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!!! ❤❤