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!!! ❤❤
