Hello all and thank you for your patience. I returned home on May 2 and am now starting to address the queries that were received in my absence. Please be patient a bit longer as I have quite a back log. Queries will be addressed in the order in which they were received in increments of 20 per day. Most of you have requested scholarly literature addressing very specific issues and it takes some time to get them together. In the event that you need help with other issues (insurance, contact info for specialists, etc) please email or leave a message on my machine.

Thanks again for your patience.

Grace

Fellow NMO Patients:

Many of you have sent queries to my email. Currently there are 136 messages. Please understand that I am currently in Hinesville Georgia spending time with my daughter and son-in-law, who have just had their first child (my first grandchild). I will be returning home on May 2, and will be resuming my advocacy work at that time. Queries (both email and telephone) will be answered at that time in the order in which they are received. Thank you for your consideration.

Grace

Written By Lisa McDaniel March 29, 2012

Super Hero Collin has taken flight...

About 1:15 am this morning, our Super Hero took his flight to Heaven. It was a very long journey to get to this point, but it is here now. While I know we are all sad he is no longer here where we can hold him, we must rejoice in this fact: Collin has been healed. He is no longer in pain, he can walk, run & play with no wheelchair, no walker, no weakness. He can see everything, smile & play. He can finally be a little boy again instead of a patient.

Celebration services are as follows:

Visitation Saturday 5-8 pm at Miller Funeral Home in Oxford, AL

Collin's Celebration of life is Sunday 3pm in the chapel of Miller Funeral Home in Oxford, AL

Any who would like to attend are welcome! We are asking for those who will to wear character shirts for the service &/or visitation. It doesn't matter what part you play in the service, we would love to have you help us make it about Collin. He would get a kick out of watching us all show up in character shirts. Some of his favorites are: any Mario character, scooby doo, Phineas & Ferb, Toy Story, Cars movie, Jimmie Johnson. etc.

Please pray for our family, our extended family & friends as we learn to cope with life without Collin.

Lisa has given me permission to post. Please pray for the McDaniel family. Right now they need our prayers more than ever. Little Collin has fought a long battle against this disease and his little body is tired and worn. Please pray along with the family that a good and great God grants him peace and rest.

Grace

Have just spoken with Michelle. Things are slowly improving and there is a possibility that she will be released from the hospital this afternoon. Please keep her in your thoughts and prayers.

Grace

Our own Erin O'Brien Miller just phoned to let me know that her water just broke and she is on her way to the hospital. This is so exciting! I can't wait to see photos of Baby Boy Miller. She'll be phoning me later this evening to give me an update.

Grace

Michelle is back in the hospital as she has continued to have difficulty with her eyes. She is doing more IV SoluMedrol and is hoping that this will take care of it. If not, they will once more consider Plasmapheresis. Please keep her in your thoughts and prayers.

Grace

Just wanted to let you all know that Michelle has been released from the hospital after completing her course of Plasmapheresis. During her hospitalisation, she required multiple blood transfusions due to her fibrinogen running low. She's now resting quietly at home. We're all hoping that her vision will improve over the coming weeks. Please keep her in your thoughts and prayers.

Gracie

Every time that I have my Rituxan infusion, within a short time I have a bad

Psoriasis flare.  This makes perfect sense to me as NMO is B Cell mediated

and Rituxan depletes B Cells, while Psoriasis is T Cell mediated.

Right now, my scalp is really bad and the topical treatments aren't working.

Over the last year, I've lost over half of the thickness of my hair, and my

scalp is extremely itchy (I even scratch it in my sleep).  The injectable

medications are out of the question since I'm already on Rituxan.
Is anyone else dealing with Psoriasis and if so, what medications are you

using?
Grace 
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From Caring Bridge.

Written by Lisa McDaniel

The last 3 weeks have been a tremendous battle for Collin. There have been several times when we thought it was the end of the battle for him, but he is still here with us. It has been heartbreaking to watch him struggle for breath at times. He has times where he has very long pauses between breaths, times where his heart rate has been in the 30s or up over 100, times where his blood pressure has been extremely high. Through it all, Collin is still fighting to be with us. His body is very tired & worn. His body is slowly shutting down. He mostly sleeps now & we just try to keep him comfortable with meds. He is our Super Hero. The hospice nurses are here everyday. We have wonderful nurses & they already feel like part of our family. The whole staff at New Beacon has been very kind & caring. We appreciate them all so much and for their care of Collin & our family.

We will be getting more bracelets soon with a new Super Hero logo on them, so look for those very soon!

Our friends have graciously put together a Fundraiser/Sing/Supper for our family. It will be Saturday, Feb. 25 at Choccolocco Community Church. Spaghetti Supper will start at 5, singing at 6. Groups singing are: Clearvision, Crystal River & Hope's Journey. For more information, call Metha Dover 256-605-1033 or for information including donation information:

https://www.facebook.com/events/342490542440904/

Thank you so much for checking in on us. Please continue to keep us in your prayers as we continue to walk this path. Pray for peace for Collin and for his pain & suffering to end.