Days went by and Friday- found out that Brisan had another staff infection, due to his G-TUBE, as it has always given him some sort of challenge. On top of that he was wheezing and was treated for pneumonia at the same time. His heart rate was up and he was in a lot of pain. we again, were preparing ourselves for the homecoming of this child to Jesus. it just makes sense to us every time one of the kids is in. it seems to be a time of great distress and pain, along with a longing for, this time, Brisan to meet his maker, His precious Jesus. it was a time to get ready for a life to begin. We began to pray for God’s will, as hard as it was, we did not want this child to suffer any longer. on Saturday morning there was a small prayer( small in the fact that it was short, sweet, to the point- prayer is always huge in my eyes.) I talked to my daughter that afternoon, and as of noon, when the drs came in, Brisan’s heart rate was back to normal, his pneumonia was gone, pain was under control, and the staff infection was under control enough they were released to go home to finish healing.I agree with Cathy. These boys are also teaching me about trusting my Caretaker.
It is still amazing to me, I don’t understand it. God has this child and Brisan has held on now for over 2 yrs and shows us all how to totally depend on Jesus. He is such a testimony to me, and I have learned how to come to Jesus as a child. ( it says we need to come to Jesus as a child,- I am learning that. children don’t doubt there caretaker, most of the time, and I know without a doubt that Brisan trusts Jesus and talks with HIM)
Please consider adding these young children to your prayer list.
9/11/10: It is rare when I do not cry when I pray for the grandchildren of my friend Cathy. I asked Cathy to share a bit of background about these dear children and prayer needs for them and their parents. Following is their story in brief as told by a Grandma who loves them so very much.
Brisan and Parker were diagnosed in August/September 2008 with a rare genetic neurodegenerative disease called “Niemann Pick Type C Disease (NPC)” or also known as the”Childhood Alzheimer’s”. The outcome is Fatal. This disease is a lysomial disease. It has to do with the storage of cholesterol and how it passes through and is used in the body. It attacks the liver, spleen, and brain. Children that are affected by this disease don’t usually see Jr high school and most commonly don’t grow to be more than 10 -12 yrs old.
Two years have gone by and they are still fighting for their lives. Some of the symptoms of this disease is an enlarged liver and/or spleen, which both of the boys have. They were born this way and that was one of the signs that something was wrong.
Parker is 4.5 yrs old and his challenges are: he has never spoken, has multiple seizers, he has very low muscle tone and can not walk without help. Last yr he had a feeding tube put in as this is the way he gets all his meds and is now feeding every 4 hrs round the clock to help him maintain his weight. He has forgotten how to chew his food. His gross and small motor skills are affected.
Brisan just turned 6 yrs old and he has had a lot of medical challenges. He currently faces having his spleen out in the next month as to help save his life. He is wheelchair bound most of the time. He also has a very large spleen, liver and does not talk. He has massive seizures. He has no large or small gross motor skills and is autistic. He also has a feeding tube and he is fed every 3 hours with 2 hrs off round the clock.
They both get platelet infusions to help with the blood issues they face. They both don’t clot when cut and have to be very careful. The boys immune system is altered and very low so they have to be very careful who and what they do. Hospice has come in as of May of 2010 to help with the boys and is wonderful with them.
I am asking prayer for them that Jesus would intervene and work in their lives.
- Brisan will be having more surgery in the weeks and months to come and my prayer for him would be that the Doctors would have wisdom, would have clarity on how to approach surgery and recovery. I ask prayer for Brisan himself that he can stay calm and not be anxious and panic and fearful, that the parents continue to lean into Jesus for affirmation that they are doing the best they can for these kids and that they keep a clear mind about them as they journey with their children.
- I am also asking that you keep Parker in your prayers, as this is hard for him to be away from Brisan, as both of them have anxiety separation and have been together almost 24 hrs a day except when one is in the hospital. They are only 16 months apart and are used to being together.
- Their parents feel like they are just surviving so I am asking peace for them as they come along side Jesus.
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