Hi everyone,

The last few months have been a whirlwind of activity and we’ve got a lot of updates for everyone. Maddie’s physical as well as neurological development have progressed very well and she’s added a couple pounds to boot!  On the job front, after three years of taking care of Maddie full time, Jen has rejoined the workforce.  We are ever so grateful she found a position that’s remote and she can work from home without suffering through a commute.  In order to pick up some of the scheduling duties, Bill started a new job with a small start up company that’s fully remote as well.  We both started in late July and have settled into a new equilibrium with Bill doing most of the PT/OT/Abby lessons and Jen going to the Ped/Neuro/Specialists.  The house is still not fully equipped for two full time workers, but we’re getting there.

Here’s an example of how many things are involved with Maddie’s breakfast.  With Bill and Jen both home, tasks like this can be split up and not so overwhelming for one parent.

Maddie’s biggest gains this past few months have been in her ability to roll up on her elbow, then sit up on her knees/legs and enjoy the position for almost a minute.  This has been the biggest surprise to most of the therapists and friends who haven’t seen her in a few months.  Here she is super happy with herself after getting up all by herself onto her knees.

As you can see, her dominant left side does a lot of the stability, but we’ve been working on getting that right hand involved by bracing it to her leg or the floor and letting her use her left to play or bring a toy to her mouth.  She’s gotten better at using that side after just a few sessions!

(We have better pictures of her sitting up, but she also has learned how to take off half her shirt, so for decency, we’ll skip those.)

In terms of fine motor skills, Maddie’s been improving her hold of the milk bottle.  In our last update, she had to be lowered to a relatively prone position in order to hold up a bottle to feed herself. Now she’s able to hold it without any help right in her chair!

We still have to be vigilant because she’ll drop it at any moment, but overall, her control is much stronger and she’ll even pull it out to re-pressurize so the flow will be faster.  Amazing improvement in just a few short months.  Here she is showing off outside drinking some water during a walk in the fall foliage.

She’s also able to hold and manipulate her toys in more positions.  It was tough just a year ago for her to do more than one thing at a time, but now she can use her core while holding up her head and use her hand to shove a toy in her mouth while smiling to a song.  It’s just amazing to think of the progress she’s made in the last year or so.

As for her lower body, we’ve tried to strengthen her legs by borrowing some large human exercises and getting a larger gait trainer.  To the first point, we’ve had trouble getting Maddie to use her right leg since it is so much weaker than the left.  This has caused her to have uneven development – it seems that if her right leg was as strong and controlled as her left, she would probably be able to walk by now.  To try and remedy this, Bill took the liberty to invent a new piece of therapy equipment similar to an incline leg press at the gym.  Although the motion is not one we want to encourage, it does increase strength training and builds coordination between the legs.

In her orthotic foot braces and shoes, she is able to do 200-300 reps at a 20-30 degree incline.  As she gets stronger, we can raise the angle to increase resistance and hopefully even out the strength differences between the legs.

However, the simple motion of pushing with both legs has to be coupled with full gait training and Maddie has struggled mightily with the old gait trainer.  She is now at the extreme edge of the height and size limits and would just protest by flopping over the supports like a wet noodle and moaning softly like a wounded fawn.  Our change of insurance has caused a long delay in her new gait trainer and we had to restart the process again, so in the interim, our PT from the school brought a loaner that’s the right size for her.  She has done much better in it, but still likes to scoot with her left foot while dragging her right foot.  We are working to coordinate the two and encourage her to not only walk further but also alternating steps.

Maddie’s legs are also getting more flexible. She can not only eat her feet but can also curl up for a nap in her customized therapy seat.

Bill’s hard work and training has been repaid with the unintended consequence of creating a louder and stronger morning wake up alarm.  With her new strength and extended reach, Maddie can now notify the entire house once she wakes up and wants a diaper change.  She will slowly turn and find the one piece of blank wall to thump on, or failing that, she’ll rattle the door to the crib, intermittently waiting for a response from us.  But this is one consequence Bill would gladly endure.

(We have since moved the bed away from the walls and padded one side to prevent the rattling, but she’s figured out we can’t do anything about the rattling primary door. )

Cognitively, Maddie’s learning a lot and responding to more.  We have been trying to use verbal communication to help train her to do things or prepare her for things ever since her surgery and it’s become more fruitful in the recent past.  She now consistently opens her mouth to “Aaaaah.”  Bill can ask her to raise her arms so that he can take her shirt off for a bath and she’ll do it!  When you come close and say “Mmmmmm” she will turn her head away from that sound because she knows you are going in for a big, wet, (and sometimes scratchy) kiss! Her favorite song to jam to is “Wheels on the bus” and when she hears the first word, “Thuuuuuuuh” she’s stop whatever she’s doing and burst into a giant smile.

Here she’s responding to Bill belting out “Wheels on the bus” on a local hiking trail to the bemusement of the passersby.

With all these newfound skills, she’s also more opinionated.  When she doesn’t want to do a particular exercise, she’ll “run away” by squirming and protesting until finally playing possum.  Her increased strength also means that she can fight that much harder against the belts and restraints on her equipment and we are now realizing why they cost so much.  We also noticed an increase in her screaming fits where nothing seems to calm her down and mentioned this to the neurologist.  To confirm it was the keppra medication causing rage (it is a side effect), he increased the dosage for 2 weeks and asked us to observe the impacts.  Not only did we see more “keppra rage” incidents, but her stronger seizures also increased noticeably based on our years of careful logging and tracking.  However, now we are at another juncture to decide what medication to replace it with – one option causes drooling (which is already an issue with her weaker right side and causes her to develop a rash) and the other option may cause kidney stones.  We could really use some prayer for wisdom on deciding how to move forward.

Another development has been constipation.  It started about 6 weeks ago when we noticed she did not have a bowel movement for almost 3 days and would strain very hard.  We increased her fruit and added Miralax, a gentle laxative to her food.  It has helped but we’ve struggled finding the correct dosage as sometimes she goes too many times and other times she’s still stopped up for 2-3 days.  One especially long episode caused her to throw up her dinner while straining and then diarrhea twice in bed all within one night.  It was a very tumultuous evening for the Zhang family.  To prevent this, we’ve added more of the laxative and tried to explore other fibrous foods.  The past two weeks have been good, but as of this blog, she’s now overdue for a bowel movement, so we can only pray this cycle normalizes at some point.

The seasons changing has given us many more opportunities to go outside and enjoy nature.  Here are some pictures of Maddie joining in the activities in our backyard.

Here we are at Cox farms. Bill wanted to send her down one of the slides, but then it started raining.  Next year!

Here are the sisters in their Halloween costumes.  Abby wanted to be a black cat and Maddie had a last minute costume change to be a cute skeleton.

And to end, here are more pictures of Maddie’s sweet smiles.