Thank you for all the wonderful birthday wishes and encouragement. It has been a good day, full of wonderful phone calls, and time with friends.
Hope is not improving yet. She continues to vomitt frequently, has not kept anything down that we can tell, and is having quite a few seizures. She has had brief eye open moments today, but nothing that you could call 'awake'. She hasn't had a wet diaper since the first one this morning.
We'll see what tommorrow brings.
skip to main |
skip to sidebar
Ashley and Hope were born with Adenylosuccinate Lyase Deficiency. This metabolic disorder left them with a damaged brain resulting in seizures and profound psychomotor delay. They were not expected to live past infancy. Although they were palliative care, we kept them at home to love and hold. Ashley died on March 18th,2011 (6yrs old) and Hope followed her home on August 14th, 2011 (4yrs old). We now continue our journey as a 'Family of Four'.
1 comment:
Praying for little Hope...
Sending our love, Madelaine and Phil
Post a Comment