Friday, January 28, 2011
I've had so many things on my mind the last several days that I havent been able to really put my thoughts together and put it all into words but Im gonna take a stab at it. Lately it just seems that we are swinging from one issue to the next. Everything in my life lately seems "out of sorts" and yet I still feel that I am so blessed. To shed just a little bit of light and explain things... Hollie is our 13 year old. 13 yr old female..enough said! She is beautiful and smart. She is sassy and opinionated. She is mature and responsible while being immature and irresponsible at the same time. Bipolar=my definition so far of the teenage years!! Aidan is our five year old. 5 yr old boy...again, enough said. He is sweet, loving and an incredibly funny precrocious little boy. Oh did I mention hes amazingly beautiful too? (Dont tell his Daddy I said that!) But...he is messy. Full of messes. Dramatic and full of energy. So much energy that even if I had the time to be working out again right now, I dont know where I would pull the energy from. He can literally climb my wallls! And then, theres Lydon...whose middle name is "complicated". I dont know what his middle name really means but they should add complicated to the list. He has so many issues and it seems that once we think we've solved one, another one creeps up. He is having severe GI issues. His tube is backing up. It really seems to hurt him. He is vomitting off and on and even occasionally has milk in his tummy after being fed through his intestines all night long. Your intestines should drain down, not up into your tummy! On the other hand, he seems to handle his fluids during the day and he certainly is enjoying his cheerios, crackers and occasionally even bites of spaghetti or oatmeal. So what do we do? Take away his daytime eating? Add more medicine? Drain his tummy when he gets too full? That is all up in the air. We will be doing xrays and seeing the GI doc on Tues. He is also struggling with "the crud" from all of this weather change. Again what to do? Keep him inside all the time or let him go out and experience the beauty of the sunshine and its warmth or the crispness of the cold winter wind? When he was seen in the ER a couple of weeks ago, they did a lot of bloodwork. One thing was to test his immune system. That test came back looking pretty low. So, we will be seeing an immunologist now to discuss this new finding. I spoke with the nurse from the mito disease doctors office the other day. Some of his bloodwork from their office came back. It showed an abnormal loss of a chromosome. What you might ask does that mean? Well, her response to me was it could mean nothing or it could mean everything. Who knows? Jonathan and I will have our blood drawn this next week to see if there is any correlation. If there is, then in theory it means nothing for Lydon. If neither of us have the loss then only Lydon has it and it could be the underlying cause of his problems. We now have Lydons medicaid and MDCP all approved which is great! But, that also means working out nursing so that it best fits our family and benefits Lydon. I hope this all doesnt sound negative. I do "see the silver lining" in things. I have a beautiful teenage girl who is more than capable of helping me out with things. She gets herself up every morning for school. Makes nothing but straight A's in all Honors classes and does her own laundry. Aidan, thank goodness, is all boy! He seems happy, healthy and very secure despite being tossed around from place to place on occasion. Lydon also has a lot of good days. I am thankful he is walking and able to enjoy a cheerio or a cracker. He isnt really talking to us but he certainly lets us know what he wants or doesnt like. All very normal behavior for a 21 month old. So, I dont really expect for any of this to make sense to anybody else. This is where "its my blog" logic comes in. I am really just putting my thoughts down in order to try and get them out of my head for a moment. That is until the next cup of chocolate milk is spilled! Thanks for all of those who continue to pray for us. I know that is what is getting us through. I will post an update after our appointments next week.