Today was a step back for Payten. She had a lot of problems today, with her breathing, etc. The question is, Why? Is it from us changing the time we are giving her medications or is she getting sick? Well, considering we have no clue as to why she had the set backs she had today, we are going to stop are experiment with the medication and return to the schedule her body is use to in hopes that we will see a difference in Payten's behavior.
I am unsure if she had a few seizures today or not. That is the difficult thing with Payten's seizures, they present themselves different each time and sometimes you can not tell whether she is having a seizure or not. It is extremely frustrating, I wish it was a more straight forward thing with her, but it's not and that is where I have had to learn to be extremely observant and extremely trusting of my Mommy gut instincts.
Payten required oxygen most of the day, even while awake and she was lethargic, to the point of scaring me a few times, for her body was there, but she appeared to be lifeless and a few times I sat there making sure she was breathing. It was not my finest "Mom" moment. Since then, I have had a migraine from all the stress of the different events today brought, as well as the thoughts of her upcoming surgery and things that could go wrong with that. These are the times that are the hardest, because I just want to sit and ponder and do nothing. I just want to help her and relax with her and hold her, but life does not stop during these moments and therefore I can't stop and because of that the stress becomes even greater and then I get these horrible headaches.
Not only do these days affect me, but they affect my whole family and it breaks my heart to see each member suffer. My heart especially hurts for my husband. He worries just as much as I do and he has a job where he is alone all day sitting and thinking and worrying, which causes sad and depressing thoughts to enter in, which leaves him distracted from the task at hand, Driving. Today, he was so distracted, due to being upset and worried about Payten, he hit a telephone pole at work and got written up. It hurts my heart, because I know he tries so hard to do everything right and he hates when he makes a mistake at work especially when it is due to a wandering/worried mind in regards to Payten.
I hate that her downs affect us so much, but she is our daughter and therefore anything that she goes through we ultimately go through too. We just have to remain hopeful that it was just a bad day and that tomorrow will go back to being better for her. She can't be sick right now. If she is sick, then the surgery will get postponed and then with it going into flu and cold season, the question lies, Is she going to get better long enough to be able schedule a surgery or is she just going to keep catching illness after illness? I hope and pray this was just an off day for her and not beginning of an illness, because I want to be able to schedule surgery tomorrow. Like I have said many times before, Payten can look great one day and the next she can look as though death has hit her and we never know what day we are going to get. Life can be insane, especially when it comes to Payten and Parenting her. I just pray she has a better day tomorrow and that this massive headache of mine goes away soon. Much love to you all and Good night.
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