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

I LOVE the pic above! Just thought I'd share a pic of two of my guys for ya'll...It is rare to get Connor sitting still for a pic, so this was a rare photo op.

Lots of news in our house, and lack of news as well...still no idea what was going on with Samantha-her urine and blood came back normal thank goodness-but we have been playing heck trying to get her scan scheduled! It seems it is easier to just go to an ER than wait for the doctors to set it up...we had it all set for here in Columbus when I got a call saying that we would need to go to Atlanta to do it and that they would call me with the appointment date-STILL nothing, even though I have called to check on things. Aagg! Good news is she is doing much better-I'll keep you all posted on what happens.

As for the news we do have, Connor FINALLY got approved for the Katie Beckett Waiver This Is HUGE for us, not only financially since it will take a lot of the burden of Connor's medical bills off our shoulders, but what it means for Connor himself is the really great part! Here are some of the ways it will help him as a secondary insurance:

*Speech therapy will be covered (we have battled our insurance company for 1 1/2 years to cover ST and they did approve 20 visits this summer...guess what? We just got a bill for those visits, they seem to have changed their minds...so here it adds up (Evaluation $ 165.00, Co-pays for bi-weekly visits $40.00 a week, session fees for bi-weekly visits $160.00 a week) See how quickly it all adds up?

*Will pay all co-pays on Connor's Medications

*He now qualifies to get services from Pediatria This is the nursing business that would have enabled us to get Connor's infusions done locally, instead of traveling to Atlanta for treatment...our insurance doesn't pay for this service and we were turned down. They also provide respite services and day care for medically fragile children.

Can you tell we are excited?

So, we have some decisions to make about the next year...how this effects school for Connor and if he will go to private preschool or Pediatria on his days he isn't at the special needs STEPS program. Right now I have some research to do, and that will help me figure out the best place for him.

I talked with Connor's doc a long time last Friday...Sam took Connor to the playroom at the clinic so I could discuss things.

We made some decisions-about ongoing treatment plans, and I got the name of a child psychiatrist we need to see to follow some of the meds Connor is taking, didn't end up helping since that doctor won't take our insurance (Agg again, lol!) On to more researching, right?

Looks like Connor will be doing the steroids for probably another two years...I sorta expected it-but I just can't quite stomach the thought yet, you know? I asked if he should have a bone density scan soon since steroids can result in bone loss-but Dr. George was honest and said we didn't really need to because no matter the outcome of a test like that-the benefits of taking the steroids outweigh the risk to his bones...

He talked very seriously about his immune-suppression putting him at risk, since he can't afford to catch any little bug-we will probably bump up his IVIG to every 3 weeks instead of 4 to help keep him healthy, especially with school starting soon and him being exposed to more germs than he ever has before. It will probably help with his walking too-since that last week before he gets IVIG he falls a lot and crawls on the floor quite a bit.

Then the hard stuff came-the future...he said he is very happy with his progress he is making right now but that we need to prepare ourselves that come age 5 or 6, he might just stop/slow down progressing. Most of the stuff we learn is happening RIGHT NOW, the critical age for development and once you hit those ages it is harder to keep advancing. He said he hopes he is wrong...I hope he is wrong too-but I don't think Connor is going to get out of this unscathed...he is sooo far behind developmentally...even the words he can say-nobody can understand-I am the official translator these days.

Just keep praying-he IS doing so much better and every day is learning new things and words. Right now we just finished steroid week and it was pretty rough on him and on Samantha, poor girl needs a break badly from her little brother after the steroids...Tomorrow Sam is off and we are going to see the new movie "Ice Age" while Sam keeps Connor-so that will be good for her (and Mommy)

Ryan and Stacy are in Washington right now and we miss them terribly! But I know they are having a good time and enjoying themselves before it is on to high school. WOW, I still can't believe they are going to be in high school, lol.

Please keep many of our little friends in your prayers...Patrick Chance, Ryan Morgan and his mom Missy, Will Lacey, Chloe Shiver, Liam Witt just to name a few...and please keep Nathan's mom Susan in mind as well, as it has been almost two years since he became an angel.

Deb