Just some important information I would like to share

Good Morning everyone! I am pleased to say our 2013-2014 school year has offically started in our house! Jonathon and Ariana started yesterday and Ellie will start after Labor Day.  Poor Ariana had to start yesterday five days after her wisdom teeth were taken out. I was pleased that she made it through the day but when she came home she was miserable.  She got up and went again today after not sleeping much last night. Jonathon came home did some things and was passed out by 7:30pm.  Looking forward to see how today goes.  

      I just want to share a little information that I am not to keen about sharing on Jonathon's Facebook page.  Due to it being open. I have gotten a few messages to why am I selling bracelets to raise money when I should be donating the money to the babies born with EB? Why do you need help when you have three kids that you shouldn't of had then? How do I know Jonathon is real and that the money actually goes to him?   That is just a few but you all get the jist of what they are like! The first thing I would like to say is right now there is no cure for EB so, young, old, new the need is just as great. EB has caused a financial strain on our family! I love Jonathon and would never trade him for anything and to me he is perfect in every way but, he does have complex medical issues and things that need to be bought in order to keep him healthy in everyway.  Many appointments that he goes to, hospital stays that he has to do because of serious infections.  Jonathon is not the only one in our family that has medical issues, I have Rheumatoid Arthritis and there are some days I can not even get out of bed and have now started using a cane to help with my hip. I am only 32 years old.  I didn't prepare myself for all of this 2 years ago I was working a full time job as a family advocate for a family homeless shelter. In 2008 I was pregnant, going to school, doing my internship, working and taking care of my family. 2010 My health started to decline the same year Ariana was going through so, much lets just put it this way the school was restraining her, making her feel alone, punishing her thinking she was acting out when they refused to listen to me that she had a sensory processing disorder, auditory issues and Autism. Thats when my health started taking a turn for the worse. I would be fighting with the school while working, would have to get up in the middle of meetings at work and run to her school because she was being restrained. It was the most stressful time seeing your daugter crying out for your while being held down and you trying to tell them to let her go, and they are saying bad things about her in front of her. After all of this my health started getting worse and I went from full time to part time to a few hours a day. Luckily my boss was very understanding and I am forever grateful for her listening to me cry in her office because I was so stressed. In 2012 I was laid off. I went on unemployment and if any of you have been on unemployment you know its not much, it helps but its not a job. The last three years I have spent so, much time at doctors for both Jonathon and Ariana. Many OT appointments for her, evaluations, doctors, and anything else.  All while my health was going down hill. I was not taking care of myself My kids came first and that put me in a downward spiral!  Fast forward to today August 28, 2013 I am no longer on unemployment! There are days where I need to decide if I want to pay for food or my medication. I am on 9 diffrent meds.  Its usually food for the kids. I do get FS but it is not that much. The only income we have is Jonathon and Ariana's SSI and that goes to every bill that we have. So, there is not any extra money for gas for appointments, the extra things the kids need school supplies, clothes, therapeutic things for Ariana and Jonathon.  Jonathon is 2000% real and does have EB we are not sure on the exact form because our insurance wont cover the cost for that test.  Is he as severe as some NO he is not but he is Jonathon and in himself has EB issues. There is no one fits all when it comes to EB and how it affects each person.  The money stays in my Paypal account and that card is only used for him. If someone sends a donation I deposit into my bank and then into paypal.  I often tell people if you are not sure you would like to send money, I have made a wishlist for Jonathon on Amazon. To find it you go to Amazon.com and search wishlists and type in Jonathon Connolly. You can also send gas cards, walmart gift cards, cards for dinner or food, or any other type of gift card.  This is not ment to make you feel bad, but, I wanted to explain a few things to why I sell the bracelts. The bracelets are made by me and the beads are given to me by family, friends, some wonderful followers on my shop page that send in gift cards to craft stores to help with my cause. I am sorry this is long but, I wanted to explain a few things. We are truley great ful for all the people that have bought a bracelte, purchased items from his wishlist. Or just given us a donation to help. Right now we are getting insurance bills and fighting with them for covering supplies. I would also like him to go to Cinninnati to their EB clinic but as of now insurance WILL NOT cover it :( but I can only fight one battle at a time. Thanks to all and much Love Whitney 

Follow Jonathon at: www.facebook.com/jonathonaebwarrior

LOOOONNNNNGGGGG over due update!!

Hello everyone, I am very sorry for not updating since January but things have been so crazy with the kids, me in school, and just normal day to day stuff.  I will try to remember everything that has been going on!

The first thing I want to start out with is I am so proud of Jonathon!!! He is now officially a high schooler and got into a Tech School that seems to be wonderful and willing to work with us in any way they possibly can.  I am so, excited and nervous at the same time.  I am just so, glad we have this moment to treasure because we thought we would never make it this far and we did HE did and I am proud to have him as my son. On a sour note he was in the hospital last month with an infection for a day. He has 4 of them right now and we will be going to the doctors today to get them looked at praying and keeping my fingers crossed that there is no hospital stay!!!! We have been having a fundraiser for Jonathon I am making bracelets to help support him.  You get to pick your color(s), charm(s) they are $5 a piece with $2-5 for shipping depending on where you live. All the proceeds go to Jonathon for supplies that our insurance doesn't cover and gas for appointments and food for him while we are at those appointments. His appointments are over an 1hr away from home so there is a lot of traveling and now that school is out we will be doing a lot of them. You can pay with Paypal or mail a check or you can even check out my online store at www.etsy.com/shop/mygems3 or you can just email me at whitneyconnolly44@gmail.com that is also the Paypal email. Ariana is now going to be 13 and in 8th grade! She has started making her own clothes and they are awesome!!! I can not wait for her birthday this weekend because I got her a sewing machine and I cant wait to see her bloom with that and the clothes. She is starting to build so, much confidence in herself its awesome. She is having a few school problems but I am hoping instead of summer school I am going to try a home summer school! I want to get her caught up.  Ellie will be entering kindergarden this year and I can not believe that oh my a high schooler and a kindergardener all in the same year my babies are all grown up! They grow up so fast just make sure you treasure every moment with them because you never know when it will be to late. Always hug and say I love you every chance you get my older ones hate it (that don't touch me mom age) but I don't care I want them to know they are loved unconditionally!!! I have been doing ok have some school this summer. Which stinks because the kids have so, much work to do and then with my homework its going to busy! We will get through we always do!! My Rheumatoid arthritis and back have been really bad, I had another MRI on my back and it shows some slipped discs. I have been on the Humaria for about 4 months now and I am starting to feel a little difference but I am not sure! I will continue more later but for now I have to get ready to take JJ to the doctors. ❤

Here we go!!

I know it's been awhile since the last post/update but a lot of things have been going on. We have had Christmas, a trip, some doctors appointments and just some good ole family things.

Our Christmas was AWESOME thanks to some very special people and the Butterfly Fund! If you don't know who they are or what there mission is I urge you to go check them out. They are a wonderful organization that helps families. The children had a wonderful morning it could not have gone any better.

Shortly after Christmas December 28th to be exact Jonathon and I went on a ski retreat in Utah. It is for people with EB and it was the most amazing thing ever!! I met some wonderful people, families, and just had a ball. It was Jonathons first time skiing and flying so, he really didn't know what to expect but once we got on the way he was loving it. After he finally warmed up to everyone he was having a great time. Some people will never understand what it is like to see your child smile while playing because they don't have to worry about why they are different and they know that if something happens everyone understands. He was so happy and it was so nice to see him like that not worrying about anything but having fun. For me it was a priceless moment to be able to ski with Jonathon something I thought I would never be able to do. It was such a nice moment!

The kids are doing well. Jonathon skin has been normal not bad but not better. He was also just diagnosed with Aspergers, SPD, ADHD, anxiety and depression so, we are working on some stuff and he has been doing well. He has his moments but who doesn't I'm 31 and have moments. He is doing well in school. We have been checking out high schools he will not be going to our city's high school if that ends up being our only option I will be homeschooling!! Ariana is doing ok we have been having some major meltdowns again just when we thought we were under control with them. I may have to get her back into OT, to help her out with mood regulation. She just had another neuro-psyc test done. I'm curious to see what that comes out with. Ellie is good learning to write. I have been finding little "Ellie" words all over the house especially on my white boards. But, I gotta say I love it!! She is doing so well in school and loves it. I can not believe that in the same year I will sending one to high school and one to kindergarten!

I have just finally gotten everything figured out with me (or at least I hope) I have rheumatoid arthritis with the fibromyalgia secondary. I have taken it pretty hard and been depressed the last few days. I am just worried about quality of life because the medication options are not good for long term use and for me only being 31 I would love to be here to see my children have children and be able to enjoy being a grandparent. I know your thinking don't worry about that but I it's my nature to worry about the long term. And of course my family is not in any way a support system to count on. There answer to everything is just lose weight you will be cured! Well first thing is with RA weight loss is not a cure. I have a autoimmune disease. I know my family and I will get through it and I will figure it all out but the thing is not having the support! Jon is wonderful and I am so glad to have him in my life. He is such a big help and takes care of things when I can't. He even has some health stuff going on nothing serious but puts that aside to help me out with everything.

I have attached some pictures of things and am happy to say we finally put together a bandage changing area for Jonathon so he know has his own spot and it helps my back so, it's a win win!! Jonathon also got a wheel chair that we have been trying to get for a while. It will be for times that he really needs it. We are still trying to get to Cincinnati for Jonathon so, we can get some more answers. I start classes back up the 23rd. My 32nd birthday is the 26th. So next week is busy! I have a wish list on amazon for things that are needed for Jonathon these are things for his daily bandage changes. We are very strapped financially right now for my unemployment is done. So, I have been having to make choices for either meds for me, stuff for him, food or bills. We have fallen very behind on bills, and I have been having a hard time just to do what I need to so, if you are able to help us purchase some of his wish list items it is greatly appreciated. If you would also like to send a gift card to Walmart or target that will help us also. You can email me at whitneyconnolly44@gmail.com and I would be happy to share our address. To the ones that have helped out so far words can not express how much we appreciate your generosity. If you would like to see the wish list please go to Amazon.com and search Jonathon Connolly in the wish list or you can go to his face book page www.facebook.com/jonathonaebwarrior and the wish list is there. Thank you for all of your continued love and support. From our family thank you from the bottom of our hearts for everything!!! ❤❤

Just a little update 🎅

As I sit here and write, erase, rewrite, and you get the point....I have so much to say but just really not sure how to put it all in to making sense!!! So for now I will just update:

Jonathon: Is doing ok....he is having a lot of foot pain and to the point were he isn't even going outside (which is not like him at all) hopefully it is nothing serious. He goes for his physical this week so, we will talk to her for now is all I can do is keep his pain under control and try to keep him happy!! It has been making him a little depressed which I hate to see him down!! School has been going good for him. We have been working closely with the behaviorist and a few other people. So, things have been going well with all of that.

Ariana: school for her is going good. Her sensory issues have been up and down lately we have been having a lot more melt downs but it also a crazy time of the year. As much as I try to keep everyday a routine and try really hard to not have a unwanted change but somedays are not that easy. I have found some really good things to help us but, not everyday can be perfect.

Ellie: she is finally getting better her asthma was way out of control. We have had to add another treatment for her everyday. She is loving school and taking the bus! I can not believe she will be 5 next year and in kindergarten!!

Now me: I don't even know were to begin on that!! I am going through a lot of medical tests to figure out what is really going on...I am so frustrated that they can not figure out what is going on I'm just tired of tests and doctors appointments! I will be getting a second opinion since no one else can figure it out.

I am happy to share that Jonathon and I will be going to Utah for the ski retreat we leave December 28th and come home the 1st! We are both so excited, I can't wait to meet and talk with other EB moms and for Jonathon to get to meet others with EB! This is going to be so exciting 😄

Our Thanksgiving,

The "Thanks" in Thanksgiving

As we come up to that time of year again telling everyone what we are thankful for... for me everyday is about thanks!
I have gone a different way this year!! Over the last few years my life has changed so much, I have lost people that I cared about and gained new ones (old and new) that gave me a new meaning!! I am a true believer that people come in and out of your life for a reason the reason we may not ever know but they touch our hearts one way or another!! That brings me to August 7th 1999 a beautiful healthy baby boy was born 7lbs 7oz & 21 inches long! He was to be named Jonathon Michael (first name after dad and middle name after my dad!). His Dad and I were young new parents really no clue what life would have in store for us! Jonathon had the biggest set of blue eyes and when he looked at you they went right through you! As I sat in awe at this beautiful boy all I could think of was the great football player he would become or the next hockey star!! I couldn't wait for him to do all the things boys loved to do! Jonathon was close in age with his cousin and my visions of them wrestling on the lawn and riding bikes all over town you know all the great things boys will do!! All of this quickly changed when I heard those awful words "Epidermolysis Bullosa" what the eff was that???? What do you mean don't have anymore kids (I was already pregnant with my second)??? What do you mean he will not live until 5??? (You can see the birthday post about those feelings) What the hell did all this mean? Ok so we will just cure it they have cures for everything right simple? Hello why are you not answering me? Miss Connolly I'm sorry but there is NO CURE! Wh what do you mean? The only thing you can do is wrap him in bandages and keep him comfortable. After doing some research on EB and trying to put things into perspective and figuring out what all this meant for him...for us... I still had no idea what was in store for him! By this time I had already had a beautiful baby girl Ariana Marie 6lbs 14oz & 20 inches...who was EB free!! In 2006 a wonderful woman submitted a story about her hero who just happened to be Jonathon and the story was going to be in People Magazine!!! The interviewer came out and started asking us all sorts of questions about how we felt about EB!! It wasn't until this time that it had hit me all those emotions that I felt when he was born was never going to happen..he was never going to play football..he was never going to play hockey...he was never going to be a cop...or a firefighter..that's all Jonathon ever wanted to do was be a fireman he wanted to save people and make a difference in people's life! Do you know what it's like to know your child who you have so many hopes and dreams for and who had dreams of his own would not be able to do those things!!! It is one of the hardest pills to swallow in life as a mother!! After this interview we had so many more..Inside edition, our local news, other news stations from other countries and the news papers!!! By the end of it all our heads were spinning!!! But Jonathon had become a pro at talking about EB and what life was like for him and every time I would hear him talk about it I got all teary eyed! Life for him wasn't about EB it was about life and who was in it!! Now don't get me wrong we have always taught Jonathon that he is just like anyone else and can do ANYTHING he puts his mind too but in reality there are just somethings I know he will not be able to do. This year Jonathon got a incredible opportunity to speak at the State House in Boston about his EB. We said yes and started writing his speech! On Feb 29, 2012 I sat in the audience and listened to him read his speech to the crowd...as he read I was brought back to the day he was born when I had all these hopes and dreams and I realized that Jonathon had done all that I ever wanted and more!!! He had grown up to be a special kid who wants to get his story out and teach others about EB!! Dreams never go away they just change as we grow. This year Jonathon was also diagnosed with Aspergers along with his sister Ariana and as the challenges keep coming he does nothing but keep smiling!! So, as we all sit with our families and give thanks for having each other...I am thankful to have someone who has taught me that as life really is to short we should not be afraid to go for it!! Jonathon has taught me more over the last 13 years then anyone or anything!! Life through his eyes has no limits or boundaries!!! Take that minute to stop and look around and you may realize that what you have been missing all along is right in front of you!!! ❤

Long over due update

WOW!!!! Has it been a long time since our last update! So, much has been happening and things have been so busy but I figure better late then never!

Jonathon: So, much is going on with him.  Right before he went to camp this summer he had some neur-psyc testing done and needless to say did not come out how we expected.  He has been diagnosed with Aspergers which was a total shock though it explains so much of the behaviors and actions.  He also is mildly MR which I had a good feeling because his cognitive function has not gone up since his last testing 3 years ago.  So, we have been working with so many people and honestly it becomes very over whelming at times.  Then on top of all that we have the EB and that has been up and down.  Pain seems to be the biggest thing for him at this time (on top of the usual stuff).  Today when I was looking him over all his areas have blisters.  I am pretty sure its because of the stress at school with all they bullying and now he is going to a whole new class because of everything that is going on.  This class is a life skills class that teaches the things you need to be independent.  I am trying to get him a appointment at Cincinnati.  I think its time for him to have a scope but, I want it done by someone with experience.  There are of course other things I want them to see him for so, we shall see what happens with that.  I will be starting a fund raiser "Pennies for Jonathon" to help us get there and back.  Also I think its time for him to have a wheel chair for the days he can not wear his sneakers.  Now he is wearing them but he will limp and need to sit frequently so, I think this may help him and not put so, much pain that he doesn't need. Other than that he is doing well.

Ariana: She has been OK.  She also is Autistic with NOS and SPD.  Her "fits" have been happening a lot more lately and we are back to the same talk that she was saying before.  Things were going so well and under control but I think with her hormones raging at the nice age of 12 that is not helping.  Some of the things I am learning for Jonathon I have been putting in place for her.  Other than all this  she is good.

Ellie: Finally just had her allergy testing done. Guess what??? She has no allergies.  HAHA for some reason I really don't believe that.  During the test she was screaming and moving so, much.  I may have to have it redone. One thing that is concerning is she is gaining weight and more than what it should be so, she will be having her thyroid checked to see if anything is going on. We have been controlling her intake of calories and stuff .  She is very active but still gaining the weight so, hopefully we can get some answers!!  She started preschool this year and loves it.

Me: Just had surgery on Friday for my carpal tunnel and ulnar nerve.  My fibromyalgia is in a bad flare because of all that has been going on!!  My arthritis is also not helping stuff but, what can you do!  I started school in September for medical coding. I am doing it online since I can not commit to a set time with the kids. I probably get more calls from them because of something going on, than I talk to family!! Trying to get things in place for thanksgiving and stressing out for Christmas.  Since I have been laid off I have fallen behind on everything and spend every bit of my unemployment trying to catch up so, have no idea what Christmas is going to be like this year.  The kids go through so, much and take things so well for all that they have to go through it makes me sad to know the one thing they look forward to besides a birthday may be crap this year!! Ugh can not think about it just makes me cry.  Thank you for reading and following us. Jonathon has a facebook page the name is www.facebook.com/jonathonaebwarrior so, please go follow him and get his updates. 

Jonathon's birthday

I have wanted to post this earlier but, with everything going on was not able to: My post from Face book on Jonathon Birthday August 7 2012.

13 years ago today my life was about to change for ever. I was about to have my first child. Nothing could have prepared me for what my family was about to go through. Everything about you was perfect your beautiful blue eyes, long fingers you were the perfect size 7lbs 7oz. We brought you home and adjusted to finally having you home. Then at five days old who would of thought that this blister on...your heal was about to change our family and lives forever!!!! At first nobody had any idea what the hell was going on we were frustrated, angry, mad, why us were all the questions we asked!! I felt alone how were we going to get through this what the hell did Epidermolysis Bullosa mean??? The doctor only told me never to have more kids and prepare that he would not make it to the age of 5. His Dad and I left that appointment looked at each other and said who the hell is he to put a age to our child? I was so lost had no idea what all this meant. went to the library and started researching EB and there was not that much found a few websites with info that kept me optimistic!!!! We had decided never to see that doctor again!! Fast forward to today and you have done nothing but teach me about life and to take each day slow and appreciate the little things. You have bloomed into a incredible young man with awesome hopes and dreams that I can not wait to see you accomplish. Happy birthday Jonathon I love you so much and am so proud of you you have become and how much you have taught all of us!! You have done so much and I could never or would never change a thing you are just as perfect today as you were 13 years ago ♥

 

I have to say a special Thank you to IcingSmiles for making his day truly awesome!! I have never seen him smile so much and, for Chickdee Hill Cakes in NH for making it possible with there awesome birthday cake.  We thank you from the bottom of our hearts for making a milestone so, special for Jonathon you guys ROCK!!!!!