The Motherload of Updates

To My Faithful Readers,

Oh what a summer it has been.  Correction-oh what a spring and summer it has been.  I've had an outline of things to blog about on the inside of my calendar for months-does that count?  Good intentions, always.  Here goes...

April
-During a regular PT session, AJ's physical therapist made the decision to discharge him.  Yes, he's doing that WELL. We were able to use physical therapy to reverse his functional scoliosis.  "Heidi, you did this on your own.  You don't need me anymore!"  Looking back I am a bit relieved decided this during that session.  I think stating something to the idea of "Ok, four more sessions and then I'll be discharging him" would have ripped my heart out.  I've blogged about his PT's awesomeness many times before.  The idea of her not being AJ's PT was completely foreign to me.  I spent the last 10 minutes of his session in complete shock.  That shock continued as we walked to the car.  I closed my door-and bawled.  I just could not believe we were done.  I never saw a tangible end to his physical therapy.  It because part of our life-his PT became part of our family.  It just never occurred me to me, yet here we were.  Almost five years of therapy and he's just suddenly done.  Never fear, his therapist did not get off easy.  I still sent her regular emails and questions as needed.  {Secretly she loves it!}

-AJ had a follow-up at the dental clinic.  He was diagnosed with enamel hypoplasia.  The enamel on his teeth did not develop correctly.  It is hard, but thin and is not enough.  This is due to his prematurity, low birth weight, early malnutrition, and most likely is hereditary. What does this mean?  We need to brush his teeth as much as we can.  Its a good thing he loves brushing his teeth! His overbite is at 10% which isn't too bad for a kid that still finds an immense amount of comfort in his thumb.  He's pretty good about it during the day now, but at night that what he goes too.  He's still young enough that as his big boy teeth come in they will self-correct.

-AJ started his hippotherapy (horse riding therapy) back up again at the end of April.  His face was priceless as we pulled into the driveway.  This kid has got a memory like his momma.  At least a visual memory, that is.  He's once again riding the pony, Chubbs.  It is amazing to see how much he has grown and how different he looks on the horse.  During his sessions he often rotates between sitting forward and backward on the horse.  The change in his posture is remarkable when he's backwards.   This is because he is sitting on the horse's withers (sort of like shoulder blades) which gently force him to sit upright and hold his posture.  Horses are awesome.  His riding center added some new fun things to the arena this year.  AJ really like the hanging pool noodles that they walk through.  It's like a therapy car wash.

May
-My mom and I went on a weekend getaway to Lake Geneva.  Oh how I love me some girlie time.  We shopped, drank wine, ate yummy food, and spent some awesome mother-daughter time together.

-I toured a school here in the area strictly for special needs children.  I had gone into the tour with the idea that perhaps it would be appropriate for AJ someday.  It is most certainly not appropriate for him.  While I have no desire to discredit the school, my ideas for my son's education are very different from the environment I saw. Then it hit me-perhaps my purpose for touring this school was not to see it as an option for AJ, but to realize how well he truly is doing in his current environment.  Sometimes it takes some outside perspective to grasp what you really need to know.  I ran into a TOD that was part of AJ's initial IEP team.  It's been years since I've seen her but she remembered me and of course AJ.  That little boy touches more people than I ever thought possible.

-We had AJ's IEP meeting in May.  Each year the group gets larger and the space we need changes.  This time, we had 16 people with four tables.  The plan we have in place for this next year was developed from last year's confusion.  I suppose that is the best way to phrase that.  His kindergarten year was rough.  We are using what we learned from last year to make this year much more fluid for both AJ and his staff.  AJ will be in 1st grade in just 3 weeks.  Whoa.  He'll attend school for 6 hours a day and continue receiving the following services: Special Education, Teacher of the Deaf, Auditory Therapy, Speech Therapy, Physical Therapy, Occupational Therapy, Specially Designed Physical Education, and one-on-one assistance.

-In addition to AJ's IEP, we formulated a FBA and FBP.  No, I did not misspell FBI.  A Functional Behavior Assessment was drawn up, from which we drafted a Function Behavior Plan.  AJ had quite a few aggressive behaviors at school in the last few months.  As with anything AJ, his reasoning for behavior is not based solely on one thing.  The staff has struggled with him to keep his implants on, becoming extremely aggressive when they attempt to get him all together again. He was aggressive during his bathroom routine.  Behaviors included biting, graded scratching, and pinching.  Many things with AJ are a mystery or guessing game.  The question I dread, why is he doing that?  I feel like I am supposed to have the exact answer, and I don't.  It is definitely behavior, but also communicating frustration, anger, etc.  The more you fight him, the more he fights back and wants the attention.  It doesn't matter if its positive or negative.  We are squeak toys.  I'll get to the squeak toys later.  The FBP already needs to be changed.  We'll be working on that as we begin the school year.

-AJ had another emc3 (Every Move Counts, Clicks, and Chats) evaluation in May.  This is the first time an evaluation has been repeated on a student, so the fantastic special education teacher that consults on AJ's team was thrilled to do a follow-up evaluation.  AJ did well throughout the evaluation, which we were able to see via a video of the session.  Most of his reactions were congruent with his 2010 evaluation.  The one section of the evaluation that stood out-Olfactory.  AJ's response to lavender was mind-blowing.  It calms him immediately.  We are excited to use this evaluation, in addition to the knowledge we gathered for last year to form a functional day of school for him.

-AJ saw his physical medicine doctor in late May.  This is the first time in a while that we've seen her and haven't done botox.  He didn't need it.  She asked for a follow-up in 3 months, so we will see her this month (August).  AJ has had his night splint for a while now and will not sleep with it on.  Correction-would not sleep with it on.  She suggested we have him wear it during dinner, tv time, and other periods of down time, just to give him a good stretch.  He's been doing very well with it.  The splint keeps his leg/foot at a 90 degree angle and is hinged so we can decrease the angle to create more of a stretch.

-AJ had another change in his cochlear implant mapping.  He struggles wearing them bilaterally.  At this time, he didn't fight me when I put on his implants-but he fought everyone else on the planet.

-We celebrated AJ's 3rd Hearing Birthday!!!

-AJ had a slew of appointments at the Children's Development Center.  We had initially wanted to have him tested for autism and Angelman's syndrome.  This effort turned into the "Lexus" of workups and included individual evaluations from a development specialist, psychologist, and Speech & Language Pathologist.  These evaluations were spread out over the month of May.  I've never had reports sent to me so fast.  I love that.  In mid-June we met as a whole team. The following things were determined:
AJ is a calm, easy going child
AJ does not have autism
AJ does not have Angelman's syndrome and was already tested for it in a genetics test we did a few years ago
AJ had intra-uterine growth retardation.  Meaning, his birth-mother's pregnancy started off on the wrong foot from the get-go.  Add that to the lack of oxygen at birth and you have an AJ.  The information given to us in his referral, estimated 4-6 weeks premature, is correct.  
AJ's cognitive level is at a 2 year old level.
AJ's language level is at 3-6 months for expressive and 6-9 months for receptive
AJ very likely has speech and language disorders underneath everything else he has going on
AJ is ready to take it to the next level with his learning skills
AJ's behaviors are to get our attention.  We are the squeak toys.  He does something, we react.  Repeat, repeat, repeat.  The behavior should be ignored.
AJ is not in a plateau, and there is no reason to think he will.  His brain is moving at its own pace.
If AJ's cognitive ability is at 2 years of age, I'm sure this has added to his struggles at school.  What two year old goes to school all day?
AJ's brain and auditory memory may not interpret the information he's given through his cochlear implants.
AJ's difficulty at having "all systems go" prevents him from accessing the world as you and I do.
AJ is a special needs child, and will remain a special needs child. 

-AJ lost his first tooth!  He lost the bottom front right tooth.  It was wiggly for a while, but then all of a sudden my mom noticed it missing as she was rolling him on the ball!  We never did find it.  My assumption is that he swallowed it.

-I received a call from the PE teacher one afternoon regarding AJ.  He had been nominated for a scholarship award.  A fellow Mom nominated AJ for the S.J.C Scholarship.  S.J.C. was a teacher who taught at AJ's school for many years who passed a few years ago.  His family setup a scholarship fund in his name, just as he had requested.  Each year this award is handed out to a student with exceptional needs.  This year, AJ was chosen.  He received $250 to use toward whatever therapies or equipment AJ needs.  We dedicated these funds to his hippotherapy.  I had the pleasure of meeting S.J.C.'s brother and shared AJ's full-story with him.  We are so grateful for the C family's generosity.  I'm anxious to see AJ's name added to the plaque that hangs in the front entrance of the school.  What an amazing gift for our kiddo.

June
-Through a chain of incredible events and meeting some incredible people, I've been given an amazing opportunity.  I was asked to be a District Parent Liaison for our school district.  I cannot tell you how excited I am about this!  This fall will be jam-packed full of trainings, but I am so looking forward to it.  Currently there is one liaison for our district..I just so happen to know her.  Well.   I'm excited to partner with her...and lighten her load! I'll be helping families advocate for their children!  What could be better than that!!

-AJ graduated Kindergarten.  Oh my cuteness.  School had a cute little graduation ceremony and a song presentation by the kids.  It's so amazing to watch them all grow each year.  One of AJ's little lady friends helped him "cross the bridge" from kindergarten to 1st grade.  It was adorable.  And, as it turns out-she's adopted from Guatemala too.  It's a small world people.

-We had a family reunion of sorts at a lake resort Jeremy and his family used to go to multiple times a year.  It was a great weekend and celebrated the lives of those in his family that we've lost.  AJ fell in love with the lake and was not too disappointed with the playground right across from our cottage.

-We celebrated out 11th wedding anniversary!

-A while ago AJ's pediatrician suggested we see a dermatologist to check out the scarring on the back of his head.  As AJ grows, we've become concerned as to whether it will "stretch" with his head growth or who knows what else might happen to it. So, we added a dermatologist to AJ's repertoire of providers.  I've always been mighty curious as to what the little bumps are on his legs.  Something only a mom would notice, but still.  He did have scabies when he was at the orphanage (I know, ewww) so I thought it was slight scarring from that.  The dermatologist could not determine what caused the scar on his head.  She was however concerned about whether or not a foreign matter was under the skin as the scar is very thick.  She took a photo to consult with her colleagues and then requested an MRI.  Here we go with the "He can't have an MRI because he has cochlear implants" speech.  She was very understanding and requested that we have the results of his original MRI and CT scans sent to her.  No one knows what the scar is.  His MRI showed no foreign matter under the scar.   All good news right?  She referred us to the skin surgeon for a consult.

When she looked at his legs, she told me it was not from scabies.  AJ was diagnosed with keratosis pilaris.  The little bumps are due to clogged hair follicles.  You can read more on the condition by clicking above.  While this is common, AJ seemed rather irritated with his skin and scratched at times.  His skin gets dry very quickly.  He has it mostly on his upper arms, his thighs, and his legs.  We switched to FREE products, meaning nothing with fragrance or dyes, etc.  Laundry detergent, dryer sheets, lotion, etc.  WHAT A DIFFERENCE it has made.  It has made a huge difference for our little guy.  I'm so relieved.

-AJ's ESY (summer school) staff was trained on his iPad and did a fantastic job during his 6 weeks of summer school.  AJ really did well.  Not only do I attribute that to his rock star staff, but also to the quiet, distraction-free environment he was learning in.

-My mom moved closer to us in June.  Oh how we love having her closer!  She's truly been a blessing to our family.  I love that can just pop over and not drive a half hour.  It's great!

-AJ turned 6 at the end of June. SIX.  SEIS.  OLD.  We had a Route 66 themed party for him.  I usually try to think of something AJ enjoys.  Since he can't tell me what he'd like and doesn't understand the concept of birthdays yet, I think about what he loves to do, what he likes to play with, etc.  He loves car rides, so Route 66 seemed perfect!  In place of gifts for AJ, we asked guests to bring a baby item as a donation for layettes that a local non-profit puts together for expectant mothers.  We were so excited and grateful for every one's generosity!  Lots and lots of new moms and their babies will be well-stocked!!

-We put up a small (just less than 3 foot) pool in our yard.  Oh what a good idea! No, I'm serious. AJ absolutely loves it.  In fact, he learned to hold his breath under water.  He can hold it for 10 seconds.  This kid is going to be in the Special Olympics for swimming.  I am so not kidding.  The local Y where we hold a membership is quite a drive from here.  It also makes me uncomfortable that they've had several cases of pertussis and whooping cough there in recent months.  We're looking at other options for AJ to continue swimming in the colder months.  Water does wonders for him!

-Jeremy was accepted in the University of Cinncinati's Family Nurse Practioner program!  He'll be starting in January and is super excited!  He's been out of school for 17 months so he's chompin' at the bit get back into the groove.  By the way, its an online program with clinicals locally.  We are not moving to Ohio.  Nuh uh.

July
-Jeremy had a chance to sneak away to Oshkosh, Wisconsin for Lifest 2012.  It was an incredible experience.  Lifest is a Christian music festival.  They had a grandstand and other smaller stages in the biggest park I've ever seen.  We took out our folding chairs and sat and listened to music at the grandstand most of the days.  At night we made a habit of going to one of the tents for the late acts.  We had a fabulous time.  Hearing the first few notes of "I Will Be Here" by Steven Curtis Chapman was amazing.  Two friends of mine sang that song at our wedding.  Jeremy and I danced in the middle of the aisle.  Forget that there were 10,000 people sitting around us. I bawled.  Uncontrollably.  Therefore, confusing my husband-to him crying means you are sad.  I was not sad, not in the least.  My mind became a Rolodex of memories of our life together.  We've been together 15 years.  That is a lonnnng time.  I was so proud of what we've become and how we have not only survived, but thrived.  We'll definitely be going again next year.

August
-We took a trip to Iowa to visit Jeremy's parents.  AJ experienced cotton candy for the first time, and went on his first real ride.  Let me tell you, the Berry Go Round is nothing like the Tilt o' Whirl we had growing up!  AJ was neutral about the ride, which really surprised me.  We were just excited that he was tall enough this year to ride a ride.

-AJ was finally granted speech (feeding) therapy visits as well as occupational therapy.  We have 12 sessions to squeeze into the remaining of August.  Ufta!  Feeding wise AJ has regressed a bit.  He wants to claw everything and chooses not to use his spoon or fork.  Because his cerebral palsy affects his left side, you would think the left side of his mouth would be weak also.  Not so.  The right side of his mouth is weak, where the left is his strong side.  The body is a mysterious thing.  He chooses to place things with his fingers and move them from side to side with his fingers vs. actually using his tongue to manipulate the foods.  He's craving oral stimulation constantly.  We've introduced harder items to him, such as the P chew, harder versions of thera-tubing, and theraband.  His z-vibe broke and I'm anxious to get his new one.  So much of his organization comes from oral awareness.

-AJ's been having gihugic (I love cooky words) growth spurts throughout the summer.  I felt the need to schedule a "check-in" with his physical therapist.  She said he looks really good, is fully mobile, and is self-correcting.  Music to my ears.  His left foot is turning in considerably, but not from his hip like it usually does.  He's turning in from his tibia down.  We're taping his foot with Kinescio tape.  All the years we've used Kinescio, we've never taped his foot with it, so I wasn't sure how to do it.  What a difference it makes.  I also fixed his left shoe, which has Velcro that doesn't get along with his AFO orthotic.  It constantly kept coming loose.  I attached some extra Velcro, one sticky and one soft strip, to the existing Velcro strap on the shoe and presto!  It worked like a charm.  Because he wears orthotics, he looses out on the natural sensory input your foot has when you walk.  Ok, to keep his foot straight and maintain balance, we take away some sensory.  Such is life.  Back to his PT's thoughts, she literally looked at me and said, "Why are you here?  He's doing fantastic.  And I am not taking him back on my service."  Ok then.  She calmed my fears, as always.  In order to keep avoiding surgery, which is always our goal, we are doing soft tissue massage on his calf muscles and his foot especially.  His plantar fascia is very active. We also do the foot wiggle, which consists of holding the sides of his foot and, wiggling rapidly.

-We had a playset built in our yard for the big boy himself.  The look on his face when he saw it was PRICELESS.  We added a rock climbing ramp to provide nature physical therapy.  We are sneaky parents like that.  He's going down the slide himself, which gets quite a bit of speed!  He climbs up and down the ladder on his own and balances himself on the swings like a pro.  He's an amazing little man.  Having the set in our yard also helps keep him occupied.  Since he's not the kid who will watch a tv show or sit and read and pretend play, this gives him something to focus on AND enjoy.  We love it!

-I'm still taking courses to earn my BA in English.  I'm 15 classes into my program.  My original date of graduation was September 2013, but now it is December 2013.  I had to add two classes to my schedule to fulfill the program requirements.  I had to get to a certain point of the program to choose the classes I wanted to take.  Summer has proved to be quite difficult trying to balance having AJ home and doing course work. Steady wins the race, right?

-AJ had a petit mal seizure last week after waking up from school.  While my intial "in the moment" reactions to them are improving (which-I'm not sure if that is a good or bad thing) the after effect is what drains me.  We went to a concert that night and I was just drained.  Having fun?  Sure.  But if you looked at me I looked bored out my gourd.  All in all, he's been doing well.  He does have clusters of absent seizures, and I think he knows when they are coming on.  Sometimes he's upset about it, other times he just comes back like flipping a switch. His little sad face is so heartbreaking.  Buddy, if I could make them go away, I would.  Believe me.

-AJ qualified for Family Support Program funds again this year.  I made our home study visit appointment this week and am preparing everything we'll need to submit.  We always seem to qualify when changes are about to be made.  I'm not sure how we do that.  Our plan is to have sidewalk in front of the house redone and widened a bit.  New regulations regarding what the program will pay for are coming down from the state level.  Our coordinator advised us to gather as much information as possible to "prove" that AJ needs this walkway.  Despite this, we are ever grateful that he qualified for funding again.

-AJ continues to use his iPad for communication.  Two weeks ago we had his iPad in church and he kept hitting the home button to exit from the menu or app that was up and clearly he didn't care for.  Jeremy and I were thrilled!  He shocked me when we were in Iowa by turning it on with the home button all by himself!! Wahoo!  We have specific goals in his IEP related to his iPad and he just aced one of them!  During summer school AJ was asked to listen to a musical instrument and then choose from three images of the instruments on his iPad.  This little boy amazes me.

The SLP that evaluated him at the development center suggested using ABA flash card apps.  AJ learns best by rote practice and let me tell you, these apps are awesome.  There are different categories, such as emotions, foods, sports, actions, vehicles, animals, etc.  She also gave me a mega list of apps that she a colleague put together, as well as a list the center hands out.  One of these days I will dedicate a post to the 'ol iPad and all its awesomeness.

-A friend told me about the COOLEST APP EVER.  Ok, maybe not the coolest, but it sure is informative for Jeremy and I as non-cochlear implant users.  There are several apps that have a dB meter.  Yes, I know this is awesome.  The app is Decibel 10.  I am seriously disturbed by how loud our world is.  Despite this, I find this app amazingly helpful.  AJ has been having a seriously hard time with his cochlear implants.  This app is helping immensely as I can identify what range of sound bothers him and what he can tolerate.  I'm anxious to take it to school and use the app in the school environment.

-Jeremy and I participated in our church's Believer's Baptism in the lake.  What.An.Incredible.Experience.  I really don't have words other than it was an amazing experience and I am so grateful we made the decision to be baptized.

-I've been participating in a women's bible study.  The study is appropriately called "Stuck".  The ladies in my group are all amazing women.  Next week is our last week and I am incredibly sad that we won't be meeting anymore.  We've followed this study and I've become a new woman because of it.  Truly. As much as I am looking forward to meeting other peeps with the fall groups form, I am sad.  Each week we've done a "Chica of the Week".  Each of us writes a prayer request and we pick cards from a basket.  You are to encourage and pray for your chica that week.  I absolutely love this idea.  I love sending encouragement and well wishes to my chica, and love receiving prayers and encouragement from whomever has me as their chica that week.  Sigh.  What I learned?  I am not alone in my place of stuck.

-AJ is scheduled for a follow-up with his physical medicine doctor, a cochlear implant mapping, and an appt with his neurolgist within the next two weeks.  He is also scheduled for a genetics consult and a consult with the skin surgeon regarding his head scar.

Is that it?  I think so.  All in all, AJ is doing great.  Thanks for checking in here on the 'ol blog.  She won't be neglected anymore.  Promise.  Ok, I promise I'll try.

Helpless

Tonight, after Jeremy gave AJ a bath and he was snuggled in his bed, I went in his room to kiss him goodnight.

It was then that I recognized that stare.  The seizure stare.  I waited, and saw the drool.  I dropped to the floor and watched my little boy stare into space and held his hand.  This one was about a minute.  A minute that felt like an eternity.  I sat and cried silent tears while I watched my little boy seize.  I watched him intensely waiting for my little boy to come back.  And he did.  With a big smile and a hug.  Thank God.

Tonight is one of those nights that I feel so helpless.  We do everything we can for AJ, but this is one area we simply cannot do anything for.

No mother should ever have to watch their child suffer-in any way shape or form.  Watching my child seize is torture to me.  Pure torture.  I try my best to be strong for him and comfort him.  Even if he's still, I want him to know I'm there.  His seizure activity has been off and on recently.  I really hope it goes off for a while.  

I still don't understand why AJ's epilepsy is the hardest thing for me to handle.  Of all the things he has going on, I can't get over the epilepsy.  I worry about more brain damage.  Sometimes, I even get scared that some day the seizures will be uncontrollable and will take him from us.  Tomorrow, I will call his neurologist's office.  To which the nurse will talk to me for a ridiculously long amount of time and talk me through everything epilepsy.  It will probably lead to another visit, a blood draw, and maybe another EEG.  All of which I hate.  Perhaps it won't.  She'll remind me that breakthrough seizures do happen.  They are controlled most of the time, but sometimes one slips through.  Was he drowsy?  Yes.  Then you know the most common time for seizures is drowsiness and during sleep.  Yes, yes I know. Is he growing?  Yes, like a weed.  Well, then?....  I know, I know.  

I'll be checking on him a lot tonight and am already anxious for his amazing morning smile.

Silver Lining

Well, yesterday was interesting.  

He has repeated the same pattern that happened last weekend on Tuesday, so I let him sleep until he woke himself and then took him to school.  Yesterday, he was in a deep sleep again when I opened his door.  I gotta say, I'm missing the "beep, beep, beep...vroom, vroom, vrooms" in the morning.  It is so very rare for him to be that deep in sleep at that time in the morning.  

For a solid week we have been talking with AJ's school team about the observation by one the district's special education gurus.  Which was, of course, scheduled for yesterday.  So, I felt it important to wake him.  He did great during breakfast and getting dressed, but was a bit "off" in the car. I figured he was just tired. As I drove up to school he looked like he was drifting off to sleep.  Ok, so he's really tired.  He was wide-eyed when we parked and I dropped him off as usual.

A few minutes after I arrived home the staff called me, describing a seizure.  "...annnnnnnd he just fell asleep," she said.    Ok, let him sleep. I called the neurologist office and waited for a call back.  I drove up to school, honestly, to check on the staff.  I knew if he was sleeping, he'd wake up refreshed.  Sounds insensitive, doesn't it.  Such is the life of a special needs mother-sometimes.

The silver lining lies in these events:
+ Upon arriving at school I popped in to talk to the health room nurse.  I could tell by her body language that what happened did not cause the staff to panic.

+AJ actually having the seizure at school helps the staff recognize symptoms.  

+ While he was sleeping, two of his aides sat on the floor and navigated AJ's iPad, going through things that a typical school day does not allow time for.
+ I had the opportunity to chat about the seizure in detail with his school team.
+ I had the opportunity to sit on the floor and chat with the special education guru for over an hour, with various members of his school  team filtering in and out of our conversation.
+There truly could not have been a better day for the guru to be observing AJ.  

While I certainly would not like to repeat yesterdays, I am thankful for the silver lining.

First Day Back

(Tuesday)

Today was AJ’s first day back at school following Christmas break.  I woke up victorious, having gotten a full night’s sleep for the first time in weeks. AJ chose today as the first day to sleep in the last two weeks.  Each morning we wake to “beep, beep, beep, doo doo doo, doo, spinny thing, vroom vroom”…you get the idea.  Because AJ needs his seizure medication around the same time each morning, there is no more true sleeping in for this family.  Unless… Jer and I are in Hawaii. There was lots of sleeping in there.  Sigh.

Anywho, I had to wake him, which was rather uneventful.  He had a few seizures during breakfast and maybe two more after breakfast-or what I’d call his attempt to be a bird.  His platform swing…wait.  Did I tell you we put it up?  And he loves it?  He does.  The bolt came out of the joist on New Year’s Eve. We’ve had a bit of a sad boy, but then we pull out his ginormous new body ball (yoga ball) and he’s giggly again.  The swing should be up by this evening. 

Moving forward again…usually we swing after getting dressed, as he knows that’s the next thing in our routine.  Sadly I told him no we couldn’t swing and signed broke while I said it was broken.  When saying, “Do you want you ball?”  I received a big smile and manic signing of please occurred.  I love that little guy.

So roll on the ball we did until it was time to go.  He stopped in the middle of the driveway and starred at me whining a bit.  Hm.  Odd.  Lightbulb! He’s got to go potty.  Sure enough, that’s what it was.  This is what makes things so frustrating at times as he knows what in blue blazes is going on and needs a way to tell us.  I know, you say whip out the iPad.  Well, we’re learning quickly that there is no perfect system (other than saying aloud what you need, honestly) to this.  I knew what he needed, so we went.

We arrived at school and he was tired, but excited to be there.  I spent my morning listening to the pleasant hum of the humidifier while I did homework, sent out 435 emails and making 1,765 phone calls.  It was one of those days.

When I picked him up from school he was sleeping, and slept a good 2.5 hours.  He woke up happy and bubbly.  Happy and bubbly until 11:30pm.  We swung A LOT and he ate A LOT.  All was normal.

I often find myself going over days like this over and over in my head to try and see if there was something I could have done different.  I decided that if I find him sleeping that hard again, I’ll allow him to sleep until the latest time possible and take him in to school late.  We’ll play it by ear. Sleep is very important to kids with epilepsy-it certainly is for our little dude.

Thanking My Lucky Stars

AJ made another trip to the ER yesterday.  I'm not really sure what the combination was at any given time, but it was a long seizure together with gastroenteritis (stomach bug).  The two things that made me freak?  I've never seen him vomit with a seizure before and on the first attempt to using his Diastat pen, it was broken.   He's fine.  I know, how can I just say he's fine?

Well, first we had an amazing team at the ER.  Not that we have bad ones, because we never have.  But, this was a good crew.

Second, a Flight for Life case came rolling in while we were there.

And I just can't shake these thoughts out of my mind.

Talk about perspective.

AJ had rolled over to take an impromptu nap, in a foreign place, so I knew he was tired.  I covered him up him up and chatted with my Mom.  As we sat there, someone whisked in front of our room, pulled the curtain across the glass doors as far as it would go and closed our glass doors entirely.  It didn't take long for me to spot the Flight for Life jumpsuits and the yellow stretcher.  There was a small child on it, with an ambu bag and chest compressions being done as they were rolling by.

In that moment, a sense of guilt rolled over me.  How dare I be so freaked out, when my child is sleeping so peacefully and this child is in the next room with 50 people trying to save his/her life.  Yes,  I know I had every right to be freaking out internally, but that type of thing really puts you in perspective.

Let me say that the staff was extremely professional and the scene was nothing like the chaos shown on TV.  They did a great job of keeping everyone calm and "in the dark" if you will.

A few hours later I made my way to the restroom (thinking I really should not know exactly where the restroom is in the ER) and of course, my curiousity was in full force.  There was one pair of shoes in that room, sticking out from the curtain.  Hm.  My mind immediately went to the worst case scenario.

The staff kept coming in apologizing profusely; I didn't care that things were taking longer.  I bit my tongue from asking about the room next store because I knew they wouldn't tell me.

As we left, the room was completely empty, lights off.  The room had been turned over for another use; ready and waiting.

Did the child survive? Where was he or she?  Was the child in surgery?  I've been thinking about this child, his or her family all night.  How unfair life often seems to Jeremy and I in this journey of special needs parenting.  How often we become frustrated that no one "gets it".  All of that disappeared in an instant and I felt incredibly blessed and guilty at the same time that my child was sleeping during his ER visit and was back here at home in his bed.  He was fine.

I just read a post on another blog about a little boy who passed in the middle of the night from a seizure.  He was 4.  FOUR.  This seizure stuff is serious stuff people.  And yes, it scares the crap out of me.  The timing of this post was not the greatest, but who am I to complain?

I'm still thinking about that Flight for Life child, and saying prayers that he or she is well, wherever they might be, and thanking my lucky stars that my child is cooing in his bed so early in the morning.

NOW

Well...

I considered an array of possibilities for the title of this post.  And then I read a post on another blog, and stole the powerful three-letter word: NOW.

But for right now (pun intended) lets backtrack to yesterday...

I woke AJ up at 5am.  He was up having a private VIP:M (Very Important Person: Myself) Party in his room for a few hours.  Giggling and laughing like it was 2pm not 2am. 

I had to keep him awake until 10am, which was when he has his EEG.  His neurologists office just happened to have an EEG opening and time for his neurologist to see him...instead of two weeks from now. They cannot sedate, put under, do anything to kids to make them comatose during this test.  Which would be so lovely. Medications will give false results on the EEG.  So they sleep deprive children instead.  Not so lovely. 

I had thought to have him fall asleep in the car just as we pulled in (instead I was singing, pulling on his leg and trying like the dickens to keep him awake).  Thank goodness I did not have him fall asleep. Our EEG experience began with a beyond wonderful EEG technician.  She measure AJ's head with a fabric tape measure and make red marks on his head with a fun red pencil.  Twenty minutes later, after she had colored on his head, placed the electrodes and wrapped his head with gauze, the EEG began.  In this wonderful technician's many years of experience, she had never seen a child fight as much as AJ did.  Most kids give in after the electrodes are on and fall asleep just in time for the EEG.  Nooooot AJ. 

He screamed bloody murder for over an hour and a half.  Which complete unnerved me.  I'm used to his crying.  Believe me. But this blood curdling screaming gets to a person, especially as you are trying to keep his arms down and he's kicking you in the chest/neck, and eyeballs.  AJ's tone makes him extremely strong when he's upset and the whole "hold me down while this lady does weird things to my head" sent him into a total sensory overload.  I cried a bit while I struggled to hold him down-very unsuccessfully might I add. He was not able to have his implants on during the test, so we were in silent land, which also bothered me.  I had no way, other than blowing softly on his face and limbs, to comfort him.  Not only that, but the fact that he doesn't understand "this lady isn't hurting you, she's just putting stickers on your head, now go to sleep" is upsetting. 

He did give us about 2 minutes of drowsy-laying and doing nothing toward the end, where she was able to get some good reading.  The end of test featured a strobe light, which AJ was thrilled with.  If she would have had the light going the whole time, he would have been perfect. 

When we left, AJ had a huge grin on his face.  He crashed in the car, just as I pulled in a drive-thru to get him some lunch.  We returned to the clinic to see his neurologist and review his EEG results. AJ slept through the entire appointment, the whole car ride home, and finished his nap in his own bed.  I wish I could have slept through the appointment....

AJ was diagnosed with Partial Epilepsy. 

Partial because his EEG showed abnormalities on the right side of his brain, not both.  Apparently, the abnormalities began almost immediately after the EEG test started.  Great.

As his neurologist spoke, AJ's weight (he was sleeping on me) seemed to get heavier and heavier.  It was harder to breath.  And the tears began.  I quickly wiped them, hoping his neuro wouldn't look up.  And he did.  He has such a kind spirit, his kindness made my tear ducts smile and produce more tears. 

While he was typing away, he asked how AJ's language was coming along.  More tears.  I had asked him via a phone message exactly where AJ's brain injury (CP) was according to the MRI he had done just two months after we brought him home.  I asked him for more details as to exactly where everything happened, to which he pulled out this awesome 3-D chart and showed me how my kids brain is messed up.

I was thrilled.  To know where the input, output, understand of language and all of that just amazed me.  It further led to the never-ending puzzle as to why AJ is not talking.  But let save that that for another post and stick to the epilepsy stuff.

AJ's seizure last week (yes, NOW it is regarded as an actual seizure) was the first that we noticed.  His neurologist's thought is that per the massive abnormal activity on AJ's EEG, he's had other seizures that have been "clinically silent".  His seizures may have been and will mostly be staring off into space, licking his lips, weird tongue movements (I'm thinking lizard like-ewwwwww). 

Which made me pause and begin thinking about every single weird thing AJ has done since I've known him. 

And then I stopped.  Because his neurologist started telling me important things that I needed to pay attention to.  Like we are starting him on the anti-seizure medication Keppra and will have Diastat to use in an emergency situation...like if he ever has a seizure that lasts more than 5 minutes.

I left the appointment full of information, exhausted, and started blubbering as I was carrying my newly epileptic baby out of the clinic.  I put AJ in the car and bawled all the way home.  By the time I got home I was able to make phone calls without crying, which is my usual pattern, by the way.  Freak out, cry, cry, cry some more, snap out of it and move on to the fact, talk about other things, collapse in exhaustion.  I spoke to a new friend, who is very familiar with seizures, etc.  Our conversation calmed me and turned my attention to other things other than the fact my kid was just diagnosed with yet another "thing". My Mom brought dinner over for Jer and I and stayed with me until it was time for me to crawl in bed.  Thanks Mom!

AJ's school staff was absolutely wonderful this morning.  When I walked in this greeted me with a "Mommy Hug" and we chatted about anything specific I wanted them to do.  My directions: proceed as usual.   Of course I talked to the school nurse, filled out required paperwork, gave her AJ's new emergency medication and spent most of the morning on the phone, but that all comes with the territory and I was not afraid of it.  I had already spent too many seconds in the neuro's office trying to analyze every weird thing AJ has ever done.  Was it a seizure?  I don't know.  And I can't care.  I just can't.  Because I can't change it. 

I was (somehow) smart enough to figure out that AJ was not acting normal in the car last week.  That led to us finding out he's a kid that has seizures.  Let's treat the seizures with anti-seizure meds and keep an extra eye on him. Not a panicky eye.  Just an extra one.  Wouldn't that be nice if Mom's came with multiple eyes (in addition to the ones in the back of our heads)??

Today was our first real "regular" day.  A normal day in what I've deemed our "crazy normal".  I looked forward to getting up, taking AJ to school, having time to myself (which I filled with Starbucks and a bit of retail therapy), picking AJ up, coming home, eating lunch, jetting off to a PT/OT co-treatment, stopping at the store, and coming home.  It did my soul some good.

I hope this post does not come across as me stating I am honkey-doorey with my kid having seizures. Because I am not. It is NOT COOL. We don't need any more excitement over here. Trust me. But, what else am I supposed to do?  What are we supposed to do? 

How does one handle their child being deaf, having cerebral palsy, developmental delays, and now epilepsy, and muddling through her husband being diagnosed with MS?  I don't know.  How do I begin to digest whats happening with Jeremy while I need to support him and at the same time I need his support with whats going on with AJ?  How do I feel about losing my sitter because she accepted an awesome nursing position?  Devastated and ecstatic at the same time.  How do I feel about trying to sell our house in this market with everything else going on?  Freaked out, but I know it must be done.  How am I dealing with all this?  I have no idea. But I'm about to find out. 

While on the phone last night, I realized that while I have tried to cut a lot of time-wasters from my life, all of the issues in our life have become time-wasters. I'm afraid of so many things I've lost count.  Afraid and full of fear that more things will keep happening.  And while I've been struggling with this, yesterday happened.  More bad things.  But bad things don't mean I stop living.  Bad things put you into a survival mode.  I think I've been in survival mode way too long.  I need to live, not just survive.  We as a family need to live, not just survive.  I haven't figured out how, but its on my list of things I'm determined to do. 

I'm so worried about what might happen I'm not living in the NOW.  AJ's here now, and I'm so blessed to be his mother.  This morning his smiles and giggles all the way to school gave me such joy.   Despite all of his challenges in his short life so far, he continues to be my smiling, giggling, handsome litle man.  I'm wasting time.  Everything seemed to be clearer and more vibrant today (it reminded me of the Twilight book Breaking Dawn when Bella wakes up as a vampire and describes how everything is so clear and crisp).  I noticed things I hadn't before and appreciated those in my life so much more.  It felt a little weird, but I welcomed the fresh outlook.   While I was in a craft store, they played the song "Cherish" by Kool & The Gang.  While I would normally call the song cheesy and giggle that it was on, the lyrics spoke to me. 

And then I read the most recent post on No Peas which ended with this quote:

There is no time other than now. We are not, contrary to what we think, "going" anywhere. It will never be more rich in some other moment than in this one. Although we may imagine that some future moment will be more pleasant, or less, than this one, we can't really know. But whatever the future brings, it will not be what you expect, or what you think, and when it comes, it will be NOW too. It too will be a moment that can be very easily missed, just as easily missed as this one.

Right now, I'm going to bed.