Monday, December 28, 2009

Still here...

Sorry I've been neglecting my poor blog lately. Ever since Christmas Eve I've been fighting some kind of relentless monster bug.
The kids had a pretty good Christmas overall, and even got a Wii shipped with lots of love and packing peanuts from Nana all the way from Hawaii!
They have had a blast (V can even play!) and it's been a nice distraction for them while I try to kick this nastiness settled into my chest.
We got lots of pictures, and as soon as I feel better I'll upload them for everyone to see.
Until then...

cough.. cough.. gag!!!

Monday, December 21, 2009

We did it.

Well the EEG excitement is over for now. We had a super wonderful night last night trying to keep V from getting too much sleep. That combined with not being able to eat was a real treat, to say the least, but we made it.

When we arrived at the hospital this morning I was fully expecting that he would readily konk out, but true to form my boy has to do it in his own way. They gave him the chloral hydrate and half an hour later he was still bouncing off the walls. It took two of us to corrall him into a comfy spot and lull him to sleep.

After that things moved along pretty quickly. He was hooked up and they started the sleeping portion of the test. He didn't move at all during the scan except for rolling over once which they marked on the machine a movement. Other than that I'm fairly clueless as to EEG waveforms and what it all means. He did register numerous spikes that showed up during the 20 minutes he was sleeping. Not sure exactly what that means though. The neuro doc won't read the report for another day or two since the test wasn't written as a stat EEG, so I guess now we wait.

The only real casualty of the day was his attitude. Apparently V and chloral hydrate don't make a happy pair. The tech warned me that he would probably seem kind of "drunk" from the sedation for a few hours, but no drunk here, unless they meant a crabby drunk.

After we got home he proceeded to angrily stuff a handful of potato chips in his mouth, yell and grump, then he got a nice warm bath to wash the goo out of his hair. Now he's not so happily bathed, lotioned, and laying in the playpen getting a Pediasure feeding and giving Mommy a break.

... tomorrow is cardiology. Hopefully. Not. With. Sedation.

Wednesday, December 16, 2009

One Down...

Neuro went well today, besides the hour and a half we had to wait for our appointment. In the end we did find that although the wait was excessive, the doctor seems to be very thorough. He took V's history and we had a long talk about the episodes he is experiencing. The final result was a script for an EEG to be done next Monday at APH... can you feel my excitement???

Apparently my 16 hour a night sleeper of late can only have 4 hours of sleep the night before (yipee)!

He cannot eat for 8 hours before (in case he has to be sedated for the sleeping portion of the EEG).

And.... I must make sure his hair is clean and neat (shouldn't be a problem).

Here we go.....

We saw endochrinology on Monday, according to Dr. J his growth hormone levels and binding proteins are both at the very low end of normal. She was very impressed that he still seems to be growing well height wise despite it. She did say that both of those levels can be affected by nutritional status. Considering V's naughty stoma that led to his nutritional misadventures over the summer, that could possibly be the culprit. Even though it's now December, he's still playing catch up. She's not too worried. She gathered a little more information regarding the "episodes" we're investigating now, and she wants to look into the possibility that something may be off with his cortisol levels if our other doctors visits this week don't show anything conclusive. Several years back I had some major problems with my cortisol levels in relation to my lupus.

So wish us luck. Tomorrow is V's first neurology appointment. Hopefully we'll go in and find that it's nothing, that his "episodes" aren't seizure related. The alternative that it may be another heart issue isn't exactly an appetizing thought either, but we'll take it one specialist at a a time and hope for the best!

Sunday, December 13, 2009

It's like starting over...

First I want to thank you all for your kind words regarding my last post. To be honest I wasn't sure I should post about it. I've gotten so used to keeping it a private matter for so many reasons, sharing was kind of scary. I have just been so overjoyed in our newfound contact.
My William has a career in technology knocking at his doorstep, I'm sure of it. He got through some pretty sophisticated stuff to contact me. I am so proud of him. Both of them!!!
Justin, my now 13 year old (he was 8 1/2 when we were last together) has been a bit more shy and reserved. Thay have been through alot and he has some serious trust issues to work through. They were basically brainwashed into thinking that I didn't want them back. That I had sent them away. Fortunately William was old enough to know that it wasn't true. He is 16 now, he was 12 then. He's working on helping his brother understand what has happened. It's going to be a long, slow journey I'm afraid, but it's all worth it if it means that I can finally have all my children together again.
I just thank God that we found each other. They are still up north right now. There is alot to be worked out, but I talk to them often and we'll be exchanging more pictures soon.
Believe me, I'll be showing them off too!

As for the V update, we did finally get his bloodwork done Friday night. We had to go down to APH and have the NICU team draw him. They were wonderful with him and in the end it took an hour and a half, but they got it. They found a couple of halfway decent sites to draw from, but the blood had to be coaxed out of his veins. I'm just glad it's done.
Now we have Endo on Monday, then Neuro on Wednesday. Next week on the 22nd is his Cardiology appointment. Hopefully one of them can give us some answers to explain his "episodes", plus he's taken to sleeping anywhere from 14 to 16 hours overnight. He's always been a great sleeper but that's kind of excessive even for him!
A huge part of me hopes that we're just overreacting, or that maybe he does just have a virus or something, but my logical thinker knows that a virus wouldn't be holding on this long.. we'll see.

Friday, December 11, 2009

Bear with me...

I'm kind of going out on a limb here, emotionally what I'm about to write has been a very difficult subject. Not one I have openly discussed. Partly because my journey with this needed to remain private for reasons I cannot explain. Also because it's just plain painful.
Four years ago, shortly before V's birth my two oldest children went for a visitation with their father up north. They were meant to stay with him for the last couple of weeks during the summer of 2005 and return home before the start of school. I took them to the airport and put them on a plane with every intention that in a matter of weeks they would be home.
I never saw them again.
The whole experience isn't one I care to relive in writing at the moment, but to sum it up, their father stole them from me.
In the midst of dealing with V's many medical and health issues over the last four years, I have been waging a war. A war to bring my boys back home. I finally made contact with my oldest son, well, he was able to make contact with me. Apparently in the past four years my shy, quiet boy was becoming quite the technical genius. HE found me...
I still had no ability to get to them at the time and no idea other than William's (my oldest) verbal description of what my two boys had become. Today, for the first time in four years I received an email containing a picture of my children.
I know this is probably not what any of you expected to read, honestly, it's not something I ever expected to post about. Up until now it's remained a very personal and private fight.
But today... today I can't stop smiling. I can't stop crying.
More than anything, I can't wait to hold them again.

Monday, December 7, 2009


I finally did it! I uploaded the Thanksgiving pictures!!! The first one is the best homemade mango salsa EVER.. the pies in the background turned out pretty darned good too. There were pecan pies behind those.. yum!

V (Vincenz as he's called at home) with Ryan and sissy Alissa. Kalei was being a bugger and decided to stay at her Mom's the whole day... boooo :(

This is a pic of our oven baked bird. The biggest one with all the stuffing inside! The other two were smaller, but only because we had to fit them into the fryer outside. They were injected with cajun butter and fried in peanut oil. Ooohhhhh.. good.

That's Ryan smoochin for the camera.

That's me, V, and Ryan behind aunt Kelli and her macho man Caleb. He's 6 months old and weighs almost as much as V!

Ha! Ha! Daddy and V along with goofey cousin Colby :)

More V perched happily on Daddy's head!!

So there's just a few of our Thanksgiving day beauties. Sorry it took so long to get them up. I seem to get sidetracked so easily these days.
Just to follow up, V has his neurology appointment on the 16th, and cardiology on the 22nd.
We have attempted twice now to get his bloodwork done and no one can get blood out of my kid! It's very depressing, I hate him having to get poked and then it's all for nothing... sigh. Maybe the third time will be the charm. We're going back down to Arnold Palmer this time to let the NICU nurses give it a go. Wish us luck.
He's had a good couple of days, we haven't seen any "episodes" so that's encouraging. Makes the wait for his appointments less frustrating.
Still... you know my munchkin. He loves to keep us guessing so I'm definitely not letting my guard down, but it's nice to have some good days :)

Friday, December 4, 2009

Need some advice.

So I've been a little sidetracked the past week or two trying to get over the crud I can't seem to shake, so when V started feeling kind of down I figured it was the same thing.
The thing is that he seems to be fine a large portion of the day, then right in the middle of whatever activity he's involved in, he has to lay down. We didn't really make too much of it at first but then we noticed that he seems to be doing it more often, and at inappropriate times. Right in the middle of playing he will simply stop, lay on the floor, and stay there for several minutes. Sometimes he will nap a little after, but mostly he gets back up and goes about his play when he's ready.
His GI doc noticed the behavior at Mondays visit and urged us to go to our pediatrician.
When we arrived in the office, to be honest I was kind of afraid we were making too much of it. I mean when he's up, he's fine.
The whole wait time in the office he wouldn't settle down. I started to feel like I was just wasting her time. I strapped him into the stroller and gave him a book which he busily started working through the pages of when I noticed he was very quiet.
I looked over and his head was down on his shoulder, his lips had gone very pale, and he was not moving AT ALL.
I reached over and brushed his cheek and he looked at me and smiled. Then he layed his head back down again. A few minutes later he was back up and running.


Dr. R went through all the "episodes" with me and the symptoms he has. She was initially worried about seizures, but he never goes limp or spaces out. He purposefully lays down and he will make eye contact. He doesn't go limp or spastic at all.
When I assured her of this she began leaning toward the possibiity of a cardiac arrhythmia. It would explain why he is so seemingly fine one minute, then down the next. Arrhythmias can cause a sudden feeling of weakness and dizziness. It would account for his need to lie down for several minutes at a time.


We had to put off the bloodwork until tomorrow, but she wrote for a bunch. She thinks that if it were related to a deficiency in his counts though, that he would feel like that all the time and he definitely doesn't. It's weird.
We have tons of experience dealing with heart failure and such but this is uncharted territory.
Dr.R is going to set him an appointment with a neurologist just to be safe, and cardiology to check on the possible arrhythmia.
I'm just wasted tonight. Every time things seem like they're smoothing out he gets hit with something new.

Has anyone dealt with this type of issue with their children?