Beginning of the End

It is twenty three days until we reach the one year anniversary of Ailish's passing.  I have not ever recapped the full story of the events as they transpired or what lead up to them.  Folks have heard bits and pieces but never as it was in its entirety.  The pictures that I will include were ones that I took with my Blackberry so they are not the best in quality but I can't tell you how grateful I am that I took them.

As is the case with many children with spastic quadriplegia Ailish developed scoliosis or curving of her spine.  In the beginning the curvature was small and did not bother her nor was it necessary to make any equipment modifications to accommodate.  Then the progression of the curve accelerated.  Ailish's chair had to be modified, positioning became more difficult and it was becoming more and more difficult to keep her comfortable.  I began the two year process of assessments, examinations, X-rays etc necessary to determine whether the surgery would be safe for her and whether there were any unknown underlying issues that could come up and surprise us at time of surgery.  Ailish as I expected passed all tests with flying colours.  There was a mild cardiac condition discovered but it would have no impact on suitability for the spinal correction.  Ailish had been healthy all her life with almost none of the expected accompanying conditions of her hydranencephaly.  She had never had any hospital stays short of when her g tube was placed when she was two.  With each physician we saw I would say to them that I was worried the surgery would kill her.  I knew she was having more issues with pain and with the rate at which her curvature was increasing I was told we could get into a position where her health would not be optimal for such a huge procedure.  I agreed.  With never having had a pneumonia or any chest infections for that matter her lungs were as good as they would ever be.  The pulmonologist said "there is no benefit in waiting".  As I look back now I wish we I had waited until a time where by if surgery ended as it did that I would know that her pain was over instead of doing it while in almost perfect health and happiness.  To be continued....