We are still blessed with smiles and coo's each day. Hope is doing well, despite the seizure activity that continues. I guess my idea of 'doing well' has changed a bit. My perception is that things seem a little more stable right now because we've gotten used to the seizure activity and Hope's decreased movement on the left side.
Now we're focusing on more chronic issues, like positioning. Hope has a strong preference to keep her head and eyes to the right. It doesn't matter how many times I reposition her head, she shifts it right back. I'm trying to avoid the flattening of her head on that preferred spot, like Ashley has. Ashley has a strong preference to turn her head to the left, which eventually left her with a flat spot on the back of her head, making it difficult to position her head in any other way.
It's kind of fun, because I'll turn her head to the left, and she'll smile and turn it right back the way she likes it. Little munchkin!
3 comments:
Dear parents of Two Angels
Congratulations for your marvellous family!
The two angels particularly are really two angles!
We wish share some experiences that we had with our Angel too.
Her name was Milena, she was born in 1996 Arpil 08th and died at 2002 April 03rd.
She was diagnosed as Adenyl Succinate Lyase disease.
Her behave was more similar to your Ashley -Angel.
Feeding her since the beginning was difficult, because of that we had to make a surgical on her stomach in order to feed her through a so called bottom, very practical to feed, no more nose tubes.
So, her first two years were almost 50% at hospital and the rest at home care support.
After that we moved to a more dry environment town and she became much better with lungs, no more pneumonia and we finally turn a real family all together. We travelled a lot, of course when Milena was good, by car, by plane, on beach, on mountains, with her dog, threes, forest everywhere.
We investigate this disease in the first beginning with a Brazilian Doctor Erasmo Casella and he made contacts with the first discoverer of this disease, in Italy, it was a boy, second in Netherlands and the third was my angel.
Unfortunately until our daughter times there is no treatment.
She uses to have about 20 seizures/day in the first three years, eyes contact became few, along the time, but sometime the smiles appeared at a glance. It was a great prize when this happened.
So, again, sorry for our words, but we felt necessary share with you our experience, you are doing the best you can do for the girls,
God Bless you.
If you need some more information we'll be pleased to share all we know. We loved your sun " Brodie" but the two Angels also will make an special place at our hearts and prays.
By the way, we are from Sao Carlos, Sao Paulo-Brazil,
Sincerely,
Homero Busnello and Renata Lima,
Parents of Milena, our Angel.
(We used to call her as Angelo - Italian version of Angel).
PS: We can send some pictures of Milena if you desire, just let us know your email.
Mine: hrmbusnello@uol.com.br
At this, I am crying. To find someone else that has walked this road...it means so much.
Jolene - I was really touched by what this lady wrote. It's so neat to realize that half a world away, someone is praying for all of you. It made me cry too when I read it.
Bless you, you're such a wonderful mom to your kids.
Love A. Madelaine
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