Raw

Three weeks ago we were sitting in church listening to the second talk in our church's "Suffering: You Are Not Alone" series.  This series was incredible right off the bat.  Let.me.tell.you.  But this particular week was eye opening for me on two levels.

Did you know that we moralize and minimize suffering?  It's all relative, right?  I find myself judgemental when I hear someone else moralizing another's suffering.

Well, at least its not as bad as Jackie's story.  
Or Ken's life.  
Or, hey, did you hear about so-and-so?  Now that's tragic.  

And the minimizing:

There is always someone else worse off than you are.
There are starving children in ________ (unfortunately, there is a choice of countries here).
The chemo's really not that bad.
So you lost your brother.  It's not like you lost your wife or child.
Oh, you'll be fine.

Or my favorite....absolute SILENCE.  If I say nothing, it doesn't exist.  

I sat, mulling over these approaches to suffering, when suddenly our Pastor asked for a show of hands as to how many people have been diagnosed with a terminal or chronic illness.

My.husband.raised.his.hand.

MY HUSBAND.

Not the stranger two pews over. Not Nancy's third husband. Not so-and-so's father.

MY HUSBAND.

I placed my hand on his lap as he raised his hand.  As his hand raised, my tears began to fall.  And fall. And fall. And fall.

{For those of you who are new readers, Jeremy was diagnosed with MS just short of 3 years ago}

I am blessed, beyond belief, to have a stubborn husband.  Without his steadfast stubbornness to kick diabetes and MS in the rear, I think I'd have a wet towel schlepping around this house.  Jeremy does not schlep.  The journey to his diagnosis was a rollercoaster.  A wasted ER visit, countless tests, a spinal tap, IV treatments, failed medications and too many unknowns to count.

I sat, as my husband had a needle shoved in between his spine and awed at his ability to be logical and stay still with all the unknowns before us.  I turned my head to fight my tears.  I drove many miles in tears, praying to God that something would change and that this was not happening. I held his hand and gave him quiet assurance that we would handle whatever was to come.  I answered the doctor's questions when he could not. I watched him attend his son's birthday party, clearly in the clouds, realizing a year later that he wasn't able to remember the event.  I watched him go through two agonizing trials with different medications, both of which had more side effects than positive effects.  I watched his anxiousness before MRI appointments and slightly lose his balance on rough days.  I learned to read his symptoms with him speaking a word.  He downplayed everything to everyone else, but as the other half of this crazy partnership, I knew.

We are so incredibly lucky that his MS is slow-progressing.  His medication is working.  We take things one step at a time and pray.  A lot.  We pray in thankgiving.  We pray in need.  We pray for certainty and guidance.  We pray for blessings.

But in that pew, I was faced with the raw- and it was rawwwwwwwww- reality that my husband has multiple sclerosis.

And there is nothing I can do about it.

Me.  The doer.  The fixer of all things because I am the wife, mother, woman.  This.is.what.we.do. As much as we are blessed and lucky that things are stable, it doesn't take away the bold reality that he has MS.  We're a little spoiled by his success with the disease.  It makes it easy to forget about the disease's possibilities. In that moment, I wanted to curl up next to him in our bed at home and lay for days.  Just.be.  In all of this life's craziness, I wanted to just.be.  And use a wand from Harry Potter to create a bubble charm so that I could protect us from further craziness.

I spent the next few days emotionally exhausted and thankful for the jarring reminder.  I think I truly needed that.  We are living proof that this is doable.  We are thriving in the midst of suffering.  We both give each other a learning curve and do our best to respect each other as we plod through this diagnosis.  I try not to minimize when talking to others.  I try really hard.  I don't know how he feels, physically or how he feels completely on an emotional level.  Men are hard to crack in that department.  I do know that he has shown more strength and grace than anyone I've ever met.  I love him more than I ever could have imagined when we met 16 years ago.  Yeah, I'm all mushy.  Deal with it.

Sometimes we all need to be faced with that raw reality.  Jeremy has chosen to thrive in the midst of his suffering.  I admire him and am proud to call him my husband.  He was bold enough to share his story and the choices he's made in the face of chaos.  You can view his story HERE.
{If you do not want to watch the whole thing, start at the beginning and watch through 6:15 and the second part from 21:15 through 23:00}

“’For my thoughts are not your thoughts, neither are your 

ways my ways,’ declares the Lord. ‘As the heavens are 

higher than the earth, so are my ways higher than your 

ways and my thoughts than your thoughts.’”

Isaiah 55:8-9

Let's Get Physical

You know, this school year has been very, very interesting.  Interesting and full of surprises, causing our family life to become extremely flexible.  AJ has had a rough year thus far physically.  He's doing INCREDIBLE in school-as in this is the best year he's ever had!  Way to go AJ!  But, as we special needs parents know, when one area gains, another area gets jealous, throws a pity party and stomps it's feet.  Well, not really-but you know what I mean.  When one area sees gains something else regresses a bit.

We knew his body would go through a large growth spurt between the ages of 4 and 7.  Oh, that couldn't have been more accurate.  His school schedule this year has him attending 5 hours a day.  His start time, which was moved to a later time in the first place, I know tell people who ask, "He starts at X o'clock, or whenever he wakes up".  I have cancelled, rescheduled, and cancelled again so many appointments, plans with friends, and just plans in general that I've lost count.  And honestly, I'm just used to it.  If you would have talked to me 4 years ago, I would have been angry at myself and the world for something not working out.  But, I've learned that life needs to be flexible, and if I have to cancel, I have to cancel.

He has fallen asleep at school a lot this year.  He's had several seizures cycles, illnesses, and days where he is just too weak to function.  We have had two seizure medication changes already. His sleep his been horrid and without pattern.  If you would have asked me a week ago when the last time was that he slept through the night, I couldn't have told you.  He was so tired, yet couldn't sleep.  This caused him to get bored, and agitated, causing him to continually take his pajama bottoms and pull-up off and pee on his bed.  Several times a night.  Sigh.  

As a parent, I feel helpless.  Because for AJ, growing is NOT fun. Several weeks ago I walked into school to pick him up and was lead to one of his classrooms by his assistant.  He was sitting on the floor and refused to put his coat on.  Anytime we'd try, he'd scream out in pain.  Anytime we tried to have him stand up, he's scream in pain.  Another day, I walked in to find him sitting on the large rug by the school office.  He was in so much pain standing, he wouldn't put his left leg down and bear weight on it.  I've had several chats with his school staff about his aggression.  He has no other way to tell us he's in pain.  

Why so much pain?  Because he has cerebral palsy.  When he grows, his bone grow, but his muscles don't follow as fast because the brain isn't sending the message that they need to stretch.  Insert PAIN.  I'm taking him for botox injections regularly now.  They are supposed to last 3 months, but with AJ's super-hyper metabolism we are seeing it wear off sooner.  He had his last injections (4) in his left leg three weeks ago.  

That weekend he spent an entire two days in bed with high fevers and a wicked cough. Have you met AJ? He's like a superball.  This is rare. I kept him home from school that Monday and even Tuesday.  He felt better on Tuesday, but not well enough to make it through an entire day of school.  I thought we'd take a drive, just to get out of the house.  Well, the botox had kicked in-add that to his general tiredness and he fell face first onto our driveway.  He busted his lip and his top three teeth pretty good.  

We spent three hours in the ER-where they did absolutely nothing-and headed up to see his dentist in the dental clinic.  He has subluxation.  We are now a week out from the incident and still watching his teeth.  He's on a soft foods diet until further notice-which has been interesting to say the least-and those teeth are wiggly.  We're doing our best to avoid infection and tooth death.  I'm thankful they are baby teeth!  Our biggest challenge?  Well, two challenges.  Getting the blasted oral antiseptic on his teeth and limiting his oral stimulation/bite & chew therapy toys.  Really hard to do with a child that gets so much organization from his MOUTH!

Two days later he spiked another fever and his cough was considerable worse, so we headed to the pediatrician.  Viral bronchitis.  Viral won't respond to antibiotics-so, and I quote, "Just let it run its course."

Wonderful.  Thankfully, AJ loves honey, steamy bathrooms, and lots of Vicks.    

This was all last week.  He's feeling better, with his cough just kicking in around dinner time.  We're on Spring Break this week and I'm so thankful we didn't have plans to travel.  Don't get me wrong, I'd love to be somewhere warm, but some down time was definitely needed.  The snow is melted and the sun is shining!     

As much as I am in disbelief AJ will be 7 soon, I'm welcoming that age with open arms for my little guy as far as his body is concerned.  He's such a trooper.  We keep doing the usual regimen, taping his foot and hip, deep tissue massage, vestibular activities, and warm water swimming.  I'm a stubborn mama, fighting to keep him away from surgery.  We can do it!

Breathing

Last night, six pairs of snow-caked black boots stood in my living room.  The flashing lights outside our house at 10pm notified the whole neighborhood that we had company.

After fighting sleep for three hours, I began prepping the "I don't know what else to do" meal for AJ.  Warm oatmeal made with milk instead of water (every calorie helps) and some juice.

AJ took a drink of juice, doubled over, and began to choke.  And.I.mean.choke.  He got it up, whatever it, was, and then...is airway was blocked and he turned a not-so-nice color.

By the time the dispatch finished asking me 3,485 questions, she then transferred me to our local department where I repeated the same information.  He was already back to semi-normal by the time my phone conversation was ending. She was telling me what to do: don't give him anything to eat or drink, if he stops breathing or vomits, turn him on his side, put away family pets, have the door open and the light on, and someone to greet the emergency team when they arrive....  Sister, I got this.  Really.  Who else do you know can do all that while on the phone with 911 and get dressed at the same time?

The team attempted to check AJ's oxygen level, which is always humorous.  He gingerly screams and they fall more and more in love with him.  Jeremy gives his nurse/Dad report. As the team left, I hear he's so cute multiple times.  When they leave, I fight the urge to hug the snot out of them.  I have a deep, deep appreciation for our emergency responders. Let me tell you....

AJ was giggling as they walked out the door.  Jeremy and I?  After putting AJ to bed,  Retreated to our laptops for a good half an hour and then continued to vegetate watching our DVR'ed shows.  It is hard to come down from so much adrenaline.

While our child possesses the amazing capability of bouncing back from such things, we aren't quite as fast.  Us, being late with something.  Imagine that.

I lost my breath walking back to my car after dropping him off at school.  I slept through my alarm and picked him up late.  When we got home, I parked the car and sat with my eyes closed for I don't know how long.  I was just thankful that today AJ wasn't in a manic panic to get out of the car right away.  My entire being shut down.  When I opened my eyes, it took every fiber of my being to crawl out of that car.  Does that sound dramatic?  Yes.  Was it?  Yes.  It is hard to keep on keeping on sometimes.  The afternoon routine commenced as usual, except my little man was tired.  I could tell in his sweet, brown droopy eyes.

After his bath we made our way downstairs to the playroom.  He walked a half-mile on the treadmill.  He swung in two of his three swings.  And then-he cuddled with his mama.  I cannot tell you how precious it feels to have my son find comfort-in me.  My breathing relaxed.  So did his.  How can such a tiny soul produce such strength?

This mish-mosh of days is another example of how I am solid in my commitment to slow down.  Sloooo-ooooww Doowwwn.  Every life is precious.  My son's life is precious.  And I will never get these sweet moments with him back.  There is no repeat in life.  I won't say his life flashed before my eyes last night, because that would be super dramatic and over the top.  But-there will always be another concert, another game, another movie, another assignment, another tangible thing to fling ourselves to.  There will always be dishes, laundry, and a to-do-list for me to complete.

I keep looking at my sweet boy and wondering how on earth he has gotten so big.  How has he made so much progress?  How has he overcome so much and still fills his life and other's lives with so.much.joy?  Last night scared the whoppers out of me.  But-He started breathing again.

If he can do it, so can I.

"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.

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?

The Jist

PT:
AJ's hyperextension of his left knee has become cause for concern. After much thought and many discussions between us, AJ's PT, and AJ's physical medicine doctor (CP doc), he will begin wearing bilateral AFOs-Ankle Foot Orthotics. I took him in today to be measured for the AFOs. Little did I know he'd have each of his feet cast for 10 minutes to create the fiberglass cast from which they make the AFOs. His orthotist (who is THE BEST in the area) said he didn't think his smallest patient of the day would be his strongest. He kept pushing his foot against his orthotist's hand (who was trying to shape the bottom of the fiberglass tape as it dried) and was making this procedure very difficult. As we were wrapping things up, his orthotist recommended having AJ wear an AFO on his left leg but keeping his current SMO on the right foot. I told him to duke it out with our PT. We'll see what they come up with.

In the meantime, AJ is wearing a theraband around his left leg, wrapped counter-clockwise. The way he walks with it on is like night and day. The theraband will do the trick until we get his AFO(s). I'm having a hard time finding shorts in AJ's wardrobe that have belt loops to tie the band behind him. (Safety pins aren't strong enough) I'm also having a hard time being consistent in having him wear it. Sometimes it really sucks that he has to wear socks, SMOs, and shoes in hot weather. Yesterday his left foot was turned in really bad. Bad Mommy Bad Mommy! But his walking deteriorates when we don't do it-so we have to keep it up. His walking may be cute now, but won't be so cute when he's 15.

AJ saw his (well another doc in the practice) physical medicine doctor earlier this month. She was happy with his progress. No botox injections. No medications for spasticity. She is leaning more towards a specific diagnosis of hemiplegia than quadraplegia. She did request a baseline x-ray be done on AJ, checking his bones, hips, and checking for scoliosis. Now that he is 3, this is about the time baselines are done, so we have a place to refer back to as he grows. Muscles do not grow as fast as bone, so when AJ grows, he gets stiff and tight. It takes a while, given his random spasticity, for his muscles to catch up. She wrote out four prescpiptions while we were there: 1) AFOs 2) SPIO vest 3) Hand Splint 4) Baseline x-ray.

AJ's PT suggested AJ wear an abdominal support vest to connect his upper body to his lower body. Right now he has no clue these two things work together. He needs that extra input. After researching SPIO vests, insurance, etc. we decided to go an alternate route. We are searching for a gymnastics leotard that is small enough for AJ. The lycra material will give him the input he needs. It will be worn underneath his clothing. We continue to work on walking farther without assistance, walking on uneven surfaces, and climbing. We just got a new carseat for him (thanks Grandma & Grandpa Nutt) that he fits into much better. He's no longer lounging when he sits and the seat is flatter and is a bit shorter, so his legs hang properly. Plus, it sits a little higher in the car, so he loves it!

OT: AJ has been doing well with fine motor skills. He's using his left hand more and more, and bears weight on it just fine. The only concern is that when he's not actively using it, its going back into a fist position. He also refrains from using it during eating, coloring, etc. His OT suggested a soft hand splint to help keep his hand open. We will see the OT department at Children's next week for measurments. He loves to play with shaving cream, fingerpaints, anything he can smush around. He also loves table activities. It happens to be his favorite time during toddler group.

We are working on helping him dress himself. We've been doing PT/OT co-treatment sessions, which I absolutely love. Last week they had him walking on the uneven hill towards flags in the ground and placed plastic hawaiian leis around his neck so that he had to take them off. We are also working on drawing a circle shape and continue to work on "IN". He gets it, it just depends on if he thinks the toy is fun or not. Sigh.

GI: In early August, I somehow scheduled 3 appointments @ Children's all back to back in the morning hours. GI was our first appointment of the day. AJ LOST WEIGHT. And not just a little, a lot. 7 oz. He was down to 21.1# BUT got taller, at 33.1in. He grew 0.5in in just 2 weeks. But the loss was freightening. Jeremy and I had taken AJ off the Pediasure, giving him whole milk with just flavoring packets. We felt so incredibly guilty, althought it was probably a combination of less liquid calories, his typical toddler diet (some days I eat lots, some days not so much), and his constant movement now that he's mobile.

While it is fantastic he's getting taller, it makes him that much thinner on the charts. I was surprised to hear his percentage only dropped from 86% to 85% of his ideal body weight. As always, they will be happier when he's 90% or above. We have put him back on the whole milk with carnation instant breakfast. same thing as pediasure, same calories, but way cheaper. He continues to be on a high calorie diet. If anyone has a brilliant idea on how to get his vitamins into him, I'd be happy to hear it. Crushing and mixing with food only works with certain foods. Someone needs to make one in a liquid form! His GI dietician is working with our insurance company to see if we can't get Pediasure covered by insurance. Only thing: AJ is an oral eater, so they may not cover it. Oiy. You just can't win!!

Speech: AJ has made some strong gains in speech. His receptive language has definitely improved. We have moved on from the box of noisemakers etc. He now does activities at the table with his SLP. The last two weeks have been the biggest.
He:
-Functionally played with a mailbox toy, putting the "letters" (plastic discs) into the mail slot, then opening the door to get them all out, pulled them all out, closed the door, and put them all in again.
-Heard all Lings when his SLP did them
-Took airplane and did /ah/ sound multiple times
-Took bunny and made it "hop" when his SLP said hop, hop, hop

He's hearing more and more each day. He still choses when to ignore speech though. And we've definitely seen how hard it is for him to hear in noisy environments. Even when just the TV is on. I pulled out all of the "tests" that AJ's therapy staff uses, and was surprised to see he had made gains in each area. I'll have to post that info later.

On Wednesday, I was just playing around with knocking on his tray at Great Grandma's house. He started knocking. Hm. I then thought, lets just see what he does. So I said "Knock Knock" and he knocked on his tray and looked up. We repeated this several times (a few times using my hand as a screen-some closet AVT goin' on here). He did it yesterday and this morning, so I'm pleased to say he understands the auditory cue "knock knock".

CI: AJ had another booth testing (3 month post-activation) in late July. He did well, but his audi decided to change the way the implant is firing instead of turning the volume up. He had 12 channels firing, she turned 3 of them off. This will help make the implant work faster and in turn, provide more stimulation. We will see his audi again in October for his 6 month appointment. He isn't the best booth tester, so this is where we are. He is probably somewhere in the 35-40db range as far as what he's hearing. He continues to wear the babyworn set up, with the processor pinned to his shirt. But if you want me to be honest, its driving me nuts. Not sure that we're ready for the BTE (Behind the Ear) set-up yet. We find outselves frustrated with him not hearing in the car (falls off). He's still wearing it every day, all day.

Feeding: Is back to haunt us. AJ's molars still haven't popped through. Which makes his mouth sensitive and he tends not to want to chew. Yes, my 3 year old is still teething, and no its not normal. Because AJ was so malnutritioned for the first 13 months of his life, he's behind in tooth growth. His dentist thinks by December they should be in. 2 have popped through, the other two are still just swollen. I wouldn't want to chew either. It was so bad a few weeks ago we almost put him back on baby food. He was choking on everything and mealtimes became a nightmare. We don't do regression well. He's improved, although some foods are tougher than others. Why AJ will crunch on a fruit loop or corn pop and not a graham cracker is beyond me. We've pulled out the Nuk brush, Z-vibe, and his entire oral motor therapy kit again. It seems to be helping.

SID: Sensory Intergration Dysfunction. AJ's SID has kicked in an awful lot over the last few weeks. He had a complete meltdown-like I've never seen-in toddler group last week, and then again at the end of his speech session the very next day. Of course he had the meltdown the day his future teacher came to observe! He may need a sensory diet when he begins school. More about his SID in another post.

Toddler Group/School: AJ has been doing very well in toddler group(minus the day mentioned above). We've been practicing sitting on our carpet square here at home and reading books. His sitting during circle time has really improved. The week before his meltdown he sat through both middle and end circle times like a champ. He even listened and partcipated. They had their summer swim party last week-it was so cute. They kids had a blast in the little kiddie pools, complete with circle time outside, playground time, and a fabulous ice cream dessert. He really enjoys the art projects/table time and recently discovered this stacking disc thing. Hard to explain, but when you stack it, each disc does something. AJ figured out how to stack it and undo it, and then if he had the pieces wrong, he'd take them apart and stack it properly. Holy cognition! I am sad to say his last day at CDHH toddler group will be 8/31. We've worked with CDHH for so long. :( All good things must come to an end.

AJ's new teacher has been so awesome. She's observed him here at home during OT, at speech, and at toddler group. We've been corresponding over the entire summer. We've discussed everything from a Rifton chair, to snack time/nutrition needs, to circle/reading time, to purple glue sticks. We've purchased all of his school supplies, and even found a backpack that should work for him. We have meet the teacher night next week and he'll have his first day of school on Tuesday 9/1. He'll be going to school M-Th in the mornings.

Weighing in at a very exciting 21 POUNDS...

AJ had another weight check at the GI Clinic today. We were hoping for at least 20 pounds, that has been our goal for a very long time. On surgery day he was 19lbs 15oz, only 1oz away from 20 pounds.

Today, he weighed in at a whopping 21 POUNDS even!! WHOO HOO!!!!!!

We're Here

We're still here...plodding along.

AJ is feeling better and gaining his strength back. He still isn't walking on his own. He hasn't been to toddler group in a week and a half...and won't return until two weeks from today. This due to CDHH's spring break next week and his activation being the following Monday. So much for peer interaction. He'll attend group two days after he's activated. This ought to be interesting.

Each day he does something that gets him closer to where he was before last Thursday. Yesterday, he climbed up on his airplane on his own. His PT comes tomorrow and we are ever so anxious to have her work with him again. She hasn't been here in two weeks...and we all know I get crabby when I don't have his PT here. We are anxious to hear her opinion and get our homework for the week to help him along. If AJ does not improve we may need to take him to the neurologist.

Of course you know where my mind is going. "Let's do an MRI." Sorry Doc, we can't. He just got his implant two weeks ago and has a magnet in his head. That would be our luck. We are really hoping he continues to improve. Our happy boy has emerged, he was all smiles today, so that was a nice change of pace.

He did have make some awesome progress during OT on Monday. So perhaps his gains in fine-motor skills are also contributing to why he's regressed so drastically with gross motor skills. Of course, he can't tell us what's going on. I'm still looking for the manual for this kiddo. If anyone finds it, please let me know. (No jokes about "no kid comes with a manual" please. Seriously, I can't take it tonight.... We really wish there was one for AJ)

Jeremy's work was kind enough to give him off this entire week which has been an extreme blessing. We've finally had some timet together as a family, time to process the present, past, and future.

We are gearing up for activation, and trying our best not to worry about his upcoming surgery in early May. Not the surgery itself, the post-op is now frightening to both of us. He has a weight check the day after his activation-another thing we are trying our best not to stress over. I bust out at random times (usually while driving) just thinking about AJ hearing. Still numb. Still weird. Still foreign. Hmm.

We're busy preparing his information packet for the entire IEP team and just realized his paperwork for state insurance is due. Such fun. I love paper, but that packet, is just too much. Although I will say it is much easier to fill out this year, with the help of copies form last years forms and knowing all the "LINGO" and how to answer the questions. Last year I didn't have a clue. His therapists are beginning their formal testings/evaluations of AJ for the purpose of the IEP meeting.

So, we're here. More later.

Domino Effect

There are moments in life when you reach your limit and feel as though you've had the wind completely knocked out you. There are moments in life where you wish the world would stop, just for a moment, so you can close your eyes, catch your breathe, and continue on.

That day was Thursday.

Our morning began with a very sick little boy rotating between vomiting and sleeping on the living room floor. He never made it past that 1 hour post-vomit rule for giving a child liquids. After having several phone conversations with AJ's pediatrician and ENT/ CI surgeon's office, I drove him to Children's emergency room. At the very least he was severly dehydrated and we also wanted to check for meningitis (risk with CI surgery).

Symptoms of meningitis include sensitivity to light, sensitivity to loud noises (HA), and a stiff neck. With AJ having cerebral palsy, it was extremely hard for me to tell if his tone was kicking in, or if he really had a stiff neck.

I arrived at the ER to hear the sound of the Flight for Life helicopter on the roof of the building. As I was walking up to the door the rotor blades of the helicopter became a blur as it departed from the rooftop. While looking up I realized that the Day Surgery room we had been in just a week ago was directly above us. Sometimes I wish I didn't have the memory of an elephant.

We were checked in and triaged quickly. They put AJ on the list as the next child for a room. We were lucky enough to occupy a little cubby that looked like it was for bicycle injuries or overflow. Nevertheless, they pulled the curtain and we had our own little area. Thank God. I was not thrilled with the idea of my child vomiting in front of other children in the waiting room. They also put us in there because AJ had an "open" incision from his CI surgery. Yesterday, his incision was a perk.

THREE HOURS LATER we were taken back to the ER. No, we were not pleased. Yes we did speak up, multiple times. One of the nurses was constantly running in and out of the ER checking to see if they were ready for us. Three ambulances came in while we were waiting, taking first priority. AJ passed out on my shoulder. I was thankful he did so. If he hadn't, I think I may have lost it there in our little cubby.

It is amazing where you mind wanders too when you are waiting for...anything. I thought about everything from the blue fabric covering the window, to we really should get boxes for packing, to oh my God this is just like the plane ride home from Houston.

We spent five hours in an actual room. The ER at Children's is like a little city. They were very well organized (which you know this Mom loves). We had an awesome Resident, Attending, and Nurses. AJ received fluids and towards the end of our stay downed two cups of apple juice. He was also given an anti-nausea med. Which, with our experience last week, we quickly asked which medicine it was and quickly asked for the correct anti-nausea med. He was moving his head all around, so neck stiffness was ruled out, as was meningitis. Since he had an IV in his left hand just last week, the nurses put his IV in his right hand. Joy. Somehow he managed around the soft splint contraption they used and was able to suck on his right thumb and fell asleep.

We left at 10pm. I drove to the pharmacy to fill the script for the anti-nausea medicine we requested and pick-up dinner. It wasn't until we left that my hunger headache came on and I realized I had only eaten the peanut M&M's Jer fed to me while AJ was sleeping on me in the ER. The pharmacy technician was such a ray of sunshine (use of sarcasm here). Thankfully by the time I arrived home AJ had eaten well and was already sleeping.

No parent should know the main number of the hospital by heart. No parent should have to sit and wait for their child to be treated for any amount of time (I know, wishful thinking). No parent should have to watch their child suffer-AT ALL. I don't care if that means a boo-boo or watching them enter/exit a surgery.

We have been on the same rollercoaster ride since we brought our AJ home. It has never stopped. And yes, I am taking a moment to do a little complaining. When we were supposed to be jubliant about him being home, we were rushing him to the bathroom up the ramp knowing he was going to be sick again. We were saying "Don't touch him, he's really sick" and speeding to urgent care instead of watching him peacefully sleep in our arms while enjoying balloons and hugs with family and friends. We missed the honeymoon period during the first few months after his homecoming, knowing "something was wrong" and desperately trying to get him the help he needed. We've spent the last year grieving, coping, strategizing, and fighting for our son and his needs. It has never stopped. The breaks here and there that Jeremy and I have taken have worked short-term, but all in all...it never stops. We have our own live version of dominoes falling one by one as we go along.

Today I sit here, the third day of working on this particular post, wishing it would all just stop. I've found myself wondering what life would be like without therapies, doctor's appointments, and watching AJ's every move. Are these selfish statements? Perhaps. What is even harder for us as parents is watching all that AJ has gone through in his short little life. I am constantly reminded of how many scars he has on his tiny little hands from countless IV's in Guatemala. I am constantly reminded how we don't know everything about him. We were not there for the first thirteen months of his life. I wish things could stop for him. I wish he didn't have to work so damn hard at things that come so natural and easy to us. I wish that when people ask me how he's doing I could answer "He's fine." The whole question "How are you?", is a set-up if you ask me. We all want to hear "Fine. Ok. Great! How are you?!" I never have that answer, because something is always going on. I am too truthful to lie or hold it in. Plain and simple.

As hard as it is on us, I can only imagine how much AJ must dislike all of the drama he has been through. We KNOW that everything we are doing will benefit him and dramatically improve his quality of life. We can only hope that one day he will say "Thank You" and not hate us. :)

He is eating and drinking well but is struggling with his balance and has stopped walking. We knew that his day of throwing-up was violent and exhausting. But it has been a year and half since my child was a blob of jello. His regressing back to that was SCARY. We called AJ's PT and discussed a plan to help him regain his strength/balance. His CP is really kicking in while he rebounds. Today he is crawling at regular pace and can stand and take two steps before falling. As he heals and feels better his balance will improve. We have to remember that his body takes longer to rebound from an illness. We were actually lucky that he was up and mobile so quickly after the CI surgery.

I don't think we've really had a moment to savor that our son has a cochlear implant. Early last week we made our decision regarding post-activation speech therapy. We will continue with our SLP at Children's Hospital. His incision is barely even noticable now.

While holding and speaking to our "niece" today, I found myself turning her on my lap, talking and beginning to sign to her while she was staring at the lights across the room. I then though, she can hear me. Duh, Heidi. I guess signing just comes natural to me now.

I suddenly realized that my son is going to hear me. Really? I'm not so convinced. That's a bigger piece than I can chew at the moment. We're supposed to be excited about his activation and then ticker counting down the days. Eh. Ok. Sure. My mind is already ahead of that day, planning for speech therapy the next day and what we can do at home (toys/activities/etc) to help AJ listen. I can't "imagine" it, because I've never experienced it. So long I've been that parent who's child can't communicate with her. Things are about to change. And I'm not so sure I'm ready or know how to handle that.

There is such a thing as too much...but tomorrow is another day. The best part about that? It's a NEW DAY.

19 and Holding

Yesterday was a very scary day.

AJ has not gained weight in the last six months. He weighed in at 19lbs 8oz in October 2008...and was the same yesterday. 19 lbs 8oz at 32 months old.

As I stood next to the scale AJ was on, with my camera ready, sure that he was at least 20lbs even, my heart sank, shock set in, and fear consumed me.

His GI doctor is very, very concerned. Last October, he created AJ his own personal growth chart (since he's nowhere near the US growth charts). He was at 86% for his weight vs. height. The GI had said that meant he was slightly malnutritioned, but that it was ok, we were doing all we could, and that once he bumped up to 90%, he'd be happier.

Yesterday, he was at 83%, 3% LOWER.

It is EXTREMELY scary when your child's doctor can't tell you what is going on and how to fix it. He ordered blood tests and said that we need to basically cut healthy foods out of his diet. Concentrate only calorie rich foods ONLY. We can give him a slice or two of banana, but not a whole one. Food that are hard to "beef up" with calories are out. We are expecting the blood test results today or tomorrow.

There are a "bazillion" reasons as to why this is happening (the GI's words not mine). We are basically on a fishing expedition to see why he's not gaining weight. He has already been tested for parasites, celiac disease, and abnormal calorie absorption (negative). The hardest part for our GI is not knowing when he was born. We were told 4-6 weeks early. After a few months at home and many specialist appointments, its estimated more like 8-10 weeks early. We will never know. We know that he is burning an insane amount of calories since he has CP and is so mobile now, but this kiddo eats A LOT of food when he eats. Where's it all going?

We have a weight check in 2 months. If he does not gain, he wants to put an NG tube down his nose to administer additional calories. Depending on the blood tests results, he may scope him (do an upper GI).

Noooooooooooooooooooooooooooooooooooooooooooooooo. This is not happening. Just when we thought we had gotten way from "tube talk". Yesterday was the first time I cried in front of one of AJ's specialists and his staff. Talk about embarrassing.

AJ's nutritionist came in. Based on her calculations AJ is receiving proper nutrients. She recommended getting a pestle & mortar or a pill crusher to dissolve AJ's complete vitamins into a finer powder than what I can achieve with a butter knife. Jeremy brought home a pill crusher from work last night. Note: Those gummy vitamins they sell for kids now ARE NOT the same as the regular vitamins. The Flinestones (or generic brand) are COMPLETE, the gummies are not.

I asked the nutritionist about foods rich in fiber and that will keep AJ regular. The reason I give him the fruits/veggies etc is mostly to keep him regular. When you are pumping a kid full of calories, some of it can stop them up. We went through a few types of foods and she gave me ideas as to how to "beef" them up with calories. She gave me a few handout on blended foods, high-calorie puddings, and a milk + _______ calorie chart. She also sent us home with a bag of samples. We have Duocal, which is calories in a powdered form. we can use this or oil (as we have been) to beef up foods with calories. She also gave us some different types of high-calories/nutritious drinks for kids (actually made by the maker's of Boost products) and some new flavors of our good 'ol favorite...PEDIASURE.

We left the office and headed down to the lab for AJ's bloodwork. 45 minutes later, I left with a very crabby, hungry little boy.

I'm keeping a log AJ's input/output/total daily liquid intake/total daily calories/wet diapers/soiled diapers.

This morning he ate beautifully at feeding therapy. He chugged, and I mean chugged down the "Banana Cream" Pediasure. I forgot how that stuff smells-ick. But he liked it, so my issues with its smell are null and void. I had to look at my calendar...AJ's been "off" pediasure for over a year now. We had gone to the cheaper alternative (pediasure= $12 for 6 bottles...he was drinking 4/day) Carnation Instant Breakfast with whole milk. He liked the banana cream, he had the vanilla for lunch and has an orange cream to try as well. Whatever WORKS.

His SLP brought up something interesting regarding the NG tube. AJ is such a sensory kid, good luck keeping that in his nose and throat. Will it make him take a step backwards in sensory world? Her other fear is that he will develop an aversion to the tube, and due to that, will develop more aversions to other things. Ugh! I hadn't thought of that. We and his SLP decided that we would cut back his feeding therapy to twice a month...and switch days to accomodate him particpating in the toddler group (more info in a different post). Looks like we made that decision at the right time. Finding an even balance between gaining weight for GI, continuous movement for PT, and trying new foods/biting for feeding therapy feels impossible.

We're a bit calmer today. Maybe its just that he ate well today. His nutritionist did ask me for a recipe that was Jeremy's Grandma's. She had no idea what "Russian Fluff" was when she saw it on AJ's food log. When I shared the ingredients with her, she asked for the recipe, hoping to share it with other families who are looking for "meal" ideas that have bold flavor and lots of calories. I think thats a neat way of Grandma Schmidt feeding other kiddos, in spirit :) I'm hoping to get Uncle Jason over here soon to help convert our hall coat closet into a pantry with shelves etc. I keep AJ's special foods/snacks/supplies in one section of our cabinets. That worked well when he was a baby and ate baby food. Not so much now. Note for the next house: pantry.

New Design & GI Plan

So, do we like the new look of the blog?!

Not too much new to report. FYI, we did find banana milk. Of course, 2 days later, he refused to drink it. :)

Although he had a decent day today, AJ's still isn't eating/drinking well. Yesterday (after a morning of tears trying to get him to eat breakfast), I broke down and called his nutritionist at the GI clinic.

She called me back in the evening and we discussed AJ's sudden aversions to eating and drinking. We came to the conclusion that maybe he's not doing as bad as we think he is. Here are a few more things that we chatted about:

* I will keep a detailed, calorie specific input/output log of what AJ is eating, drinking, etc. for the next week. (I created a chart for each day -I'll post a picture soon). Next Monday, I will fax the log to her and call to discuss. I was actually thankful for taking math in school today-calculating calorie intake can be tricky. I am also thankful for Jer's Calorie King Book for foods that aren't packaged with nutrition facts.


* We have reduced his calorie intake from 1500/day to 1100-1500/day. Little more breathing room. Whew. When I told her he had eating 560 calories for breakfast the day before (by a miracle), she said he's probably getting full on those big meals. Well, what's a gal to do besides try and get 500 calories per meal in her kid? He's not too much of a snacker.

* 1/2 of any amount of applesauce, jello, ice cream, custard, & ramen noodles counts towards his liquid intake for the day. Example: 4oz of cinnamon applesauce = 2 oz liquid

* I shared several people's suggestions on what else he may like to drink. He loves bold flavors, so....The only drink she agreed with was the V8 Splashers.

* Minimum liquid intake per day: 24 oz Target liquid intake per day: 30 oz

AJ has a follow-up appointment at the GI Clinic in mid-February...I am praying we won't have to go in before that.

Today was a good day for AJ. He only had minor typical-two-year-old tantrums and ate decent. He even drank a substantial amount of liquids. My giggly boy returned and boy-was I glad to see him. We are crossing our fingers that this continues.

All Clear

AJ had ear tubes placed in both ears last October. In May the left was extracted. In September, the right was extracted. He is now tubeless :) It seems every time, and I mean every time, his audiologist looks at his ears it means another trip to either the pediatrician or his ENT. AJ has a wax problem . He also has super small ear canals. He never tymps very well and there always seems to be something blocking their view into his ear.

Of course this happened on Monday, at his 4th Booth Testing. Fluid would be bad right now. Did I say bad? It would hinder the CI process and slow us down. It might also mean his ENT would consider putting new tubes in his ears. Since AJ has speech/feeding therapy on Wednesdays, they got us in to see an NP at the ENT Clinic (just down the hall from where we are for therapy). Thankfully, his ears were all clear! No fluid!! Good news!

As if that wasn't trauma enough, we also took new ear mold impressions yesterday. His new ear molds for his hearing aids are ordered and should come in around a week. I chose red this time instead of clear. One, AJ's favorite color seems to be red so I figure when we say/sign "Its time to put your ears on" he'll see them better and this way we'll be able to tell if they are really fitting in his ears correctly. Oh, and when they fall out, they'll be easier to spot on the floor :)

Booth Testing #4

We have now completed audiograms (booth testings) for both left & right ears with hearing aids. Today we finished the left ear. AJ responded to speech at 75dB. He responded to higher frequency sounds at 90dB+.

It is rather interesting that both ears were at about the same level-aided. Since his ABR test (original test that told us he was profoundly deaf) showed NO response in either ear...it will be even more interesting to see how he tests un-aided.

We have three more booth testings scheduled over the next three weeks. We should have all of the information required to submit to insurance in mid-November, after our surgery consult on November 7th. Reports from AJ's CI Audiologist, Speech-Language Pathologist, Psychologist, and Surgeon will all be submitted to both our primary insurance and secondary, AJ's state insurance. We know that our primary will deny the surgery/implants. This is not new news to us (LONG STORY!) However, we just recently learned that submission is done at the same time for each insurance, so we will not have to "wait" for the denial from primary to submit to secondary. They have 30-60 days to provide pre-authorization or denial.

What do the booth testings show? The booth testings show that AJ's hearing/paying attention to sounds. His head turns mean he is actively looking for the source of the sound. These are great things. It shows that he does have an auditory nerve to stimulate inside that brain of his. Because his ABR had no responses, it was unclear as to whether he had an auditory nerve to stimulate. The testings also tell us at what levels he's hearing sounds with his hearing aids and without (soon). He's been consistent at around 70dB with low freqency sounds. To see the different frequency/dB levels please view the speech banana chart HERE.

I also had a very in depth conversation with our audiologist and SLP today. Without going into detail, let me just say it was long overdue. We are finally all on the same page....

AJ's surgery should be around Christmas, providing insurance gives us approval within a reasonable time frame. The team is now aware that we do want to pursue bilateral implants for AJ. Our surgeon does not do them simulatenously. We are going to submit to insurance for one first. If we submit for two (to state insurance) it will most likely be denied, or stalled due to further review. Rarely do they approve bilateral at once. So, given that the team is now aware that we want him to have two, he will most likely have his surgeries a few weeks to a few months apart. The great thing: providing we do the 2nd implant within 18 months of the first (Um, yes!), we do NOT need to repeat all this testing!! Till the next booth testing...

"Dr. Bob"

Fears Relieved....

We had AJ's psychological evaluation this afternoon. It went well. A lot of nerves, anxiousness, and fear...all for nothing. Dr. Bob greeted us by saying, "This must be the famous AJ." We sat and talked for a few minutes (while AJ acclimated to the room).

Dr. Bob asked us:

• Are all of your questions being answered by the CI Team? Yes
• Do you have any concerns regarding the surgery? No
• Are you absolutely sure this is what you want to do? YES!

Dr. Bob then did the "testing" for AJ:

• Presented a "ferris wheel" toy AJ had to spin 4 times to prove the skill
• Presented a rattle that's "top" was a ball that spun (think arcade golf-use the rolley-ball to "swing"). He had to spin it to find both sides and play for 30 seconds
• Presented AJ with "bear popper" toy. AJ had to push down with his hand to make the bears spin
• Presented AJ with wire maze toy on a string. Dr. Bob dangled it/hid behind paper/AJ had to track it and then was rewarded with the toy.
• Presented AJ with small plastic bear figurine and a nesting cup. AJ picked up bear. Dr. Bob placed bear under cup and AJ retrieved it.
• Presented AJ with 2 nesting cups and bear. Bear was placed under one cup. AJ found it on 1st trial. 2nd trial he searched under both cups. Object permanence skill was proved.
• Presented AJ with small bear inside a clear plastic rectangle toy that had "shelves" inside of it. AJ was not able to figure out how to get the bear out (this was expected).
• Presented AJ with 3 small wooden blocks which he was to stack. He grabbed them, but did not stack (this was expected as well).

AJ has delays. This is no secret. Whether his delay will continue or be permanent remains to be seen. As always, we received the answer, "We'll wait and see what he does." This time, in regards to the implants. He's making gains and that show us he's not "not learning" but he's also not "learning @ 100%", he's somewhere in the middle. We did hear something that we have not heard, I think EVER, which gave us some piece of mind. There are certain characteristics AJ displays that Dr. Bob told us, are "typical 2 year old."

We asked if Dr. Bob thought AJ (individually) would benefit from an implant. He told us he sees several good things:

• AJ is alert.
• AJ is inquisitive
• AJ aware/participating in his surrounds
• AJ is making progress.

No one knows how he will do with an implant, but we have good reason to believe they will only help him! We will follow-up with Dr. Bob in one year. After Dr. Bob we had a brief meeting with a social worker. One hurdle down, a few to go!

86% and then some...

Today AJ had his follow-up with Dr. G, his GI specialist. To say we were nervous and wanted to avoid going are understatements. I was so nervous when he was being weighed I felt sick to my stomach.

Current Weight: 19lbs 7.6oz

Total Gain since 7/9/08: 13.5 oz

As we waited for his specialist in the exam room, little tears began to trickle down my face as I hugged my little man. They soon stopped, as I realized, as I had so many appointments before, that Dr. G may not be happy with his gain.

Dr. G said he was happy with the gain. What?! That is the first time I've ever heard that. AJ's birthweight at 3 lbs 8oz was "ok" size for an infant born around 8 weeks premature (that is his estimate). GI sort of gages the growth based a child's birth size/etc when premature. He is content with his progress so far. AJ is 86% of his ideal weight. Meaning, he is considered a tad under-nourished. He was quick to reassure me that it is nothing we are doing wrong, it is just where AJ is. The goal is to get him to 90% of his ideal weight. That is only 4% more than he is now, so that is a very realistic goal that AJ will accomplish naturally as he continues to grow.

Given that we have tested for parasites, abnormal calories absorption, and celiac disease, I was at a loss. What else could be wrong? Over the last few months, AJ's Dad and I kept saying, "AJ's just small." "We've tested for all things possible, he was a premie, he has cerebral palsy, his birthmother was 4'10", Guatemalans are small in general." We had no desire to have an endoscopy done, or upper/lower GIs, and most certainly not a G-tube.

*Note: Children with cerebral palsy burn twice as many calories as a "typical"child does. So while AJ's walking is truly a miracle, as was his crawling, pulling up, etc., in the back of our minds we were seriously worried about how it would affect his weight.

Dr. G said no scope, no GIs, no nothin'. Music to our ears. He's just small and is growing on his own chart. He's closer to the 3% on the normal boys 0-36 month growth chart, but we are not putting too much merit toward that chart, as AJ's chart for his own weight vs. height is what we are focusing on.

We are now able to give him water. What? You weren't giving AJ water? No, we weren't. When we began seeing Dr. G & his staff, we were told not to give him water or juice, as those are "empty calories". AJ has an intake of 1500 calories a day. For a long time, most of his calories were coming from whole milk mixed with carnation instant breakfast (CIB). In the last few months they have added heavy cream to the mix. His pediatrician recent expressed concern about his fluoride intake, so we asked GI if we could give him water. I now need to take a look at our house records to see if there is fluoride in our well. If not, then I'll have to buy the nursery water with added fluoride from the store.

Here is a summary of our care plan:

• 1500 calories/day
• Continue with high-calorie diet (add oil/butter to everything)
• Continue with 1 complete multi-vitamin per day
• Change liquid intake to either 7oz whole milk + 1 oz heavy cream OR
  7oz milk + 1 packet CIB 3x/day
• Goal of 24-26oz liquid daily
• Give water between meals, avoiding 1/2-1 hour before meals
• Follow-up 3 months

To celebrate that GI is finally accepting his gain, and that we won't be stressing over every bite/meal he eats, I picked up lunch on the way home. I thought only one place was appropriate...McDonalds.

Camo Pirate

AJ saw his new ophthalmologist, Dr. P, yesterday. The appointment went well. It was decided that AJ will have the surgery to correct his esotropia (crossing of the eyes). Dr. P wants to wait until after his cochlear implant surgery. In the meantime, we must continue to patch. We alternate (Monday left eye, Tuesday right eye, etc.) eyes, patching for a minimum of 1 hour/day. We need to continue the patching so that AJ does not lose his vision in either eye.

Dr. P also shared that although AJ can look at us "straight on" he does not use both of his eyes together. There are four muscles around each eye. One on the top, on on the bottom, and one on each side. The muscles towards his nose, on both eyes, pull in too much. Therefore, he's only able to use one eye at a time.

We also found out that he is near-sided and has a slight stigmatism. After the surgery, he will wear glasses to force his eyes to focus. The surgery is a relatively simple procedure, and is done in Day Surgery at Children's. First the ears, then the eyes...

Above are pictures of our camo pirate. I realized no one except for AJ's Dad and I have ever seen him with his cool patches on!