JollyRoger - Important updates
2old2play is a community. And as a community, we celebrate the successes of our members, but more often than not, we support and console our friends through the trying times. Life can be difficult for us all, but it is harder when a child faces a challenge.
Some of you are already aware that Jolly Roger and his family have faced many trials and have done so with a great attitude and much love. Their daughter Megan was diagnosed with mitochondrial disease, a rare and complex disease that can be quite challenging for parents because there are so few doctors in the country that are adept at treating patients. Jolly and his wife have had to become experts
in managing her care both at home and when she is afflicted by related illnesses. Sadly, their family is facing a new challenge. Below is a collection of posts from family Facebook pages, Twitter, and Megan's Carepage. After some discussion and permission from Jolly, some of us wanted to bring this to the attention of the full community. As you will see below, they don't really have the time to blog, so we are trying to do it for them.
There really is not much more to say, except that one of our own needs our support, and their children need our prayers. LtBlarg is driving down Saturday PM and plans to print this out and bring our comments to the family. Soup - Please copy this and post it in your blog. We want to get the word out to as many in the community as possible, and you get a lot more hits than I do.
LtBlarg wanted me to add that Ian's favorite superhero is Spiderman.
*Pink*
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Pieced together from multiple sources...
Good morning. Long day at the ER with Ian-Thomas. Toxic Synovitis is what he has. 
Apr 29th
7:26 AM
Here is a better explanation: http://www.nlm.nih.gov/medl
Apr 29th
...7:42 AM
My son is being admitted to the hospital for testing on what is causing his sever hip pain. MRIs, CT scans and more blood work for him...3:32 PM May 5th
May 6th
Ian has Guillain-Barré syndrome. can be treated but lots of scary days ahead. he will need 5 days of plasma and other meds. recovery will be very slow and basically he will need to learn how to walk again.much prayers still needed especially over the next 5 days.
May 11th
Ian-Thomas was accepted into the rehab program today. We have a nice big room with a beautiful view. He also got his walker today to help him walk. Tomorrow he will get his wheelchair. He has a very long way to go and full recovery is not expected but we will just see about that. 
May 11th
Ian will be here until he's made enough progress to go home. Could be a week or 2. They're confident he'll be OK to go to Disney but we'll need to get a wheelchair. There's a chance he may not fully recover. He has a prior condition, malrotation of the hips, explaining the waddle when he's running, going up/down stairs. I'm confident that he'll recover, our children have proven many people, especially doctors, wrong.
ICU BUT NOT WITH MEGAN
Posted May 11, 2009 10:43pm
So, a lot of you know but many of you don't so I am going to use Megan's carepage for a while for Ian-Thomas our middle child. Almost three weeks ago Ian-Thomas started complaining of his legs hurting. We didn't make much of it because it didn't seem to bother him too much. Over the next few days though, he seemed to experience some pain and he started walking a little funny. When I took him to the pediatrician he sent us to the ER at Scottish Rite to have tests run. They determined that he had Toxic Synovitis. They were wrong! The ER doc sent us home and told us that we had to wait it out and it would go away in a few days. A few days passed and Ian's pain got worse and his walking became much worse. He wasn't sleeping or eating and the pain med his doc had put him on was not working at all.
On Monday of last week Ian took a fall in the bathroom because his hip gave out on him. I took him back to the doctor who sent us to have some blood work done and to see a pediatric orthopedist. When we went to see the specialist he sent us to the hospital to be admitted. He said they had run every test and they couldn't find anything, now we are looking for things that are bad. I heard words like tumor, leukemia, cancer, fluid on the brain. When we got to the hospital again, they started doing lots of things to try and find out why our child was fine one day and basically crippled the next. He was also having double vision, and his eye would drift to one side. The pain was beyond awful. They even mentioned mitochondrial disease. That was the worst thing to hear.
The doc had the neurologist come in and look at him. She said that his body was attacking itself. He had a virus and when his body was fighting off the virus, it started fighting off his whole body. The bad thing was, they had to admit him to ICU because they had no idea how this was going to progress and what might happen. After many tests to rule out tumors and cancer, they decided on a course of treatment which would include 5 days of anti-bodies from blood plasma called IV-IG treatments.
He finally finished his last treatment last night. So what is going to happen now? Well, Ian was transferred out of ICU today to the rehab unit. This amazing little child that could once do everything, can now do nothing without some type of assistance. He now requires a walker in order to walk and a wheelchair. He is very weak all over his body. He relies on constant pain meds and has lost the ability to go to the potty. Most of the time they are able to make a full recovery but they do not expect that with Ian because of some issues he had before and the extreme damage that has been done through all of this. He will most likely need glasses as well.
They are going to work very hard with him in the rehab unit for as long as it takes to get him stronger and acclimated to how he is now. They have not ruled out that there is an underlying cause of Mito disease with him. Tomorrow he will need to have a swallow test done in order to determine if he is having swallowing issues. He chokes everytime he drinks liquids. If he cannot tolerate thick liquids, they will have to put a feeding tube in through his nose. That would just be so awful for him so we pray that does not happen. Would you please pray for him? He has really been through so much in the last few weeks. He has these awful tremors that look like Parkinsons.
He doesn't really understand what is going on but he still has a smile on his face. Right now we have decided not to test him for mito disease because of all the stuff he has had to endure lately. Thank you guys so much for praying for our family. I will update again when I know more. Thank you so much for praying for our sweet little man. He truly is one amazing little boy. Love and God Bless!
May 12th
Ian aspirates into his lungs and has reflux. We are trying to avoid a feeding tube so he is now on a soft diet. Not sure how well he is going to like it but we have no choice right now.
May 12th
I'm is feeling a little overwhelmed emotionally. going to be a while before Ian-Thomas can come home. We were sitting together watching American Idol and when the song came on "You are so beautiful" he looked up at me, put his hand on my cheek and said "I have to tell you something mommy. You are SO beautiful to me!" Man, what a special little child and boy did I need to hear that tonight.
Been a while. Son's been in the hospital with Guillain-Barré Syndrome. Check here: http://bit.ly/14ntZR
May 12th
8:45 AM
Ian had his first session of PT this morning and they said he did pretty good. 2:00 PM May 12th
May 14th
docs just came in to talk about Ian and they said walking wise, Ian is disabled. Any improvement that we see in his walking, which will be minimal, will take years to see. (sigh) I will meet with all 20 of his docs/specialists next Tuesday to determine an estimated discharge date which will be in about two weeks.
Just got word that Ian will be in rehab at the hospital for 2 more weeks, taking it right up to the day before we leave for Disney.
May 14th
11:15 AM
Could very well be over a year until he is fully recovered.11:16 AM May 14th
The doctors have told Stacy that this has crippled him. My son was fine 3 weeks ago and now can not walk. 11:30 AM May 14th
I guess it just hurts knowing that he is disabled, which now makes 2 kids that are struggling. My mental toughness can only handle so much. - 11:32 AM May 14th