Hello All,
We thank you all sincerely for your thoughts and prayers - it has been a long 30 days for the 3 of us, and your support has helped us get through some difficult times.
Today has been one of the rougher days we have faced. Hope's cranial ultrasound this morning indicted that she has areas of PVL - periventicular leukomalacia. These are basically areas of damaged brain tissue and will not be able to heal. The ultimate result of this for Hope is most likely Cerebral Palsy. The doctor claims that he does not feel that this will be severe enough to leave her in a vegetative state, as she continues to exhibit great activity. He also has indicated, however, that it is not likely one of the more mild cases of CP either.
Cerebral Palsy can affect people in two ways - by affecting motor skills and by affecting cognitive skills. While it is possible to have CP manifest in only one way, the doctor believes it likely that Hope will be affected in both areas. This will not be immediately evident in her behaviour - we will most likely not be able to determine the severity until she goes through the developmental process.
While this has been difficult news, we are still thankful for the fact that we still have Hope with us. Had we been given the choice of having Hope (even with significant challenges) or having a normal life without her, we would have picked having Hope without a thought. We have been so blessed to have been entrusted with the parenting of such a precious little girl, and we know all of you will join us in loving and supporting her through her challenges.
Again, thank you all for your continued prayers, thoughts, and support. Our lives are in a stage of profound transition, and knowing we have all of your support gives us great comfort in this time of need.
With Love,
Andrew, Sarah, & Hope
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Hey Sarah and Andrew,
ReplyDeleteIt was nice to have an update from Mommy and Daddy! I am so glad that you guys remain positive about Hope, and are not threatened by her possibly having difficulties in life. I have learned a great deal in the past few years about people with disabilities, and my whole heart is there for them. I work daily with disabled students, and like you said... you wouldnt trade them in for the world itself. You will grow to love her more each day, and no matter what difficulties she has, she will bring joy to everyone's life she touches, as you are already learning. We pray everyday for this tiny baby, and the life she is fighting for. God can perform miracles, dont forget that! God has allowed people to live when the doctors said they wouldnt. He has made people hear, see and walk, when everyone said they wouldnt. He is watching out for Hope, and he has plans for her! You hold that baby, touch her little fingers, kiss her, sing to her, and read to her! I am so excited for the months to come when she can voyage on up to Michigan and let us smother her with love too!
Penni
You were chosen to be very special parents to a very special girl. God does not promise that the road will be easy, that the tears won't be plentiful and that you will at times question everything around you, but He does promise to always, always, ALWAYS be there for you. You are not alone. Many of us love and embrace children with special needs and you will as well. God bless you guys - I am crying here with you, but my tears are not of sorrow for your precious girl but the heartache that I know accompanies this for YOU. Don't let anyone tell you what she will or won't do - she IS Hope and will bring much Hope to everyone. You have named her aptly, now press on with HOPE!
ReplyDeleteMy thoughts and prayers are with the three of you as they have been since you announced her impending arrival. God works in mysterious ways and its not for us to know the greater plan. I have been around many special needs children and they often do incredible things not to mention their special ability to touch the hearts of others as Hope has already done. I wish you the best on the journey that lies ahead of you.
ReplyDeleteJessica (Van Singel) Freedman
I went to post a comment that I spent a lot of time on, etc., and promptly LOST IT when I tried to preview!!! That just goes to show you how computer literate I am. :( Just know for now that we are holding you ALL up before the Throne of Grace in our daily prayers. That's the best we can offer right now. Will try to get this to go this time. Love, Uncle Tom and Aunt Sue Robinson, Pella, Iowa.
ReplyDeleteI am so sorry to hear the newest struggle for you both. As a classmate of Emily's, I have been reading from time to time to see how you all were doing. My thoughts and prayers will be with you all during this time. God Bless...
ReplyDeleteEileen Collins
Dear Robinsons of all generations, Please know that all the Zinneckers have been praying for you daily and now we just have another reason to pray harder! It has been such a struggle for all of you this past month and will continue to be in the days ahead. We all HOPE that Hope will remain strong and continue to grow into the lovely person she is meant to be. (And thanks, Auntie Em for the wonderful daily posts!) Our love to all of you,
ReplyDeleteCarol Z.
I have no words, but I have lots of love that I am sending your way.
ReplyDeleteJesse Mae
Hello Robinsons! You are in my thoughts and prayers every single day. I am so sorry to hear about Hope's latest challenge, and believe we are strongest when we face the biggest challenges. I pray that God is with you through this time, and Hope continues to grow into a beautiful little girl...and I can't wait to meet her some day!
ReplyDeleteCaitlin Z.
We will continue to pray that HOPE will grow strong and courageous. That she will be able to blossom with the abilities that she is given. We are so thankful that she is progressing and gaining weight. Thanks for the progress reports.
ReplyDeletePat
I found some perfect words from God for you in Zechariah 9:12 -
ReplyDelete"You prisoners who have hope (that would be Andy & Sarah!),
Today I am telling you that I will give you back TWICE as much as before!"
Hang on to that. God never lies!
Bernadine J.
I have been checking almost everyday and words
ReplyDeletejust don't say what I want to say but I do send you my love and thank you for putting the blog
up for Hope.
cousin Marilyn
I have a very good childhood friend with cerebral palsy. Growing up, she was knows as the girl with the poles.....she needed them to help her walk! Her parents were decorated her poles with different colored electrical tape....they became a fashion statement for her. Well, three surgeries later and 28 years after her birth, she is a Harvard Graduate, a popular and well known music critic and can walk without the assistance of her poles. She is an amazing person that brings happiness into the lives of people she knows!
ReplyDelete