Thursday, December 11, 2008

Spina Bifida Clinic

Alo had spina bifida clinic today.. That means we did urodynamics, vcug, ct, shunt series, ortho x-rays, then saw ortho, saw neurology, saw PT, saw rehab and saw nutrition.. I HATE these days. They are sooooo long.

But I have good news... Alos last urodynamic study his bladder maxed out at 34ccs but started leaking around 28... This time he held 120!!! That is HUGE!!! Still not what its supposed to hold but that is a huge jump.. Also he doesnt have to see neuro or Ortho for 2 years!!!!! The bad news is if his fonatel is still open then they will talk about skull reconstruction. Yikes!!

Right now his fontanel is open from his forehead going back towards his ears... Its about 3 inches wide and 6 inches long from front to back.. Its closed a lot in the past 2 years but still has a ways to go. About 2 years ago it was probably 9 inches long, 3-4 inches wide and went from near the back of the top of his head to his eyebrows and he had an open spot on his forehead between his eyebrows... so he has made progress.. and hopefully will continue to make more.

And of course still no weight gain... Holding steady at 12.8k

11 comments:

Anonymous said...

Hi Kourt!
Im Aracely (preemiechat) from Monterrey, Mexico, I always follow your blog. Im so happy for Alo's progress, I hope that he does not need other surgery for reconstruction.
Our prayers are always with you and your beautiful family, our best wishes for Christmas and a very happy New Year for Aybra(wow she is so beautiful, I cant believe she is almost 1 year), Kaia and Alo.
Saludos
Aracely

Anonymous said...

Way to go! I am glad things are looking up for you.

I found your blog from themamasonline and think that they are wrong about you!

You are one strong lady!

Khourt said...

I was unnware that I was being discussed at some website, but more power to them if they feel the need to talk about me and about whatever!

jessica said...

YAY for Alo I am so glad He's doing good, I sure Pray that he will NOT need a reconstruction surgery.

Alo sure is a Cutie!!!!

Anonymous said...

They talk about her on a few sights. She is judgemental and mean spirited. Always judging others and never accepting any suggestions for her own life. That is the worst kind of person. We are all made differently that is what makes the world a wonderful place. She expects everyone to have her views. Then, in turn calls herself "Godly". I am sure this won't get published but at least you will see it and think. Of course you will have all your followers back you up. Because you can't stand on your own merit. If you were really as you say you are you wouldn't comment on your sight and would keep it to yourself and think about what others are saying.

signed, one of many who have been insulted by you.

Anonymous said...

Now, here you go again. Oh, Khourt you are a wonderful Mother! Blah!Blah!Blah! I see you published it for sympathy. Crazy...why does anyone bother. Very passive aggressive on you part I must say. I guess that is a perfect way to describe you.

Anonymous said...

Ugly hairstyle.

Khourt said...

It is very pathetic that people have to come to a blog about my CHILDREN and post mean things.. Really... will you people get a life??? Obviously nobody is going to agree with me 100% but thats life. Learn to deal with it. Its quite sad that somebody from over a year ago will hold such a grudge over something so silly... Shows just what their priorities are..

Back to no more Anon posting!! If you cant own up to who you are posting then you dont need to post.

Fallon said...

Your ability to offend people to this degree with your opinions should really be listed as a super power by now... it's a never ending source of amusement.

Seriously. I come to your blog to read the comments when I need cheap entertainment. There is nothing funnier than watching bent out of shape people try to think up new insults to prove how wrong your opinions were!

I mean, you have strong opinions and voice them freely, but normally people who think you're wrong just move on with their lives, they don't fixate.

This is way funnier!

nidia said...

those people that have said mean things about you need to get a LIFE. seriously.. how pathetic that insulting someone on the internet brings joy to their life.

Deidre said...

Sigh Khourt, this is sad and I am sorry you have to go through this. Yes, you are opinionated and let others know how you feel, but how in the world is that insulting? Whatever, to those that have a problem with her, why post a comment on a blog about her children? Why not send her a message instead?