Constant Learning

This summer has so far been the most "normal" summer we've ever experienced.  It's full of popsicles and sprinkler fun, sandy feet and sunscreen.  It is everything I wanted in those early years with AJ.

Those days when we were waking up and doing back-to-back-to-back therapies.  One summer we ventured outside for his PT session.  I just about passed out.  He was ready to use his skills in a natural environment outside the house.  I whined about the therapies, the work, the constant "do this, do this, do this".  Summer was hard, with photos of other people's children doing those "normal" things while I was fighting insurances and scheduling constant therapy sessions.  

I'm glad we had that period of time.  What a labor of love.  

When his school team first told me he would not have ESY this year, I thought they were joking.  Indeed, he is attending ESY (things always change in AJ Land).  However, he's remembering verbal prompts such as "let's go to school", "let's go bye-bye", and the ever famous "where are mommy's shoes?".  He shows me a mega-killowatt smile when I pull up school on his iPad.  And when his short session of ESY is over, he has no problem leaving.  

He's quicker to adapt to changing environments and schedules.  This-is a huge step.  HUGE.  

It is a very, very strange feeling to not be running to therapies constantly.  Still.  And we've been out of the constant therapy world for over a year now.  He has done so well, and made so much progress, much due to the intense bouts we did when he was younger.

Never fear we are still in the constant learning phase. Mostly, I find we are working on social and feeding skills.  AJ is perfectly capable of using a fork, spoon, or spork with finesse.  Well, as much finesse as a child can have at his age. Despite his learned skill, we are back to battling utensil use.  We're also working on not just grabbing other people's food, or plates, and not dumping our cups of liquid.  I swear this kid has go-go-gadget arms.  Holy cats.  

Social wise, we are working on reminding him of the proper way to greet someone.  His preferred method currently consists of pulling your hair, grabbing your glasses, and laughing hysterically.  When he gets excited or feels uncomfortable or doesn't know what is expected of him, these behaviors come out.  In the last few weeks I've had two little girls come up to me and tell me "he pinched me".  My heart sinks and I say, "I'm sorry.  He really didn't mean it."  We are so blessed and fortunate to be an example of acceptance that this type of things sends me into a sad panic.  I start to worry if that kiddo told her parents and how they will react.  And then what do I say to them? I don't want to make excuses for AJ, but what do I say? I really struggle with this piece of teaching my child manners. It is such a hard place to be with not completely being sure as to what he understands.  

And then he does things like grabbing an apple and starts munching on it.  Holy use of all the feeding skills we've been working on.  He's gaining social skills by interaction with his puppy.  Constant learning, constant change.

We are constantly working on helping AJ learn.  And this summer, we're doing it with popsicles and fun.  It doesn't get much better than that.

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.

Family Match Game

One of the first theme for AJ's preschool class was Families.  I picked up this at Walmart one day (because Daddy likes Curious George and it was cheap):

And ended up making our very own Family Match Game!

I made a simple two column/three row table in Microsoft Word.  I cropped as needed, then copied and pasted family photos into each space, sizing each to 2.5x 2.5 inches.  Easy Peasy. 

I printed each sheet twice...

Then cut them out...

 Then matched everyone up to double check I had everyone present...

Then  laminated them and cut them out.  I place them face down, with the white side of the paper facing up, and AJ has to match his family and friends.  We are working on a set of 4 right now (which means 2 people), but I made this with the intent to make it more challenging as we go along.  I plan to add our pets and his school staff to this game too.

FUN!

Zen

I woke up this morning totally refreshed.  I mean, shockingly rested.  Which is amazing since I don't think I'd had that great of a night of sleep in YEARS.  I'm serious.  I think I even woke up with a smile on my face.

For whatever reason, I've been graced with a bit of Zen recently.  Which, while being seriously overdue, I am welcoming into my life. 

We returned early from a visit to Jer's Mom & Step-Dad in Iowa on Sunday night.  While our quick departure was not planned, the drive was absolutely gorgeous during sunset and my husband and I chatted for four hours-straight.  About anything and everything. While we spent most of yesterday morning in Urgent Care with AJ, the day ended up being a family day.  Totally by accident.  An accident I am still smiling about.

While sitting in Urgent Care, my little man was snuggled on my shoulder.  Melt.my.heart.  He's at that age where he doesn't necessarily want to snuggle all the time. Even though I was frustrated we waited for over an hour to be seen, I found myself enjoying the snuggle.  I quickly calmed my frustration with remembering that we truly are blessed to be able to just walk in somewhere, wait an hour, and walk out with a diagnosis AND the prescription called into the pharmacy already so we don't have to *gasp* wait for it to be filled. 

We decided to run an errand, ok I decided we should run an errand while on that side of town, so we headed to Sam's club where I did a Jeremy.  What's a Jeremy?  I walked in with intentions of buying Crystal Light packets & crackers...walking out with a cart FULL.  To celebrate my achievement, Jer pulled into Starbucks, where I shouted my order for my new favorite drink (Iced Mocha-thanks Mel for introducing me) into the speaker, because Jer says if he were to order he would never get it right.  

The weather was absolutely gorgeous here yesterday-it almost felt like fall with the lack of humidity and temps in the 70s.  We drove with our windows open-imagine that! We picked up lunch and headed towards home, when I remembered the post office was on the way and I needed to mail the box thats been rattling around in my trunk for ahem, a while.  Jer chatted on the phone with a friend, while I ran in the post office, mailed my box, and picked up a sheet of Katherine Hepburn stamps.  Because Gram would have loved those, so I had to get them to use for mailing out all my important mail, like my bills.  Fun.

We continued on to the pharmacy, where I ran in and crossed off several items off my "to pick up list" in addition to AJ's prescription. Rock on.

We finally arrived home, where I had a great conversation with a friend that made me feel "normal".  That is always a plus in my book . We played with AJ, watched weird TV shows, and just enjoyed a laid back day.  AJ went to bed at a normal time, followed by Jeremy and I eating dinner by ourselves (on purpose), and then proceeding to sit in silence, as I read a book and he worked on the last project for his current class.  No TV, no noise, just a few conversations between us here and there.  Bliss.

We wrapped up the night crawling into our comfy bed, which for some reason was extremely comfy last night, complete with fresh sheets.  Oh how I love fresh sheets.

It was a wonderful day. 

Zen, you can stick around for a while. Ok?

AJ Gets His Polka On

AJ attended his first festival: Polish Fest.  If you are familiar with the Milwaukee Area, the Henry Maier Festival Grounds host the biggest music festival in the world, Summerfest, as well as many other ethnic festivals throughout the summer.  We had a blast, and AJ did extremely with the crowd noise and music with both his CIs on.  You could definitely tell the difference when the "new" one would fall off and when you'd put it back on. 

*Relax, he didn't get anywhere near the beer. 

He was just checkin' it out.

Snowcone!

Polka with Daddy!

Polish Connection:

The band AJ LOVED!

Serious conversation?

We ended the day at the splash pad!

Even though the water was ice cold, it was still fun.

Friday Night Lights

So, I happened to be in the clearance aisle at Michaels. I know, SHOCKING. I spotted these glow sticks/braclets that I thought would be fun for AJ. I pulled them out at a perfect time as AJ's been in this mode of collecting things and trying to carry 872 things at once. It's quite cute, funny, and is yet another cognitive gain. So we turned out the lights and played with the glow sticks last night. He quickly figured out how to gather all of them in one hand. We had lots of language going on, as we were counting and saying the colors. There was enough light from the glow sticks for us to see his face, so why not throw some auditory work in there?! At $1 for a tube of 15 (of which we only used 1/2), they made for a very fun Friday Night.

Welcome Home 'Drama!

My Mom flew home last Friday from a six-week training program in Dallas, TX. We are SO happy to have her home!! We took AJ to the airport to pick her up. This was his first trip back to the airport since we had brought him home from Guatemala in August 2007.

Welcome Home 'Drama!!!

Wordless Wednesday

I'm A Big Kid Now

All day long that little jingle has been in my head. We took down AJ's crib today and put him in his toddler bed. We found an adorable sports themed bedding set. Naturally, I had to put that on his bed... and take a picture. I know it will never be that neat ever again!! AJ did very well when we introduced him to his new bed. He figured out how to stand up on it very quickly. (Insert Mommy letting out a screech with her inside voice). Much to our amazement, he took his first nap in his new bed-just fine. Out like a light. We are hoping he sleeps just as well tonight. We are a little worried about him falling off/down onto our hardwood floors, but that is to be expected with having a little boy. We have pillows on the floor just in case :) (Pics below)

**On a side note: AJ is feeling much better. Amoxicillin is a wonderful thing. Mommy is feeling better as well. I didn't realize just how sick I am. What an awful feeing to be stuck in bed (I negotiated couch time here and there!)
A HUGE THANK YOU TO DADDY for rescheduling his Saturday patients and staying home to take care of his home "patients" for the last two days!

Last Hurrah In My Crib

Daddy taking the crib apart

New Bedding

Rocky making sure the bed is "OK" for AJ

Check me OUT!

I can get down all by myself

1st nap in my new bed

Betty Brinn ROCKS!

AJ's EET and I decided to take him to the Betty Brinn Children's Museum in downtown Milwaukee.

It was AWESOME!

As soon as we walked in AJ's eyes started wandering and he decided to walk with his EET over to what else-a red wall. (Red is the color he sees best-and that we've deemed his favorite)

We spent more of our time HERE in the toddler area-Betty's Busy Backyard. AJ was go go go the whole time we were there.
He enjoyed the sand table, the metal tree mushrooms, and most of all the tunnel! His face was priceless-the moment he figured out I was on the other side...turned around and saw his EET where he had started...he laughed so hard. He though he was pretty cool!

They also had a log that you could crawl through, with a detour to the left (a branch). Guess who took the detour....:) After about an hour, he was done, so we walked around and toured the rest of the museum. It is for ages 0-10. I wanted to play! We will have a membership soon and will be visiting quite frequently-since AJ liked it so much.

This was another awesome language opportunity. I love having his EET around. One can handle while the other signs-which is sometimes necessary with AJ. She's just awesome. I highly recommend this children's museum...Betty Brinn ROCKS!

Below are some pictures:

He really liked these flowers


Tunnel Time!


Check me OUT!


Detour!


Zonked out on the ride home

Shake Shake Shake

This past weekend my mom came over to bake cookies. AJ served as taste-tester. He gave the spritz cookies his thumbs up. Ok, he just ate them and giggled. He took a nice long nap during the afternoon. I had the afternoon to myself. In my own kitchen. I was on a baking frenzy. I'm still not sure where that came from. I will say that it was very theraputic and I was glad to have both ovens to work with.

After dinner Jer and I had AJ decorate the sugar cookies. Playfully referred to as our "Under The Sea" sugar cookies. Little did I know, AJ's Mommy does not own one cookie cutter. Thanks to AJ's "Playdough Bucket of Fun" we used plastic cutters to create starfish, dolphins, fish, lobsters, and more. We even have a few giraffes, alligators, dogs, and cats. OH MY.

Decorating the cookies created an awesome language opportunity. AJ obliged and shook the sprinkle can a few times, but was more interested in eating the can & sticking his finger in the dough. He had fun. FYI: Double-tailed dolphins look really strange when they come out of the oven :)

Below is the video & pictures (be sure to disable the playlist above before playing the video). It is a bit dark-sorry! This is my first video with captions-I'm so proud!!

Detour: Winter Wonderland Ahead

This weekend was the annual Winter Wonderland Party for the Center for the Deaf & Hard of Hearing (CDHH). AJ receives early-education services from CDHH. His EET (refer to Blog LINGO-scroll down-its on the left bottom) comes to our home once a week. We were looking forward to the party since there would be a signing snowman, cookie decorating, face-painting, coloring, story-time (signed), and music-time. I was looking to the signing snowman the most.

AJ woke up early which threw off his whole napping schedule. We picked up Grandma Cheri and arrived mid-party. By the time we got there, we discovered the signing snowman was gone. The cookie decorating table was taken down just as we settled in. AJ does not color (yet). Face-painting + child with sensory issues with his face/head especially = disaster. We didn't even pursue that. We ventured into the play area where they had an igloo (crawl-through tube), a ball pit, slides, etc. By the time we got in there the sign that said "Parents Please Supervise Your Children" had gone out the window and the kids were hyper off of cookies & hot chocolate. Understandable, but not so good for AJ. Jeremy and I both looked at each other and knew if we put him down he would get trampled. Literally.

Instead, we went back to our table. I saw a baby, probably around a year of age, watching his Mommy sign to him and I could tell he "got it." I had a huge cloud of guilt suddenly hover over me. Why does my son not understand me? I'm not doing enough. He should be understanding more signs. What do I need to do to make this happen? I know what everyone will say. You can only do so much, there are only so many hours in a day, you're doing a great job. He's got other things going on in addition to the hearing loss. I know all these things. But I am also incredibly aware of the things we need to do to keep him progressing. Any parent that has a special needs child knows that plateaus-SUCK.

Four helpings of pistachio salad for AJ later, we left the party.

Bummed.

Despite our hardest efforts to NOT have it be this way, this time of year is a little bittersweet. While we are having a ball shopping for AJ this year, this season is still hard for us. Last year, we had hope in thinking "next year, he'll get it." "Next year, he'll be able to participate." Don't get me wrong...I am thrilled and amazed that my son has made such tremendous progress going from 0-15 months developmentally in a year and a half. I am thrilled he is responding to more signs and making daily progress. But, we took him to an event geared for children/families with hearing loss and yet he still didn't benefit from it. We are going to take him to see Santa soon. We were not avoiding Santa this year, but though the signing snowman would be more appropriate and special. Of course it bothers me he can't hear Santa's sleigh bells, but I don't see this visit to Santa being as heartbreaking as the first. Right now, its the rest of the stuff that bothers us. Sometimes we don't feel like "doing IT", whatever "it" may be, simply because AJ doesn't "get it". All of this is hard only on us, as parents, at this point. I hope we snap out of this funk sooner than later.

On a positive note:
We visited with AJ's EET for a while at the party. We also ran into the instructor of the sign classes Grandma Cheri & I took. Well call her "T". She is deaf and is one of the teachers for the toddler group we so desperately want to get AJ into. She is the cutest & most ecstatic pregnant woman I've ever met, which is such a breath of fresh air! She can't wait to be a Mommy!! "T" and I communicated in sign. I understood everything she said, which is not a feat, but she understood me too. I felt very proud. It was great to see so many people using a common language-other than English.

We found a new tree-as ours was older than old-and was past its prime. We decided to stick with artificial, as it is more cost-effective. We made our tree lights "blink" by using the twinkle bulbs. Grandma Cheri had told us a few weeks back that he enjoyed Great Grandma's tree when she turned the lights on/off.

So, we know what "doesn't benefit AJ" (yet). Jeremy and I brainstormed last night to figure out what we could do that AJ would enjoy. We are going to take him to Candy Cane Lane and to the light display at the Country Inn & Springs Hotel in Waukesha. We have heard that light display is amazing. In addition, Grandma Cheri and I will be making Christmas cookies here soon and we'll have AJ "help". Extra bonus: He's only 1 room away from the bathtub for easy cleanup!

I am also constructing AJ's 1st experience book. A few months ago AJ's EET & I created an "All About Me" book for AJ. We had taken pictures of me dressing AJ & a few of his favorite toys. We mounted them on cardstock, wrote captions (i.e. "AJ stands up, he's all dressed"), laminated each sheet, punched holes in them and put them all together with silver clip rings. This is sort of the same idea. I am working on a winter/holiday book for him. Soon we will be reading & signing with the book each day. Hopefully I can keep this going and do more experience books for him. (Did I mention I'm still working on his lifebook-first visit pages-STILL) I will post pictures as soon as I am finished with it.

Snapping out of it and taking the detour ahead? Workin' on it.

Sharing...

This is what sharing looks like in our house...



Last week, AJ's Early Ed teacher brought a brown box for us to give him "box rides" in. While doing so, we vocalize & sign "Goooooooooo", "Weeeeeeeeeeee", "Stop", and "You want more?". The goal is to get him to vocalize purposefully when he wants another ride. AJ loves his rides but also enjoys tipping the box over and crawling out. He now has to compete with our Queen of the Boxes, Sugar. She shared with AJ, how nice....

Pumpkin Pie, Me Oh My

WARNING: You are about to view pictures of a very messy child! Think of it this way...it is an AWESOME sensory experience for him!!