Hi Everyone,

Hope everyone has been enjoying/adjusting to the roller coaster of weather we’ve been going through!  It’s been a while since our last post so there’s a lot to update, so we’ve added a little list to make it easier…

• Maddie’s cold/congestion has caused her to have more severe seizures
• Too many variables to pinpoint what’s helping seizures, but hope it continues
• We’ve transitioned back to PT at Inova, therapist was impressed with progress
• Lots of photos/videos of Maddie’s improvements during therapy
• Encouraging vision therapy updates
• Graduating from Early Intervention means applying for school services
• More in photos: cuddles, birthdays, cuteness with sisters

Seizure and cold/congestion update

In early February, Maddie’s episodes worsened in a way we hadn’t seen before.  She was having seizures that you might imagine/see in the movies with trembling and jerky convulsing.  Although only a few seconds, it was very unsettling since we’ve never seen Maddie had that type of movement before.  The following day, I was able to speak with her neurologist who calmly recommended observing to see if this new type of seizure movement continues and if so, then we could increase her current medication (without even calling him back).  Before the call, I was bracing myself for something like another CT Scan or other test and my first reaction was: “Why was he so calm and non-affected by this change??!!”  However, I had to remind myself that the medicine Maddie takes treats all types of seizures and that she’s on a pretty low dosage.  From the neurologist’s point of view, other children on this medication have more severe seizures and it makes sense to not be overly concerned because there’s nothing else to do.  We observed for two more weeks and the seizures didn’t seem to get better so we increased her medicine to her previous dosage (back to what it was before the decrease in November of last year).

Too many variables to prove cause/effect

After the increase, Maddie had a few good days but then she caught another cold and since then her seizures worsened again, but not as severe as prior to the dosage increase.  The sicknesses really seem to throw a wrench into things because we don’t know how she’s feeling and she can’t tell us either.

The uncertainty of the reason for the change in seizure activity drives me crazy because there are so many factors to consider: sickness, lack of sleep (both during the day and night), her weight to medication ratio (i.e. maybe the ratio has passed the controlled threshold range), therapy over-stimulation (i.e., pushing her to access damaged parts of her brain too often) or some or none or all of these factors.  The good thing is that I have yet to feel medically unsafe as they don’t ever reach the 5 minute mark of having to call 911 or give emergency seizure medication.

As of today, she’s getting over this most recent cold and has started to show more interest in her therapy activities, so we’ll see if the seizures also start to show signs of improvement.

Hospital therapy update

Moving on to better news… since our last post (and prior to Maddie’s episodes worsening), we switched from OT to PT at Inova.  Since last fall, we’ve started a 3-4 month rotation switch between the two types of therapies.  As of a result of the rotations, Maddie’s physical therapist at Inova hadn’t seen her since late September and she was thrilled to see all the progress she had made since then.  It was really a great reminder for me of how much progress she’s made.  It’s easy to get lost in the day-to-day and even month-to-month now that we’re further out from her brain surgery, but even looking back a few months, she has made incredible progress!

Therapy progress photos

Below is her sitting on her favorite bouncy ball during her last session of OT before the switch.  Look at that smirk!

 

 

Below are a few pictures of Maddie showing off her sitting/standing during various PT sessions (at Inova and with Early Intervention PT).  Check out that neck and core control!!

 

 

“Hands and knees” is something we’ve been trying to work on (strengthens core and helps  her hands bear weight) since rehab two summers ago, but recently, she’s finally able to hold the position a little longer!

She’s also been able to tolerate tummy time a little better and lift her head up more!

Maddie’s also continued to practicing walking in her gait trainer, although it’s pretty dependent on her mood, time of day, etc.  We will continue to practice and hope it will become more consistent.  Here’s a picture and video of her walking on a good day!

Click to watch video:  Maddie in her gait trainer

Great vision session with her therapist

In between her recent two colds, Maddie had a few days of normalcy and had an incredible session with her vision therapist.  She was able to repeatedly look at toys and smile as well as bat at them with her right hand (the weaker hand with usually little purposeful movement!!) to make noise/music.  It was amazing to watch and see her cognitive improvement (i.e., understanding cause and effect)!

We are also continuing to use her lightbox in a windowless room in the basement to work on her vision in her stander.  Look at her focus!

Graduating from Early Intervention

Aside from medical and therapy side of things, we’re also in the midst of preparing for a  transition in the fall.  The Early Intervention services we receive from the County only go until Maddie turns three and her birthday is in August (how time flies!).  Families have two options when Early Intervention services expire: (1) sign up for private therapies (2) transition to Fairfax County Public School (FCPS) preschool special education services.  We went with the second option and started the FCPS referral process in January and have already had our initial screening meeting.  Since the meeting, we had an audio evaluation completed and will have an OT/PT evaluation next week.

The audio evaluation was as expected with Maddie responding to speech and specific frequencies within the normal to mild hearing loss range.  The audiologist explained that falling into the mild hearing loss range may just indicate that that’s the decibel level at which sounds peaked Maddie’s interest enough to show a response.  However, she may have heard those sounds at a lower decibel level, but just not have shown a response.

After all the evaluations, we will have an eligibility meeting with FCPS to determine if Maddie qualifies for special education services.  Based on Maddie’s state, it’s unlikely she won’t qualify, but we’re still submitting all paperwork, doctor’s notes, etc. and doing all the evaluations to make a strong case to make sure.  After being considered eligible, then an individualized education plan (IEP) will be developed for Maddie.  At that point, FCPS will determine her placement as well as what additional services she might qualify for (e.g., physical therapy, speech, etc).  Although there are 3 options for placement in FCPS preschool special education, Maddie qualifies for two of them: (1) in-home teacher guidance (~1-2 hrs/week) or (2) non-categorical classroom (~3 hrs/day, 5 days/week).  The in-home option provides one on one care while the classroom has a larger teacher-student ratio (1 teacher + 1 assistant to 8-10 children).  As of right now, Bill and I don’t believe Maddie would benefit much from going into the classroom due to her vision and inability to move around.  Because she’s unable to sit up on her own very steadily, she’ll likely be in her assisted sitting stroller most of the time, and even then, she’s not able to indirectly observe (and learn) from other children.  Aside from that, there are other factors (i.e., germs and getting sick, her seizures, etc.) that prevent us from being comfortable with sending her to a classroom setting on her own.  Only nurses are allowed to accompany children into the classroom and that’s another application process in itself.  However, maybe FCPS can convince us otherwise with what they can do for Maddie in the classroom.  For now, we will focus on getting through eligibility and then provide more updates as we go into IEP planning.  As we go through this process, we pray for wisdom/guidance on preparing a plan for Maddie that most benefits her and her recovery.

Photo gallery: cuddles, birthdays, and cuteness

As always, I’ll end with an accumulation of pictures 🙂

Love seeing her sleep… so calm!

Still loves to suck her thumb (super wide-eyed about something…)!

Strong enough to sit on Bill’s shoulders now!

Bill and I both had birthdays in the past two months and were able to get some smiling pictures with the girls 🙂

Matching sisters!