Invisible Diabilities

Being that I do the 11pm feed, I have found it best that I just stay awake until it is done. During this time I try to get things done, but I usually spend it researching, watching mindless shows, or just plain vegging out (this time would be the reason the whole food issue from the last post was brought to light).
Well, tonight I decided to look into an odd behaviour of Aine's. She will get upset (mostly at night) and if I rub her leg or put our "special lotion" on her leg it seems to calm her. The only thing I could think of was the old growing pains - but it seems to only be in the one leg (the short leg).
So, during my research; I did discover that leg pain can be a symptom and there really isn't anything that can be done about it. "Special Lotion" we will be seeing more of you :)

But back to the title. During my research I found a perfect description of our life & had to utilize it because I can't say it any better myself.

Being immune-compromised and having congenital heart disease are what we call invisible disabilities. We hope and pray that good days soon start to out number the bad days and that every obstacle that comes along we are able to conquer. RSV, pneumonia, and pseudonomis are bad enough for a normal child but sometimes Aine has virtually no immune system from a "minor illness". Chicken pox, MRSA, measles, mumps even food poisoning could all be fatal.
(Thanks to Madison Faith's mom for writing this out)

While we love to be able to share our lives with everyone that wants to join in the good, bad, and yes the ugly :P) we also appreciate that Aine is delicate and are very blessed that you also understand she is delicate & want to protect her. We have been told that the first year is the roughest & if they can make it through the first year you have a fight chance. We're almost there. 3 months to go!!! And as the doctors are very well aware - there is no other option! She is strong, she is brave, she is loved, and she is cherished. Her brother is a great spokesperson for her & we are lucky to have them both & lucky to have the support of each and every one of you.

That being said -
If you ask to come visit and we decline, please don't take it personal for this is the most dangerous time of the year for Baby Aine.
If you ask if we need anything and we reply we don't know, we are not trying to blow you off - we really don't know what we need.
We are in the process of finding out if she will be able to celebrate her first birthday with friends & family, but will not know until after all her test results come back. We may just be sending out announcement cards - only time will tell.
We are in the process of finding out if the new food will work (she hasn't made a peep with this feed so far :) Please pray that it will work.
We are hoping that we will be able to start weening her off of oxygen, and start the oral training again - please send good vibes that it will happen soon.
And the biggest thing of all - we are praying, hoping, wishing, begging that we will stay Out of the hospital for a LONG LONG LONG time. I would be happy with next year :)

I hope this is finding everyone in good health, and that your days are filled with sunshine, happiness, and blessings. I think we can honestly say we do - we live with not one, but two miracles!