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.

Dearest Cathy,


You have found the right place for support & information.  My sweet boy is 9 & was diagnosed at age 5.  If there is anything I can help you with, please feel free to ask.  I will do whatever I can to help you, support you & help you learn about this disease.  Hang in there & trust your instincts!  Feel free to email me anytime.  

~Lisa~
Your FAVORITE Jewelry Lady!

***FREE*** Jewelry for you!!!









On Fri, Jan 27, 2012 at 5:33 PM, Grace <


Hi Cathy,





Welcome to Spectrum.  I'm so glad that Suzie connected with you.  It's


wonderful to her that Alicia is doing well with Rituxan.  I've been using it


for almost five years now and have had really good luck with it.





Grace

It has been a year of pain & heartache for us.  Collin started the year out fighting for his life in the hospital with 6 of his organ systems in failure.  He finally became well enough to come home, but he wasn't himself.  He never went back to himself & has declined all year.  The last few months have been super hard, as he has gone down hill so much.  Docs don't know what else to do for him & say he will continue to get worse.  Just this past week, they decided it was time to bring Hospice in to care for him.  We have watched him suffer all year long & it is only getting worse.  So, he began the year fighting for his life & he ended the year fighting for his life.  I guess I should be thankful he is still fighting, but the pain of watching him is heartbreaking & too much to bear.    I miss his smiling face & his wonderful spirit.  We will get through this, somehow, someway.  I just want my baby healed & out of pain.  My heart wants him here with us, but I realize his healing may not come in the way I want it.  2012 is not looking so good so far.



I love you all.  Keep fighting the fight, that is all any of us can do!  (((HUGS)))

~Lisa~

Your FAVORITE Jewelry Lady!
***FREE*** Jewelry for you!!!









On Sun, Jan 1, 2012 at 8:33 AM,  <


hi All! my most excitement this past year of 2011 of that my son, develpemental challenge found a supervised living situation he is happy in. He is 28yrs old.  I was only in hospital one time this past year. I am counting my blessings everyday.

Sorry you will not be able to go, Michelle!  However, I am beyond excited you are seeing Dr Cree!  He is usually at the conference himself, I wonder if he is not going this year or if he is leaving after the doctor conference on Tuesday.



I will not be able to attend this year either & had planned to watch it online.   However, Collin has ended up with an appointment in Atlanta on that day, so I will miss watching it too!!  Hope they put it online very soon!!

~Lisa~
Your FAVORITE Jewelry Lady!

***FREE*** Jewelry for you!!!









On Wed, Nov 2, 2011 at 12:26 PM, Tracy Owens <


Well that is beyond good news Michelle!  It's excellent news!  My neuro consults with Dr. Cree so I know he is awesome.  I know you are sad that you won't get to meet us in person and I'm sad too that I won't get to meet you!  The other good news though is that the Conference is videotaped and will be online for those who couldn't attend OR watch live online.  I attended last year AND watched the video.  It was great because you can watch it over and over and catch things that you either missed when you attended (either live or online) or missed when you watched the video the first time.




We're going to miss you Michelle and of course we will all be posting like crazy about the things that we saw and that happened while we were there.





Tracy








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(((HUGS))) to you, Kendall!  I love you & I am praying!  I too hate this disease!

~Lisa~

Your FAVORITE Jewelry Lady!
***FREE*** Jewelry for you!!!









On Thu, Oct 20, 2011 at 9:21 PM,  <


Sending up prayers....





Cherie

Collin gets Hizentra, it is the subcutaneous version of IVIG.  We infuse him ourselves twice a  week at home.  He likes it better in his thighs, so we rotate legs.  It takes about 1.5 hours to infuse.  There are times we do it several days in a row if he needs it.  It is so much easier on him than going to the hospital to get it done all the time, plus it keeps his levels even & not bouncing up & down.  We are getting ready to start a 10 day course with him to see if it will help his fatigue any.  It is very expensive, but not as much as going into the hospital to have it done all the time.


~Lisa~
Your FAVORITE Jewelry Lady!

***FREE*** Jewelry for you!!!









On Thu, Oct 13, 2011 at 3:37 PM, Stan Leake <


Amy, On the advice of the Mayo Clinic, my wife Lydia also takes IVIG along


with Rituxin. She gets them monthly, three days in a row, whereas Rituxin


infusions end up being about twice a year. Like Lonela says, the purpose of


the IVIG is to prevent TM and ON attacks, not help with existing damage.


Best wishes,


Stan





(by Steve on behalf of Stan)

Grace. please keep me updated!  I am so worried about her!  She is such an amazing person, I have had a wonderful time the last years getting to know her & spending time with her in LA the last 2 years.  She is very dear to me also!