Meeting in Denver Went Well

Maggie’s follow-up with her doctor in Denver went very well. They are going to accelerate the weaning of her problem med (tranxene), which they hope will help during her frequent evening seizure activity and associated symptoms. This med is causing all sorts of issues and until it is taken completely out of the picture, the picture will stay muddy and complicated. That drug should be completely out of her system within the next three weeks.

We’ll continue to follow-up with them on a weekly basis via email about how she is doing and make necessary adjustments. The fact that her cognition and overall affect is much better is a great sign. Even though she continues to have seizures, she’s staying out of the hospital and that is a good sign. According to her doctor, the process of getting Maggie stable will take quite awhile. Our next appt with them is on November 18th.

We are becoming increasingly more comfortable with the epileptologists in Denver, but still keeping St. Louis completely in the loop on how everything is going.

We’ll continue taking it day to day, trying to create as stress-free of an environment for Maggie, and be thankful for the bursts of rest He gives us.

Headed to Denver for Appt at Children’s

Well, it has been three weeks since Maggie was released from Denver Children’s, and we go back today for a follow-up appt and, hopefully, come away with a plan for where things go from here.

Obviously, Maggie is doing much better than before, but is still quite unstable.

Please be in prayer about this appt. It is at 11:30 this morning.

Never a dull moment….

Maggie is continuing to make good incremental improvements, having her best night of sleep in weeks last night. We have a follow-up appt with doctors in Denver next week. I have some pictures I’ll post up later from a wonderful visit from the cast of The Best Christmas Pageant ever – it was absolutely awesome.

Meanwhile, this morning, Dax was putting dishes away when he suddenly passed out for about 30 seconds. He was aware of everything going on around him, but couldn’t respond, just staring blankly straight ahead. After he came to, we took his blood pressure and it was low. We called Dax’s doctors and he told us to take him to the ER so they could observe him. They think Dax could be having some blood pressure problems or other vascular issues. We’ll be making an appt with a cardiologist to learn more. After staying at the ER for a couple of hours, they let us go home. I took Dax to school. Until we get in to see the cardiologist, the doctors don’t want Dax doing any strenuous activity like Taekwondo, etc.

Been an Up and Down Couple of Days

This past Friday night, Maggie’s seizure activity hit a higher frequency, spreading in to Saturday and Sunday morning. We are dealing with it by keeping her home and monitoring her closely. As such, her legs have been more unstable. She’s definitely not as strong and stable as earlier in the week, but doing ok.  In fact, she is outside shooting hoops right now. Clearly the up and down aspect of it shows through.

We stayed home from church today since Kathi and I have been staying up with Maggie until 12:30 am – 2:00 am.

No More Walker or Wheelchair

Beginning yesterday, Maggie began walking on her own again. It really is amazing – one day she needed a walker, the next day she didn’t.

Amazing….

Slowly Making Progress

Maggie is still having one to two seizures a day and her body is hurting a lot, but she is making good, but slow, progress. She is still having trouble sleeping at night, though. Overall, things are remaining calm – calm for us and Maggie

The weaning process of one med and increasing another is having some good impact on her mental facilities. Maggie’s cognition and overall demeanor are drastically better than they were even last Monday. She’s tackling a lot of school work, taking the initiative to do 4 to 5 lessons a day.

Once she gets weaned off the troublesome med, we’ll be getting a PET scan scheduled for sometime in November.

Staying Calm

Since returning home, Maggie is continuing to remain calm and mostly seizure free.

We’ll take it………..

I Met The Face of Tired

I met the face of tired, curled up on a couch, shamefully hiding the half-moon bruise under her right eye. Her two year-old was lying on top of her, softly rubbing her mommy’s unkept hair. The other children huddled close together on the floor, their faces lit up from the bright flashes of a world they longed to escape to. Meanwhile, just 200 feet away, nurses tenderly loved their sibling back to life.

I met the face of tired, crouched down outside a child’s room and dressed in those all-too familiar blue scrubs. His torso shook violently, consumed with unbearable grief. The wailing would soon follow, but not until after he collected himself and told the little boy’s parents that the unthinkable had happened.

I met the face of tired, running out from the garage, longing for a hug from his daddy. Hugs speak volumes, and this one said “I miss you blessing me, I miss you being with me at scouts, I miss our wrestling, I miss our pizza night, can you teach me how to shave. I’m tired and I just need you to hug me.”

Meetings With Doctors Going Well, Being Released Today

Maggie is much more calm than last week and is doing very, very well.

Today has been meeting day: meeting with the neurology doctors and others to help figure out what is going, what is causing all the movements / itching, what the insular region is doing, and what they can do about it all. It is a messy ball of yarn.

There appears to be some huge anxiety side-effects to one of the meds that Maggie was on, exasperating the symptoms Maggie was having, and clouding the seizures coming from the insular region: causing itching, huge muscle movements, etc. So, they are beginning a slow weaning process of that med and reintroducing another that was beneficial for a period of time.

A PET scan will be rescheduled for when she is weaned off since one of the meds skews the PET scan results. Further discussion of where things go from here (PET scan, invasive monitoring, etc ) will continue once the doctors are able to establish a more accurate baseline for Maggie.

So – we are being released today and, as usual, take it day to day, staying in contact with the epileptologists.

About The Same

Maggie had three more seizures last night, and woke up with one. The good news is that they are not as intense. However, experience has shown that the less-intense ones will simmer for several days with some out of control ones flaming up later.

The doctors are capturing the data they need and will conference tomorrow. Maggie will likely have a PET scan tomorrow. All of this is their process of getting to know Maggie, her seizures, her baseline ( whatever that is now ), etc. We’ll see where things go after tomorrow.

They’ll either send us home while they evaluate the data that has been collected or introduce some more options that we’ll need to evaluate. We don’t want her coming home, though, without a plan to intervene when things get out of control.