One month after Surgery

Today Oct. 20, 2011 marks her one month surgery anniversary! Bailey is recovering great! To look at my sweet baby you would never know that she just had two major brain surgeries 30 days ago. They say it is amazing how fast kids recover and they are not kidding. We still have a few bad days here and there but over all she is back to being herself . Her stitches are almost gone, I think I counted 5 left and where they shaved her head is now full of new hair!! It has been crazy since we have been home and I apologize for not blogging sooner. There are two reasons I have slacked on my blog. One is lack of time and when I do get time I am so exhausted I just fall asleep. The other big reason is that I was hoping to share with everyone amazing news and success that we have had with her seizures, but this is not the case. I have been so upset lately that I can not even bring myself to write or talk about it. Bailey was seizure free for 8 days after her surgery, then out of no where I am in her room with her playing and she has one. It was her normal seizure except it took her a few extra jerks to get into the full episode. I was devastated, however I did not throw myself to the floor just yet because the surgeons voice kept playing in my head "she can have seizures for the first month due to brain trauma." So I took a deep breath and held Bailey to she fell asleep then  laid her down and silently lost control.  Deep down I knew this was not a trauma seizure. After that day Bailey started having seizures every two days, then every other day and then every day sometimes multiple a day. I finally got the nerve to call the doctor, I was praying that he would tell me this was normal, all post opt surgery patients go through this, anything to make me feel better that we had just not made the wrong decision but no he could not tell me any of those things. All he could say is this is not what they had hoped for and that he is concerned. He told me to raise her vimpat to 2 more mls a day. This was horrible. Jared was out of town and Madison had just made student council for her class so I was trying to be brave and strong but I was so sick of every time we call a doctor or go see a doctor we get bad news. A year and a half of this and it is all bad news. Bailey still had all of her stitches in her head was still bruised and swollen and we are raising her medication because the damn surgery did not work!!! I am mad, upset, frustrated, SCARED and sad. I don't know what to do, where to go or how to fix this. I hate that. I just want Bailey to not live in  fear of when her next seizure is going to happen. There are so many people that have epilepsy that can control it with medication why can't we find the magic pill like so many others. We raised her medications a week ago today, since then she had a seizure Friday, uncontrollable crying on Saturday (a different type of seizure she has) and then nothing Monday  or Tuesday. Then last night she had a really bad seizure and tonight she had a smaller one. So with raising her medication we still can't get control. I am not sure where to go now but my plan in 6 months if it is not better we are packing our bags and heading to the epilepsy clinic in Cleavland. I can't sit here and watch her go through this anymore. I need answers and I will not settle that this is my babies life. There has to be something or someone that can help. I also have to keep telling my self this out loud so I will believe it. I am starting to loose that hope and I can't do that. I won't Do that!! We will get through this. Bailey will had a normal happy life. I am determined to give this to her.
       I will post again soon, we have many Doctor appts. coming up so I hope they can find the answers and I will have better news to report. I will also post some pictures from the hospital and how she is looks now.

Update: two days out from Surgery

Like I said in my last post I hope this post bring great news! And IT DOES!!! Our little girl is back and crazy just like before! We just sat at her crib all day Tuesday and Wednesday waiting for what happened at 7:00pm Wednesday night. After I finished writing my post on Tuesday morning around 4:30 I was putting the IPAD down when all of the sudden Bailey opened her eyes and said "Hi Daddy!" It was amazing! Was I little bummed it was not hi mommy of course but still I will take the Hi Daddy anytime. She gave me a smile and went back to sleep. She did not wake back up until around 6:50pm the next day. It was so sad and quiet around here Wednesday. We took turns holding her in her crib until she finally just snapped out of the medication  and surgery and was back. It was such an amazing feeling to see my precious baby smile, talk and look at me and know who I was still.

This is the post I wrote in the hospital but was not able to finish it. I just wanted to post it now so you can see what was happening then.