These are news articles that featured Jonathon

I hope this works....here are the articles that have been written about Jonathon. There is also a YouTube video that was made by Jonathons cousin Ryan a few years ago.


http://www.people.com/people/archive/article/0,,20062774,00.html

http://pqasb.pqarchiver.com/boston-sub/access/991182721.html?FMT=ABS&date=Feb+16%2C+2006

http://www.bostonherald.com/jobfind/news/healthcare/view.bg?articleid=1407339

http://massbiohq.org/2012/03/21/game-changers-lotus-tissue-repair/

http://www.massbio.org/news/279-new_therapy_helps_patients_soar_to_new_heights/news_detail

http://umassmemorial.org/support-groups-and-education/health-articles/epidermolysis-bullosa




http://www.youtube.com/watch?v=4UoJYqTlZIo&feature=youtube_gdata_player

Update on Jonathon

Well things have been very up and down these last few days!! I am doing anything and everything to keep him out of the hospital because he feels if he gets admitted he will not be able to attend camp! So, I told him we will pull out all the bells a whistles that we know of a do it! First it started with his toe the one I posted the other day, was put on Bactrim and it started looking good. Then on Sunday he showed me this spot on his right calf that started as a pimple then got little blisters, red, warm, inflamed. I had a good idea that it was MRSA just because the few other times he has gotten it this is exactly what it looked like! So put some infection medicine on it and got a cleanser to help. He did get a little sick Sunday night into Monday but the good thing is never got a fever! That spot now is a nice little hole in his leg but looking better. He is starting to get some pus filled blisters that I hope do not become anything!!! He is a tough cookie and does not back down to any challenge EB wants to through at him!!!!


First 2 pics are Sunday and the last one is tonight's.

Just a few rambles

I don't even know where to start but let me start by saying Jonathons infection has cleared up!!! Very happy no hospital trips were involved!! Guess I will just jump in: I have been up and down with my depression lately and I think its just a bit of everything into one! I feel like the walls are closing in on me! I am the sole caregiver, provider what ever else you want to call it of my house even though Jon and I have been together almost 14 years I do it all: medical appointments, school stuff, bills, getting Jonathons baths ready, bandage changes etc....we don't have family close by and the ones that are don't help at all! I also have fibromyalgia, rheumatoid arthritis, severe back pain and a few other things that they are not sure about! There are some days that the pain is so bad I can barely walk and am in so much pain, I will ask Jon if he can take care of Jonathon for the night by doing bandages and all that stuff but I get an attitude, and we end up having a argument and I find it useless so, I just do it! Don't misunderstand me I'm not bashing him at all and love him very much! He is a great dad and his kids love him but I'm just miserable! We have two children that are special needs, and Jonathon also has the complex medical issues. Him and I have not had a "date night" in oh man who knows how long! I also know he is still in I guess shock or denial about stuff with the kids but I feel that's not fair I have had to accept it and make a plan of action for the both of them! If I don't who will? Right nobody then nothing gets done and that can't happen!! Yes, I do see a counselor and am on anti-depressants but, some days they are just not good enough! Jonathon will be 13 in August and even though things have been going down lately I am very excited to be celebrating a milestone of him turning 13 considering I was told he would never make it to the age of 5. And as happy as I am I am also sad because things have been worse for him then better like we had hoped! I am trying to get him a wheel chair since he has not been able to wear shoes much due to so much blistering on his feet which mean one of two things I need to get accommodations for my car or get a used one! Preferably would like a bigger used one due to the fact we can not do anything together because my back seat is small and when the 3 kids sit back there Jonathon has to sit by the window if not he will blister by his knees hitting the seat along with his elbows so, Ariana sits in the middle and with her sensory processing issues you can imagine how that goes!!! But I guess the point is guess who has to think about all of this and deal with it? Me....I almost feel I'm single and just have a room mate...I just don't know if I have the strength to keep dealing with all of this....some days I just want to pack up and go! I would and could not ever do that but it's my feelings! I'm really sorry for venting but when you don't have many that understand writing becomes your therapy!!!

Frustrated!!

Well here we are again with "I'm sorry I don't know what is going on" Jonathon showed me a spot on his toe that looked liked a blister was forming so, we went to his dentist appointment. Got home about 2 hours later and BAM toe was really red, warm and swollen. The weird thing is there is no open wound or anything. So, I called his doctor and they saw him right away. The doctor does not know what is going on! The blood work is good and his x-ray was good! He just got his antibiotics last week for another issue and now he's on another one for 10 days! As of this morning the red has spread so, not sure what they are going to do? Just so frustrated at this point!!!