Adriana and Kody Update

Thank you all soooo much for the prayers, the well wishes and for giving me the "oomph" I needed to keep going yesterday.

Here's what we know so far...

Yesterday the Doc's at Florida South Hospital in Orlando did and X-Ray series on the baby, while they were x-raying her they had her drink at the same time.
Within seconds of the test they could see that she has something called "reflux".
She drinks her bottle and it comes back up, except that it dosn't come "out" {sorry, I know it's early}.
So, basically she has been aspirating on her own food.
This is soooo scarey because she could have, at any time, died in her sleep.

This morning an "Apnea Monitor" is being delivered to the hospital and Kayara will take a two hour course to learn how to set it up and use it. Afterwards she'll take an hour long CPR course and pass it {which should be no problem, she used to be an ambulance volunteer way back when} with flying colors and then they will release Adriana.

She's also taking a medicine now and for the life of me right now, I can't remember what it''s called but Kayara says it seems to be working.

Soooo.....it seems to me that all those prayers are working bigtime, but please keep them up because I have a feeling this is going to be a long ride for a while.

Now on to the Kody update..

I talked to the Neurosurgical Dept. at Shands yesterday {Dr. Pincus' office} and they scheduled Kody for this coming Wednesday morning. His Cat-Scan is at 9:20, then we go and get him a "Shunt Series" done and the we go up to Neurosurgical Specialties and see Dr. Pincus.
It was late in the afternoon when I found this out so I won't be able to call Neurology until Monday morning to find out when they can get him in there...we were hoping all would be done on the same day.

I don't think I fully told you all what exactly was going on with Kody so let me tell you now...while Alona {she's here...yep, finally!} is giving me a 20 second break. :0)

For the past couple, maybe 2 1/2 months we've noticed that his voice is going. First we thought it was the puberty voice changing thing but intead of his voice going from deep to squeaky and back again..it's just been getting quieter, and slurrier. It is, at the point where it's even difficult for us to understand him.
In addition...slowly he's been developing other symtoms like, clumsiness, confusion, he can't follow directions {even simple ones like "get into line"}, can't retain information, his short term memory problems are back, he's been getting morning headaches again and he is in a contant state of being what we call "The Kody Zone"..he's in his world, totally oblivious to anything..like a constant stae of confusion.

It was best described to me as this..

You know when a drunk has had too much to drink and they overcompensate to try to act "normal" but it is obvious that they are not...that is how he is.

We know things are changing, others besides family have seen it too.

Sooo...we'll start off with the VP shunt that he has in his head which leads down to his belly.
All the signs, especially the morning hedaches,leads us in the direction that his shunt is malfunctioning.
If so, he'll need it taken out and another put in.
That's a good fix...but, it comes with it's own set of complications..a fourth brain surgery.
Any surgery is dangerous...another brain surgery could really set him back bigtime.

If we find out his ventricles are within a normal range, then it's up to Neurology to help us figure out what is going on, medicines, seizure episodes, we just don't know.

Please keep praying for him too.
He's knows something is wrong, he's feeling the sting if being teased, and he just wants so bad to be normal again.
This is the first time in a long while that it is clear he has brain damage.
But...he's still a happy, lovey kid..and nothing can take that away. :0)

OK, I better run...cinnamon rolls are ready {Pillsbury..not homemade!!} and Alona has got everyone going crazy with her energy...energy my kiddo's don't have much of in the AM. LOL!!

Have a beautiful day everyone!!

Love, Kim