Hi Everyone,

Happy Spring!  Seems like the warm weather has finally made its way here!  Maddie’s going out on walks more often and especially loves the sounds of birds chirping.  She’s also able to eat some meals in our backyard patio and also loves the sound of our neighbor’s wind chimes.

We’ll start off with Maddie’s seizures… the frequency of her single twitches has unfortunately increased (between 5-10 daily).  However, we’re thankful that they’re still just single twitches and not multiple in a row.  Her reaction to these twitches can be quite drastic.  Sometimes she has no response, sometimes she can have a huge smile with laughing and other times she can cry terribly (I mean, full out entire mouth frowns, then crying and ending with loud angry vocalizations… very dramatic this girl!)  We will reach out to our neurologist, whom we’re seeing at the end of this month to see if he’s concerned and whether we need to make any medicinal changes.

Otherwise, we have no other significant medical updates and Maddie has continued to improve with her therapies!  Her sleeping seems to have gotten better as well so thank you for your prayers!  She’s still taking the melatonin so we’ll have to discuss with the doctor to get his thoughts on how long we should continue or whether we need to try and wean her off of it.

From a gross motor perspective, Maddie’s continuing to do well.  She’s standing really well in her stander and keeping her head up most of the time!  See pictures of her playing with a toy while in the stander.

 

 

Her walking seems to be more unpredictable… if I had written this post two weeks ago, I would’ve said she has more bad days than good, but in the past two weeks, she’s walking everyday with multiple steps in a row on her own without too much intervention (e.g., tickling) or encouragement!!  We’re not sure if the lack of consistency might be due to her having outgrown her gait trainer.  We went to the equipment clinic a few times in the past two months and tried out a couple of different brands/designs.  We decided on a different brand and design and are extremely excited about it.  It supports Maddie in a different way and we hope it’ll encourage her to walk more consistently and with better form.  Because Maddie’s at the low end of the size range of the new gait trainer, there’s a ton of room for her to grow which is also a plus!  The new gait trainer will take a couple months to arrive (yes, that’s how long it takes to order medical equipment), but we’ll post pictures then!  Below is her walking on a “good” day in her current gait trainer and keeping her head up!

Maddie’s also doing well with her hands-and-knees therapy exercise.  She’s able to bear weight with both arms as well as occasionally keep her head up!  This was very difficult for her before, but she’s able to tolerate it much better now!

In terms of sitting, she’s also doing better and keeping her head up for longer periods of time.  Yay for continued head and neck control improvement!  Bill built her a little chair last year but since the seizures got worse, we were unable to effectively use it for therapy.  However, recently, we’ve taken it back out and Maddie’s sitting really well in it!  We usually have to provide a little bit of support, but overall, she’s doing a great job keeping her torso and head up!  We also have to give her a toy to munch on, but it keeps her head forward instead of extending backwards.

Maddie’s also become quite the escape artist.  She can manage to get her arm out of her sweaters/PJ’s… any clothing that’s really stretchy 🙂  See what I mean below!

 

 

We’re continuing to encourage Maddie to use her right hand more since she prefers and is stronger on her left side.   We’re starting to see it come out more now and she’s even occasionally bringing items to her mouth (including her hand!)

As mentioned in previous blog posts, Maddie’s ophthalmologist believed she had extreme near sightedness so he prescribed her glasses and we finally ordered and have them now!  We’re having a hard time deciding whether they make a difference, but she doesn’t seem to mind them so we use them while she’s sitting up in her adaptive seat.

 

 

Preschool has been focusing on cause and effect toys for Maddie and having her use switches to make something happen (e.g., fan blow, music play, etc.).  The particular toy shown below is something borrowed from one of the special education classrooms where if you press a button at the bottom, a fan blows into wind chimes (one of the noises that make her smile!)  She really enjoyed playing with it as you can see from the smile on her face!

Continuing with school news, Maddie will start another year of special education preschool this fall so we had her annual special education planning meeting in mid-April.  The team decided to place her on a more permanent version of home-based schooling until she’s ready to go to the classroom setting.  It’s more of an administrative change between the school and Maddie’s pediatrician, not so much from our end.  Additionally, her case manager has assured us that we just have to request a change and Maddie will be able to switch to the classroom setting (given availability).  This decision is in line with what we think is best for Maddie.  Although her seizures are better than last year, they continue to change and she’s still not independent enough that we’re comfortable sending her to school.  One of the big benefits of being in a classroom is a child’s observation of his/her classmates and environment, but Maddie doesn’t have that ability due to her eyesight.  Because of that, it’s hard for us to believe that leaving her there for a few hours every day in a classroom will be more productive than being at home with us practicing 1-on-1 therapy.  That’s just how we currently feel, but as she grows cognitively and has a better grasp of her surroundings, maybe we’ll find that she’s ready for the classroom one day and can reap those environmental benefits.  Another decision made during the meeting is Maddie qualifying for special education summer school for a few weeks in July.  There will be no additional services (OT, PT and vision) during summer school, but they will re-start in the fall.  We’re glad the team also decided to maintain the current level of services!

Our usual blog ending with lots of pictures!!

As mentioned earlier, with the warmer weather, we’re able to bring Maddie outside more!  Below is a picture of us at Frying Pan Park.

Easter Sunday!

Smiles, smiles and more smiles!

 

 

 

 

And to end, her infectious laugh!!