Frustrated-almost-BEYOND BELIEF

I know everyone wants updates on Keegan, and that post will come later tonight when I have time to sit down sort through all my thoughts, feelings and emotions of the past week. But right now I want to VENT on something that I don't think is right or fair. I just want to stress these are my opinions and mine only.

So Keegan is 21 months this month, almost 2 right? He has a life threatening disease-medulloblastoma right?!?! He has relapsed and hope upon hope and pray with all our heart the path that we are currently following will keep him cancer free for years to come But I do have a problem.

That problem is all the foundations out there, like a few you may or may not know, that grant wishes to sick and terminally ill children. They have age restrictions. For a nationwide one you have to be 2.5 which we wont reach until March of 2012. Another local wish organization you have to be 3.

I know there are age restrictions for a reason but the trips are for the families as much as they are for the children. They are memories to be made that in some cases are the only vacation memories a family has. I am very upset, made, and frustrated. I know my son would not enjoy Disney, he is not old enough, I completely agree, however; I have been thinking and I believe a Disney Cruise would be enjoyable by all. He could meet the characters, go to the beach and have fun on their private island. The memories made would be priceless yet unless I am LOADED I am unable to make those memories because he is "not old enough".

Ugh, I am just upset and want to cry, most families have a lifetime, we may not and that sucks!

Houston We have a Problem....

Don't worry this post is about nothing major; Well I guess it could be major but in the grand scheme of things I think it can be worked out. This is why I am posting this. I need some mommy advice on what could be going on and how to correct it.

Keegan began sleeping through the night at 2 months of age (I know right, we were totally blessed!) but now is a completely different story. Since this whole cancer thing and being in and out of the hospital and whatnot, he is not sleeping through the night. In fact, we are lucky if he only wakes us up once. Now I know this is "common" that most kids don't sleep through the night for a long time but ALOT do.

I guess it's not just the waking up that concerns me, heck I am now a stay at home mom and can take naps with him when I want, which is usually never because I can think of  a TON of stuff I need to be doing. What concerns me is the way he wakes up. He wakes up crying and/or screaming every.single.time.

First we thought it was because of the difference in his hospital rooms vs home, but that didn't make much sense since he was in the NICU for 2 weeks after birth and then began to sleep through the night. Then we thought it was a light issue (we keep our bedroom VERY dark, black curtains and dark walls). We have tried a couple of nightlights at a time and he also has a turtle that projects the constellations on the ceiling. He was still waking up 1-2 times a night screaming. Last night we tried one of those clip on lamps for reading in bed, we put the dimmest bulb we had in the house in the lamp, 15 watt, and tried that out.....still woke up twice!

I might add that he gets a 8 oz bottle of Nutren Jr. (his primary source of nutrition right now) before bed. He usually wakes up at 1 am and I give him 6 oz after all other soothing techniques fail, but I really don't think he can be that hungry-can he?

I am at a loss, I have thought about asking our Doctors for sleep study to see if he is experiencing Sleep Apnea. I am willing to try whatever to find a solution. My good friend over at Loving Logan just found out her son was having sleep problems because he had asthma-that's a thought also I guess.....

Does anyone have any suggestions, comments, or words of advice? It's not so much that I NEED a full nights sleep as it is he is not getting the benefit of a full nights rest.......