Monday, December 10, 2012


There's something to be said about this time of year.  Perhaps it is a bit delayed this year as we haven't yet seen an snow here?  There are things that remain static, and things that change.  Only one is predictable, though.

The last of the leaves were scraped off the curb last week.  A mix of rain and sleet seems to fall every few days.  We've done entirely too much switching back and forth between sweatshirts and the whole winter get-up.  Soups and hot cocoa have become regulars in our kitchen.  I'm starting to think about putting up our Christmas tree.  Some gifts are wrapped and hidden from peaking eyes.  All these things-static. traditional. routine.

But among all this is one constantly changing little boy.  He has amazed us in the last few months.  There aren't enough words in the English vocabulary to describe how much incredible progress AJ had made.  It has gently reminded me to enjoy each precious moment with him.  Suddenly, his life feels like its in fast forward.  I am indeed not sad about this revelation.  In fact, I'm delighted.  Ask any special needs parent and I'm sure they'd agree.

When our children grow, in any way shape or form, it is monumental.  How our children's lives begin is never far from our minds.  AJ has recently designated himself as the official light-switch operator.  It started with just his own light-switch in his room, but has since migrated throughout the house.  Besides the obvious gains of cause & effect understanding, fine-motor, and gross-motor, the most important gain is the simplicity of the act.  As I observed him giggling, turning lights on and off around the house, my mind was flipping back as fast as a tape deck gone haywire.  That sound was there too.  Come to think of it this flipping reminded me of a view master.  {Can you tell I was an 80's child?}  From a limp, tiny child to a tall, ever-increasingly independent big 6.5 year old who is doing things we were told were very unlikely.

Keep flipping those light-switches kiddo.  Change is a good thing.

Monday, October 1, 2012

All the Ups

First, allow me to clarify what I meant about how thinking about AJ's future is painful.  It is not ALL painful.  But the detour is initially painful.  You know, your drivin' along and suddenly are faced with a detour?  Some frustration sets in and perhaps a slight bit of panic as to where is blue blazes this detour is going to take you, as well as whether or not you'll arrive at your destination on time because of this blasted detour.  Does this sound familiar?

I think what was the most painful was changing the mindset.  Our journey has not been classic.  I prefer to think of it as unique.  But there have been serious moments of pain when you realize your child will not be sitting on that bar stool at a college bar with his friends, or any other of the myriad of classic moments in a child's life.  The process of changing your mindset is painful.  But here's the thing: I don't care about that anymore.  AJ will be AJ and his life will be full and enjoyable.  We'll do whatever it is he needs/wants.  I worry more about the logistics of this new road of a life-time of care for him.  I know his life will be outstanding.  No doubt.

So, moving on to the ups...

AJ saw his GI doctor in August.  It was so hard for me to believe that he hadn't been there in a year.  First stop, weight.  31.5 lbs.  Woot Woot!  Second stop, the room with a view.  I secretly hope each time we visit the GI clinic that we get this one specific room that has a whole wall that is a window.  And then, AJ was discharged.  Say what?  I was in complete shock.  AJ?  He was busy playing with the otoscope which, why do they have an otoscope at the GI?  Anyway, they feel he is doing so well there is nothing else they can do for him, other than what we keep doing.  Last year they were a bit concerned about his calcium intake, but since he's now drinking white milk, and loves all sorts of dairy products, they aren't concerned.  On the days where milk isn't his choice, we give him a Tums.  Yeah, and he eats it.  He's growing like a weed, so I wouldn't be surprised if he's now around the 33lb mark.  Way to go buddy!

During the first week of school we had AJ's private feeding therapist come in and do a consult with AJ's school staff.  I was there too.  The week prior, I had witnessed him eating in the cafeteria. Woah.  Sensory overload and HOLY LOUD.  Yep, I'm that mom that walks around her kids school with her cell phone out.  Really, I have a purpose.  I'm checking to see how loud things are.  After watching him, I immediately stated to his staff that he cannot eat in here.  He's now eating upstairs in a classroom with friends.  His whole entire demeanor has changed, his behaviors are slim to none, and he's not on sensory overload, so he actually eats his food.  The staff is very comfortable with AJ's eating style.  This brings me a HUGE amount of relief.  He has a current Feeding Plan on file.  I am one happy momma. 

A few weeks ago I had AJ's CI processors tweaked.  It's been awesome.  Now that we are aware of how loud certain environments are for him, things make so much more sense.  He's no longer hating his CIs.  That's truly the best way I can describe it.  His audiologist tweaked his sensitivity, which has been sooooo awesome.  He's been doing well at school, but still prefers only one ear on the majority of the time.  We saw AJ's audiologist last week-she wanted to know who this kid was in front of her.  When she came out to get us, he was in the middle of putting his coil back ON himself because he know he was missing out on sound.  Holy awesomeness.  He was much calmer during the appointment and when he wandered into the soundbooth, we followed.  He sat on my lap, with one of the audi's in front of us, while the other was behind the window running the testing.  I haven't been in the booth with him for a very, very long time.  He's never just sat in my lap.  His audi didn't even need toys to distract him.  After I had said that anything over 70dB causes him to take a coil off, we started there, testing several frequencies. He responded to the VRA-WHOA.  He lasted about 10 minutes, which was amazing for him.  They also tested higher dB's and at mid-frequency, he responded at 30dB bilaterally.  Woot woot!!!!  We called that a success and got out of there before things got ugly!  His audi ended up tweaking the sensitivity just a little bit more.  Like, a smidge.  We're giving him 2-3 weeks to adjust and then we'll go from there.  I'm determined to keep on top of this.  It is SO COOL to see him put his own CIs on because he wants to hear.  That is a cochlear implant parents DREAM come true.

I've had to raise the swings on our swingset twice.  I've had to raise the rings on our swingset twice, because someone keeps on growing, and growing, and growing.  Which is good, and sorta bad.  It's shocking to us because we've gone years with praying he'd grow with very slow progress.  So its weird to us.  He's way to heavy to pick up and carry now-which you'd think at 30 some pounds that wouldn't be too bad.  AJ is dead-weight when you pick him up-the majority of the time.  Ufta.  He's too big for the infant straps in his car seats.  This all so exciting, and nerve-racking at the same time.  When he grows, he hurts.  For those of you that are newly reading my humble little blog-his cerebral palsy prevents the message from his brain to his muscles to happen normally.  So, he grows, his bones grow, but his muscles stay.  Tight.  Ouch.  Hurt.  So, growing can be painful for him and increase his tone.  When he grows, its like he's walking in 4 inch heels all the time.  It totally screws up his body awareness. We bulk up his time of his gigundo yoga ball, swing him (helps him loosen up) a lot, do lots of deep tissue massage, and long baths.  Our whirlpool tub is the absolute best thing about this house, because AJ has benefited so much from it. 

Lots of tune-ups, change-ups, and growing up going on!

Wednesday, September 26, 2012

Constant Encouragement

The trees are turning and the leaves are beginning to fall.  My street is full of a unique blend of green grass, mixed with golden yellow and burnt orange sprinkles of leaves.  This time of year makes me reflect.  It also makes me feel like life is in fast-forward. 

We live across the street from a CBR, which stands for Community Based Residential Facility.  You can read about them here.  It was Halloween last year when I noticed something particular.  While handing out candy to the adorable little kiddos, I noticed a Christmas tree in the front window of this house.  Fully lit, with those big beautiful colored glass bulbs that you can't find anymore.  If you do find them, the colors just aren't the same as the old ones.  Jeremy was familiar with CBRs, but I was not.

This bothered me for weeks.  Ok, let's be honest-months.  Do you remember this post? I had same pent up feelings as when I was in that store.  I didn't want to look at the house, nor did I want to pay attention to the coming and goings of the people that live there. 

Shut it out.  Tune it out.  Make it disappear.

Thinking about your special needs child's future is a Catch 22.  You have a hard time living in the moment because you know all of the things your child needs to do/accomplish/learn in his life.  In the same breath, you don't want to think about the future because it is painful.  Extremely painful.

I didn't want to think about my son being in a CBR.  I didn't want him to be different.

Yesterday, my friend from the CBR did his daily morning walk and greeted AJ and I as we made our way to the car.  I was sad when they took the Christmas tree down...even though it was well beyond the holiday season.  I started to yearn for AJ to have the opportunity to live within the community...semi-independently.  If you are thinking it is too early to be thinking about this-trust me-it is NOT. 

My thoughts have changed and my heart has healed a little bit more.  At this point, AJ would not be able to live in a CBR.  I won't go into the reasonings, but coming to that conclusion was painful.  But once it was made, a little more healing took place. 

I must admit that I am struggling with juggling finishing my BA with all of AJ's needs, as well as just running the show around here.  I finished my last class with a full night of tears and feeling completely overwhelmed and exhausted.  I was bound to hit a wall sooner or later, right?

Yesterday morning I looked out the window and saw the leaves falling and the breeze blowing the beautiful maple tree that stands in the CBR's front yard.  The presence of the CBR is my constant encouragement.  While AJ is my first encouragement, the house is my second.  I am not only finishing my degree for myself, but also to provide for our son.  Jeremy is going for his NP to provide for us as a family and for AJ.  We are planning our retirement with AJ. 

So, I'm beginning this new class with my spirits lifted a bit higher, and my constant encouragement across the street.  I'm doing my best to remember that this is only a season.  And if life keeps flying by as fast as I feel it is, it will go faster than I think it will.

Monday, August 20, 2012

A Tender Moment

Last week I came home from my women's bible study group and knew AJ would be awake.  The sitter left and I gave AJ his soft tissue massage and put him to bed.  A few minutes later, I heard him crying.  The kind of crying that tears your Mommy heart out.  The cry that comes with sad face, pouty lip, and no sound for at least a few seconds.  It is very rare for AJ to be this upset.

I turned on the light in the bathroom, which is next to his room, and went in to comfort him.  I sat down next to him and rubbed his back.  He calmed enough to lay down and have the covers tucked on all sides of his little body.  I laid down next to him and rubbed his back. Suddenly, he cocked his head up to the side and was staring at the bathroom light through the air vent in the wall that is between the two rooms.  A look of sheer terror came over his face and he started to panic and...cry.  I quickly turned the light off and laid back down with him.

When we first met our little dude he was in a "bedroom" just off the baby play area in the orphanage.  The room was very dim, with a very modern wood-blade fan turning slowly and the light on ultra-dim.  There were bassinets lined up on all four walls.

My Mommy gut tells me that my little boy remembers.  That he remembers laying in his bassinet for who knows how long waiting for someone to come and pick him up.  I do my best not to think about his rough start at the orphanage, but his reaction to being in his room in darkness and seeing a soft light above him freaks him out.  On another occasion we were laying on his floor with his body pillow and he looked out at the hall light-same face of sheer terror and panic.  He scrambled into my lap and I rocked him.  That was my first thought that he remembers.

From the very beginning I said no to the idea of putting a fan in his room.  Don't get me wrong, the boy loves fans, but I could not put him in a situation that replicated his orphanage life.  Even something as little as a fan triggered that desire in me.  I fed him every bottle until he could hold the bottle on his own, because I know he was bottle-propped.   How long did he lay there and wait?  While we often mention that he couldn't, see, hear, or use his eyes together before we brought him home, he did see.  This boy's visual memory is incredible.

I continued rubbing his back while he fought his tiredness.  He held my right hand, I rubbed his back with my left hand.  He fell asleep holding my hand and breathing peacefully.  I'm forever grateful that I am able to be there for my sweet boy.  While he has bonded to us amazingly well, sometimes I just think he still needs to know we're here.  There was a time where he would not allow us to comfort him, so I'm thankful for this tender moment with my little man.  I'm thankful he's HERE. And I'm thankful that even if he can't say Mama, he knows who his Mama is and has found my purpose in his life.

Thursday, August 16, 2012

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...

-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.

-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.

-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.

-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.

-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.

Sunday, June 17, 2012


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.

Saturday, June 16, 2012

Special Needs Family Support Group

A few months ago I had ants in my pants about the fact that there aren't any special needs support groups in our area.  After speaking to a few different contacts in the special needs world I learned that most groups fizzled out a few years ago.  Lovely.  I was done searching and moved on to "Well, I start one then.  So there!"

So, I contacted a friend at church and asked if we could start a group there.  This is one of those moments where the stars aligned just perfectly.  She told me another church member and her husband were just organizing and planning such a group.

We've been meeting for a few months now and its been absolutely wonderful.  We've met some awesome people and formed some great friendships.  It is the most amazing feeling when I say a phrase or acronym and do not have to explain it.  To have another parent understand how a special needs bad day is different than just a bad day.  To vent and have someone actually get it. We laugh, we cry, we support one another.  We share resources.  We opened new doors.

Did I mention how great this is?

Jer and I learned quickly that we're sort of veterans in the special needs world.  While AJ is still young, we've been around the block and then some.  I've said it before, but a little tiny piece of my heart heals each time I am able to use the knowledge we've gained from our experiences with AJ to help someone else.


Sunday, April 22, 2012

Valentine's and Easter

Valentine's is like speed to me.  I get all excited about making rock star valentines for AJ to take to school.  

This year, not only could I find the perfect valentine for us to make, we also ran out of time.  So, I had to simplify.  We came up with this:

I stamped the greeting and wrote his name and he put the stickers on.  He absolutely loves playing games with stickers.  Put them on your nose and he'll find them in no time at all.  And, of course, it is a great OT activity.  I heard from the kindergarten teacher that the kids all loved them.  Sometimes I think AJ could have given his classmates bags of pebbles and they would have been over the moon.  Our little guy sure has his own fan club.

I made these for AJ's school staff, courtesy of Pinterest:

For Easter, the Easter Bunny forgot-ok-has no idea where his basket is.  I saw a cute idea (again, on Pinterest) to dye eggs using koolaid packets instead of the 'ol vinegar and color tablets.  Yeah,  good intentions.  And then I got to thinking about what the Easter Bunny should bring AJ....

He brought all his favorites: Freeze pops, glow sticks to play with in the bathtub, 
sour straws, and a light-up yoyo.

AJ attended church for the first time hearing (back in December we took him for Christmas but later found out his processors weren't working then so it wasn't such an accomplishment then) on Easter.  He did very well and even signed more for the lights after the music was over.  It was seriously cute.  For Easter dinner, he wasn't the least bit interested in eating, he only wanted a freeze pop.  He proceeded to entertain us with that one freeze pop for at least a half hour.  He then devoured several pieces of Irish Cream Pie.  

We've settled into a groove where I no longer feel the stress of having to have holidays a certain way.  

We do what works and enjoy every moment of it.

Sunday, April 15, 2012


I have so much to share.  As usual, I'm behind on the blog.  What happened to posting every day?  Yeah.  Not so much.

Tonight we had the privilege of sharing our family's story with our special needs group.

Our what?  Yeah, I haven't shared about that-but I will.

Our group is devoting the first 15 minutes of each meeting to focusing on a particular family. We paved the way tonight, sharing our family's story first.  It has been quite a while since we've shared our story.  But there was something very different this time.  We went from the beginning to now, spanning almost 5 years.  We had AJ in the meeting in the beginning to show everyone who he is now. Then, we shared our story. I think it really helped the group, and us as his parents, to see how far he really has come.

The purpose was to share our history and share our child's strengths.  And sharing the things "they" said he'd never do and is now doing.  AJ's determination slapped me in the face as I was speaking.  He doesn't know he's any different than anyone else.  We all love the same, don't we?  He's determined.  The most determined person I've ever known.  If he can be that determined, then we can be that determined to keep advocating for him the very best we can.

Thursday, March 8, 2012

Cooking for 1

Or should I say cooking for 1, the 1 army-sized eating machine that is my son?

Jeremy and I joke a lot about how much AJ eats, but in all honesty we are tremendously grateful that he is such a great eater.

Tonight's featured dish?

Spinach and ricotta tortellini with homemade marinara sauce.

I'm no Martha or Food Network guru, but lately I've been challenging myself to go a bit healthier with AJ's diet. While the kid has an all-you-can-eat pass to whatever he wants because he's so little, that doesn't change the ingredients of those golden arch chicken nuggets that are now ingrained in my brain.  Ew.

AJ eats anything and everything.  The amount he eats literally astonishes people.  If he doesn't like something, it is probably due to an oral issue or texture he is unsure about.  But it makes me happy to see him eat mini trees of broccoli and kidney beans.  If he doesn't want broccoli in that form, he'll eat it in soup the next day.  And not wanting it doesn't mean he won't eat it ever.  It means just not today or for this meal.  I was not surprised when school reported that he loved red beans and rice with hot sauce for lunch a few weeks ago.

I'm on the hunt to find more healthy fats, different proteins, and creative ways to get calcium into his body.  He's still taking those gummy vitamins, but they still haven't magically include calcium or anything else that should be in them-in them.

After a long appointment today, I ran through Starbucks to grab him a cookie and water.  He ate the whole cookie.  I thought to myself, who is that little man chompin' away back there?  It's the same little dude who didn't know what a spoon was.

How far we've come.

I think the cookie thing will be a tradition for appointments at the hospital.  And maybe, just maybe, Mom will get herself a delicious coffee concoction too.  Way to go AJ, Mommy is proud of you!

Wednesday, February 29, 2012

Finding the Sunshine

I woke up this morning, clearly on the wrong side of the bed.  I haven't been sleeping well recently.  Which may not be surprising, but to me it was since I was on a "great night of sleep" streak for about six weeks.

I growled out of bed, got ready and heard what sounded like blocks tumbling down the wall.  "AJ's up," I announced.  I walked in to see a smirk-faced boy sitting on the floor amidst a million puzzle pieces and the container they go in-on top of his head.

We commenced the morning routine, which currently includes three medications.  His seizure medicine goes down with ease.  I'm the luckiest Mom on the planet that this kid has no qualms about taking medicine everyday.  Twice a day.  The second medicine and its mondo syringe to dispense it is met with minor whining from AJ and anxiety from me.  I prep the mondo syringe with his antibiotics and prep a small syringe with his favorite-Tylenol.  He loves Tylenol and Motrin.  "This first, then this one, " I say.  I give him the antibiotic one mL at a time, slowly counting down how many we have left.  "All Done!" I exclaim.  He swallows, then giggles as I pick up the syringe with the red cherry goodness.

AJ plows through his oatmeal and downs his milk.  I groan noticing the oatmeal on every inch of his pajamas, face, and hands.  If there is anything that I hate cleaning up, it is definitely oatmeal.  He successfully wears his cochlear implants for a full five minutes before flipping a coil off as I am putting his braces and shoes on.  I lose it.  Tears, begging sweetly to be a good boy and wear his ears.  While we make our way down the stairs for "the morning swing" he enables his shoulder to rub off the other coil.  I watch the time closely while he swings, take him to the bathroom, and come upstairs.  He commences the giggle-fest that has somehow become routine when putting on his jacket.  It makes rushing nearly impossible and makes getting his jacket on even more impossible.  We get to the driveway where he corkscrews, I let him fall, and he laughs.  Some days he sits, today I was thankful he stood back up.

As we drive to school I watch him like a hawk in the "AJ mirror" attached to my visor.  We arrive at school, where he flips a coil off as we walk in the door.  I get in the car and feel the uncontrollable tears coming.  I pull out and turn left onto a different street so I am not the mom in her car bawling in front of school.

By the time I arrive home I am no longer crying.  The worries?  They linger.  The thoughts start running on their hamster wheel. School is not going well. We're four days post double ear infection diagnosis.  His ears are fine.  He's been "hearing" for a month after a ridiculous hiatus for who knows how long, this was not what we needed.  Oh, I have to write that appointment in my calendar.  How long will this last?  I have to get him back in the pool.  When is he supposed to see Dr. M?  Make a plan for spring break.  Schedule therapies for spring break...

The sun suddenly breaks through the clouds and I can feel its warmth through the window.  I run around the house, opening the blinds and windows.  How bright it is when light is allowed to shine in!  I go outside and spend some time with the pooch and his Frisbee.  He is happy, I am warm and suddenly feel better.

I find myself all to often wrapped up in the special needs that have special needs in our life as a family.  It consumes a massive amount of time.  And a lot of my own personal energy.  I don't like to drag through a day but sometimes I do.  Raising a child with special needs is different than raising a typical child.  Until you do it, you really don't know or understand.  I have wasted plenty of precious energy on trying to convey that message.  I am needed more.  I am needed in different ways.  We are needed, often, indefinitely.  You give more of yourself to your child than you ever dreamed possible.  And yes,  in a different way than parents just give themselves to their children.  I'm not discrediting you typical parents out there.  No, I am simply stating that my role as a parent is different.

Trapped under the fine print that comes with having a special needs child, I don't often see the sunshine.  His needs-sometimes they make me angry.  AJ doesn't.  The needs do.  The compound idea surrounding special needs can drag you down.  I spend so much emotional and mental energy on what my child has needed/needs/is going to need that my physical energy suffers for it and I'm often a mess when my husband comes home.  I'm thankful its not every day, but recently, yeah.  It's happened a lot.

Time is precious.  And while I cannot force or rush my child, I don't want to waste time either.  I've had  little bits of sunshine creep in here and there.  I love his morning smile and his excitement during baths.  I love how he cuddles me now, when for years I prayed he would do just that.  I hate how tired and frustrated I am at times and how the first thought in my head is often therapy related vs. ice cream date with my son related.

I know too much to enjoy him sometimes. That makes me sad.  I'm not an expert on cochlear implants or cerebral palsy or anything else he has going on.  AJ is a special needs jambalaya.  I need to know a lot in different areas, which is often frustrating to me.  I feel like I have no focus.  In essence, I do.  AJ is my focus.   But when it comes to his needs, its multiple choice.

Spring might just become my new favorite season.  I'm not sure.  I'm sure fall will suck me back in with its apples, pumpkins, and crisp weather.  But for now, I'm welcoming Spring.  Spring's rebirth and renewal.  Spring's sunshine.

Tuesday, January 31, 2012

The Resilient Men in My Life

Today was one of those days I anticipated to be emotionally draining right off the bat.

Somehow, the day decided to out-do itself and went above and beyond the call of emotional duty.

First up, an appointment with AJ's cochlear implant team.  We decided to try the ESRT test a few electrodes at a time without sleep deprivation or anesthesia.  Amazingly, between five adults and AJ we managed to achieve the ESRT!  A new program was created from the results.  (I will do a separate post explaining more)

And then.

We figured out his processors have been switched.  Meaning, he hasn't been stimulated. As in -NOT HEARING A DARN THING.  Cochlear implants now have this "safety/non-freak out" feature.  The processor only works with one side and is programmed so that it will not work on the opposite side. Can you imagine wearing  a completely different program on the wrong side?  Ouch.

I have no idea how this happened, and it really doesn't matter.  What matters is that we make sure the mistake is not made again.  I'll be using the remote to test each morning to make sure we're copacetic.

My heart literally dropped the floor and I could not control my tears, not matter how hard tried.  This was the last thing we needed.  (How many times have I said that?)  I started questioning things, so that's why he's not turning to his name, etc.  All things you see in hindsight.  It bothers me that I don't know how long he's been "off-line".  When we put his implants on he freaked.  He wore one home and when I tried two, he screamed and I got sick.  Lovely.  I felt so overwhelmed that we were in a broad sense, starting over.    I can't stop his life to help him adjust-the world is a loud place!

After lunch, we went to downstairs to swing and he tolerated two just fine.  The pattern I found today was that he was fine for a while and then just needed a break.  He then tolerated them again...for a while.  This is progress.

A few hours later, we ran over to the neurologist's for a quick, painless visit.   We came home, ate dinner and listened to Pandora.

And he was happy.  Gee whiz, kid.  How do you do it?  As he giggled with intense excitement over the fact it was bathtime, I felt amazed by my little dude.  So resilient.  He's always been that way.   He has such an incredible aura about him.  He inspires me to keep going.  If his little body and mind can do it, than I can at least try, if not do it along with him.  His smile is like an etch-a-sketch.  Really.

During AJ's first appointment, my foot fell asleep.  We were all sitting on the floor and I felt my foot fall.  When I attempted to get up at the end of the testing my left lower extremity was completely asleep.  In a very deep, odd way.  It scared me.  I tried to walk and it was this really weird feeling.  Not that funny, ha-ha my foot fell asleep feeling.

And I thought, Oh My God.  My sweet husband has this happen without notice.  I was humbled.  His MS has been playing games recently, which....  Has thrown us for a loop.  We were blessed with a full year without symptoms.  Although his recent MRI was stable, with no new lesions or activity, there are still some not-so-fun things happening.  With no rhyme or reason.  Which is incredibly frustrating.  So, I took my tiny glimpse into his fight and tried to understand all that I could.  So that I can be the best support I can for him. I can't explain how helpless we feel sometimes with all we've been given.  Its just a fact.

My husband is resilient too, you see.  And for that, I love him more than words can express.  He knows.  I know.  And we move forward.  I move forward with the strongest men I've known; the two resilient men in my life.

Wednesday, January 25, 2012

"I Don't Recall"

My mind has been all too foggy lately.  In fact, a friend posted "I have the attention span of a goldfish today" a few weeks ago and I've adopted that as my "I can't focus" creed.

Seriously.  Last week it was the attention span of a guppie.  On Monday, I slipped even further and said it was that of a sea cucumber.

So when a friend and I were chatting today and I couldn't answer the question of how many electrodes are firing on each of his cochlear implants...I hung up feeling moronic.  I know, I'm my own worst critic.  But seriously, this is stuff I know. This is something I KNOW. know I've asked his audiology team.  In fact, I've seen the electrodes in all their charty glory on the computer screen not once, but multiple times!

Why couldn't I remember?

Oh yeah.  I'm old.

In all seriousness, the sheer magnitude and variety of issues AJ has me juggling is making me increasingly perplexed.  I'm finding it extremely difficult to focus on just one thing.  Because when you focus on just one, the others fall to the wayside.  Believe me, I know. It's a balance, they say.   I'm still struggling with what to keep and what to toss in regards to this boy's massive paper trail.  Do I really need all of his ER discharge sheets?  Do I continue the mass medical binders with tabs for each specialty/area, or do I make smaller binders per specialty?  I'm back to writing my daily to-do's specifically for AJ in a specific notebook. Its been my saving grace.

Earlier this week, while discussing his new conjunction, junction, whats your function...scoliosis!  issue another friend asked, "I really don't know how you do it all. It seems like one thing after another."  For the first time EVER, I agreed with her and said, "You know I don't know either.  I do what I can."

And I drink wine.  Wine helps.

Saturday, January 21, 2012

A New Diagnosis, Plus...

It's early Saturday morning and I'm up watching and listening to the snow plow on our street.  I find them oddly fascinating.  I know.  Weird.

So, let's start with the new diagnosis.

AJ has functional scoliosis.  He has what?  Here is a short definition from this site:

Functional scoliosis: A structurally normal spine that appears to have a lateral curve (scoliosis).
Nonstructural scoliosis involves a temporary change of spinal curvature. This is caused by an underlying condition such as a difference in leg length, muscle spasms, or inflammatory conditions, which may produce muscle spasm. Functional scoliosis is treated by correcting the underlying problem. The spine itself needs no treatment.
Functional scoliosis is also called nonstructural scoliosis as opposed to structural scoliosis in which there is a fixed curve of the bones of the spine (the vertebrae).
You may remember Rona from this post. We're scheduling him for outside therapy appointments when he's off school and it just happened to work out that she was going to be at his clinic doing consults.   We beat the snow and were able to see her yesterday for a consult. He had a rough start to the appointment...he thought he should spend the entire time in the net swing.  He always has a rough time getting out of that particular swing because it calms him and turns him into a loose noodle.  
I also think he is able to anticipate what is going to happen.  As in, they are going to move my body is ways I don't want to be moved. He's a smart cookie.  He was arching, pulling off his equipment, and I immediately took to the iPad to show him the "Time to Work" symbol.  I then sat next to Rona and he calmed.  
I've learned how these consults work.  They are literally "fast and furious".  Not in a bad way, but in a constructive way.  His SLP and PT were also there, with his PT taking notes via laptop (when she wasn't concurring with Rona), and his SLP doing the paperwork and facilitating the ipad (when she wasn't working with her) while Rona did her thing.  
As the words scapula, clavicle, rib cage, and "lats" started to float around, I began to feel amazed, as I often do.  I've been around the block enough to know good therapists from bad therapists.  Does that sound harsh?  I was, for the 7,234 time, amazed and thankful for his therapy team.  
And then they said it.  "He's got some functional scoliosis going on here." Some what? Scoliosis has been a word used in association with AJ before, as in we want to avoid it, but not functional scoliosis.  In short, he's growing SO FAST that his muscles are tighter than they already when growing.

Tight + Additional Tightness = Pressure on the spine = Functional Scoliosis.

It also equals pain for my little man, which is not ok with me.
I turned him around and had them show me, sure enough, a little curve.  I could suddenly see how his left shoulder was all "wonky" and this strip of tight muscle pulling from his left shoulder to his right hip.  No wonder he's all WONKY!  
So what do we do?  Soft tissue exercises.  The good thing is that it is temporary and can be treated, we just need to keep on top of it.  I had his PT show me what to do at home.  I am SO grateful for the huge exercise ball Grandma Cheri got him.  The first thing the PT did was put him on the ball and do some rotation and lengthening pressure maneuvers.  We also need to get him in once or twice a month to check in with his PT/SLP/OT at the clinic.

I did the exercises twice with AJ yesterday after we got him.  He was more open to me manipulating him than he was with his PT.  When he's not used to his body being in a certain position, even if it feels good, he sort of freaks out.  His security blanket is pulling it all in, tight.  When getting him ready for a bath, All I could look at was his spine.  I imagine I'll be obsessed with it for a while.  His body felt better and he moves better after the stretching and lengthening.  I don't want him to be in pain. At all.  After I had my cry and moved on to the logistics of the whole thing, I started putting together the puzzle.  Is this part of why he's frustrated at school and sometimes at home? Because he's in pain and uncomfortable and can't tell us?  I would bet money on it.

I'm thankful its temporary and that there is something we can DO.
Rona also observed him eating and was thrilled with the progress he's made.  She talked with the SLP on some things to work on to help lateralization of his tongue (he just doesn't want to do that!) and some other things.  Nothing that we weren't working on already, but Rona always has some trick of the trade that works wonders.  
I also learned that the most recent orthotic that we have for his left foot, is causing pronation. It's tiping his foot in, like this (the outline is normal placement of a foot):

His foot already turns in!  He was casted wrong, which makes me not so happy.  We lost our favorite orthotist last year.  Sadly, who you see makes a difference.  I hope we don't have to have him re-casted and that the current SMO can just be fixed.  

Moving on...
AJ only woke up on his own once this last week.  Sigh.  We did receive his Keppra level back-it was normal. As expected.  Sigh.  I've got a call into his neurologist to see if I should wake him or not.  He's sleeping the same amount of hours (12 to 13), its just 8 to 8-ish now instead of 6 to 6 or 7 to 7.  I think its a combination of the cold he's had all week, growing, and brain activity. Now that we've learned about his functional scoliosis causing him pain and making him tighter, I think that is part of it too.  I also need to chat with neurologist about the ERST (see below) and whether sleep deprivation (forcing a nap during the appointment) or anesthesia is a better route.  AJ did wake up on his own this morning and I was so excited to see his smiling face when I opened the door and he was standing there.  Hooray!  I hope it continues...

A few weeks ago I left a pretty excited message for AJ's dietician at the GI Clinic. I had found a "Complete" chewable gummy vitamin and wanted to share with her.  The vitamin drops for infants don't have the right balance of what he needs at his age and are missing quite a few things.  The regular gummies are missing essentials too.  They are indeed, not complete.  That word is drilled into my head.  So imagine my sheer bliss when I find these Flinestone Gummies and they say COMPLETE!  And, AJ takes them like a champ and requests more!
I got a call from his dietician.  Turns out, these gummy vitamins are NOT complete.  This is clearly a false advertisement and not only will Bayer be hearing from AJ's GI Clinic, but from this frustrated Mama.  I had Jeremy take the empty bottle to work so he could give it to his dietician, just because.  We decided these are better for him than nothing.  But, of course I knew they'd be worried about something.  They want to make sure he's getting enough Calcium.  I downloaded a handout on the hospital website regarding how much calcium he needs for his age.  I'm thankful he's now requesting milk!  

Today was saw AJ sign the word "more" a lot.  I mean A LOT.  Repeatedly. Its his new way to say "I need to tell you something-I need my ipad."  Which is quite brilliant if you ask me. Brill-iant.  We're straddling a fine line of patience with this boy.  I've been corresponding with the company that created his communication app, almost every day for the past few weeks.  We are trying to hammer out some kinks.  It is amazing to have an answer from the founder of a company in your inbox two minutes after you sent it.  

We are still working out the kinks with having school trained on his iPad.  Frankly, I am frustrated. But we are closer than we were before and I am trying to focus on that.  In this post, I mentioned the list I was coming up with in regards to what the staff needs to know regarding his iPad.  While the iPad is, pretty simple, organizing and knowing what needs to be used on a daily basis for AJ is a bit tricky.  I mean, if I gave it to you and said go to iComm, storyboards, reorder moving "J" to "K", and OT with speech, hide playground, add ball and shaker, enter time ring into picture menu, then make sure to access the video...would you know what to do off the bat?  Probably not.  My list ended up spanning 5 pages and yes, included tables and highlighted section titles.  

This year, so far, has been a year.  I wish I could say its been a breeze.  What I am learning?  AJ is a curve ball, in every sense of the word.  The programming for his school day, which was planned last spring/summer, is just simply not working effectively for our little dude.  Meetings are taking place, like gang-busters to remedy and make things better for AJ.  We are aiming to strike a balance between AJ's special education needs (SE) and deaf education needs (DHH). Right now, it is lop-sided, with DHH outweighing SE. Anyway, things are changing.

Cochlear ImplantsWe've now learned that there is not enough research to show how sedation may or many not change/alter the results of an ESRT.  However, we have results from an "awake" ESRT AJ had last year, so we'd have something to compare it to.  Given AJ's history, our CI Clinic has said they'd like to put AJ under anesthesia in the OR for the test.  This kid doesn't do anything half way.  Oy.  We still have not decided whether to do this or not, but I've been obtaining additional opinions and doing some research of my own.

I'm also excited to announce that we've been accepted into a study through the University of British Columbia in Canada.  The study is exploring parent experiences of the cochlear implant process for children who have special needs in addition to deafness.  As I spoke with the staff at UBC, I had goosebumps.  Hearing that someone actually realizes that our process is different. Amazing. Not only do they want to improve the parent experience, but also educate and assist professionals and CI teams to optimize delivery of services.  The woman I spoke with, asked for a brief explanation of a few things to see if we qualified.  Her response (after my 10 minute answer)?  "Whoa.  Um, yeah.  You definitely qualify."  I'm super excited about this and can't wait to share our contribution.  

I've been going back and forth with the vision specialist in our school district.  She's had a chance to observe him a few times.  Following her observations I asked her for any suggestions or tips she could share to help AJ use is vision more effectively.  The beauty is that the iPad acts like its own lightbox!  It helps him focus.  He still has a bad habit of using his hands to explore things, grab, or even eat without using his eyeballs.  Grr!  We're working on making him use his vision.

We've finally had our first few snowfalls.  WOW.  I think I literally shed a tear the first day I drove AJ in the snow to school.  It took me a whole 15 minutes.  All of the stress of selling our house and moving went away in those first few drives.  I'm anxious for spring though.  Aren't you?

Sunday, January 15, 2012

"You Do It" Chart

AJ has fallen in love with these frozen sorbet bars.

I first found them around Memorial Day last year and thought we'd give them a try.  Of course with intentions of increasing his oral awareness, biting, and fine motors skills. Not because they are fun.  Heavens no.  My brain works in strange ways, people.  He didn't understand the concept and didn't want the tube anywhere near his mouth, so I chopped them up into pieces and put them in a bowl.  He ate them with a spoon.

Fast forward to two weeks ago when he was eating everything and anything in site and I gave one to him out of sheer desperation.  Guess who's eating them all by himself?  Tube and all?  Yep.  I'm so proud of him!  And, the fact that they are natural sorbet bars makes me feel less guilty about giving him more than one.  

We are working on teaching him how to push the frozen goodness up through the tube.  Sometimes he attempts it on his own, or bites the tube itself which pushes the goodness up.  Other times, he's quick to just hand it to me.  I don't think so, dude.  "You Do It" is a very common phrase around here.

And then I stumbled upon this handy chart the other day.  

Huh.  The picture didn't turn out as clear as it looked on the camera.

Anyhow, I've posted the chart on the kitchen cabinet as to remind us what he can do on his own, and to facilitate helping him learn new independent skills.  I laughed when I saw the dog dish and the word "feed" on the chart.  Something so simple that I hadn't thought of.  He loves to give Rocky treats, so why not practice scooping and pouring by feeding him too?  Genius.

We're all about fostering AJ's independence around here.  Sometimes, yes, we do things out of habit, in a time crunch, or even subconsciously.  But he's proving more and more than he can do more and more so, we're going to do our best to encourage him.  

Even if it means he gets to eat 4 sorbet bars at one sitting.  Practice, right?

Thursday, January 12, 2012


There are many times during our journey with AJ where there hasn't been a choice to do something or to not do something.

But then, I think again and really think about how technically, there is a choice in all of things we do with and for AJ.  While I would never think of not giving him his seizure medication, there is (technically) a choice to do so.  There is a choice in taking him to this doctor or this specialist or even to therapy.  I could go on.

The choice for us was made a long time ago.  Give AJ absolute everything and anything he needs.  Period.

Still, we often come under fire for the choices we make outside of AJ.  While it doesn't change our choices or follow through, it often comes as a surprise to us.  AJ is always a part of those other choices in some way or another. We try to find a balance between being AJ's parents and being Jeremy and Heidi.  Sometimes we succeed.  Sometimes fail. We keep trying.

Obtaining my BA has been difficult in recent months.  A funny thing happened when I stopped whining about it and sat down and devised a plan to schedule my time better.  It worked!  I made the choice to earn this degree so I'm going to own it.   Figuring out that I'll be graduating 3 months early has also been a huge motivator.

I'm proud of my sweet husband for not only going for but achieving so many of his own goals.  I ran across some paperwork yesterday from 6 years ago that had written "obtain my Nurse Practitioner" on it.  He's going for it and I'm so very proud of him.  

I have sat on the couch and wallowed.  Pity-party central.  Tears. Fear. Panic. They are paralyzing.  I mean, straight up paralyzing if you allow them to consume you.  It may not show, but I can be a huge fraidy-cat.  Straight up.  While certain experiences with AJ have given me thicker skin, sometimes I'm still sensitive.  Allowing our son's diagnoses to consume us, any more than what they already do consume, is not a choice we are making.  We both need to have something to focus on and enjoy outside of being AJ's parents.

That does not change the fact that we want the best for AJ. This does not mean a fancy house, cars, and all the latest toys. It means planning for his future, as his needs continue to increase.  It means having the ability to hire help when we need it, pay for the therapies and equipment that he's going to need. At the age of 5 AJ is already being denied services.  We are not going to be able to rely solely on what our state or other resources may provide him in the future.  Who knows how long all of these things are going be in existence.  AJ will not thrive on settled or skimping by.  I refuse to put him in some dumpy home when he's older just because that is what the state will pay for.

Bettering ourselves for the sake of ourselves and our son?  That's a smart choice if you ask me.

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.

Saturday, January 7, 2012

Who Is That?

With time certainly comes changes.  Yikes.

I spent today with my Mom. While the day was indeed productive, it proved to be mostly a girls day. A much needed girls day.

What I didn't need was to see pictures of myself as a 5th grade cheerleader and 8th grader.  Double yikes.  I had a good laugh and then moved on to photos my mom brought home from her office.  A collage of pictures from my senior year of high school.  

Who IS that girl?  Sure time brings age and the normal,typical changes you experience as you grow and mature.  

But there were things I suddenly missed about myself.  This fresh face was staring back at me.  Sitting on the shore of Lake Michigan ready to take on the world. Full of life, not tragedy.  I looked....Like someone else.  I look in the mirror and don't see one iota of that girl.

Do I want to be 17 again?  God, no.  But there are parts of my personality that seem to have somehow died off.  I'm much too serious.  Most of the time.  No really, ask my husband. He'll tell you.  I'm constantly on edge.  Worrying about whats going to happen next that going to feel like a sabotage attack on my family and our future.  Feeling scared and letting my fear completely consume me.  I can turn a silly situation into a serious tension-filled situation in seconds.  I'm available for parties.  Inquire within.

Don't misunderstand me as having a pity party.  I certainly was not.  I simply recognized some not so great ways of how I've changed.  And in that moment I vowed to change.  

Friday, January 6, 2012

In Which I Am a Super-User

I anxiously picked up AJ's iPad from the UPS delivery center the day after Labor Day last year.  When we opened it, it was a bit overwhelming.  The same thing happened when learning about his cochlear implants and my different degrees of course.  Technology has a way of making people nervous.

We spent the rest of September choosing a communication program/app that would work for him.  From October into now we've been building said program. Changes to the program are constant and will never stop.

In November and December we saw AJ really take to the iPad.  He peeks around you to look at the screen to see what's on his agenda next and signs for it.  We've been working with him on using our pointer finger to scroll, swipe, and point on the screen.    We've added pictures to the picture glossary. We've built storyboards (daily routines) and adjusted them A LOT.  AJ has been able to predict his morning routine for long time now, but its so cool to see him "ask" for something.

A few weeks ago I walked into another room after getting him dressed for school and suddenly heard "swing.    swing.     swing.swing.swing.     swing.swing.swing"  and then footsteps.  he had picked up the iPad from his bed, tapped it a million times, obviously, on the swing, and then brought it to me to say, "Mom, I want to swing."  That was the moment that solidified that my child understood the power of his iPad.  That he understood his held power in communicating.

School has given dozens of examples as to how he's using the iPad.  So much so it is now being written into his Individualized Education Plan (IEP).  In addition to that, a brilliant plan has been conceived to train AJ's team on the iPad.  My initial thoughts regarding the staff was to have each of them take it home and explore.  The current plan is so brilliant it makes my heart all a-flutter and stuff.

Our school district's "iPad Guru" is coming to train the staff on AJ's ipad.  While I won't get into too many specifics as to how it is going to work, let me say I'm thrilled to know everyone will be trained congruently.

Enter the "users". I've said before that AJ has a large school team.  11 people.  This makes establishing who needs to know what important.  We'll be identifying the "super-users" and the "users".  In order to do this, we need to figure out who needs to know x,y,z, and who needs to know a,b,c.  For example, does his gym teacher really need to know how to change a storyboard?  Probably not. Do his teachers and aides?  Absolutely.

I've earned the name as the only current "super-user".  Therefore, I am putting together a list of what the staff needs to know. From there I'll break it into the two different user categories.  Rest assure I am not the only person creating a list.  A few of us are and will "cahoots" (get together and talk about it) in the near future.  In the meantime, you'll be happy to know that my list has started with "How to turn the iPad on and off, including use of the swipe "turn off feature".  Things you don't think about until you manually go through and think, ""

I didn't know what I was doing until I sat and played around with the iPad.  Its all through trial and error.
This technology is simply amazing and I'm so glad we were able to supply our little man with a way to speak his mind.  You have no idea.   I chat with Apple at least twice a week and have been in consistent contact with the company that created his communication app.  The support is amazing.

So, its "Super-User" Mom to the rescue, or whatever!

Directions for Leaving a Comment:

Scroll down to the bottom the post you wish to comment on. You will see the time/date stamp on the bottom along with the number of comments and a small envelope. Do NOT click on the envelope! Click on the "0 Comments".

A text box will appear for you to write your comment. You can use Anonymous, just leave your name at the end of your comment so we know who you are! Thanks!