Hi Everyone,

We’ve had an eventful past couple of weeks with summer ending and fall beginning, so get ready for a long post!  I’ve divided the post into general sections so it’s a little easier to follow:

• Seizures
• Birthday
• Therapies
• Preschool
• Little tidbits: Pooltime, Music

SEIZURES

Unfortunately, since last month’s post, Maddie’s seizures have continued to worsen.  Shortly after the last post, even with the seizures, she had two weeks or so of increased alertness and awareness, which was great for practicing therapies, but recently she’s fallen mostly into a drowsy state with the seizures being longer in duration and comparatively more violent.  We’re not sure if it’s the increase in anti-seizure medication or worsening of the seizures themselves, but this past weekend was the last straw for me with the current medication.  She only drank milk and ate just a few bites of food all of Saturday – this is extremely unusual behavior for Maddie because food is her main motivator and she LOVES mealtimes!  Fortunately, she was a little better Sunday and today, but it’s still concerning.  I spoke to the neurologist today and got the go ahead to decrease and eventually get off of this medication, but we’re going to start another… stay tuned for further updates.

BIRTHDAY

 

The most exciting event since our last post was Maddie turning three in late August!!!  Although she has her good and bad days and her seizures are much worse compared to last year, we can still see the incredible progress she’s made!  And now that we’re able to make her smile with certain sounds, we got some amazing pictures!  See below for photos of her Minnie Tsum Tsum themed party!

Family picture

Opening presents

Enjoying her cake!  Thank you Wegman’s 🙂

One of her birthday gifts- bunny shoes!!!

All the smiles (even though this was after everyone left- haha! go figure 🙂

THERAPIES

Sadly, along with Maddie’s third birthday was also the end of all her in-home therapies (which included PT, vision and feeding/communication) provided by the county’s Early Intervention program.  We miss her therapists dearly, but will see what Fairfax County Public Schools (FCPS) has in store for her!  We’ll come back to that topic later in the post.

As mentioned earlier, we had an amazing 2 weeks of continued alertness where we were able to work on therapies everyday and see her attempt to try things and show her strength!  See below for pictures from PT sessions doing a hands-and-knees exercise that works on all parts of her body.  The toughest part is lifting her head after bearing weight on her legs and arms, while using her core to stay steady, and she DOES!

During those two weeks, we also saw some vision coming back… see below for her staring at her favorite mylar balloon.

The last day activity with our vision teacher was making handprints!!  If you know me at all, you know I’m not really a messy play kind of mom (with neither food nor crafts)… you use utensils during mealtime and you use paint brushes when painting!!  Abby was in daycare when she was younger so she was able to experience messy painting there and I didn’t have to worry about it!  I was super grateful and excited that Maddie got to experience this too because I don’t know if I would’ve brought myself to do it with her 🙂

You can see in the pictures that her left hand moves more at will because it was less cooperative!!  She waved her left hand all over the paper instead of letting the teacher guide her to make a handprint (as she did with her right hand).  Thankfully, our creative therapist turned it into a ladybug!

Unfortunately, Maddie’s walking has been pretty stifled by the increased muscle tone in her right leg.  When she tries to take a step with her right foot, the entire leg stiffens up and gets stuck there, preventing her from bending her leg and actually taking a step.  On a good day, she can still walk in the walker, but most days, she gets stuck and needs a little bending of her leg to help her take that right step.  Abby (of course) also found a motivator for her walking… NUTELLA!

We’ve also started back up with OT at Inova.  There were some scheduling issues so there was a little break between our last rotation of PT and now OT.  She has been doing really well during these sessions and has shown off her purposeful right hand!  We’re working on grasping and holding on to toys with our right hand.

We’re also practicing pressing buttons to activate toys with music!

With Maddie being a little more alert, she’s tried a slew of new foods and has loved them all!  Smoked ribs (thanks to Bill), spaghetti (with ground turkey and zucchini), fish sticks, mac and cheese… more and more foods that the family is eating!  It’s quite exciting for me personally as well so I don’t have to prepare as much separate food 🙂

PRESCHOOL

As mentioned above, Maddie’s therapies provided by the County’s ITC stopped when she turned three and we’ve since transitioned to FCPS.  The wonderful news is that Maddie was approved for homebound services by FCPS!  The approval means that her teacher and specialists (PT, OT and vision) will all come to the home to provide her with educational services.  This is such a blessing for us because we can avoid the risk of her contracting sicknesses from school (thus making her seizures worse), allow her to be in a familiar environment to learn, save the time/process of getting in and out of the house/car, and continue to provide her with the one-on-one care that she currently has without disruption.  She had her first class with her teacher and PT last Friday.  See below for her first day of school pictures!

LITTLE TIDBITS

POOLTIME

Our vision teacher found a pool float she had come by that she thought would work for Maddie due to her lack of full head control.  A lot of baby floats assume that babies already have head control so there’s no support there.  However, this particular one is made in a way where the baby can rest their head on the float, which is perfect for Maddie!  The other great thing was that they had the float in many sizes, the largest of which accommodated Maddie’s weight and height!  Unfortunately, not all the straps were made for the largest size, so we’re unable to let her explore the water by herself and have to hold her to make sure she doesn’t fall through.  However, I’d still say it was a positive experience and she found the water interesting.  We may try with some sort of shaded device above her head next summer to block the sun!

Even though we didn’t try it out in the pool much this summer, it has actually been perfect for tummy time at home!  The firmness and bounciness of the float seems to provide enough feedback for her to feel, which encourages her to pick up her head!

MUSIC

Earlier in the summer in July, Abby attended Vacation Bible School (VBS) and during that week, I often picked up Abby with Maddie and we would play the VBS music cd in the car on the way home.  In usual Abigail fashion, she loudly sang all the songs.  I didn’t think too much of it, but the last week of summer before school started, I had to bring Abby with me to one of Maddie’s OT sessions and she requested VBS songs, so I popped the cd in and I kid you not, at the beginning of each song, Maddie’s face lit up with a huge smile and listened to the songs the whole ride.  It was amazing!!  Sadly, I have tried to recreate the excited reaction/smiles with just me in the car but alas, it’s not the same without Abby!!!

And to end, pictures of sweet Maddie:

Smiles in the patio enjoying the beautiful weather!

Napping with Daddy… total twins…

More sleeping… she’s so peaceful looking, I can’t stop watching her sleep!

Smiles, smiles and more smiles!