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wendywald's Friends' blogs
To our NMO Family...
May 8, 2012 by Collinsmommy
Comments (0)
We just wanted to take a minute to thank you all for everything you did for our family during Collin's illness over the past several years. all the information, help, & friendships we have made with you all will never be forgotten. We appreciate all the thoughts & prayers for our family during our time of loss. the last 5 weeks have been very painful for us as we are trying to adapt to life without our sweet Super Hero. Thank you to everyone of you for everything you did.
We hope to stay a part of the NMO community. though Collin's battle is over, we will still be here fighting for our NMO family. This fight is near & dear to our hearts. No one should go through what Collin went through & our new goal in life is to work to make this stop! We love you all!
We also greatly appreciate the Guthy-Jackson Foundation's willingness to honor our Super Hero by starting the "Collin McDaniel Hope Grant" for the purpose of Pediatric NMO research. It is an honor to our family to know our Collin will never be forgotten. Thank you so much to Victoria, Bill, Ali & all the others who have worked so hard.
Much Love,
Carey, Lisa, Angellyn & Mishelle McDaniel
Re: Response to your queries.
May 4, 2012 by Grace
Comments (1)
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 re: Queries.
April 23, 2012 by Grace
Comments (0)
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
Re: [Devics-spectrum] Medication Fears
April 9, 2012 by Collinsmommy
Comments (3)
Take the drugs...the alternative could be death. If they work, take them!!! We risked it all for Collin, but in the end, none of the meds topped his flares. Trust me, you don't want the alternative!!
~Lisa~
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On Mon, Apr 9, 2012 at 6:53 PM, Lea Long <
You're not crazy! It's a logical conclusion. I felt the same way - that these drugswe need to take have to take it's toll on our bodies and can't possibly be "good".I question it and ask my neuro at least once a year! Bottom line is he reminds methat the alternative is to risk further permanent damage. I'm already blind in one eyeand have lost strength and coordination in my legs. I'm only 50 w/3 active boys,and have alot of living left to do and realize that I need to do what I can to preservemy eyesight and mobility. He always reminds me that it isn't matter of "if" I will haveanother attack - it's "when". I've had numerous major attacks since 1998 - althoughI recover somewhat - it's never 100% and I lose more every time.Unfortunately you can't wait until you have another attack - it's too late at that point.You're lucky you haven't had any life-altering attacks yet. I lost my eyesight becauseI was mis-diagnosed and taking Avonex for MS. I always wonder "what if" I had beenon a NMO therapy sooner . . . but unfortunately NMO patients are riddled with "what if".Please don't stop without having a real sit down w/your neuro. You're lucky you werediagnosed before you had any serious damage - that is not the case for most of us!
-----Original Message----
From: lnsward < To: devics-spectrum < Sent: Mon, Apr 9, 2012 6:36 pm
Subject: [Devics-spectrum] Medication Fears
Hello everyone....I have been diagnosed with NMO sinse August 2011 and my Neuro
started me on Cell Cept. Recently I decided to stop taking the medication
because something about having a weakened immune system scares the heck out of
me. I am curious to what everyone's thoughts are...I haven't had any 'life
altering' attacks yet, and I feel like I would rather deal with NMO than the
possibility of cancer or numerous other things.....Am I naive or crazy??Collin (Lisa's Caring Bridge Announcement)
March 30, 2012 by Grace Comments (0)
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.
Our Little Collin.
March 25, 2012 by Grace Comments (0)
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
Michelle's 2-17-2012 Update.
February 17, 2012 by Grace Comments (2)
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 Erin Is Having Her Baby! :-)
February 12, 2012 by Grace Comments (0)
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's Latest Update.
February 11, 2012 by Grace Comments (0)
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
Update on Collin...
February 10, 2012 by Collinsmommy Comments (2)
Copied & pasted from his caringbridge:
Our Super Hero will not be with us much longer. Our hearts hurt with more pain than you can imagine, however, we know it is time to let him go. He deserves to be free from pain, to be able to be whole, to run & play again. As much as it hurts us, we know he needs to be free.
There have been changes the last week, especially the last couple of days. There is apparently damage to his brain stem now. His breathing goes from shallow, to very hard deep breaths, to very long pauses in between. His heart rate has sat around 30 at times, but the last couple of days has been around 150. His blood pressure was way up a couple of days to a high of 180/140 down to a low of 70/30, then back up high again. His temp has been high, then low, he has hallucinations, thinks he is falling, thinks he is trapped & many other things. This afternoon, he started having seizures. It was a very scary time & we really thought we would loose him this afternoon. Meds were started to help with that & hopefully he will not have anymore. All these things point to brain stem damage. Yesterday, he woke up vomiting & vomited most of the day. Everyone thinks it is his body's way of telling us he could not tolerate the fluids anymore, so they had to be stopped.
As you can imagine, this past week has been extremely draining on us all, but especially Collin. Our Super Hero is getting his cape ready to fly. I will also share with you about how Collin woke up last night for a few minutes saying he would be running & playing with Jesus soon. He wanted us to promise him we would be there with him soon. Even in his pain and last days, his concern is about us. He is an amazing boy & he knows where he is going.
We will do our best to update as we can. We are able to update on facebook more often, as it is quicker & easier to get to. You can find his facebook page here:
https:// www.facebook.com/ groups/ 230999296975614/ Please keep sending us your Super Hero Collin stories, memories & stories of how he has inspired your life. We have loved reading them all! Thank you to all who have taken the time to do this!
If you go to collinsquest.org you can see Collin's life in pictures, going back over the last few years.
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.
A Rare Approach to a Rare Disease
