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Progress but with complications

posted Jan 28, 2014, 8:12 AM by FightingFor Mya

It's been awhile since I've been able to give an update. Mya has been getting stronger, walking more & able to handle more of her formula. Her weight is coming back nicely. We have gotten confirmation from Make A Wish, we are going to Disney on Jan.30-Feb.3. We'll be staying at the Animal Kingdom. I think I'm more excited than Mya!

New problem. This started Sunday night around 5pm (2 hours after Make A Wish gave us everything for our trip of course). Mya has begun to exhibit manic like symptoms. She becomes very agitated, she would hit, strike out at people and objects, she yelled, screamed for no reason. Also had trouble focusing on a task. She also appeared to have no fear. Of hurting herself or others. We couldn't leave her in a room by herself, for fear of her hurting herself or causing damage to her surroundings. She also was really rough with Gia. So much so, that we had to keep them separated. At first, I thought she was just acting up, being bad. But I quickly realized, she had no control of her actions. We tried to talk her down, but it just seemed like nothing was reaching her. By 7:30pm, she was on the couch watching tv. She crashed and felling asleep right before my eyes. We got her into bed and got on the phone with Dana Farber.

We reached the on call doctor, didn't get much help from her. We ended up sending an email to Dr. Chu around 4am briefing her on the situation. We were up then because that's when Mya decided to start the day. She was still exhibiting the same type of symptoms. Dr. Chu called us around 6:30am and we gave her the rundown. She wanted to speak with a psychologist, saying that the symptoms we were describing were more behavioral. She called us back and said she was able to get us in at 2pm to see Dr. Nina Muriel.

We kept Mya busy through the morning and got ready to go. We packed a bag because we didn't know what was going to happen in Boston. Dr. Chu said that they might want to keep over night to observe her. We got to our appointment on time. Dr. Muriel listened to my description of the events, then tried to engage Mya. Mya was shy and didn't want to talk. She did throw around the toys in the room while we were talking though. Dr. Muriel felt that the tumors in her head have reached her frontal lobe, where control resides. This is why she can't seem to stop her actions when corrected. It would also explain why she doesn't seem to feel fear, for herself or for being reprimanded. She prescribed a medication to help with balancing her moods. Then, we got to go home.

I dropped off Mya, then went to get the medication. Got it into her system, then got her into bed. She slept through the night, need to see how she is today. Dr. Muriel said that we can adjust the dosing, so she will be able to be active during the day, but help her sleep at night.

A lot will be decided today. If the medication can keep her balanced, we will go to Disney. If not, then we probably won't go. We don't want to bring her on a plane if she is going to have a manic attack. They would probably declare a medical emergency and land the plane. Her attacks are pretty bad. So, we will see how today goes. Ray is at work, Gia at daycare; so I'll be able to really focus on Mya.

Here's to hoping that we will still be able to go!