Hi Everyone,

It’s been a while since our last post, so get ready for lots of photos!

Since our last post, Maddie has been to a couple of doctor’s appointments:

• pediatrician for her 18 month check-up
• cardiologist for a normal follow-up
• GI doctor for her g-tube removal (yes, you read that right, her g-tube is gone!)

All the appointments went as expected, but I’ll go into some more details about her GI visit, since that’s the most exciting news!  The doctor had no concerns about her weight gain off of the g-tube (she hasn’t used it since last October) so we were cleared to remove it.  Although hard to believe, the surgeon explained when the g-tube was inserted that there’s no procedure to remove the g-tube since the hole can close up on its own (as fast as) within 30 minutes.  So at the doctor’s office, the nurse took out Maddie’s g-tube, put some gauze over the hole and told us to go home and just wait for at least 2 hours before feeding her.  The biggest risk with g-tube removal is extensive leaking due to the hole not closing up, which would then require a minor procedure with stitches.  Maddie’s hole closed up pretty fast because we fed her right at the 2 hour mark and when I changed her gauze the next day, there was barely anything on it.  There hasn’t been any discharge since the first few days, but I still keep gauze over the site to prevent Maddie from scratching at it until it’s fully healed.

From a therapy perspective, we recently added a speech/feeding therapist to our Early Intervention services.  Lucky for us, that means that the therapist comes to our home so we don’t have to worry about taking Maddie out and spending time on the road.  We schedule these sessions during her snack time and since starting, we’ve transitioned Maddie to drinking from a straw to an open cup (still with thickened milk).  She hasn’t caught on fully, but has definitely shown a few sips here and there!  The therapist also recommended long rice crackers so that Maddie can practice feeding herself.  These are easier than the puffs we had been giving her since there’s more to hold on to.

Maddie’s core and neck control have shown quite some improvement over the past few weeks.  She’s able to sit straighter and bring her head to midline more often.  Often times, her head or body will fall down towards her right (weaker) side, but she’s able to correct herself and bring her head or body back up on her own.  As you can probably guess, her biggest motivation is eating, and if not food, her fingers will do!

She will put toys in her mouth, whether it’s on her back or on her side!

She’s spending more time in the stander (30 minutes 1-2x a day).  She’s so comfortable that she can fall asleep in it.  I kid you not, the below picture is actually her falling asleep while in the stander.

We also borrowed a less supported stander from our Early Intervention therapist. Maddie has to work really hard in this stander so she only spends a few minutes at a time, but she’s getting used to it!

She also tried a gate trainer (supported walker) a few weeks ago for the first time!

Our last post mentioned that Maddie’s myoclonic episodes were getting better and they were for quite a while until these past two weeks (since daylights savings).  They’ve become clusters again and she’s starting to cry again during more severe ones.  Seems like her schedule didn’t quite switch with daylights savings and her naps were all over the place so she’s been tired/fussy all day, seemingly making her myoclonus worse.  This week has started off a little better, but we’ll see how the trend goes and if it doesn’t seem to get better, then I’ll reach out to the neurologist.  We ask for prayers for Maddie and wisdom for us.  The good thing is that even with her tiredness and more severe episodes, her overall progress seems to continue with no interruption (she hasn’t regressed with eating, sitting, standing etc), so we’re grateful for that!

As usual, ending with some happy Maddie pictures!