What a Winter!

After exactly a year of being home without sickness, except for her emergency plugging episodes last Summer (mostly mechanical and dry weather), Gemma came down with a series of illnesses causing chest congestion and partial lung collapses. 

To our lack of knowledge we always ended up being one step behind... just as we would get advice on helping her with one thing we could have been doing another... from starting night physio to nebulizers.  Up until this 'cold' we didn't even know what a nebulizer was.  The first hospital admission lasted three weeks, then shortly after Gemma was discharged she was admitted again for another three weeks, and then again for a few days, spanning from December until April.  What a Winter!

To us it was a complete shock, we had heard of other similar children with respiratory complications needing hospital admission over the dreaded 'Winter' months but Gemma never needed this... until December.  It would only last a few days.. maybe a week at most right?  nope!  Weeks! they would say,  maybe months!  Are you kidding we thought??  no way!  Yup..  weeks...  on and off those weeks turned into months. 

One respirologist said to us that her lungs would 'continue to get worse'....  now?... years from now?  we don't know.

One doc said 'Maybe in the Spring/Summer her lungs will 'clear up' and she will do well again'..   we started to wonder when that would happen, we just wanted our little girl back to 'normal', then one day Gemma just 'cleared up'... secretions slowed down.. sats came up.  Yay, finally!!  Thank you God.

I never would have imagined, even though I preached it to everyone that 'a simple cold can turn into something very serious for 'these' children'... make sure to wash well..  Have you 'Mirco-sanned' yet?

Sometimes people say things like 'you need to get her out more'... people don't really understand the balance that you need to always find between quality of life and protection of life.  Of course we want our daughter to 'enjoy life', it is all a balance, finding things she would like to do and what will be safe for her.  Now that she is getting older we can find more things that she can experience.

I really hope that Gemma will continue to do well and we can be a lot more prepared for next Winter.

Gemma's hospital bed

Gemma getting sick on her Birthday

 

Gemma figuring out how to take off her AFO's