We all have our ups and downs so I know everyone can understand exactly what I am talking about when I say I don't even know what emotion I am feeling anymore. The last week has been a bit of everything. Last Thursday Callie came off of oxygen for the first time since coming home. I was so excited, yet so stressed out. I was finally able to take a breath full of joy and excitement that finally our little baby girl is pulling through everything she has been through the last few weeks. We were making huge progress. I was so excited to tell everyone I knew how great she was doing. Even tolerating her feeds. Half way through the day I got a phone call from our nurse who was taking care of Callie while we were both at work. Only to find her twitches were back. I wanted to cry.. right there at my desk. I still had one last bit of hope it would just go away with the surgery. I always thought there could be nothing worse than watching your child suffer. When these happen she twitches and screams non stop. It breaks your heart. I think I have learned 1 more thing worse than watching your child suffer...it is watching them suffer and having a doctor look at you in the face and tell you just to document it. Honestly, that is what we are told. She has had seizure tests and they are fine, so we are told just write it down. If I knew why she was crying and if it hurt her or just scared her I would feel better. Most of you that know me well know what I have been doing in any free time I manage to find.. yes searching the Internet for anything that makes sense. We are working on getting another opinion..starting with Madison. Someone has to have an idea. Typically these episodes last 36 hours and suddenly she just snaps out of them. This time about 60 hours... She is still moody, but today is the first day since Thursday that she seems better.
On a better note. I went to a seminar last Thursday on Special Needs trust funds. It was given by a local lawyer.. completely Free! It was so amazing. Great information. Even if you do not have a special needs family member it was a must listen too. It gave me a lot to think about it caring for our children's future. Also this weekend was nice to lay low and enjoy the weather. My dad and his friend came to visit on Sat to visit and see the kids. Then Sunday we just got the regular house work done - laundry and cleaning as the kids would let us.
Zak is doing good.. he will be going back to school again this week. First time in 3 weeks. They have the class field trip to the school forest on Wednesday. Then conferences on Thursday. The teacher told me we need to start talking about kindergarten.. I nearly feel off my chair. I know we like to think they will stay small for every, but reality is they do grow up.. our little baby boy going to a big boy school. Pre-K or early childhood did not seem like such a big step. I wish we could just take his teacher with. I am sure there are plenty of great teachers out there, but his current teacher is amazing. She does a great job with him.