She is so beautiful and haapy birthday Waverly!
what a cute little birthday tribute! she is so precious!
Happy Birthday Waverly!Shannon, may I be so bold to ask you a question? I did try to find the information, but wasn't successful.With MPS, does the progression of the disease effect the child's cognitive abilities, or just their physical capabilities? Or, is it both?I suppose I'm wondering if, on top of everything else, the child is aware of the regression? Are they being trapped inside their own bodies, or is there grace in that they really aren't aware? Your children looked loved.Nancy
Thanks for your question, Nancy. Sanfilippo effects both their cognitive and physical abilities. It first shows itself in their cognitive development. They stop moving forward and begin to lose skills. Then they also begin to lose physical abilities - walking, swallowing, sitting, etc.I pray that Waverly is unaware of all that is going on. She is around 12 month developmentally. But there are times when she looks at me with such intensity, that I wonder....She definitely shows frustration at times and we think it is because she used to be able to say/do something, but now she is unable.
Thank you for your answer. I will pray that your children are unaware of what is going on, too. I would find some solace in believing that is so.Ugh. Words just fail me right now. I'm staring at Waverly's newborn picture.You have beautiful children.Nancy
Wavy is so beautiful. I'm so glad she has you and matt as parents to love and appreciate her. Hope you all had a wonderful weekend. Happy Birthday wavy :)Siobhan
What a beautiful little girl! So sweet and so happy!
I still remember Waverly's 4th birthday here in London. That is how I still picture her today :) Love, jenn
hello, i'm one of michele's cousins...i'm so grateful that she has shared you with my family...as a special ed. teacher myself, i want to praise you and your husband for being so loving and supportive to your children..it is obvious they are loved:)
ps...i love waverly's 4th birthday picture...she looks quite stylish;)
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