Hi Everyone,

Summer has started and Maddie’s out of school!  Her last week of school was the first week of June.  All her teachers and specialists have been amazed with the progress she has made since the fall.  The steroids have been a miracle in terms of resetting her seizure activity.  We’re so thankful for the progress she has made and hope she’ll continue to do so!

Maddie has been making great strides with her fine motor skills, from taking her sock off to bringing her foot up *almost* to her mouth to dropping and picking up toys!  Here’s Maddie eating with her foot “relaxing on” (or kicking 😉 ) Bill’s arm! The broccoli must not have tasted that great… 

Similar to before, a huge motivation for Maddie is still oral stimulation.  She loves bringing stuff to her mouth and chewing on them.  Below is her chomping on her favorite chewy tube… she’s even able to push it back and forth from one side to the other!

 

 

Although not consistent yet, Maddie is starting to hold things with both hands at the same time.  It’s hard for her to bring her right hand forward and up, but we try to encourage it and will keep practicing!  See below for some success!

With our recent rotational switch from PT to OT at Inova Hospital, there was a staffing change so Maddie’s working with a new therapist.  I really appreciate her focus on building Maddie’s core strength so that she has the ability to then focus on her fine motor skills.  I feel like this is the balance of PT and OT that Maddie needs.  See below for a picture of her sitting in a chair (!!) and playing with toys.  This chair has little support (just a seatbelt) so she has to work really hard to stay upright, but she has done pretty well for the past few weeks!

Maddie’s core strength has also greatly increased recently.  She’s been able to prop herself up on her right elbow and attempt to get into a sitting position.  At first it was just a few seconds before she fell onto her back, then it became longer with her record being over a minute.  She looks as if she’s taking a rest on her side and seems comfortable as her core strengthens over time.  However, once she’s able to prop up this high, the distance that her head can fall has been a concern (notice the veritable wall of pillows arrayed around her – more on that below).  But after a few weeks of free-falling backwards, Maddie’s figured out how to slow her rate of descent and we noticed a very purposeful head bob right before impacting the pillows/blankets.

She seems to be yearning to sit up, but if you grab her hands and pull her into a sitting position, she seems to consider it for a moment and then decide that it’s not what she wanted and flop back to start the whole process again.

Her increased range of motion also means that containment has been an issue during “free-time” when she is allowed to roll around.  It’s become an arms race between building walls of pillows high enough to contain her and her new abilities.  Bill exuberantly re-configures building materials and refines his technique and gleefully watches Maddie break them down.  It is currently a stalemate with Maddie unable to surmount an inflatable pool noodle and resorting to loudly scratching at it in protest.

Another new skill that has emerged in the past week is Maddie’s speech!!!  Since the steroid treatment, she’s definitely been more vocal, but mostly with vowel sounds.  However, just this past weekend, we’ve heard some ma-ma and occasional ba-ba’s… usually only when she’s frustrated in her adaptive chair.  We’re not sure if she’s asking for food (we say “nom-nom” or “more” often when we’re feeding her) or just exploring different sounds, but we hope it continues and will maybe soon have meaning.  Below is a video :).

Bill has been desperately trying to get her to say more “ba-bas” (爸爸 – daddy in Chinese) but she stubbornly prefers “ma-ma-ma-mas.”  He is currently brainstorming bribing techniques to try out.

Medical update-wise, Maddie’s seizures have increased in frequency, but thankfully it doesn’t warrant a change in medication.  We recently saw her neurologist and he mentioned he would be more concerned if the duration of her seizures increased.  However, she’s still just having single twitches so we’ll continue to observe and update him.

There were a scary couple of days about a few weekends ago when she had some sort of viral infection. She had her first real fever (above 101) since her surgeries three years ago.  Although she didn’t have many other symptoms, her appetite was almost entirely gone.  She would only tolerate eating yogurt, applesauce and some milk.  This may just sound like normal sick kid behavior and Abby’s appetite also suffers when she’s sick, but I can at least force liquids.  However, with Maddie, it wasn’t just her not willing to eat, it was as if she couldn’t figure out how to suck the bottle, chew her food or swallow anything, similar to when she had to have the g-tube installed right after her craniotomy.  Her mouth movements were very abnormal.  The fear was that if she doesn’t get enough hydration, she would have to be hospitalized to get an IV.  Thankfully, the lack of drinking was only for one meal and then over one night.  The next morning, she was able to handle some milk!  I was very stressed for the next 2-3 days, to say the least, but then she quickly recovered and is back to normal since then!

Unfortunately, Maddie’s sleep has regressed again.  She still falls asleep soon after the melatonin is given, but she’s up in the early hours of the morning rolling all around.  Her eyes seem to be closed and some of the time she’s just shifting positions, but it’s no restful sleep.  We are going to increase the melatonin again this week to see if it changes anything in the next few weeks.  If not, we may need to speak to the neurologist again to try another tactic.

And now for some recent pictures of the fun activities we’ve been doing!

Strawberry picking!  Apparently the strawberries were a bit sour this season with all the rain 🙂

Napping during a walk… with her signature ‘leg out to the side’ relaxed position 🙂

Sweet smiles…

Thanks for reading and keeping us in your prayers!  Maddie’s growing up fast and we are so grateful to have the love and support of so many people.