Evelyn is home with hospice care.
The hospice nurse comes every other day and makes sure we are doing OK, that we have medical supplies and anything else we might need.
The parietal encephalocele is a rare defect. The experts recommended against surgery. They can not fix it and may worsen things. The genetics doctor does not think this is inherited but a spontaneous happening. The best guesses of the pediatric neurosurgeon, neonatologist and pediatric geneticist that she will likely live between 3 and 6 weeks, maybe longer.
Her only special care is the bandage changes on her head. She is very quiet so we are concerned to make sure she is comfortable, but she does get irritated at time, so we are reassured that we will know when she is hurting.
She wakes up to eat, but mostly sleeps all the time and very rarely cries.
The boys enjoy loving her and helping.
She is cute, soft and cuddily.
She is well loved~!
1 comment:
There is NO DOUBT that Evelyn is well loved...pictures speak a thousand words!
We thank God for the messages of faith, hope, and love that Evelyn, and all of you through this unfortunate situation teaches us. There is a reason indeed for her time here on earth. Two years ago Nick Caldarelli from our parish was killed by a drunk driver at the age of 19...his mom Cheryl recently posted the following, so I thought I would share it with you:
In some ways, our faith is like a muscle. The more you exercise it, the bigger it gets. Whenever we struggle with something, whether it be with our finances, relationships, classes, career path, or health, we can use the situation as an opportunity to exercise the faith that God has given us to bring both God's peace and power. "God has dealt to each one a measure of faith" -- Romans 12:3
Important to the process is the act of surrender -- a decision to turn our lives over to the loving and ultimately capable hands of God. Each time we do this, our faith muscle grows and we become more peaceful people who have more mental space for others because we aren't so focused on our own issues all the time.
However, if we take our struggles and only rely on ourselves or others to cope with them, our faith muscle stays idle. If we develop a habit pattern of only trusting our own devices, our faith will eventually become weak and no longer capable of helping us overcome situations in our lives.
It's important to mention that faith is not based on circumstances! It's easy to have faith that you'll be able to pay an unexpected bill when you have a huge refund check coming. Genuine faith, however, comes in spite of circumstances, when we truly believe God's many promises to care for His children. "Now faith is the substance of things hoped for, the evidence of things not seen." -- Hebrews 11:1
Thank you again for sharing so much of this journey, and our prayers continue for the days to come. Much love, Sylvia xoxoxo
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