She has given us a few scares where they thought she was status, which to my understanding is where they seize for so long they stay in a constant seizure. Both times the eeg showed she was not. She is now getting a 23 hour video eeg and so far, over 12 hours into it, she has had over 14 seizures. One very long one lasted over 30 minutes but we finally got that stopped.
my baby with her eeg monitors on. they wrap her head so the leads don't fall off.
They have also changed her meds around. Every med has its own horrible side effect. I just pray that this evening when her neuro gets here he will have some more answers for us.
This time around in the hospital has been harder on us. Joe and I are not sleeping much at all. Her seizures are lasting longer and the meds don't seem to help like the first visit we had.
I want to share some feelings I had while setting in the ER for 8 hours yesterday.
As Joe and I sat there with our beautiful baby I watched as parents came and went through the ER doors. Some had a cold, others had more severe issues like rsv but one little girl across the hall from us had a UTI. I watched this family, well kept, mom was 7-8 months pregnant daddy helped his little girl to the bathroom, she skipped back to her room. They were nervous when the nurse came in and said its a really bad uti, we have to give her very strong antibiotics. The nurse got her prescription and some handouts for the cute little family and they went on their way.
I couldn't help but feel a little envious because I know that the nurse is not going to walk in and hand us a prescription and a handout that will fix my little angel. At this point I am not sure if I will ever have more children (waiting on genetics testing). I don't know if Emily will ever skip with her daddy. Our future on earth is so uncertain with Emily and its just not fair! I am mad, hurt, disappointed, sad, crushed, devastated, let down, in despair, numb, and above all THANKFUL!
I may sound crazy to some but I could not be more thankful for Emily. She made me a mommy. She needs me, loves me, and when she looks at me purposefully and smiles it takes all that pain and anger away.
Emily may never be a "normal" baby and that really hard to deal with. I am grieving the baby that I dreamt of having. At the same time I am rejoicing in the life that I do have with her.
I am not going to lie, this life is hard. I am so physically and emotionally tired, no change that to exhausted, all of the time.
Between watching around the clock for seizure activity, making sure her meds are given at the right time and right dose, doctor appts, physical and occupational therapy, stretching, feeding her takes a lot longer and so does bathing her, I have to remember that she is still a baby. She still needs to have play time and get out in the world and experience life. I am trying my hardest to do all of those things. It is just so hard.
I don't want to offend anyone with what I am about to say. I know raising children is hard. Obviously I don't have teenagers or more than one but tonight when your toddler is screaming because he/she wants chips for dinner instead of the wonderful meal you slaved over the stove to make them, don't get mad, be thankful that they can eat what they want and can tell you.
When your teen storms off after you two had an argument and you just want to punch a hole in the wall and ship them to someone elses house for the rest of puberty, stop and look at the blessing you have and the adult they will shortly be.
Some people may complain because they don't have enough "me" time or the house is mess because the kids have been playing or you have to take the kids to the doctor for a runny nose and cough for the 3rd time this month. Just remember to stop and be thankful for your kids and their health. I know a lot of people take it for granted. I know Joe and I did in the beginning.
Cherish every moment you have and every I love you they say.
Tonight as you say your prayers thank God for your children and their health.
Lord, I am so thankful for my Emily. You gave us a beautiful princess to love. I am a better person because of her. I know you have the power to heal her, I am calling on You. I cry out to you in my pain. More than anything I want her well. I know as much as I love Emily You love her more. Help us to understand why this is happening. Let me be the mommy she always needs. We love you so much Jesus! Thank you