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!

Update

Well things have been up and down with Jonathon.  Just when we think were headed in a positive direction we take two steps back again.  This is the worst infection I have seen him have and I thought the other ones were bad!! When I picked him up from camp on Friday he was very tired, which I expected him to be five days of fun and not sleeping well, would do a number on him. So when Saturday rolled around I figured take it slow and not do to much we will be OK.  Well we went to go look at some rentals and had a visit with my Dad, which Jonathon loves to go to because there is a pool and he can go swimming.  He never ever passes down swimming no matter how cold the water is!! Well he put his feet in and said its too cold and changed, I should of known right there that he wasn't feeling well, he just looked drained. His big beautiful blue eyes were a cloudy gray but he said he was just tired.  So, we got home I re-wrapped some areas that could possibly be something with some bactroban and off he went to bed. Well let me tell you when he woke up on Sunday he was burning and would not even get off my floor.  So his dad and I decided that it was time to take him to the ER. The drive to the hospital is about 35-40 minutes away and by time we got here he was not doing good at all he could barely walk into the ER.  They took him right in to a room we didn't even go to triage.  Went through the whole history what is EB, does this look normal and what do you think is wrong?  Finally got an IV in him and took some blood, cultured the blister, and started the medication.  At that point it was up in the air if he would stay or not it was up to me unless the blood work showed other things that were concerning.  Well about two hours after everything they came in to recheck his vitals and his fever had gone up and his white blood cell count was 16.5, with all that it was not my choice and the ER pedi decided he needed to be admitted.  So, here we are a day and half and things are about 50% better. He has had 4 IVs put in because the medication is burning his veins and now they are running out of spots to put it so, lets hope this one is the last one!! His fever keeps returning so they are giving him Motrin and Tylenol to make sure it stays down, he is getting constant head aches when the fever returns and then he wont eat much but, his belly is upset with all the medication and the IV antibiotic.  He is still not himself!! Hopefully tonight goes better and things will really start turning in the up direction.  I miss the girls so, much and hate that I can go home get stuff and then leave right away but, I dont like leaving him here alone that long because even though he knows what they can do and not do they dont always listen to him. So, we will see what tonight and tomorrow brings but, hoping for a release for tomorrow!! Thanks to everyone who has visited and called him and sent me messages, it is really appreciated!!  Goodnight

What NO OT?

Yup that's right Ariana has not had OT for about a month!! Due to wonderful insurance issues they say she no longer needs to have OT. Um Hello people at the insurance company do you see her everyday? No you don't you only see her on paper and let me tell you that is completely different. I see her everyday and have to be the one to live through this so please how can you tell me she doesn't need it anymore? I understand she has made tremendous strides with the help of the therapist but we are not done! She has just started understanding what is going on with her self and how to handle it and so have I, we are not done I know that there is so much that can be learned and taught to her!! So, please don't make me fight another insurance battle and trust me when I say she still needs OT!!