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The EEG did not show anything remarkable during the involuntary movements. They are definitely not seizures. The doctors believe the new symptoms happened because we discontinued steriods. We resumed steroids on Tuesday, and the involuntary movements have decreased- in fact, none so far today. Hoping that sensation in the leg may also return after a few days. 

Working on arrangements for second opinions on all of these changes. 

Thank you for your continued prayers. 

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Another Hospital Stay

Leah was having some involuntary movement in her legs and arms yesterday. The events became more involved as the day progressed. Late afternoon, I called 911. I was concerned that she might be having a type of seizure, and I knew it wasn’t safe to drive her to the hospital myself. She was alert and responsive the entire time. When we arrived at the hospital, her core temperature was very low, so they warmed her with a special blanket. Her white blood count was also lower than normal. There was no sign of infection, but they gave her antibiotics just to be safe. 

She is currently maintaining a normal temperature, and all of her blood work looks good. They started a 24 hour EEG around 3 this afternoon. She’s had a few episodes of the involuntary movement while connected to the EEG. The next step will be determined after reviewing the EEG results.

The lack of sensation in her right leg has increased. Although the motor function is there, it’s been more difficult for her to stand for transfers. In response to the change in her right leg and the involuntary leg and arm movements, we started her on another high dose of steroids. We will continue the steroids through Sunday with the hope that we will see the new symptoms subside. If not, we will discontinue the steroids. 

We are also in the process of obtaining a second opinion on the recent changes.

Please pray for our sweet girl.🙏

Good Results

The MRI showed overall improvement. No explanation for the lack of sensation in her right leg… We will just keep moving forward and praying for complete healing. 

Leah was incredible today. She remained composed, despite the situation. Not only was this MRI tube much smaller, but the stabilizing mask was bulky and entirely too close to her face. For a second, after they snapped the mask into place, I almost called it off. But she remained calm, so I followed. On top of that, the earphones weren’t working, so the playlist that she spent an hour organizing the night before, could only be played in the room to be heard over earplugs and the banging of the machine. I have no idea how she stayed in there, absolutely still for two hours, without a single complaint. Executive decision- NEVER subjecting her to that again. We’ll hold out for MRI 3 or go elsewhere.

Tomorrow was supposed to be Leah’s last day of rehab, but we were offered a two week extension. As much as we want it to be over, we know it’s the best thing for her. So we’ll be sticking it out until January 27th.

We’ll continue with chemo every three weeks, and her next appointment is Tuesday. 

Prayer Request

Leah’s MRI, originally scheduled for the end of January, will take place tomorrow at 1:30. Last week, Leah noticed a lack of sensation in her right leg, which is her good leg. She still has full motor function, for which we are thankful. Please pray that we get good results, despite this change. 

Unfortunately, MRI 3 wasn’t available on such short notice. This means no movie… And a long, crappy two hours for Leah. How we live in a world inundated with technology, and a children’s hospital doesn’t have movies in the MRI machines is beyond me. It’s at the top of my “Ridiculous List”… 

I probably won’t have the results until Friday, since it’s taking place so late in the day.

Thank you for your prayers. 🙏❤️