...still waiting...

Last injection was June 28th and we're still waiting to figure out what to do next. We had a CT scan, and finally recieved an email from the doctor who reviewed the scan. There has been improvement but there is still an extensive number of small cysts. He will review with the entire surgical team and let us know...still waiting...

Why are hospitals SO disorganized??

We had a 2:00 appointment today for a CT scan. After starving Kaiden since midnight, we left at 12:45 to get there right on time. We did get there about 1:45 and checked in. They came looking for us right away, telling us we where supposed to be there 2 hours ago. Who knew...not me! Maybe the lady scheduling my appointment should've told me that! Oh well...then they went on to tell me they were supposed to call me to push up my appointment by a few hours. That would've been nice, instead I was distracting a hungry baby all morning! I let it go....whatever...shit happens. This all happened after I had to call into the clinic to see when we were scheduled. Must've slipped their mind to let ME know of our appointment date...ha!
Anyways, they were rushing around trying to get a consent form signed, but wanted to start an IV right away while they were waiting. The freezing gel didn't have time to work, but they wanted to try anyways. The first try was in his foot, and when he started screaming and trying to get off the table, they had reinforcements come in to hold him down. The second try was on his hand, and he kept up a good fight! Talk about tramatizing a poor, little baby! When I started crying too, they decided to stop.
Finally, the consent form arrived and was signed, and they decided to sedate him first. I felt horrible and incredibly mad that my little boy had to go through all that.
The scan took about 20 minutes, and he was awake a few minutes after that. After a good feeding, he was his happy smiling self again. Hopefully, this doesn't leave a lasting impression on the little dude. This isn't the last time we will be going through something like this!!

The waiting game...

It's been a month and a half since the last injection. I had hoped we would've at least had another one scheduled by now, or had a follow-up appointment. But things take SO long to get going. I emailed pictures of the progress on Kaiden's neck. It's funny how all of a sudden I notice how much smaller it has gotten, and am happy. Then the next day it seems big again, and I'm discouraged with all the work we have left to do.
The dr wants to do a CT scan before continuing with injections, just to compare to the prior one. I tried to push for another injection asap, but he wants to wait. I guess he is the professional!!  This is such a waiting game...
I'm back to work in 9 weeks. I can't believe it. It's going to be really exhausting working and doing these appointments. Plus my husband is working out of town all week, so I'll be on my own. At least my work is willing to compromise with me and give me paid days off for his appointments. I really lucked out with my manager being SO supportive through all this.

Kaiden at 9 months old

Some people should just shut their mouths...

I was at the grocery store today. I had an older woman come up to me and tell me how cute Kaiden was. I was so happy. It feels like people are just looking past his neck and seeing the true cutest of this little dude!
Then, I was waiting in line and another lady came up to me. She asked how old he was, and then asked what was wroung with his face. I told her and she said, "He'd be so cute if he didn't have that on his face." I was speechless. I didn't even know what to say. I knew the people in line where staring at me, wondering how I would respond. I almost cried right there. Luckily, she walked away before I slapped her! Then I just said out loud to Kaiden, that he is cute no matter what. He really is, and I want him to know that.
Some people just make me shake my head...

New friends, new advice, new strength...

I came across a few other people dealing with children with cystic hygoroma today on facebook. It's nice to know I'm not alone. I feel bad about not posting pictures of Kaiden's neck on facebook. I'm not embarassed. I feel like I need to protect him from ridicule. I feel like it will all be over soon, and I can pretend it never happened. Is that completely ridiculous? He's 9 months old today, and we are still a long ways from being rid of this. I never imagined it would take this long. But as I hear other stories, we are lucky. We don't have to deal with a feeding tube, we don't have to deal with surgeries (yet), we don't have to deal with other complications...

I did come across this quote and it says alot...

You Are Strong
How often has it happened - an acquaintance hears your story or sees your child and says, "I'm not as strong as you. I could never deal with all the things you deal with." And you brush it off, and maybe even feel a little condescended to. But you know what? They're right. You are strong. You are facing things that the average parent doesn't even want to imagine, and you're handling them. Whether you were strong to begin with or had strength thrust upon you by necessity, you're one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be strong. But appreciate that strength now. It makes you special, capable, a force to be reckoned with.