Really Rough Days...

I am so sorry for the lack of updates...thank goodness I have a phone with internet now to check my mail, because my time on the regular computer has been ZERO the past few weeks. First the good news! Samantha had the MRI and it was completely normal! Big sigh of relief for me and Sam. Not sure about when/if we will do the CT scan to check for possible neuroblastoma since she is still having the eye flickering...her doctor wants to wait and see if it goes away over the next month or so-he truly feels it could be from stress, which brings me to my next bit of news...

Connor has been extremely difficult lately (as in for the last 6 months he has worsened considerably) He is not the same as he was even a few months ago...he has always had attention issues, but never really any HUGE behavioral issues-until now. I always described him as my "sweet boy" and now we are looking for that little guy again...it seems as though he might possibly have ADHD, although he is young for a concrete diagnosis right now. Most of the children with OMS have severe behavioural problems, we just always thought we escaped that part of it-oh sure-he would be irritable at times, but it was "our" normal...sure he tore the house apart, but that was normal toddler behavior too...he isn't out-growing any of it, and it is so hard to see him like this-screaming constantly all day, lashing out at his brother, sisters, and cousins, and even the dog. Running away any chance he gets, not having any concept of danger, bouncing off the walls every minute he is awake and not sleeping well either on top of it...Then comes steroid week-and it goes from bad to almost unbearable. And he is bigger, stronger, and quicker than ever before-which has seriously put him in immense danger many times now since he is able to get to things he couldn't before (knives, scissors, pills, etc) All of our childproofing has been revamped-locks everywhere, our house is a virtual fortress to keep him in and hopefully safe-hard to do in a house with this many people, even a pencil left on the counter is a potential problem if he grabs it and runs and hurts himself on it.

Samantha is keeping her door locked and staying in her room most of the day (locked so Connor can't come in and scream, hit, and destroy) It makes me so sad that she does this-she is only 6 and can't understand why her baby brother is acting this way. She even said the other day she sometimes won't come out if she needs to potty or is hungry because she doesn't want Connor to yell at her. He can go from fine to hysterical in about 2 seconds...totally unpredictable what will set him off.

In April I saw my doctor for help in dealing with it...thinking it was just ME that needed the help, since I was so stressed from it. Thanks to a great and caring doctor, I got back on my way to normal and hoped things would settle down. They have only gotten worse-he was taking a medicine to help combat the roid rage and in April he began taking it everyday while we looked for better options for him, and only recently discovered that the side effects from that medicine were not going to work for him-so we had to wean him from it. That is when things REALLY went into complete and utter chaos...nothing in his system to help with the steroids, and all we have been seeing is Connor lacking any control over his actions, emotions, and ability to function. He is supposed to start school on August 6th and now we are very concerned how he will do there...

Anyway-what I was trying to say, is that some of this eye-twitching Samantha is having could be from stress. She is a smart girl and very sensitive, this is tough on the whole family. Ryan and Stacy are at least older and can better understand some of it, and thankfully have been in Washington State the last month when he was weaned from the med that was helping a little bit...not that they don't feel it too, but they are busy with school and hang out at their grandma's and cousins houses-so that all helps. Stacy is pretty lucky-Connor doesn't direct that much anger at her, he idolizes her, lol...

I am off to bed now-Connor just woke up again...thank you for all the prayers for Samantha, please keep us in your prayers while we figure out how to help Connor.

Love,
Debbie