know in the next week or two when the surgery will be but he doesn't think it will be more than a month away. He stressed the fact that the surgery isn't going to fix the shape of her head rather it's the helmet or band that she will wear that will fix it. She will wear it for 3-6 months. There are two companies that work with this Doctor that do the band therapy. One is Scope the other is Cranio Tech. Scope is the one my insurance covers. Unfortuantly they aren't as good as Cranio Tech. My doctor and his nurse with out saying it said those helmets aren't as good. But if we go with Cranio Tech it's all cash pay. Each helmet costs somewhere around $3,000. She will more than likely need 2 total.

We are trying to plan fundraiser to help us raise the funds because for us if the other company isn't as good we don't want to chance it. I am going to be calling Cranio Tech to see about payment plans and options we have. I will keep you updated with the progress over the next few days and weeks.

Thank you for all the prayers and love!!!!