Big Brother

Sometimes, the complexity that is AJ leaves me breathless.  Sometimes in a not so good way.  But other times, in a state of disbelief.  Because we've had him in our lives since he was three months old {via adoption referral and photos}, we've had the distinct pleasure to watch him grow, change, and break through some pretty thick brick walls.

The last few months have been incredibly challenging for AJ is a physical sense.  His body has been none too kind and has been growing constantly.  His gains have been quiet and consistent, which is a change as he's usually an all or nothing, get the most "bang for my buck" kind of kiddo.

This was the second year he smiled for his class picture.

This was the first year he did not have a Christmas program at school.  This mama was unaware that they stop at 1st grade.  Sniff.

{Cochlear Implants}
Just before school began we had our yearly CI mapping.  When we arrived at the appointment, AJ walked in the sound booth, his audi announced we were going to do VRA (visual reinforcement audiometry) and test him with each CI individually and then together.  I shrugged and said lets give it a shot.  Note: we have not done this type of testing in a long, long time.  This kid waltzed in there, sat down on the floor (under the mark on the ceiling of course), LISTENED, and turned when he heard the sounds/his audi's voice through the speakers.  The visual part?  There are light boxes attached to the speakers with moving/light up cartoon characters as a reinforcement for turning).

We were all thrilled beyond belief.  Gone are the days of his sitting in the special chair with the tray with 10,000 soundless toys to keep his attention.  Gone are the days of me bouncing on a yoga ball while his audi distracted him with those same toys.  He just waltzed in there and did it.

And to top it off, he tested at 25dB across the board.  ACROSS.THE.BOARD.  We haven't been able to get real #'s on this kid for a long time.  It was awesome.  His audi adjusted his sensitivity on both implants as well.  This is what we call his "bubble".  This will enable to him to once again eat in the so freakin' loud lunchroom with his friends.  He will still hear what is going on in the room, it just won't be so overpowering and the focus will be more on what is directly around him.

Since that appointment, AJ has been wearing both his implants with more consistency instead of just the right.  The right is still most definitely his dominant ear, but it is music to my eyes-er, a wonderful sight to see when he purposely puts his left coil back on!! In fact, I may do a happy dance when this happens.  I try not to attract to much attention to my celebrations because I don't want him to stop doing it!  This activity is consistent between home and school.

His school staff has used his sensitivity setting for school assemblies and has seen great results.  We have used the setting for church and have had great success as well.  He's identifying sounds correctly with just his left implant.  Oh how far he's come!!!

{Cerebral Palsy}
'Tis my least favorite of all things AJ right now.  This is the physical piece I was talking about.  He had his last Botox injections in October.  The normal four injection spots in his left leg: adductor, gastrocnemius, tibialis anterior, and his hamstring.  We have gone through three different strains/types of Botox.  So let's call them B1-3.  B1 did wonders for a long time.  Then it stopped. Earlier this year we tried B2 which does not have protein in it.  The thought was it would last longer since he burns them off faster than they are supposed to last {of course}.  It didn't make a difference.  So we are now on B3, and he's had two doses of this thus far.  The wonderful side effect {no really, it is awesome} is that it dries his mouth out a bit so the drooling ceases a bit.

However, this last round burned off in around a month and didn't do much at all.  Other than stopping the drooling.  That it did.  And that little side effect showed me just when it was starting to wear off.  SIGH.  We're at a crossroads again.  And you know we will do everything in our power to avoid surgery.  I have an appointment scheduled with his Physical Medicine doctor (CP doc) to discuss our options.  His muscles are pulling so tight they pull his foot up, so he looks like he's a toe walker- and a mean one at that.  It is extremely painful and now, his leg is not only up but turning in again. His right foot/leg has begun to also be rigid, as it is overcompensating and trying to match the left leg, so he's toe walking on both feet.

My gut says we should trying one more round of botox, with two injection sites instead of the four. We already decided against phenol injections, as 1) THANK GOD he is not scheduled for a surgery or procedure in the near future 2) his CP doc wasn't wild about it when it was mentioned.  She's all kinds of amazing, so I trust her opinion and I wasn't too thrilled with the idea to begin with.  Phenol injections are typically done while a patient is already under (hence the other procedure scheduling). With AJ's history, it is way, way, way too dangerous to put him under anesthesia for 15 minutes to give him injections.  We're upping the usage of his night brace and his TENS unit to see if that will help give him relief.  Also on the docket are having our whirlpool tub finally fixed and of course, his continued deep tissue massages.

Night Brace

TENS Unit

We are in for -50 degree weather tomorrow.  Ohhhh my mama heart is so thankful I don't have to take him out in that.  He would, no doubt, have tremendous difficulty walking.  Cold makes his spasticity whip around and say, "Hello old friend! Miss me?!"  This week alone he rolled on his ankle twice walking out of school.  Winter is not his friend. We just keep plugging away.  Right? Right.

{Epilepsy}
Things have been pretty quiet in this deparment lately.  Which is a very welcomed blessing!  He had quiet an active few weeks during the beginning of the school year, which allowed his entire school staff to witness his seizure patterns.  While I am not thankful for the seizures, I am thankful that the staff was able to witness them and now knows what to look for.

Recently, I've wondered if AJ's seizure patterns are triggered by his Botox injections.  Of course, I am not absolutely certain, but this is one small reason as to why I am open to trying one more round of Botox, to see if there is a correlation.  Now don't get me wrong, I don't want my child to have seizures.  But, it may be a process of elimination.  There are some other things we can do for his spasticity (in addition to what we already do) including chiropractic care and/or accupuncture (meh).  This will be a definite discussion with his CP doc.

Back to the epilepsy, he seems to be holding steady. 

{Keratosis Pilaris}
For some, this is a tiny diagnosis and for some it is major.  I would say AJ's in the moderate to major range.  Since switching to "Free" products, including ALL Free & Clear laundry detergent, Aveeno Sensitive Body Wash, Sunscreen, and the Aveeno Baby Lavender Calming Lotion, he's been doing phenomenal.  I bought a different type of "Free" laundry detergent a while back and saw a change in his skin.  I guess they aren't all created equal.  AJ's face frequently breaks out in a rash when he's had something acidic to eat, and the acidity can range from low to high and he'll still break out, but we're able to clear that up with some good 'ol hydrocortisone.  It is such a relief not to see all those tiny little bumps on his skin.

*I am in no way being compensated to like these products.  We just truly LOVE them and they work for AJ.

{Communication}
iPad: We recently changed the communication program we've been using on AJ's ipad.  Since he began using an ipad two years ago (holy smokes!), we've used iCommunicate.  This app was friendly for his staff to use and navigate, but wasn't so AJ friendly in terms of independent use.  So, after much discussion with his SLP we chose to go with GoTalk.  This app is amazeballs.  Ha!  First time I've used that um, word???  I've been programming his lunch choices in so he can tell the staff what he wants for hot lunch every day.  The schedules are much more user friendly and he's getting the hang of it.  He's able to independently navigate his iPad now, turning it on, swiping to unlock the screen, choosing the correct icon menu (usually his Sensory apps) and choosing the app he wants.  If he wants out, he presses the home button and goes to another app.  He's even learned how to get to the start of one of his apps after he's accidentally gone to the instructions page.  Smart cookie.

RPM: Speaking of a smart cookie....  Over the summer, I posted a frustrating post on Facebook. AJ and I had a very rough day due to his inability to communicate.  This still happens, yes it does.  I had met our local RPM specialist at a non-profit event I was working last year.  I had heard of RPM, but didn't think it was a good fit for AJ for several reasons.  She messaged me and the thought of AJ being a candidate for RPM began to swirl in my head.

RPM stands for Rapid Prompt Method.  It was created by the mother of an autistic child.  Now bear with me, as I am explain this at the most basic, fundamental level. It is AMAZING.  To be honest, AJ's RPM journey deserves its own post.  However, I wanted to include the basics in this post.  RPM users go from using the working tool (pencil) to point to their answers.  Their choices are written out on several pieces of paper, with the paper ripping into small pieces as the auditory cue that it time to answer the question.  From here, users use the working tool to trace letters on a stencil board.  From the stencil board it goes to pointing to letters on paper, and then eventually writing or typing.

AJ had his first consult a few months ago and STUNNED us ALL.  This is working for him.  When his RPM provider said, "I'm not sure if he knows how to spell yet, but...".  That word...

YET.  RPM has taught me to stop underestimating this child.  Even when I am doing so unconsciously.  Again, I will go into more detail in another post, but for now, AJ is using RPM at school for math and reading, answering WH questions, oh I just can't get enough of this.  It's been a huge eye-opener and we can't wait to see what he'll do next.

From all of this, we have learned that AJ is a multi-approach child.  Limiting him to one form of communication does not work for him.  What is so amazing is how he uses all of these things together to communicate his world.  Amazing.

{Vision}
Nothing new to report. Hooray!

{Eating}
AJ's been throwing us for a loop with his eating recently.  Time to bust out that Nuk brush and Z-vibe and get at it again.  With all the growing he's done, I know that his entire mouth, throat, etc. feels different, just as the food and liquid going down it feels different.  He gets so much of his overall body awareness and coordination from his mouth and when that's all jacked up, so is the rest of him.  We will keep working on it.  But overall, there is only one food on his NO list, and that is celery.  He's come a LOOOOOONG way.  He enjoys hot/flavorful sauces on his food.  If it doesn't have enough zip, he's generally not interested in it.  He's also quite obsessed with frozen fruit pops.  After a long conversation with his feeding SLP we have discovered that he gets quite a bit of organization from these cold tubes of delight.  It used to be super spicy foods, now its the cold.  We just keep rollin' with the punches.

{Lil' Sister}AJ has surprised us with his attention to things changing around here.  He can identify and choose his sister's voice during his speech time at school.  Be.still.my.heart.  He continues to watch her videos with us.  We don't want him to forget about her even though she's not here yet. He helped get her room ready.  He likes to play in her room, and steal her shoes.  All in all, the beginning of a beautiful friendship, I think.

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.

Intense Progress

Well, I'm exhausted.  AJ's exhausted.  And we have one more day until we can both collapse...although I'm sure he needs it more than I do at this point.

AJ has been participating in the Partners for Progress Intensive Therapy Program all this week.  Partners for Progress was started by Rona Alexander, PhD, CCC-SLP, C/NDT and Linda Kliebhan, PT C/NDT.  I've had a lot of questions about what exactly this intensive therapy week means/entails, etc.  I made sure suggest a website for the program, which I was thrilled to hear was already in the works!  For now, here is a tidbit taken from the brochure-I've added my own take on things in italics:

Partners for Progress (PFP):Is a non-profit organization dedicated to assisting children with special needs and their families in improving functional abilities for maximum independence, quality of life,  and participation in home, school, and community.

PFP provides short-term intensive therapy programs which are designed to supplement community based or school based therapy programs by targeting specific functional activity, or by working through obstacles that may have caused a plateau or regression in function. 

Short-term intensives are individualized programs specifically designed to meet the needs of the child and his/her family in moving forward.  They include a combination of physical therapy, occupational therapy, and/or speech therapy and usually involve 4 hours or more of therapy per day over a 5 or 10 day period (we are doing 5 days).

Parents/caregivers and other family members participate as partners in short-term intensives, providing support, learning and developing carryover strategies and working through obstacles that impede progress.

Theraputic Philosophy:
PFP utilizes a combined therapeutic approach maximizing the backgrounds of the experienced staff.  Neuro-Developmental Treatment (NDT), Sensory Intergration, Manual Therapy, and other theraputic modalities are combined, incorporating state of the art theory in areas of motor learning and motor control.  Regardless of the functional outcome desired, programming focuses on buildng on the strengths of the child while minimizing problems/impairments that may interfere with progress. Short-term intensives may include emphasis on evaluating the effects of adaptive equipment for seating, mobility, or exercise, and other therapeutic modalities such as taping, compression garments, electrical stimulation, augmentative communciation devices, and splints/orthotics, including their role in programming and carryover at the completion of the intensive.

Staff: Rona and Linda ROCK.  They've both treated AJ in the past. Oops, that was an adlib from me.  Whoopies. 

PFP was developed by Linda Kliebhan and Rona Alexander, experienced pediatric therapists who for over 25 years have provided direct treatment for children with special needs including short-term intensives throughout the United States.  Both Linda and Rona are an intergral part of the planning, development, and implementation of the short-term intensive progreams at PFP.  They are joined by other experienced therapists from Wisconsin and other areas of the country....

Documentation and Communication with Other Professionals:A videotape, (pictures), (Powerpoint presentation), and a written summary will be provided to the family at the completion of the intensive, highlighting the areas of progress and strategies for continued carryover.  PFP staff will also be willing to speak directly with other professionals involved in regular programming for the child, when requested by the family.

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While I won't get into specifics today, I will say that AJ is making huge progress. INTENSE progress.  This week has most definitely been intense.  For AJ, for me, and for his awesome therapists.  There are a few kids participating that are out of state, and quite a few therapists that are out of state that have gathered for this week of therapy. 

This experience has been life-changing for me as a Special Needs Mom.    I am so proud of our little man. AJ has benefited from this program, and then some.  I can't even explain it.  When we started saving for the program, which is NOT covered by insurance, I was leary.  Of course I knew it would be good, c'mon.  It's Linda and Rona.  But I wasn't sure how AJ would fit and how it would help him specifically. 

I am SO glad we saved our pennies and were able to have AJ participate in this program.  SO GLAD.

"OoooooO OooooO"

Yesterday morning began like any other morning, with breakfast and the long ride to school.  About half way there, I noticed AJ did not look right in the back seat. He looked dazed, like kids do when they first wake up in the morning.  He was also blowing gigantic saliva bubbles and saliva was slowly dripping down the corner of his mouth. 

I had to look back a few times to realize this was continuing...and rapidly pulled over.  I jumped out of the car and opened his door, peeked at his eyes, which were pointed downward (again in that dazed eyes-half-open look).  I ran back around the car and dialed the nurses station at our pediatricians office...yes I have it memorized. 

The nurse, who know's me by name, recommended I called 911.  Which is what I did after I hung up with her.  By the time I hung up with the 911 dispatcher AJ was fine...beating on his favorite vibrating turtle toy and smiling/giggling.   I think I was hyperventilating but I'm not exactly sure.  A minute later, I heard the sirens and saw the police car come over the hill.  I picked up a napkin to blow my nose and took 3 deep breaths.  I was in no shape to talk or share vital information. 

He opened AJ's door and took a peek at him, and then me, psycho crying mom.  Of course, AJ looked fine.  He instructed me to stay in the car until the ambulance arrived. 

Suddenly I was outside, talking to one EMT while one other stood by for futher instruction and the other started her workup on AJ.  He was not pleased a stethoscope was in his space.  I shouted that the right coil of his implant was off and she promptly put it back on his head, as she had noticed them before I even said anything. 

They took him, carseat and all, and strapped him onto the stretcher.  I ran to the police car and told him I was leaving my car there...on the side of the road in the middle of nowhere.  For some reason I had never noticed how far out we were are until that morning.....  I hopped in the ambulance and buckled in.  They decided to go "lights and sirens" since AJ has a history of CP.  Seizure-CP-not good.

This was AJ's first ambulance ride...and it was also mine.  Somehow I answered all the pertinent questions correctly, in between trying to stiffle my tears.  What the heck was wrong with me?  Why do I cry in front of strangers??? Weird.

They took AJ's blood sugar in the ambulance, which caused his finger to bleed the entire ride to the hospital.  He was happy, except for the fact that the EMT was holding his finger to stop the bleeding.  Thank goodness we took turtle with us....

I had conveniently parked about a mile before the freeway on ramp, so our ride into town was without complication.  It was when we got off the freeway I felt what happens when cars/drivers DON'T move out of the way.  This is my plea to all drivers: PLEASE PLEASE PLEASE pull-over for emergency vehicles.  Ambulances learch in this crazy way that I can't even describe...especially when they are going "lights and sirens" and at a relatively high speed on city streets.  I asked the EMT's if that was annoying, and they responded that it happens more than you think.  And I quote, "People are in a hurry...their morning Starbucks absolutely cannot wait." 

The look of frustration on his face saddened me.  And definitely made me more aware and want to be more alert on the road.  Then I was jolted back into the reality that I was in a freakin' ambulance, with my kid.  I was so worried about how he would do in the ambulance without me.  He couldn't even see me.  I will say though, he probably would have gotten a kick out of riding behind the ambulance...he loves lights.  The EMT's said they'd work on a transporter hook-up to the back...just for kids.

We arrived at Children's Hospital, where I learned one of the EMT's knew our house, knew Jeremy's grandparents, and was even familiar with Jer's Grandpa's horse collection.  Small world.  By the time we were at the hospital, my head was a bit clearer and felt a bit at home.

Long story short, we were there for two hours.  They decided to run labs and see if he had an electrolyte imbalance.  Ok....??  We sat around for two hours, which AJ was really good for, up until the last 1/2 hour.  Thank goodness I brought his backpack with his lunch in it.  We resorted to playing in the bathroom at the sink.  He felt just fine, was playing all over the place and definitely wanted out of our little boxed in look-at-me-glass-doors room. 

The labs came back normal and were discharged with "Possible Seizure", orders to follow-up with his neurologist for an EEG, and to give him plenty of fluids and rest.

Uh Oh.  My car was 30+ miles away.  Here I was with AJ, a carseat, turtle, a stuffed moose the EMTs gave AJ, his backpack, my purse, and our jackets.  AJ's fan club (AKA the nurses station) waved goodbye as we were walking out.  It was one of those days when I could not get a hold of anyone to come and get us.  Luckily, a friend came and picked us up and drove us to my car.  Taxi's do not drive out this far....

I was ready for a nap, but AJ was rarin' to go.  I know he was mad when we got to the ER...because it wasn't school.  Now that we were home, he was even more mad at me and had tons of pent up energy.  Now how am I supposed to get him to rest??  He finally fell asleep about 8pm, after Dad came home to keep an eye on him.  I took a hot bath and called it a night.

This morning, I thought I was going to have a heartattack the whole way to school.  I'll be changing my route for the next few days at the very least.  I must have turned around every five seconds to check on him.  Wiggling his foot each time I saw him stare off.  Panicky, tired, over-stressed Mom syndrome. 

He was fine, but it literally took me five minutes to pull away from the front of school after I dropped him off.  Driving was not my favorite activity today.   I stayed in town near his school, because the idea of driving back and forth again did NOT appeal to me.  I did a grocery shop, talked with a friend, and went back to school to pick him up.  He had a good day, much to my relief.  I took a different route home, which alleviated some of the "driving past the spot where we got into an ambulance yesterday" stress, but I was still on eggshells checking on him in route. 

He had his 4-year check up this afternoon...which of course, was clear across town. 

AJ weighed in at 25lbs 5 oz (which is a big gain) and 35 3/4 in tall (which is an entire inch taller!).  All in all a good visit.  Although I couldn't help but realize that we seem to have a pattern when visiting our peds office.  The first time she ever saw AJ, we were in urgent care the day before....which was the day we brought him home.

One of her questions was if anything had changed in our family situation...which meant I had to share Jeremy's diagnosis.  Which brought the diagnosis to the forefront of my mind for the rest of the day. 

Oh, what am I talking about?  Jeremy's has MS (multiple sclerosis).  There will be more info on this to come. But not tonight.

And this is where I fold my cards.  Where I completely fold.  No more hands please.  I may be a super mom, or whatever, I may be strong, I may be stronger than the average Jane, but seriously...Even I have limits.  AJ seems to be just fine, Jeremy is doing well, but I am burned out.  You wanna talk about pressure? Look into my eyes.  And I'm owning it, the very best that I can.  I have taken the last few days second by second.  Because honestly, that's all I can do right now.

Curves with Milk

While we were at a co-treat of PT and OT this week, AJ's PT asked what I've been seeing with AJ.  I noted difficulty walking, tripping over his feet, dragging, and trying to walk to fast. 

It is a darn good thing we got the botox in his calf.

Why is it good? 

AJ's growing.  He has been since he got the botox a month ago.  He always grows "up" before "out", so I can always tell when I'm rolling the waist of his pants and shorts, as he loses what little hips and tush he has. He usually grows slowly, which aggrivates his GI doctor but pleases both us and his PT, since it causes him less pain.  (His muscles do not stretch at the same rate his bones do, thus, PAIN).  But this time around, he's growing faster.  Faster than his normal pace.

If he hadn't had the botox he would have lost the mobility to walk.

The funny thing?  I shrugged it off.  Me!  I shrugged it off.  One because I was patting myself on the back for stopping my freak out over the botox and just went for it.  Two, because he had the botox, so we were lucky, and we can work with the challenges his growth spurt is causing.  Three, because his PT walks on water with me and I know she would never let that happen permanently.  The growing does hinder us to see how well, exactly, the botox has worked, but if its kept him mobile. t

Which brings me to the curve.

AJ's spine is changing.  If left untreated, he could have curvature of the spine.  His PT said "He WILL NOT have a curve in his spine, I WILL NOT allow it."  When she says those things (like HE WILL WALK) I know we'll be given the tools for preventing curvature and go forward.  She had to show me the change a few times before I saw it.

This did scared me, more than the walking thing. But, his PT showed me some funky back stretches to do with him, mandated massaging twice a day (which she has never ever done, she never gives me reps or whatever), and mandated Jer wrestling with him and bouncing him around with "enthusiasm".  Somehow I don't think the last two instructions will be that difficult to make happen.  Anything we can do to keep him loose and stretched out is now on our agenda.

AJ hasn't been drinking his Kid Essentials.  He's actually been drinking water.  Plain.Straight.Agua.  This is nothing short of a miracle.  That I had nothing to do with.  After finding out that AJ did drink white milk a few times at school last year, I thought it was time to make the change.  He's eating enough in his daily diet to feed a horse, or heck, maybe the whole farm. I think the "let's drink something icky and sweet multiple times a day got to him.  AND, its horrible for his already weak teeth. 

So, I checked with our GI dietician and gave her my plan of attack: whole milk with 2 TSBP Duocal mixed in, with a daily vitamin.  Much to my surprise, we got the all clear.  In case you wanted to know, whole milk is 150 cal per 8oz, each TBSP of Ducoal is 42 cal.  While we didn't reach this goal due to AJ gaining a huge amount of weight (we wish!), nonetheless, we are thrilled we no longer have to hunt for KE and can save a whole lot of money.

Potty Like a Rockstar

You'll have to imagine the bottom of this photo

 (which I cropped).

Think Tom Cruise in Footloose...on a frog potty.

I had promised to post on how we were potty training AJ, and then a friend asked for advice,

 so I figured I'd better post or else...

We've been potty training AJ since last December, just after Christmas.  I knew he'd be on break from school until after New Years, so it seemed like the perfect time to hunker down and go for it. 

When we began this journey, we didn't know if we would be successful.  With AJ's CP, we didn't know how much bladder control he had to begin with, if any, and/or if control could be mastered.  Would his muscles work correcntly to control potty urges?  We discussed this with AJ's PT at great length, knowing full well it could take up to a year to potty train AJ. 

It is now August, and we are still at it, but we're just about there. 

He's 4 people. 

Cognitively about 2. 

He can handle it. 

Would it be easier to just keep him in a pull-up? Rarely do I think so.  Honestly.

We put him in big boy undies from the very beginning.  I felt it was crucial that AJ would be able to "feel" when he was wet.  I was right, as he knows he can "go" in a pull-up.  I would much rather rinse and wash undies than change diapers or pull-ups, but thats just me.

We have never used stickers, a sticker chart, M&Ms, or anything enticing.  I'm not a big believer in that. 

We watched for AJ's signs of needing to go potty (crossing legs, grabbing) and learned his schedule.  I'm a firm believe of sticking with it. We praise him when he's gone potty.  Quite honestly, washing his hands is enough of a reward for him.

We started with a small potty on the floor (above "frog potty") and then moved on to one of the seats you can place on the toilet.  For as much as we are on the go with therapies, I knew I could not tote around a little person potty with me.   

A few weeks ago, I heard a "thud" and had wondered what it was.  AJ had gone into the bathroom, grabbed his seat and put it on the potty, stepped up on the stepstool, pulled down his shorts, and I got in there just in time to help him up on his seat.  I purposely walked into the hallway and waited.  Sure enough, he had gotten off his seat, down the stepstool and came walking out of the bathroom. 

He gets it.  He knows. 

But he's also a boy.

Who gets busy playing.

We still have accidents.

But we also have more and more days of no accidents.

He's still in pull-ups at night, but we'll get to that.

The communication is what we are working on mostly.  I know when he has to go.  But we're looking for that response when you say "AJ, do you have to go potty?" and teaching him the sign for potty.  We're also still working on getting him to shake his head yes.  He'll shake his head "no" about 50% of when we ask him to say no, so we're almost there.  Sometimes he'll give you a cheesy grin after you've asked if he's got to go, and that means "yes, I'm cute and need to go potty."  This morning I got an arm lift when I asked if he had to go, so we're close.  My goal is to get him to answer consistently...so that when he goes back to school, he can communicate his potty needs.

Potty Like a Rockstar, AJ!

Undoing the Undone

AJ has not had physical therapy since March.  His state insurance decided, for some reason, he was doing fine without it and flat out denied more visits.  When he had his cochlear implant surgery in May, AJ's PT resubmitted for more visits-thinking it would be a breeze to get post-surgery visits. Not to mention, AJ was not going to be receiving PT from school over the summer, so we thought it was a slam dunk requesting more visits. Your thinking what does a cochlear implant surgery have to do with PT?  A LOT.  Allow me to side-track for a moment.

About two weeks after AJ's first CI surgery, he got really sick.  We spent a few hours in the ER waiting area, mind you with my child's head and exposed surgery site around all these sick kids, and finally got into a room, where they gave him fluids and sent us home. Dx: virus.  He went limp, lethargic, and all around scared the hell out of us.

You can imagine our delight when it seemed like this was NOT going to happen this time post-surgery.  Well, it did.  It was the day after his IEP meeting.  A Saturday nonetheless.  We all know how difficult it is to get a hold of medical staff on the weekends.

Long story short: vertigo.  Not a virus.  Apparently it is common with CI surgeries, with kids it happens later (not immediately post-surg) because kids heal slower than adults.  We did not go to the ER.  We spent a lot of time on the phone.  He was back to himself within 2 days.  But let me tell you, the limp, lethargic, scariness was all there.  He stops walking, this time stopped moving all together.

Who do you think my 2nd call was to?  AJ's PT.  To make sure she was on board in case this totally knocked him for a loop. 

We were recently approved for 6 (not 8) visits from now until December. Which is crap.  In a previous post, I had mentioned something was better than nothing, so we initially chose to take what we could get.  AJ was enrolled in a summer tumbling group that his PT was teaching, so we were glad he'd see her during that time, in addition to our once a month visits, or whatever.

For the first time since March, AJ's PT treated him last Friday.  And it was NOT good.  How do I explain this?  He's in really bad shape.  His left side is SO tight its causing him pain and discomfort.  Between his tone and new exposure to sound through his new CI, ufta.  He has not been a happy boy.  His PT worked on him while we discussed a plan of action. 

I was literally crying inside while she was talking.  Tears of joy that she finally had her magic hands on him again.  Tears of anger at his cerebral palsy for it making my little man feel pain and discomfort.  Tears of anger at the stupid state insurance who thinks he doesn't need therapy.  At 3 years 11 months and 25 days old.  Seriously?  Tears of sadness and anger toward myself for letting this happen.  For not advocating and pushing harder for him to have more therapy.  AJ slept 4 hours after that PT appointment.  HE NEEDED THE PT, and NEEDED THE REST.  He woke up and was happy, and relaxed and ready to go.

She said the word I think I have found a hate for, and I don't hate much, people. 

REGRESSION.
 
AJ has regressed. 

He's extremely tight and his left foot is turning in so much we can't seem to get it straight.  His PT also thinks its time for Botox.  Sigh.

Our plan of action:
We will use the 6 visits from the state insurance, but are appealing in an effort to receive more visits.  We are also filing a grievance with primary insurance (through Jer's work).  When AJ "graduated" from the Birth to 3 program, his PT and OT both submitted to both insurances to allow AJ to be seen at the clinic vs. home.  (Home visits stop after age 3)  Our primary denied right away, stating it was not medically necessary.  But the state approved, so we moved forward.  Hopefully, our primary will take a look at AJ's case with a bit more detail and reconsider.

Once we use our 6 visits, we will begin private paying for phyical therapy.  Sigh.  AJ's PT would like to see him at least twice a month.  We're going to make it happen because AJ NEEDS IT.  Actually he's beyond needing it at this point.

The tumbling class we were so excited about?  Was cancelled.  The class cannot be run with only two kids enrolled.  Would it be inappropriate for me to go knocking on the door of the parent who pulled them out of the class and ask them to come back?  Please?  My kid needs it! 

We are also doing a massage regimen with him.  I do it AT LEAST twice a day.  We are very lucky that AJ does not mind the deep pressure massage.  We have a list of things to do with him in effort to help with length and separating his ribcage from his shoulder.  He just wants it all tucked up in there so nicely.  Not good.  We're also going back to ball work, which is helping a great deal as well.  Except, we've learned he's been rolling back and forth on the ball on his back at school.  Now I'm finding him arching, yep, I said arching backwards over his pillow.  NOT GOOD.  He does NOT need to start hyperextending backward again.  NO. 

Undoing the undone.  I hope we are successful.  We have had 16 appts so far this summer.  Next week AJ will see his CP doctor, and the decision on Botox vs. no Botox will be made.  I don't know why, but Botox scares the hell out of me.  In the meantime, we're just trying to keep AJ loose and pain-free.

Stick Figures and Velcro

Grab your coffee, caffinated soda, or a whole pitcher of strawberry margarita and settle in.  This one is a long one...taking me a few days to finish!!

PT: We switched up AJ's kinescio taping.  We were taping from the inside of his foot, around the bottom, up the side, almost to the knee, on both legs.  We were also taping an "upside-down V" above his tush running diagnonally down the top of his tush to the sides of his thighs. 

Sometimes his AFOs and shoes get wet when we don't get to the potty in time.  More than once I have picked him up at school with just socks on.  I mean, clothes and socks.  Meaning no AFOs or shoes.  Just to clarify.  By the time I'd get home, AJ would have his socks off (which was a given) AS WELL as the kinescio tape.  He also started pulling the tape on his thighs while sitting on the potty.  Seeing as the stuff is $18/roll and we use a roll in about 2 weeks if I really stretch it out, this was a big.BIG.problem.

We've been taping him using one long continuous piece-12 squares worth.  The tape comes with a background (white non-stick paper) that has lines/squares marked.  That way I know exactly how much I need each time he needs to be retaped.  We tape from just over the right shoulder, diagonally across his back down to his tush (creating 1/2 of the original "V") on the left side, and wrapped around his left leg, ending just below the back of his knee.  It seems to be working well.  We took a break from taping for about a week, as AJ had scratched himself pretty good where the tape started at his right shoulder.  We gave it time to breath and heal with the help of some triple antiobiotic ointment.

AJ continues to LOVE the treadmill at the clinic.

Last week he did his record best: 10 minutes 17 seconds! Part of that time he spent walking on his hands.  By his choice, not his PT's.  None of us opposed this momentus activity.  He's alternating legs while going up the stairs and actually prefers to hold your hand and step.  His biggest gain: he rolled a ball-multiple times-back and forth across a table. 

We continue to work on balance, stairs, kicking a ball, and jumping.  He's able to get off and on his bed without a step-stool and climb up and down the 2-step stepstool.  He can squat and pick things up better than Jer and I can sometimes.  AJ can walk the entire length of the hallway from his classroom to the front doors of his school, out the door, and up the 6 long stairs up the hill to street.  One of these days I need to remember my camera and video him. 

The only concern we have at the moment is his "cute" floppiness.  The kid knows he's cute.  Often, when you are walking with him, holding one hand, he'll noodle.  And you're left holding him like a corkscrew.  Its really not safe.  He knows you'll hang on to him.  This is a concern and also dangerous since he things its "funny".  He's taken a good number of spills in recent weeks.  He must learn to hold his own body weight functionally. 

OT:  We have increased AJ's constraint therapy to 1 1/2 hours a day.  I'm so thankful he doesn't mind it.  We've had a few questions regarding his constraint therapy....
 
We do this at home ONLY.  We bought the cast outright instead of submitting to insurance and waiting for denial.  Getting online, going to Sammon Preston, clicking "add to cart" and the cast arriving on my doorstep was much easier.  We call it his "Bubble Arm" but its really called a Urias Pressure Splint.  We ordered a child size-16 inches-so he has plenty of room to grow into it.  It was $56 + shipping.  Note: You need a Rx (prescription) in order to do constraint therapy!!!!

His fine-motor skills have improved dramatically.  Occassionally he'll use his right hand only to grab and hold his juice box, just because he's a kid and thats what kids do.  But overall, he's using his left side spontaneously and crossing midline (reaching across to his right to grab something with his left hand).  Crossing midline is just as exciting as when AJ came to midline! 

The other day he put the cap back on the Tylenol bottle.  I was amazed he just knew where it went, and then when it set it on top, I was shocked.  Dare I start probing him to see if he can match things that go together?  AJ is also bearing weight on his left side while side-sitting and is actually using his left hand to help him climb onto things, rather than tucking it under his body and only using his right arm.

Physical Medicine Follow-Up {CP Doctor}: AJ saw his CP doctor at the beginning of february.  Usually AJ's PT comes along so we get the "professional courtesy" of not waiting a good 2 hours to see her.  This happens even when there isn't anyone in the waiting room.  Boggles my mind.  Anyhow, his PT couldn't make it so I was prepared with snacks, toys, activities, galore.  The time from the waiting room to the exam room is quick, but the time in the room can be plain ridiculous.  Especially with an ancy 3 1/2 year old. 

We only had to wait a half hour!  I was so excited.  I was shocked and humbled by the nurse placing us in a room with a regular exam table.  It wasn't the usual room with the therapy table (I call it the bed).  It was a gentle reminder that my little man is indeed, mobile.  He CAN move his body.  He CAN walk.

AJ and I sorted sssssocks and sssssnakes on the floor while we waited.  I even got the chance to educate the nurse on cochlear implant.  She was very interested and I was happy to oblige. His CP doctor was very impressed with how he's doing.  She gave us the prescription for constraint therapy and said no to botox.  Yes, I said botox.  How does botox work in patients with cerebral palsy? Given in small doses, the botox relaxes the muscles and reduces stiffness. Less rigidity, less spasticity.  Botox treatment in CP patients is still controversial.  Sounds like CIs in the world of hearing loss, hey? AJ has enough rotation in his foot that he doesn't need botox right now.  We'll revisit the idea in July at his next follow-up.  

The concern is his left foot and how it continues to turn in.  She watched him walk barefoot multiple times and noted that it doesn't turn in all the time.  I thought that was interesting.  It turns in, then straight, in, then straight.  She suggested continuing taping (as long as its working), continuing the exercises and deep massage, and showed me where to watch for stiffness in his foot.  We finally heard the results of his baseline x-rays, done last fall.  Results were normal.  Whew.  Hips, pelvis, and all that jazz were just fine. 

We discussed speech therapy, she was shocked he wasn't in therapy outside of school.  She saw no reason for us not to approach insurance with the need for speech therapy for medical reasons, not the whole hearing/listening/speaking component.  I shared "the news" with her (see "the news" below in CI subject header), to which she wrote me a prescription for speech therapy 4-5 times per week for the summer.  *Smile*

Neurology Follow-Up: Fantastic! AJ is progressing nicely.  His neuro was not concerned about his development, he thought he was doing phenomonally well given all that he has overcome.  So as far as development is concerned: Poop on you Mr. Development Specialist who only sees my kid once a year. He also was shocked AJ was not in speech outside of school  Ugh!!!!!!! Frustration continues to build.  Can you tell?  He made sure to write in his report that AJ should be receiving speech for medical reasons. 

AJ's head grew, which means his brain is growing appropriately.  This is always our biggest concern at the neuro. AJ also weighed in at 23 lbs 6 oz, which thrilled me.   I know what I say about different scales, but I'll take it!  All in all it was a great visit.  We got another free pass to come back in a year. 

CI 9-month Follow-Up:  His CI Audi did an ESRT (Electrical Stimulus Response Test) instead of regular audiogram.  The ESRT consisted of a small probe (like the ones they use with tympanometers to do tympanograms on those with hearing loss).  The probe was connected by wires to a cuff  that his audi wore around her arm. The wires continued from the cuff to the machine his other audi was running.  The point of the cuff is to keep the wires as still as possible.  Each time the probe was placed properly and the test was running as is should, the light would be green.  If he moved or the probe came out just a slight bit, it would flash orange. 

Movement screws up the results.  Fanstastic for a 3 1/2 year old.  Who doesn't like movies.  And doesn't have patience for toys that don't work or a lack of bubble juice.   Moving on....  All in all he did do very well.  They were hoping to test 2 of his electrodes, they got 7!  The ESRT gives them a better idea of where AJ's sound threshholds are, since he's not the greatest booth tester.  He was given a new map, which he needs to try out for at least a month.  It's working like a charm!

And "the news" is: AJ is getting his 2nd cochlear implant.  His left ear testing is coming up soon and we'll meet his surgeon at the end of next month.  I'm still sad his original ENT/Surgeon isn't with CHW anymore.  *Sniff Sniff*

If things move as they should, he should have his implant surgery this summer.  We are pretty sure AJ's primary insurance will cover (as I've already spoken to them about it multiple times), but unsure about T19.  They haven't been responding to CHW very quickly.  That's ok.  If we need to, we'll fight 'em till we win-again.

T19/Medicaid:  We were still waiting on the PA for the speech that was ordered following his swallow study. Yeah.  Needless to say the PA request was cancelled as we are moving in a different direction (see speech subject header below).  We also received our yearly packet of forms for his state insurance.  This year requires a home visit.  Which doesn't really make me nervous, as I know he'll qualify, but I still have this pit in the bottom of my stomach about it.  Having T19 as AJ's secondary insurance has been such a blessing, the paperwork is beyond worth it.

School:  I don't know where to start with this one.  We had a wonderful "pow-wow" with AJ's teacher a few weeks ago.  It.was.awesome.  We were able to review the communication assessment she and his school SLP did following the video assessment for the emc3 curriculum. AJ is at what I would call an in- between stage with his communication.  He's mostly using gestures or movements to communicate.  Our goal is to move him toward symbolic communication.  What is symbolic communication?

The biggest thing I took from that meeting was answer to my question of "Why?".  Ok, one of my answers to my many questions of "Why?"  I've always been confused as to why, even though AJ's been exposed to sign language since 18 months old, he's still not signing or communicating.  His teacher LITERALLY drew a stick figure to represent AJ.  We figured out how old his eyes are.  How old his "ear" is.  Where is his hand function (fine motor)?  His walking, etc. (gross motor)?

I had this moment of clarity. 
Ear: 10 months
Eyes: 8 months
Fine Motor: 18-24 months
Gross Motor: 14-15 months
*Motors are estimates, they change and don't account for his scattered skills in higher functioning areas

AJ is truly all over the board with his skills. And that's OK. I'm working on a nice drawing of him as a stick figure, holding these numbers.  I'm going to frame it.  To keep my line of focus. And as he changes, we can change the numbers.  I'm thinking this will be a positive thing for all of us.

AJ's teacher also had the Waukesha School District Vision Specialist come and hang out with AJ.  I happened to run into her a few days later while picking up AJ from school.  It was wonderful to chat with her in person.  She felt there was no issues with his acuity (picked up a grain of white rice off the tray immediately).  However, when presented with pictures, he just picked them up and played with them like a toy.   If something didn't hold his interest, he'd zone off looking at the lights or around the room. Typical AJ.  She wasn't sure about the pictures, if he just wasn't developmentally ready, or it was something else. 

On my drive home that day, I had an epiphany.  AJ was really never exposed to pictures.  Like, here's a picture of a ball, truck, and apple.  AJ, where's the apple?  He couldn't hear! He couldn't see properly!  There was one book with pictures he loved, but it was a chipboard book with 9 pictures to one page.  He was fascinated with the food page.  He wasn't exposed to books or pictures continuously unitl he was home here with us.  We just never did the picture book thing.  I know, bad Mommy.  Bad Daddy.  But honestly, AJ was so trapped in his little world, there were some things that we just didn't do.  He's just now enjoying books and beginning to continuously visually attend to them.

I shared my thoughts with AJ's teacher about his limited exposure to pictures.  I also shared how he loves his "AJ" and "Family" experience books.  Those have pictures of him doing his daily routine and pictures of our family.  Picture concepts : On My To-Do List.

We had AJ's parent/teacher conference this last week.  Things have changed.  Oh, have things changed.  It's simply wonderful.  We heard from AJ's PT, OT, and SLP at school.  After probing AJ, it was suggested that we begin helping AJ communicate with the use of physical objects.  We had discussed a switch or picture boards, etc. before, but it was agreed that this would be the most beneficial place for him to start. 

The awesome thing?  He's already doing it!  The day before the conference, AJ went into the garbage (it was uncovered) and grabbed a tv dinner box.  He brought it to me.  Translation: Mom, I'm hungry.  Wednesday, he brought me a fork.  Translation: Mom, I'm hungry.   Today: He brought me his coat.  Twice. Translation: Mom, I want to go bye-bye. 

The idea is to pair an object with an activity or items in his daily routine.  I was able to watch AJ communicate using this technique with two vibrating toothbrushes (lets call them VT A&B)  at school. His SLP held VT-A (vibrating) behind his CI processor.  He heard it, located (non-vibrating) VT-B sitting the table in front of him, grabbed it, and handed it to his SLP, who then said "Oh, you want the toothbrush", giving him VT-A (vibrating).  This can be used with just a single object, or two. 

We have been struggling and struggling to figure out a way to help AJ tell us when he has to go potty.  I think for both Jer and I, as well as his professional staff, it is one of the most frustrating things right now.  Not in a bad way, but I know its on all of our minds.  His teacher came up with using a travel pack of wipes.  GENIUS!  We keep them on the end table in the living room.  When we go potty, we take him to the table, grab the pack, walk to the bathroom, make sure he can visually attend to it at some point when he's in there, then take it with us back to the table when we're finished. We've decided to do 4 of each object (well, for most of them).  One for home, one for in the car/out and about, one for school, and one for 'Drama's house.  I've washed one of each of  AJ's empty milk, juice, and water containers.  We will velcro those to the front of the fridge. That way, he can go and grab what he wants and tell us what he wants.  It also increases his exposure to making choices. 

We still have a list of things, like how do we represent bedtime with an object, and multiples of the same object.  We need to keep these items in the same place all the time, so he knows where they are.  All in all, we are very excited, as he seems to be picking it up quickly.

AJ is interacting more and more with his peers.  They had snowcones for snack last week. I watched, from afar, how he did during the entire snacktime.  He watched the other kids as they ate their snowcones.  He heard one of his peers, when she spoke rather softly, and was 3 seats away from him. He turned to her immediately.  He attened to the blender when it would turn off and on. He participated and displayed patience when they felt, scooped, and blended the ice.  He's become more and more...of a big boy. And I absolutely love it.

I did see how easy it is for AJ to loss or not give visual attention in his school setting.  No matter what communication mode you choose, visual attention is required for all learners.  I'm not talking about lip or speech reading or any of that.  You kinda gotta look at what your doing, right?  Sure, I could tie my shoe now without looking and probably find success.  But when learning, you have to look at that big wooden shoe cut-out and look at where you are putting the laces.  AJ struggles with that idea.  And when I realized his eyes are only a few months old, its all making sense.  His teacher is anxious to hear what AJ's eye doctor has to say. 

Eye Doctor:  We finally have a follow-up scheduled again.  That office must think I am an awful parent-with our cancellations and rescheduling.  Oh well.  Life happens, and I always given them plenty of notice!  I'm anxious to see what she says as well.  This is techically a post-op visit.  She'll be filling out a referral sheet for AJ's teacher, so I'm trying to remain positive.  No matter the outcome, I can only see the information as being helpful, not harmful.

Speech:  After much discussion between Jer and I, AJ's teacher and SLP at school, AJ's former SLP(s) at CHW, his CP doc, his neurologist, and his private PT and OT....AJ will be receiving outside speech and feeding therapy from HealthReach Rehabilitation (the same clinic his PT/OT are).   We have his initial evaluation next week.  The SLP we have chosen is phenomenal.  I have seen her treat firsthand. Multiple times. I believe she is going to be a great fit for AJ (and me). 

To top that off, AJ is going to be eval'ed by another world renowned therapist.  I literally have chills about this.  Some of you may remember that AJ was treated by another rock-star therapist, TWICE.  She is  a PT.  This time, its an SLP.  Jer and I, as well as AJ's entire team, are thrilled about this opportunity.  I can't wait to see what she has to say!

In Other News: AJ continues to do well with potty training.  He averages one accident per day.  Over the last two days, he's gone to the potty and sat down on his own.  This is a huge gain! He did it again this morning and I just had my mouth hanging open.  **Update: This afternoon he walked into the bathroom by himself, closed the door, went and sat on the potty (after he sort of tried to pull down his undies) and went potty!  All by himself.  *BIG CHESTER CHEETO GRIN*

We will be posting information regarding the first HLAA Walk 4 Hearing here in Milwaukee in May.  We have created a team and will be walking for AJ and to help spread awareness about hearing loss.  We hope you'll walk with us or donate! Stay Tuned! 

We are submitting a scholarship application to the AG Bell Convention in Orlando, FL in June.  We are hoping we will be approved and will be able to attend this fabulous national convention.  Wish us luck!

We are also in full swing, planning AJ's 4th birthday party.  Am I the only person who thinks there is a huge difference between 3 and 4?  It's going to be a 'sports theme'.  Hm, I wonder why....

Our house is no where near ready.  So much for our goal of March 1st.  We'll get there, right?

I was asked to be on the committee for the Center for the Deaf and Hard of Hearing's annual fundraiser "Tasting Tuesday".  I am so excited!  Our first meeting is this week and I am hoping to contribute as much as I can to this event. 

I think that's enough, don't you?

An Intense Blur

PT: For the last few PT sessions, AJ's left leg has been considerably tight. His PT is concerned about this, as are we. She was instantly able to tell we had a lot of family things going on over Thanksgiving weekend and didn't get as much massage in as usual. Unreal. AJ has been growing, as he is all legs right now. Even so, he's due for a HUGE growth spurt. We are not thrilled, to say the least. AJ has and will continue to have severe growing pains. It is possible he will lose the ability to walk. We knew this was a possibility, but have a different outlook on it now that its staring us directly in the face. He continually amazes his PT by his ease with standing back up when he falls down even when his tone is kicking in.

We have a plan of action. We are....oh, whats the word. Avoiding? Maybe. I guess we'll go with that. We are avoiding intervention at this point. Meaning, we are doing what we can before turning to botox or surgery. We have increased the width of his kinescio tape, which is working more "magic". We are massaging him, as much as possible. Even when I carry him facing forward, I'm massaging his hammies. We are also continuing the regular exercises, such as the "foot wiggle" and "runner's stretch". We have created bolsters (for him to climb over) out of round oatmeal containers and duct tape. We have made balance beams out of cardboard. We are tossing a preferred item (as bait) and having him crawl over us to get to it. WE MUST KEEP HIM MOBILE AND AMBULATORY. Don't get me wrong, it is terrifying to hear someone say "Your son may stop walking." But I am thankful that we have asked the right questions and kept ourselves in the loop regarding AJ treatment. That makes it a team effort, and a bit less scary.

AJ's CP is a tricky thing. Because his CP is mild, it can often seem non-existent to an onlooker. People often forget AJ is 3.5 years old. He doesn't move around like a typical 3.5 year old. Just because he is walking, doesn't automatically mean he will continue to walk. Will Jeremy and I do everything we can to keep him mobile, absolutely. Are we confident we can do so? With the help of his PT and physical medicine doctor, absolutely. As AJ grows, this will be a constant battle. For some reason the magic age seems to be 15, so maybe that will be his last growth spurt. PT/OT sessions are on Mondays, so I'm anxious to see what they have to say tomorrow. I think his tone has improved over the week, we shall see.

On a positive note: AJ is getting out of bed with ease and much faster. He can climb off the couch at the speed of lightening. I also witnessed him doing the "Captain Morgan" stance, with his right foot on a box and his left straight on the floor holding his body weight.

OT: AJ has been posturing A LOT lately. What is posturing? When he sits on the floor with his legs out in front of him, the left leg is slightly bent upwards, so it is not relaxed (think upside-down "V"). His left arm also seems to pull in to what I call "typical CP hand placement". I've found us using his Benek hand splint a lot more and catching his thumb resting under his fingers. Not good. We're keeping an eye on it, stretching and massaging his arms as much as possible and doing lots of fine motor (finger friendly) activities. Currently, OT's focus has been dressing. Which is going, eh, so-so. He can definitely take things off, like hats, mittens, shirt (if you bring it up to his shoulders), pants, and socks. He tries to help with his AFOs and shoes. He's getting better at "ripping" the velco straps back on his AFOs when its time to take them off. A lot of hand over hand at this point, but he gets the concept. He's struggling with jacket skills. We've added rings or small key chains to his jackets so he can learn to pull up the zipper himself. I'm thinking about making him a felt board with snaps/velcro/zippers on it, just to practice. He still hasn't got quite enough balance to be able to pull his pull-up or pants down himself in standing position. He can get his pants off sitting down, fancy that.

AJ learned (after just 2 hand-over-hand experiences) to give his Daddy HIGH FIVE! YAY!! Bonus-he can do it with both hands. Bummer-he only does it for Daddy.

He showed he could reach his left arm (solo) above his head, straight, without his body being in a funky posture. I was amazed. He picked up corn from his corn bin and sprinkled it down on himself. With his left arm/hand! He can do it with the right too, but whatever. :) He's also starting to put puzzles pieces in (not in the right spots, but its effort) after he's taken them out. He also stacked 5 blocks on top of a tower of blocks already 8 blocks tall. And it did not fall. His reach and placement was that controlled.

Speech/CI: We have our first non-cooing sounds! AJ said "AH" and "OW" (as in ow, I cut my finger) on Wednesday during his speech session at school. Since, we've heard both sounds A LOT. He was definitely playing with his voice today-just to hear himself "talk". He's also starting to move his mouth to imitate-or try imitating-your mouth movements. Its hard to explain. Its different, but at least we know its a good different!

We spend Black Friday afternoon at Urgent Care with AJ. Diagnosis: Double ear infections. He's been ripping his implant off, so this may have played a factor. Well, we know it did for a short time. Certain tones of voice, loud noises, or the dogs barking were really bothering him. Then he displayed the classic signs and we knew it was an ear infection.

He's still ripping off his implant. Its a behavior thing. He's getting a power trip from knowing if he pulls it off he gets something from it. Grrrrrr. It has decreased, so thats good. I think he only did it a few times today. Add this to the list of things we are keeping an eye on.

School: I never did write a separate post detailing AJ's IEP review meeting and parent/teacher conferences. Our IEP review meeting went well. One change was made to his IEP: AJ needs 1:1 instruction at all times. Best of all: His IEP allows him to attend Lowell until June of 2010. Ironically, Jeremy and I were thrilled with this news. We were a bit concerned we'd have to meet every quarter and have the same anxiety three more times. Other's didn't seem so excited. There is no "pass" that will just allow AJ to continue attending Lowell. Actually, there is. It's called MOVE TO WAUKESHA. At least four other kiddos and their families in the TC and AO programs at Lowell have moved to Waukesha from other school districts to make sure their child can attend this program. IT IS WELL WORTH IT.

Our parent teacher conference was helpful. AJ's school SLP, PT, and OT were kind enough to attend our conference with AJ's teacher. We left with many strategies/ideas/activities to help bridge AJ's learning at school to home. I had to pinch myself that night though. Am I really a Mom, going to my son's first parent teacher conference? I guess so.

AJ seems to be paying more attention to his peers. He's doing something new every day. Transitions from activity to activity have once again become difficult. We are working on strategies with the school team to make these transitions smoother again. I am so thankful his team at school is patient, kind, and understanding. Although it is hard to hear he had a bad day, it is reassuring to know that he is with a team that will wipe the slate clean and start anew the following day.

Feeding/Speech Therapy: We have another follow-up appointment next week at the GI Clinic. My stomach is already in knots. Not only just because its another weight check, but because he had ear infections, which caused a lack of regular appetite and liquid intake for a few days. I'm not going to lie, I am genuinely freaked out this time. We are waiting on the report to be written regarding the results and recommendations per his swallow study in early November. Once we receive an OK from insurance, we'll beginning feeding therapy again. Currently, I'm considering buying stock in Z-Vibe batteries.

Social/Emotional/Cognitive/Language: As I mentioned above, AJ is paying more attention to his peers. He knows what walking down the hall means at school-time to go to the doors and go outside to find Mommy. He made the connection between a soft-plush vibrating turtle and Daddy's XBOX-they both have a vibration so he put the turtle on top of the XBOX. He knows the auditory cue for "sit down". He has signed "eat", "please", and "bath" (approximation sign). He is playing with his voice. His memory skills improve daily. He knows both how to wash his hands at the sink and how to wipe his hands off on a wet towel. He holds his hands up for a dry towel when you tell him "all done" with washing hands. AJ's emotional responses have become different, with more variety. He understands the auditory cue "ah ah ahhhh^hhhh" (You know, when you reach for the hot stove and your Mom would say "ah ah ahhhh^hhhh"?? That.) That amazes me, as its not even a true "word" cue.

I'm sure there is more that I am missing. Let's face it, these days, my brain is a fuzzy blur. But I think thas enough paragraphs to supply the jist.

This time of year is always hard. It sort of hit me unexpectedly this time around though. AJ was diagnosed with bilateral profound hearing loss on 11/28/07 and cerebral palsy on 12/5/07. Two years ago, my Dad passed away shortly after that neurology appointment when we received the CP diagnosis. I found myself crying over cheeseburgers while driving AJ to school last week. You'd have to know my Dad to understand that last sentence. I wish my Dad was here to giggle at my perfectionism, tell me to keep things simple, and reassure me that everything was going to be OK. He was so good at that. That whole period in our lives is so vivid yet so out of focus. An intense blur. We all made it through, somehow, as I'm sure we'll make it through these anniversaries. Not much to celebrate per se, but certainly memorable moments in our lives.