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!!!!!

A little of this...A little of that

Well Hello everyone, I know I promised I would update on what was going on with Jonathon while we were in the hospital but, I never got the chance too!! Here is a update.

Well finally the infection cleared up it did end up being MRSA so, they had to switch his antibiotic to Bactrim.  Then we had school start so, I had to get everyone ready for the first day which almost did not happen for a certain someone.  Jonathon insisted that he wanted a motor scooter for his birthday so, I told him if he saved the money he could get one.  Well he just had his birthday and ended up getting enough to get it on his own.  I was very nervous but I let him get it.  Well Monday evening last week I get a phone call with him screaming "I fell I fell" his dad can hear it on the phone and before I can say anything runs down the street. I told Jonathon his Dad was on the way and I waited outside.  I could hear him screaming from up the street so, I new this was not going to be good then he gets in view and oh my word his hands were no longer together. He came up stairs and he was shaking so bad and screaming and crying.  I immediately sat him on the couch got him a cold cloth and his wonderful awesome sister bless her heart got him a cold drink.  I looked over his body to make sure that there wasn't something else that I could not see cause he was covered in blood. The only other injury was a little bit of skin was off his knee.  I knew that I need to get him some pain medication cause Motrin was not going to help this so, I called his PCP and she told me just go to the ER.  Which we did not want to do but if it was going to help him then we needed to.  His dad helped him into the car and off we went.  Let me tell you this place was so busy and they kept telling me we needed to wait, I'm sorry but this was not your average cold so, we were not going to sit and wait!!!  Within a few minutes we were in there and he had some medication and finally started to calm down.  They soaked his hands and put the skin back over the area and just wrapped it for him.  He was miserable I hated seeing him like that and it was the first time I have broke down crying in front of him.  It is the worst I have ever seen him.  He was a trooper though came home and the next day went to his first day of school.  Even though it ended being half a day for him cause we needed to have a follow up at the PCP he still did it!!

First day of school went off great besides the above.  Ariana was so nervous about starting cause she did not know what to expect but, she did great.  She came home and said I don't know what I was so nervous for.  Ellie will start on September 26 and I start this Wednesday the 5th.  Yes you read that right I am starting school.  After being laid off from Emmaus I realized that I need a different career choice so, I am doing hybrid classes here at NECCO for my associates in Health care with my minor in Medical coding.  I will only go to class one day a week and the rest of the work will be done online which is exactly what I need.  Everything else is going OK!!

 

His hands after he fell

His hands after the hospital fixed them

His knee

Jonathon with his cat Princess she never leaves his side when something is going on!

              The first day of school. I got half a smile but, for how much pain he was in its ok!

His hand on 9/2/12

His hand 9/2/12

Deja vu

Well here we are in the same place as we were a year ago in the hospital!! He got home Friday from camp looked good made sure he did a good shower with hibiclens, washed everything in hot water, made him a good meal and sent him to bed early! Woke up Saturday about 11am which I thought wow good sleep.. he was complaining that he was cold but his face was bright red so checked his temp 99.7 for him that's low grade so gave him some Motrin and made him some food and gave him a drink. Things were going good until about 3:30pm. He was hot again and the fever had not budged and when I looked at his thumb it was brown. His dad and I decided that I better take him in because he can get worse so quick and figured get it cultured while there was still fluid in it and just get a quick first dose of IV's. Said by to the girls and off we went! Got to the ER had the worst triage nurse ever!!! Pretty much accused me of waiting a week to bring my son who had burns because he never heard of EB!!! I'll get into that later!!!! Got him in a room waited 2 hours for the doctor who didn't know a thing so I told him what we needed to do and gave my lesson on EB. Well by now Jonathon was not feeling too good. The nurse came in and cultured and the fluid was a yucky brownish green it was so gross and smelly, I have never seen it that color! After sticking him 3 times finally got a IV started and did some labs. I asked the nurse to check his temp cause he wasn't looking so good..103.7..WOW what the F*** I thought that is not good. They gave him 600mg of Motrin. Two hours later he was still very hot starting to shake so, I called the nurse and she re checked it only down to 103...gave him 1000mg of Tylenol and we just prayed it would start going down. Thank god my sister was with me cause honestly I don't show much emotion and don't like to in front of Jonathon cause I don't want to scare him but, I was scared. You feel so helpless as a parent and to sit and see your child in pain, body shaking, and him moaning cause he feels like shit and to know there is NOTHING you can do! The only thing I could do was keep a cold compress on his head. He was so hot I could of fried an egg on his forehead! But, having my sister there felt like I wasn't alone and needed to stay strong for him! About a hour after they started his antibiotic and told me they were going to admit him. Got up to our room oddly the same one as last year. Finally got him to bed about 12:30am. Didn't sleep so well he kept waking up feeling like he was going to be sick and between the nurse checking his vitals what seemed like every hour. We are now just waiting for the doctor who had a emergency. fever this morning is 100.9 only had to do Motrin but they are starting to worry about his kidneys because he is on IV fluids and drinking Gatorade but output is half of what they expected so, just trying to stay positive and pray that it's just the antibiotic messing things up!!! Hopefully we will know soon what's going on! Good note he was able to walk around gotta keep the blood flowing :)