Nurse 24/7

There is nothing I would not do for my son.........we have frequent visits to many different doctors and I try very hard to maintain balance within our family while working full time. Sometimes it is so frustrating to start a new treatment for Andrew's seizures and not really see a change or even see a decline in his seizure control. Jess, Andrew and I were enjoying a summer day at the lake withthe adaptive sports program when I got a call from Boston Children's. Andrew's lab work showed that he was acidodic again with a CO2 level of 18. Normal is at least 22. So I was given new orders to increase his Cytra-K to 1.5 packets a day and increase his fat to carb ratio to 3.5:1. The last time we did that his CO2 levels really dropped. They feel he can handle the ration now so here we go. I had to throw out the formula I had already made up for the other ratio and throw out the pre made meal dishes. UGH!! Those were a real pain to put together! I have to weigh everything on a gram scale before it goes in the small meal dish. I have an appt scheduled for October 6 with his neurologist at DHMC. I was told to make this appt in case he continues to not respond well to the diet. We go to Boston in August for an out patient 24 hour EEG. They hope to catch more of his seizure activity and see if the diet is helping at all. I sometimes feel that I leave my job as a nurse during the day to come home and I am a nurse again. I am SLOWLY convincing myself that it is ok to train other people on how to complete Andrew's tube feedings. This is very hard for me...you an laugh but I have become a very protective mother over anything to do with Andrew. I know that this is not healthy, sio I will be training the young lady who watches the kids every other Saturday how to do Andrew's feedings. I had made myself almost sick trying to figure out how myself or Allen (or our daycare provider) can be present for his feed every 4 hours during the day. I have full confidence in D.J. I just have a hard time not being the one to do it all and all the what if's.
Andrew is now in pre school and that is a whole different mess! Things are never easy and this is even more true with a child who has special needs. I now have to keep on the school to be sure that all the items listed in his IEP are being done and that my child isn't segregated or left in a corner alone. I recently had someone at work say to me in regards to my son what makes your son so special you think that the school should make that change just because "your" son is there? At first this brought on alot of anger...now just sadness knowing that that is the life my son has ahead of him. Someone will ALWAYS think they know what he needs or criticize what he gets or services or adaptations and they will never get to truely meet Andrew. They will never get to see what a great kid he really is. They will only be focused on how much he costs the tow, school and how he takes away from the other kids. All I can think is how dare you, how dare you crticize me or my family unless you live here and go through what we go through everyday. I never know what kind of day Andrew will have. The day this person made this comment to me was Andrew's first day of school and they had already called to say he had 14 seizures in 1/2 hour. then that person felt the need to make that comment within minutes of me getting off the phone.
I am a better person and I can only bring out the best in each day and look past those things that come along that may try to bring me down. I will surround myself with positive people. Make no mistake I am a mother defending my son and he will never go without because someone thinks they know better. I will go to the mat for him each and every time!
Thank you to everyone who has made Andrew's Hope a huge success!