Last Saturday while I got out with some ladies Nina started seizing. Not unusual for her, but this one was different for her. It was continual and even after rescue medicine, Josh could not get it to stop. He called 911 and through texts and a phone call with me, my friends and I made our way back home. My mom took our kids while my husband traveled with her by ambulance to the emergency room where she was later transferred to her hospital in Orlando. She had already been scheduled for a 5 day VEEG on Monday so they just hooked her up a few days early to be monitored. I drove up the next day with the kids and Josh and I traded places. On Monday her doctor came in, sure that because of the video Josh captured of her seizure, she would have surgery very soon to remove the tumor on the right temporal lobe that they had decided during the last surgery, not to remove. The news was hard to hear, but we both had a good feeling this was going to be their suggestion.
On Tuesday, after a few big seizures, that I had not seen from her before, the doctor came in with a look on his face that made my stomach turn. Mind you, this doctor is a very nice, but very professional, doesn't wear his feelings on his sleeve, no non-sense, sort of doctor. He told us that all the activity they are seeing now is coming from the left side. He said I really want to see the seizure that she had Saturday before I feel comfortable making any kind of plan. This was so so hard to hear. Basically, she has a lot of serious activity coming from the left, and the right temporal lobe.
On this same day, a family who was visiting Abbi's orphanage was able to meet our sweet girl. The mama posted pictures for me and said, hope you are ready for this sweet girl, she was a ball of energy and everywhere and wanted to be held by everyone! Haha, well she will fit right in, I thought. Then her husband texted me. His text said, "I don't know if you got this information yet, but the nanny informed us that she was given a new diagnoses at the beginning of the month." I braced myself as I prayed a silent quick prayer while the next text came in. "Dear Lord please do not let Epilepsy!" Then the text came through..."she is on medication for Epilepsy but it is not controlled yet."
I felt like my brain was spinning and I thought I must be dreaming. Do not get me wrong friends. I LOVE my Nina! Despite all the hard days, her dad and I will ALWAYS fight till we are in the grave for her and we DO NOT regret bringing her and Isac home and still believe without doubt this was the journey God called us too. But wresting Epilepsy is HARD! Any mom with a child who has special needs will tell you, life is a dance and your dance looks off beat and awkward and you know you are standing out in the crowd and your dance costumes do not look the same, your beat is different, even the frequency of your dance is sporadic, often times you have to sit many of those dances out and watch from the side lines. Nina can not be outside for really any length of time before the heat starts setting off seizures, I will never be able to leave her with someone and not have my brain constantly wondering if she will have a seizure without me there. And if I am completely honest, I fear one of these days she could have one so big that they can not be stopped. Some of me felt frustrated and honestly a little angry. "Lord Abbi was suppose to be my easy yes!" (Is there any such thing?!?! HA!) "I know sign language, we can get her the help she needs, teach her to love and trust and continue to fight Nina's epilepsy! Two Lord?! Do you see us?! Do you see the guilt I have every time we have to juggle leaving our kids to take Nina to the hospital for surgeries and hospital tests and doctor appointments?! I lose enough sleep over Nina and her seizures!" Now I know I may be getting ahead of myself. I know we do not fully know how severe Abbi's epilepsy is, or if it will be a lifetime battle like Nina's. But in the moment after reeling from Nina's news, I was TERRIFIED!!!!
Fast forward to Thursday he told us his plan right now is to change her meds up, and hope it calms the left side of her brain down and then take the right temporal in a few months. If that does not work, if neither the right or left slow down, well, we will talk about that when that time comes.
On Wednesday I was listening to music and heard the song If You Want Me Too by Ginny Owens. The words really struck me and I knew God Himself had used the song to speak to me.
|Picture from a mom who visited Abbi last week.|
|Picture from a mama who visited Abbi a few months ago.|
Don't forget to check out Emma's bracelet fundraiser to help get her to China!!! Emma's Chance
|Picture of Isac and Levi :)|