Updates

Time for some general updates about the kiddos.

The short summary about Anna is that her scans from last week are stable; however, she still doesn't eat orally or walk ... but... overall she is doing really well.

Instead of going system by system for the longer explanation, I'm going to give a few illustrations to show why we think she is doing well.

On Monday afternoon Anna had a follow-up EEG to check her need for anti-seizure medication.  The technicians as well as the neurologist asked, with puzzled looks on their faces, "So why was she taking the medication in the first place?"  This time, her brain showed no sign of seizure activity.  Over the next month and a half she will be weaned off of the anti-seizure medication.  Hooray!

(Unfortunately, the EEG procedure itself was pretty traumatic.  23 electrodes had to be glued to Anna's scalp.  About the time the technician started on the fourth, Anna was already crying.  Then each electrode had a special lubricant injected into it.  The sensations were quite disturbing to poor Anna.  Many tears and screams led to much vomit :(  But I digress.)

In the last couple of weeks, Anna has voluntarily picked books up off the couch to read for fun.  Not as homework assignments, not because we have encouraged her to, just because she wants to.  After the struggles in attitude and endurance with reading back in December, seeing Anna want to read independently is pretty cool.

At Anna's neuro-oncology appointment on Monday afternoon, her primary oncologist was enthusiastically positive about Anna's overall health and progress.  We went through the medication list and reduced several and eliminated some.  The list of 14 or so meds Anna came home with last May has been slowly diminishing.  She will soon be down to only a couple of supplements at a fraction of the original dosages, her thyroid medication, good ole' zofran (anti-nausea), zantac, and melatonin.  Not bad.

This week I took the kids to the Little Gym for an open gym time; we hadn't been able to go in several weeks due to illnesses/tiredness/spring break.  This week Anna could crawl and scoot faster and farther than she was able to do a month ago.  She could move over and around obstacles, which would have tripped her up previously.  We hope to rearrange some furniture in our home soon to provide Anna with more safe and fun opportunities to move around out of her wheelchair these days.  That's going to be the best way for her to continue to get stronger.

Last November, Anna would cringe if someone even touched her face or neck; the sensation was incredibly uncomfortable.  Last Friday and today Anna's therapist was able to massage her neck muscles.  Huge steps here, people.

While at the Little Gym on Wednesday, another family we have seen often during this time was also there playing, although we don't know them outside of the open gym sessions.  All the kids started creating a fort with some of the equipment and, with Kate's lead, made Anna her own room in the fort.  It was awesome to see Anna able to play and interact imaginatively with other kids.

We are awaiting the phone call regarding Anna's port removal surgery.  Hip, hip, hooray!  The port has served its purpose for more than a year, but we are ready for this implanted device to come OUT.

In our observations as Anna's parents, her overall endurance is improving as is her speed with her brain functions, both cognitive and muscular.  We may not have the official tests and information to back it up, but we probably have more overall experience with Anna.

Besides all of that, one of my favorite things about Anna these days is that she will often ask "Mom, what can I do to help?"  I wish I had better answers to that question for her!

Kate's turn.  This kid badly needs a "mental health" day off from school.  Wednesday evening she made herself a sign that read "please be kind to me.  I am tiord!"; she taped it to her shirt.  I figure that if adults are allowed to take a day off every now and then, a kid like Kate should have that opportunity, too.  Now I just have to find a day that doesn't include any appointments, therapy visits, specific errand days, etc. so it can truly be a "day off" for her.

Ethan's turn.  Here is a quick list of some of his more memorable phrases.  It's time to write them down before they change again.

"I want to be ALL done." - He says this when he thinks he is done with a meal, shopping trip, church service, other activity, etc.  His tone and facial expressions are priceless.
"Wet me fink about dat." - Translated as "Let me think about that."  He picked this one up from Anna's speech therapist.  Anna uses it now to give herself some more time to put her thoughts together before answering a question instead of just staring into space while she is thinking.
"Are you sad?" - As with our other children, Ethan is very in tune to others' emotions.  If I use a certain tone, he wants to know if I am sad, why I might be sad, if someone else is sad, why they might be sad, etc.
"Efand" - This is how Ethan says his name :)
"How are you?"  "Good." - A conversation two of Ethan's trains were having with one another last week.

The little stinker is also pushing some limits these days.  We have begun using time-outs with him, as well as "breaks" in his room, when necessary.  Both seem to be effective for the time being.

Time for prayers

Thanksgiving
Please give thanks for all of the progress that Anna is continuing to make, both visible and invisible.
Please thank God for Anna's continuing motivation.
Please give thanks that Anna's EEG came back conclusive for no seizure activity.
Please thank God that Anna's overall health is stable.
Please give thanks for the overall health and enjoyment of our other children.
Please continue to give thanks for all of those working with Anna and our family; everyone (new and old) is still putting in extra time and energy for this kid.
Please continue to give thanks for the strength, wisdom, peace, patience, and rest that we are receiving.

Requests
Please continue to pray for Anna's educational team, especially as the spring weather effects all of the kids :)
Please continue to pray for Anna's medical team; she is still on their radar.
Please continue to pray for Anna's rehab team, especially as Anna transitions to a new feeding therapist in the coming two weeks.
Please pray that Kate recovers quickly from her cold and that it is a mild one for the rest of us.
Please continue to pray for wisdom, strength, peace, patience, and rest for all of us.

Thanks, as always!