Gosh I'm tired. Tired....really Tired. And the hubby is tired. The last 4ish weeks have seemed like months...years maybe. They have been long. Very long. Going back to work has been harder than I thought, good, but hard. Last night was the second night I had been back and it was much harder than the first. Dan called me around 330am and said Em had been up all night. Yesterday afternoon she started doing this thing where she would fall asleep and then have a seizure that would wake her up...and she did that all afternoon. Only sleeping for a little bit. And more often than not wake up due to a seizure. Well She did the same thing all night. Never really sleeping between 9pm and 4am. (That is along time to be awake when you are not even 3 months old!)
So I was at work. Helping other peoples kids- when my own family was having a rough time at home. Yah- that sucked. Dan did a great job with her. I know he was probably frustrated at times (I would have been) but he held her and loved her and just was awake with her. (This really stunk because he was getting sick) Dan has pretty much been asleep since he got home from work. Poor man even has a fever. My mom watched Em so I could get some sleep after working last night so I am relatively rested...yet still exhausted.
The sweet babe is sleeping better today. We upped her vigabatrin dose again- I called today to let them know now not only is she seizing but it is preventing her from getting sleep. So they decided to increase the dose. We are trying to be optimistic that it will help. And in all honestly she has only had a few seizures today. Much less than the last few days. So that is encouraging.
The other day I kinda had a thought of whether people are still reading this? Still praying? I know I have been feeling kinda defeated. Kinda losing hope. I feel like this blog has kinda taken a doom and gloom turn. Hopefully it doesn't stay long. I much prefer to have strong hope and faith and write posts on the topic that I am confident that God will heal our daughter. However it would be dishonest to type a blog like that tonight. I think it has something to do with the tiredness. I get overwhelmed when I think that I feel this way after 11weeks. ummm how am I suppose to get through the next 11 years?! I can hear my friend Jess saying right now- "Jesus will give you grace to handle each step as you take it...but not a minute before you need it" She started giving me that advice way before I even knew Emmaus had TSC. (or I even knew about Emmaus) It has kinda become my mantra. (I don't even know if that word is spelled right-I'm that tired!) It is good advice and so true. So Tonight I am literally taking things hour by hour. Cause I kinda get overwhelmed knowing/thinking she may be up again all night- cause I'm tired...did I mention that?
Tonight I am thankful for the sweet daughter we have, the financial provision we have been given AND I am tired of dealing with TSC. (and just tired in general)
Go here http://wavybel.blogspot.com/2011/09/sweet-and-sour.html and read about AND instead of but- I needed this blog post. It is SO TRUE to how I feel about this whole deal.
Alright- its getting late
I am going to go feed the baby and probably fall asleep on the couch holding her...I should put her in her bed, but I would rather snuggle and enjoy that tonight.