We've made it home from the hospital and had a great week. Harlo spent Tuesday and Wednesday hooked up to the EEG so they could monitor her brain waves and look for any abnormalities. Thankfully the doctors had decided they didn't want to provoke any seizures and that they only wanted to monitor what her daily activity and sleeping looked like while on her medication. Thank goodness!
By late Wednesday morning the neurology team had come in and talked to us about her EEG and explained that everything looked normal so their next step is doing another MRI to get a clear picture of what may be going on in the left side of her brain. Since our MRI was scheduled for Thursday morning they let us go home for the night. Jeb and I we're thrilled due to lack of sleep however Miss Harlo was not. She absolutely loves the hospital!
1. All attention was on her all day everyday.
2. Students from Child Life Services came and played games with her and she got to entertain them with her "magic shows".
3. By Tuesday evening she realized that on the EEG monitor was a video of her so she could watch herself dance so from that point on she spent hours doing dance routines and thought it was hilarious that the doctors got to watch it.
So on Wednesday we packed up and headed for home. It has been four weeks since this all started and it has been four weeks of non traditional sleeping routines which also means mom and dad are turning into zombies. So when we got home we decided we're getting Harlo's room situated. When we first came home from the hospital in October Jeb and I had to put beds on the floor and sleep on either side of her due to the seizures she was having at night. Her brother graciously swapped his queen bed for her bunk beds so we had more room to sleep next to her. Kilo, our 85Ib American Bulldog has taken to sleeping with Harlo which also means it is quite crammed in bed. Each day her anxiety lessons with going to sleep so we are transitioning back into our room slowly. It feels like we have a newborn!
Thursday morning we headed back for the MRI. Long story short Harlo had her first MRI when we we're admitted to Children's Hospital a month ago and had one of her worst seizures while she was in the MRI and it had also left her right side paralyzed for several hours after. Needless to say she had some anxiety and fear going into the MRI. Dad had been practicing with her by building forts and teaching her breathing techniques but in the end she was too distressed and they needed to fully sedate her. For those that know her, you know she's a bit strong for her tiny frame and you combine that with her father's stubbornness it made the sedation process quite interesting. In the end she got the MRI, stayed asleep, woke up a little monster and mom and dad we're emotionally taxed.
We got the call back on Friday from her neurologist and both the MRI and EEG came back normal which is an absolute blessing but means there's still no known cause. Like I said in the past this seems to be very common so usually the plan of action is to remain on medication and wait two years being seizure free and then talk about transitioning off the medication. But since I'm not a typical parent and since "no known cause" isn't a good enough answer for me I've been researching, hunting down doctors and asking questions because I know that something is triggering this. Whether that be lack of sleep, food allergies, vitamin deficiency something in her little body isn't happy. And I found just the person to help me!
When we decided to be very transparent and share our story my goal was to do so because I believe it could lead me to people and resources quicker. If anything else I could be an advocate to share all the knowledge that I learn along the way with others. Eight years ago I went through my own personal hell when my body was completely fighting itself and since we didn't have the resources we do today it took me a lot longer to figure out how to heal my body (I'll share my story at a later point). I knew we had the opportunity to move quicker if we used social media which is exactly what is happening. I am grateful for each of you reading this, I'm grateful for all your kind words, suggestions and referrals. In my next blog I will introduce you to the woman I met who is just the person I need to help heal Harlo.