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!!!

What is this world coming too...

Jon and I have always tried to teach our kids to respect others, treat others the way you want to be treated and be a good friend!! But, over the last two days that way of teaching has been very hard to stick with. I found out yesterday when I went to pick Jonathon up from school that the reason why his knee had blistered and been acting up was because some boy in his class was kicking him everyday for the past few days. Well, he didn't want to say anything because all the other kids would have called him a snitch so, he just kept dealing with it. Finally the teacher could sense an issue and spoke with Jonathon privately and he came clean about it. Let me tell you honestly my first reaction was why didn't you hit him back but, I couldn't say that he was only doing what we have taught him. Of course my phone call was not returned by the principle so, tonight I had to write a very lovely letter!!! Then today my daughter goes to the library with a friend and the friend totally flipped on her because she wouldn't call someone a slut!!! As some of you know Ariana has sensory issues and become very upset when this girl started yelling at her, she the proceeded to put her hand over her mouth and hit her off side the head!!! Then took off and left Ariana to walk home alone and crying...what the heck is going on?!?! After I got to calm Ariana down we talked and I said I was going to call her mother but Ariana told me it wouldn't matter because her mom doesn't care. See that's the issue here why are these parents not being parents??? You have children it is your responsibility to teach them right!! I know some kids have issues but honestly so do mine but we teach them that it's not an excuse!!! Everyday they are tested and I just hope my parenting skills will be the winner in the end!!

Well.........

I have been meaning to update for a while but, this darn fibromyelgia has not let me sit at the computer and I have yet to figure out how to update from my iPhone!! So I guess I will start with:

Me: as some of you know I have been laid off from my job and have been trying to find something along the line of what I was doing before but I have also been contemplating if I should go back to school or not? As, of today I still have not made up my mind!! It would need to be online classes and I can not find what I want to do online so, who knows what I will end up doing!!  My fibromyelgia and Rheumatoid arthritis has been out of control lately but I don't think the stress I have been going through lately has helped any of it!! But, my motto on hour at a time yeah its been that kind of months!! Any who that's really been it for me...

Jonathon: His skin has been outta control...I have never seen things this bad so many little infections, new places getting blisters, places not healing, its been crazy...He had his six month check up at the EB clinic last Friday and that went OK...They did a lot of blood work to see how things were but I haven't heard anything so I am assuming they are stumped about also..I'm thinking hormones because he is at that age he will be 13 this August.  He is going to be going to camp again and cant wait till then. I was hoping we could attend the PCC but don't think that will be happening now that I have been laid off. I wanted him to meet others and I would love to meet everyone that I have meet online through out the years but, maybe next one.  School for him is going OK still having problems with some of the kids but he is really trying hard to keep his grades up and is doing good working at it!!  One thing we are thinking it may be time to do is get him a wheel chair...He has had to miss some important trips at school because of not being able to walk that far and he was really upset that he could not attend so, we are discussing our options. If we do I will be having a fund raiser to help with the cost.  School is out in about 3 weeks and deciding if I want to home school them the summer program or send them to it!!!

Ariana: I am so proud of her she has come so far with all of her sensory stuff and learning to take the breaks when she needs too.  Home has gotten better she has been trying really hard to speak up when she needs a break here as well...we still have some work to do but I think we will get there.  She has taken all of the things she learned in OT and using them at home and school.  It also helps this year she has a great group of teachers and let me tell you that makes all the difference in the world.



Ellie: Cant believe she is going to be 4 in two weeks my baby is no longer a baby!!! She just started preschool last week, the first couple of days were rough but she loves it!!! It is so good for her to keep her busy while the older two are at school for the day...Her health has been up and down her asthma with this allergy season is out of control but I finally think we have it under control.

My Little Politicaian

Hello everyone!!!

Just a little update on what has been going on!

Jonathon's appointment went ok the other day. He has some bad scarring in some of his fingers so, that has caused the other fingers to become weak. The doctor gave him some had exercises to do.  He has been doing them and they are feeling ok he says.  His biggest complaint is the pain!

As most of you know yesterday was National Rare Disease Day!! Jonathon was invited to the State House in Boston to speak about how EB has affected him and what he hopes days like this will do for Rare Diseases. He did such a great job I am so proud of him!! He looked so natural and like it is something he does all the time.  The Boston Herald did a awesome article about the event.

Long over due update

Well finally I have gotten the time to sit down at the real computer (not just my phone) and give a update...

Jonathon: He has been invited to speak at the State House on Wednesday Feb 29th for National Rare Disease day which is so awesome.  We finally just finished  his speech which took us all weekend to write...but I like the final draft and that is what we are going to stick with! He is nervous but excited at the same time, we have another interview set up right after and couldn't be more excited!! He loves to share his story and get the word out there, and we will never pass up an interview about EB!!! Skin wise well that has been up and down like usual. He just had a lot of mouth work done which did a number on his gums but hopefully that will be it for awhile.  The good news out of it is he won't need to have the spacers put in cause his teeth are actually growing in straight!!!! Yay finally something good out of all of this I tell ya it often feels like one bad thing after another!!! He has an appointment with the hand specialist tomorrow because he is losing the mobility in his hands and Dr. Wiss doesn't know if its an EB thing or not.  I don't even really know because his sub-type is unknown some days he shows like its DDEB and others like RDEB so we will most likely be asking for some more testing to be done to try to figure it all out!!  On a brighter note he made honor roll this term and we are so proud of him! He worked so hard to get it and deserves it! He has a very hard time with school and some of the kids and it is often distracting to him but he pushes through and does a good job.

Ariana: She is doing so much better with school and really has had no issues this year.  She still has her moments at home and still does a lot with the sensory diet here and at school but now that she is getting older she is learning to regulate things a lot better.  I am happy to say that the trauma from last year in school has not had any affect on her this year which, is great!!

Ellie: Well she is just Ellie my happy go lucky girl who just goes with the flow.  Her ears have been good no infections since the tubes but has gotten whooping cough again.  Shes is doing much better and we are down to one treatment a day and that is just at night before bed. 

The rest of us are good just one day at a time!!! My fibro has been up and down and the RA is a killer but what can I do?? Would like to see a great doctor but after all the kids appointments and stuff I have no energy to worry about me. I know I shouldn't be like that but the pain just wipes me out and I have no energy.

I will update about Jonathon's appointment tomorrow!