Hi Everyone,

Maddie has continued to get stronger and stronger these past few weeks.   See below for some therapy session pictures.

As mentioned in last time’s post, the most exciting development has been the emergence of some fine motor skills with her left hand.  In these recent weeks, the right hand is also showing signs of fine motor skills!  Her right hand will often touch and grab at her hair now.  She has yet to rub her eyes or grab at her bib like she does with her left hand, but we hope it’s going in that direction.

In terms of feeds, Maddie has not used her g-tube in over a month now and is still gaining weight.  She’s even taking her medications by mouth!  When we first stopped using the g-tube, I still continued to give her medication through the tube just for convenience.  However, after a week or so, I knew we’d need to stop eventually so I decided to try giving it by mouth.  Thankfully she doesn’t mind it much and takes it like a champ!  In terms of taking the g-tube out (which thankfully is just a doctor’s visit and not another operation) the doctors typically want to have a child not use a g-tube for 3 months and gain weight before they’re willing to take it out.  However, due to winter approaching, the doctors wanted to wait until March.  That way, if she gets sick and refuses to eat, then we can still use the g-tube to give her the nutrition she needs.  Maddie also had an official swallow study performed about a week ago (where barium is mixed in with her milk and purees and they view her neck/throat area while she drinks/eats to make sure she’s not aspirating).  Although not perfect results (we still have to be careful with really thin liquids like water), they were good enough to allow us to continue feeding her as we currently are!

Over the past few months, the therapies are focused on her physical improvements, but more recently, we’ve been able to see a little bit more of her personality come out, which is really sweet 🙂  For example…

• She’s showing preference for foods (NOT a fan of broccoli).  For certain foods, she will fuss and eat very slowly, but when we get to fruit (her “dessert”), she always opens her mouth quickly and willingly.  It’s great to see her knowing what she likes and being able to express that!  Below is a happy picture after her fruit!

• She’s consistently smiling a few times a day and even starting to laugh!  The smiles can usually be initiated, but the laughs come and go as she pleases.  That being said, we’ll take whatever we can get!  See below for some Halloween pictures.

While most of Maddie’s developments have been positive, she has started to have some clusters of muscle twitches recently.  During these episodes, her hands and feet will slightly jerk, there will be a pause of 5-15 seconds, and then it’ll happen again.  In total, this could last anywhere from 20 seconds to 5 minutes.  What’s interesting is that she can still do things (e.g., suck on her bottle) throughout the entire episode and not be interrupted.  We weren’t sure if these were seizures or not, so she was hospitalized to perform a video EEG (electroencephalogram), a test to detect abnormalities (most commonly, seizures) related to electrical activity in the brain.  There are short (1 hour) as well as long (24 hour) EEGs, both of which Maddie had post craniotomy.  This time though, the doctors recommended a 24 hour stay to try and catch some of these movements.  

We went in Sunday, October 30, and they started the EEG at 7pm.  She had two episodes Sunday evening and by Monday morning, the neurologist was able to read the EEG output and diagnosed her episodes as muscle related movements and not brain-directed seizures.  We were then discharged and I was able to take Maddie home and make it in time to Abby’s Halloween party at school!  Another amazing discovery during her hospital stay was that her left eye reacts to light.  Shining a flashlight in her eyes to check for dilation is a part of her routine exam by the doctors and nurses and they said that her left eye pupil was reacting normally!  Her right eye was still very sluggish. The last time her eyes were checked, both eyes were sluggish so this is a huge improvement!  This means that there’s at least a chance that she is possibly seeing something with her left eye.  (Without a reaction to light, there’s very little chance you can see.)

After discharge, we saw Maddie’s neurologist the next day, who mentioned that these episodes could be the evolution of her recovery and they may or may not go away.  However, these movements weren’t of enough concern to the doctor to change her medication and we were told to just continue to observe any changes in frequency and severity.

This most recent hospital stay, however brief, made us even more grateful for all that we have.  A mix of emotions flooded back as we drove to the hospital and again as we waited for the EEG tech to arrive.  We are so grateful for God’s protection and for all the prayerful support from so many people.  Jen and I have both been asked many times by friends, coworkers, and hospital staff how we can be so calm and positive in our current situation.  We truly believe that this peace and positivity is one of the ways that God is answering all those prayers.  

And lastly, the staff at Inova (Fairfax) was extremely warm and caring.  Many of the nurses and doctors remembered Maddie and came by to see her the first chance they got.  Several of the staff who hadn’t met Maddie before commented that she seemed so well known and almost famous.  I didn’t say it at the time, but they’d probably remember her too, if they’d been part of her dramatic, life saving previous visit.