I have been given strict orders to 'Get some sleep' tonight, but since it is a relatively quiet night around the Craig household tonight (which believe me doesn't happen often), I decided to sneak on the computer and try to update.
I still don't have my computer back. However, we are pretty sure that we have an official diagnosis. It seems as though the issue is my battery and charger. Fortunately this is pretty simple to fix, unfortunately it is not cheap to fix, so it looks as if my computer will be out of commission for awhile longer. Since I am light years behind on absolutely everything, I have no choice but to do my best and try to get caught up using Charlie's computer whenever the opportunity presents itself. However, since Charlie's computer is located in our bedroom, and is not mobile, the opportunity to use his computer does not present itself very often. So, while I will be doing my best to get caught up on everything. There is a very high likely hood that it will be very slow going, so pretty please be patient with me.
As for other things.... Despite our rainy gloomy weather that last couple of days, I did promise that this update would be more pleasant than my last few, and I aim to keep that promise.
I have good news! We finally have supplies! Granted we were still unable to get everything, as the DME we are with now does not have a pharmaceutical license and can not supply needles, etc. but we did get 98% of our supplies! Since we have not had a complete supply delivery since the end of January, we consider 98% a small miracle and are NOT going to complain (not even a little). Now we just have to find a local pharmacy, which can hopefully supply the remaining 2% of Dillion's supplies and we will be all set.
Dillion continues to have his 'spells' but the good news is that this week those pesky little 'spells' seems to be fewer and further between. The even better news is that we have not had to use the Diastat (a.k.a Zombiestat) at all... We are still all set for the sleep study on May 18th, but since Dr. Bowling has been away on vacation things are still up in the air about the continuous EEG. I am truly hopeful that we will be able to get both tests done in one night and that we will finally have some real answers soon.
Over the last couple of weeks, I have been talking with Deni (our amazing social worker at the OU clinic) and we have been discussing the possibility of doing some sort of benefit for Dillion. However, I have no idea where to even begin so if anyone has any ideas, advice, information, etc, etc, etc. regarding benefits you have either done or had done for you/your child in the past can you pretty pretty please send me an e-mail (okbabygirl20@yahoo.com) Thank you so very much in advance. Any help that you can offer would be greatly greatly appreciated.
Well I think that is pretty much it for now. Believe it or not the chaos around the Craig household has been minimal over the last week, some may even say a little boring... I am certainly not complaining though, as boring can truly be wonderful, sort of like the rainbow following a horrible storm.
So until next time, I hope that you all have a wonderful rest of the week, and just incase I am unable to update again before Mother's Day. I hope that all you amazing mothers have an absolutely Happy and very blessed Mother's Day!
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