She Said It...Again.

Earlier this week I took AJ to see his physical therapist. You know, the one I schmooze all over this entire blog?  The one who discharged AJ a year ago and said, “He doesn’t need me”... 

Well, she said it…again.

I took him in for a functional screen, which functions as a quick peek at AJ to see how he looks, feels, and moves. Translation: Mommy needed confirmation that's doing just fine without therapy.  Flying solo freaks me out sometimes.

We haven’t been to his therapy clinic in a year and he still knew exactly where he was going.  Upon entering the gym, he promptly pulled out the platform swing from under one of the mat tables.  The difference, when his PT said, “No, sorry bud, we don’t have time today…he moved on to other things”.  My.big.boy.  
She was simultaneously thrilled and saddened with his status.  Thrilled because, he.looks.great.  Saddened because that means she doesn’t get to see/treat him. 

We discussed the idea of a therapy/service dog for AJ, which is something Jeremy and I have been considering for quite some time.  If anyone was going to give it to me straight, its going to be his PT. 

While I was concerned about his spine, she reassured me that his functional scoliosis has not returned.  His back looks straight.  He.looks.great.

The one issue we both agreed on, his left foot/leg.  Oh boy.  Child, child, child.  The Botox is not lasting long enough.  We are researching phenol injections, you can read about them here.  They last longer, as in 6 months, but there is a catch.  At least for AJ.  You have to be under for the 15-20 minute procedure.  AJ and anesthesia are not friends.  And, he can’t have the stuff that puts you out for just a little bit.  Oy vey.  So, we’ll be digging into that a little bit more in combination with his PT and his physical medicine doctor. 

Botox is still a great option, except that insurance only covers it every 3 months.  AJ’s wore off I’d say in 4-6 weeks this last round.  And that was 4, count ‘em, FOUR injections.  Lots to talk about and discuss. 

She also recommended that we have his stop wearing his AFO on that foot.  Hallelujah.  He’s been walking worse with it on than without.  I’ve been taping his foot and hip with kinescio tape, which has helped tremendously.  Now, if I could just get AJ to stop pulling off the foot tape.  Dude, the stuff is $24 bucks a roll.  We’ll get there.  He giggles when I pull the tape out and stands perfectly straight for me while I apply it to his hip, and somehow relaxes his foot enough for me to tape from the in-step around to the outside ankle.  It could be worse.  He’s such a trooper.

We’re also going to bring out the ‘ol night splint again.  We’re only going to come in on the splint about 5 degrees, so he can stretch out those muscles. 

“He doesn’t need me”. 

Five years of therapy after therapy after therapy and he’s finally free AND thriving.

WAHOO!

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.

Wordless Wednesday

Intense Progress

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

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

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

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

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

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

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

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

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

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

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

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

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

Up, Down, Catch 22

Yesterday morning I wrote the "Shenanigans" post.  Everything's great, la la la la.  I think I set myself up for disaster, sometimes, you know?

We went to his auditory therapy appointment, where his new teacher met us to observe, and it was the holy grail of disaster.  While he is tolerating being bilateral again, he is extremely sensitive at times.  It comes out of no where.  His first major meltdown came after both myself and his therapist praised him.  Apparently we were too loud, because it set him off like a fire alarm.  Between a combination of giving him some quiet time, then holding him, then showing him his absolute.all.time.favorite.auditory.therapy.time.toy, he calmed. But then go upset again when we took said toy away, because it has lights and spins and in his rough state we knew he'd stim on it.  Stim on it?  Focus solely on that toy, stare at it and ignore the rest of the world.

While he was screaming, I found myself in yet another Catch 22.  I knew if I took his coils off, he'd stop crying, thats what he wanted.  We are in  very delicate stage right now in that we don't want to develop a dislike for hearing the world, or be in pain, but we don't want him to think he can just take them off whenever he wants and get his way.  This is where the "AJ whats wrong...Mama my ear hurt" would come in really handy.  I found myself getting worked up, and embarrassed.  I know the teacher who came to observe, but I always get nervous when someone is around AJ for the first go around.  I would be a bit intimidated if I had a child I was observing and he was screaming bloody murder, wouldn't you?  This teacher has been around AJ several times now, so I know better, and perhaps I am not giving her enough credit.  But in the moment, I felt myself getting rather worked up and frustrated while I was holding my son, trying to calm him.  This is the Mom feels helpless routine. 

We kept plodding away with activities and eventually AJ participated, begrudginly at first, but then gave in.  We kept our voices calm and cool and continued on.  He did do some great listening skills that day. 

We wrapped up the session to give AJ's therapist and the teacher a chance to talk.  I joined the conversation, where I shared his "OOOO" for "ON" and "AH" during ma-ma-ma.  His teacher could tell his body language changed, showing he understood when we'd say "bye-bye" to a toy and he'd look over at his therapist, anticipating the bucket to appear from behind her.   From sitting next to him, we saw him pause and look.  He participated in a bit more of vocal play this time around.  The joint consensus: AJ is inconsistent. Big surprise right?  This makes it very difficult to figure out exaclty what AJ can do.  Is he vocalizing with intent?  Is his imitating? 

We left the appointment and made an impromptu stop at the park to meet up with a friend, where AJ proceeded to have a meltdown about the swings.  I let him swing for a few minutes and then took him out to see if he would enjoy those rock-back-and-forth-horse-things-on-springs at the park.   He screamed bloody murder.  A full all out tantrum. After he calmed a bit, we eventually went back on the swings for a short while and he crashed out cold in the car on the way home. While he enjoys swinging, it also causes him to loose where his body is in space.  Its very odd.  I would have thought since he loves the vestibular movement, it would do just the opposite.  Nope.  We will keep trying, and hopefully each time he will learn to calm himself.  I do know that we can longer swing him for long bouts of time, just because he likes it so much. 

We zoomed on over to school for "Meet the Teacher Night".  I can't believe how much is classmates have grown.  It was great to meet a new parent, who was the carbon copy of me last year.  So nervous about her kiddo attending school for the first time.  It was nice to be on the other side of the fence and calm her nerves, at least a little bit.  We met some of AJ's new classmates and I got some clarity as to how this year is going to work.  Very exciting stuff! 

We left, due to AJ going into "Mom its loud and I can't take it" mode, and the car ride home was intense.  I think I was coming off of a nervous-high intensity day for me and AJ was tired, hungry, and of course, trying to tell me by whining.  I sort of barrelled through the door when I got home and Jeremy knew he was on duty for a moment, or three, while I took some time just for me. 

I hadn't realized how nervous I had become about AJ returning to school.  I know he'll do fine.  But I still get nervous.  I know the potential this kid has, and I become frustrated when something or even AJ himself stands in his own way! Knowledge is power, and up until yesterday, I didn't have all the pieces.  Heaven forbid. 

I was upset about his therapy session early in the day.  While I know today is a new day and yesterday is behind me, I was still frustrated about that session.  Not at AJ, but at the fact he got a blasted ear canal infection at the worst possible time, in the worst possible ear, and is having the worst possible (in our opinion) time bouncing back from it.  We have done all this hard work boosting his auditory skills and it sort of is, down the drain.  I know, dramatic, but true.  As we were walking out, his therapist and I were both really bummed about his sensitivity to sound right now.  We don't even have enough to say whether what we are doing is working/not working, in regards to whether we should continue therapy or not.  So we decided to keep plugging away, and will continue therapy into the school year.  While this makes both Jeremy and I extremely excited, the reasoning behind it made me sad.

I took a long shower and settled into the couch with the "your kid is starting school" packets we received last night.  I love paperwork!  As I read, I watched my boys wrestle and watch the Packer Game.  It was the perfect end to a very hectic day.

Hula Scootin'

AJ likes to keep his left side tucked in.  He doesn't like to extend his ribcage, lengthen his left side, or anything of the sort.  In an effort to make lengthening "fun" and to strenthen his arms and upper body, his PT and SLP (for feeding-she does NDT stuff too) introduced him to this scooter board and hula hoop fun. By the way, thats his SLP pulling him around.

 He LOVES it. 

Unfortunately I have not yet mastered taking a picture of
AJ while he's on the board and  I'm pulling him here at home.  Have no worries, he loves this activities and

voluntarily switches from his tummy to the sitting position (pictured above)

AJ also uses a scooter board during his school PT time,

so OF COURSE, I did a search on scooter boards online.

Craziness. 

I think anything tied to therapy has a gazillion dollar mark-up.  The cheapest I could find was $100. 

Until I went to one of my favorite stores, Big Lots.

It's one of those stores, like my other favorite,

Tuesday Morning, where you never know what your going to find. 

I found this:

Looks like a scooter board to me, don'tcha think?

It works great! 

The only thing that is kind of a pain, is that its made from mdf/pressboard, so we need to make sure we bring it inside after we've used it outside in the driveway.

Other than that, its awesome!

Oh, and how about that $10 price tag?  YAY ME!

Undoing the Undone

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

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

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

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

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

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

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

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

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

REGRESSION.
 
AJ has regressed. 

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

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

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

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

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

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

S&T

Scholarship:
I'm sure you remember that I mentioned we applied for a scholarship to attend the AG Bell Biennial Convention in Orlando this year. 

Well, we didn't get the scholarship.  They had around 65 families apply and gave 5 full scholarships/1 half scholarship.  We were really bummed.  Ok, beyond bummed.  I was also kicking myself for not understanding what a great opportunity we had back in 2008, when the convention was right here in Milwaukee.  Hopefully, we will be able to attend the 2012 convention without relying on a scholarship.

School:
We met with AJ's teacher and SLP at school a few days after his surgery.  Nothing like crunching everything together, right?  Anyhow, our purpose was to pow-wow before AJ's actual IEP meeting, which was the following Friday.  We got quite a bit accomplished!  We reviewed AJ's (then) current IEP (Individualized Education Plan) and both Jeremy and I were both pleasantly surprised as to how many of the goals he had already met.  He had more "met" or "emerging" than "not met" goals, which was very encouraging.  I hadn't looked at his IEP in quite a while.  It was a mirror with a much different reflection.  AJ had progressed.  There was no denying that.  We discussed what we were going to "pitch" to our home school district about schedule, and his current needs, etc. 

AJ's IEP meeting that following week went OUTSTANDINGLY WELL.  It lasted 1 hour and 15 minutes...which I think is a record.  It was smooth as silk.  The principal sat in on part of our meeting, which was interesting.  He totally reminds me of my own grade school principal.  It gives me warm fuzzies that everyone in the building seems to know who my little man is and when his own principal cheers him on in the hallway...that is special. 

AJ will again be attending Lowell for the 2010-2011 school year.  YAY!  He will go a full five days, with 3 half days, and 2 extended days.  Which means two days he'll be eating lunch in the lunch room with his peers.  That just screams "boy" instead of "toddler", doesn't it?  We are pleased with his new goals, some carryover from the last IEP, but most of them are new.  He will also be participating in a special PE program, which is super exciting. 

AJ's last day of school was last Wednesday.  I am so sad the school year is over.  The year ended with a field trip to the zoo, and on the last day, a slide show and picnic at the park.  I really feel like we're a little preschool family.  All the parents know one another, and support each other's child.  The staff for the preschool program...I don't have words.  Really.  They are all amazing and we are so blessed to have them help AJ on his educational journey.

All of the kids have grown over the year.  It was truly amazing to watch them all grow as kids and as learners.  I truly enjoyed my time volunteering this year.  I've been asked to return as a volunteer, which makes me very excited!!  We'll start school again in September.

While AJ is technically out of school, he's not really on vacation.  We struggled and struggled with how to best support AJ over the summer, especially in the area of speech/auditory skills/language/communication.  While everything else seems to be chugging along, these seem to be sitting on the tracks.  I will say that AJ had an explosion of signs that emerged in late April/early May which made all of us ectastic! 

Last but not least, AJ qualified for ESY (Extended School Year) through the Waukesha School District. He will attend two days a week, for about an hour, from late June through July.

Therapy:AJ will be working with the AVT (Auditory Verbal Therapist) at the Center for Communication, Hearing, and Deafness over the summer.  We will see the AVT once a week to work on Auditory Skills Development and hopefully he'll make some wicked progress.  I'll write more about this later.

In addition, AJ will be attending a tumbling class once a week, feeding therapy once a week, occupational therapy once a week, and physical therapy once a month.  AJ has not had PT since March, due to insurance thinking he's doing too well.  Yeah.  How about that?  His PT submitted for summer sessions only.  We thought it would be a slam dunk, no problem. They approved, with modifications...8 visits from now until November.  We can either fight it or take it.  We've chosen to take it.  Something is better than nothing, right?

Not a summer vacation...but its what AJ needs.

*Gasp*

I just felt someone punch me in the stomach.  Not really, but the wind was certainly knocked out from under me as I realized AJ's next IEP meeting will be in 2 months. 

How did I not realize this until just now?  I'm not really quite sure.  Maybe because my brain subconsciously thought the meeting would be around his birthday again.  Which makes absolutely no sense.  The school year ends in early June.  Which means his IEP will be in late May.  I'm sure it will happen before the end of the school year.  This is exactly what we wanted to avoid.  It would take a sheer miracle, with several layers of wonderfulness, to have us in Waukesha by May.  We will be considering next year's placement, including ESY (Extended School Year) for the summer, and what to do when he's not in the month-long ESY program.  We will need to discuss PT, OT, speech, and on, and on, and on.

Over the winter {this is my bold attempt to use past tense yet again}, I stayed in the Waukesha area while AJ was at school.  Many days I'd drive around different neighborhoods, write down MLS# from for sale signs, pick AJ up, and head home.  We are nervous about what we are going to find in the price range we are hoping for.  We aren't shooting for extravagant or huge.  No stainless steel appliances or updated flooring.  We're really looking for square footage, in regards to having a space for AJ's therapy/play area.  From what we've seen, slim pickin's my friend. 

Our financial situation {living on one income} is not about to change anytime soon.  And you know, that sucks. AJ's needs continue to increase, which is something we must take into consideration.  We are unable to rent, due to our pets.  We struggle to find the time to finish what needs to be done to our current home.  This is...a lot to think about it.  I am, frankly, tired of telling people we are going to move, with different dates in the "fill in the blank area".   We are really freaking out stressed about this whole situation. 

In other news:
We were finally able to order AJ's glasses.  They will take a few weeks to come in.  For those in state of WI, Medicaid/T19 will not pay for the frames, only the lenses.  Nice to find that out when I went in to order them.  I made a quick call to his ophthalmologists office to update them on Medicaid/T19's payment for glasses, as they told me the whole thing would be covered.  I'll be the guinea pig, if it means some other young Mom & Dad don't have to go into an optical store and be asked for cash on the spot.   Remember I said he loves glasses?  Nope.  He hated trying on the frames (no lenses).  Lovely.

AJ's evaluation with Rona Alexander went well.  It was amazing to see her treat firsthand. She may see him again the next time she consults at his therapy clinic.  YAY. I videoed the entire session into four separate videos.  Wouldn't you know my camera decides to not cooperate.  I am unable to transfer any of the videos to the computer, and when I play them back on the camera, I can only view 2.  AJ's PT had asked me to video for her benefit, for AJ's OT, as well as his new SLP.  I also wanted to share it with AJ's teacher and therapy staff at school.  What is with me and cameras?  I will say that this happened twice already, when we attempted to video AJ during treatments by another world renowned therapist (PT). 

I am anxiously awaiting Rona's report.  I am not anxiously awaiting the bill after our primary pays.  She is so totally worth it, but gulp.  I feel like things are constant piling on top of us.  We are also waiting on the go-ahead from T19 for AJ's speech/feeding therapy.  Once we get that, he can begin therapy. 

The same day AJ saw Rona, we had my Gram's internment.  Stressful day.  I had wanted a sitter for the dinner after, which didn't happen.  AJ did well up to the dinner, but when you walk into a nice bistro with a almost 4 year old that just had one of the most intense therapy sessions of his life and no nap, you worry.  A lot.
I miss Gram.  I find myself thinking of calling her to tell her something.  I don't actually pick up the phone or anything like that, I just think about it.  And then I remember she already "knows".  That, to me, is pretty cool.

AJ was "verbally" approved for another year of Medicaid/T19 through the Katie Beckett Program.  We had our every-other-year home visit from the KB rep last week.  While I shouldn't be nervous, I usually am, since it is such a blessing to have this secondary insurance.  I think I am also nervous due to her telling me he didn't qualify when I called her on the phone and told her his diagnoses way back when.  Thank God his PT told me to schedule a home visit so this rep could see him in person. 

I straight-out asked if there would ever be a time where AJ didn't qualify.  She answered, "Unless he has some miraculous recovery and catches up to his peers in every area, I don't think you have anything to worry about."  Comforting and tremendously heartbreaking at the same time.  I will also say that if anyone thinks we are "milking" the system, or that this is the easy route, you are seriously mistaken.  I plowed through two ink cartridges and handed her over 125 sheets of paper-copies of his IEP, IEP update, recent progress reports from his therapies, and their handy dandy stack of paperwork.  Totally worth it, but not easy street.

And, I watched a hoarding show tonight.

Talk about having the sudden impulse

 to completely empty my entire house. 

Gives me the heebie jeebies.

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.

Wordless Wednesday

Transitions...

Today, AJ's SLP and I discussed what our ultimate goal is for AJ in feeding therapy. We placed his current "age" in regards to feeding at around 12 months. Think of a typical 1 year old she said. Is he eating like a typical 1 year old? Ok, I can't think of how a typical 1 year old eats...due to training my brain to not think about what other "normal" children are doing and when they are doing it.

Ultimately, our goal is to have him eating at the level of his chronological age-32 months. We need to get him chewing and biting foods consistently. He needs to have better control of the sippy cup or a regular cup. He needs to move his food from side to side in his mouth and chew to create a bolus to swallow.

I wanted to touch base with his SLP because all of a sudden I had two thoughts:

1)How on earth are we going to fit 7+ sessions of therapy in per week post-implant?

2)Duh. He won't need feeding therapy forever...so when will he be discharged?

I found myself so wrapped up in his current schedule, I didn't stop to think that maybe he may not need feeding therapy, or at least not as often, post-implant. I also wanted to know what his therapy schedule would be like if we choose to go to Children's for his speech therapy post-implant. As I suspected...they would like him to have speech 3x week. Often insurance won't cover 3x week, but we'd shoot for as much as possible. In addition, it will also require us to do lots of therapy at home with him. His SLP said that maybe at that point, if AJ was not discharged from feeding therapy yet, we'd cut down to maybe twice a month.

Our other option is to have AJ receive speech therapy from CDHH. Their approach is more parent-centered. He would have therapy once, maybe twice per week, of course with lots of work on our part at home. I keep saying that we need to make this decision, and we really do. SOON.

AJ's transition meeting with Bto3, our school district representative, and his therapy team will be on St. Patty's Day, 3/17. At this meeting we will voice our wants, needs, etc. for AJ and what our ultimate goal is for him at this point. The school district will explain our options, what is available, etc., and his therapy team will give mini reports on his services/gains. Following the transition meeting, evaluations will be done by the school district staff and an IEP will be schduled. That is THE meeting that is most important.

We need to figure out what we will do with the gap between AJ's birthday (6/28) and the beginning of the school year September. As a child who will be newly implanted, skipping therapy for a few months is-NOT GOING TO HAPPEN. We must also figure out what the school district is willing to provide as far as PT and OT. Will he need additional PT and OT outside of school?

On Saturday, our weather was ridiculous. It was 50 some degrees out! My mom came out, we spent some time outside, and then took a drive...to AJ's school. I wanted to show her where it was and drive around the area a bit. For those who live in WI, I didn't get lost in Waukesha-YET! The words "This is AJ's school" sounded absolutely foreign coming out of my mouth. We drove back just in time for naptime. When I put AJ in his toddler bed, it dawned on me he had been in it for a week already. A transition I was afraid of and never thought would happen...did...and was now old hat.

Transitions can be positive, even if they are a bit scary.

Ninja with a Pink Cup

Part of the fun of having this blog is to come up with some INSANE post titles....

We have lots of updates so I thought it would be easier to smush everything in one post, than several separate posts.

Cochlear Implant Process Update
The case worker sent the letter of approval to the insurance company and to our surgeon's office. She also emailed me a copy, per my request, which I received a few minutes ago. We need BOTH primary and secondary insurance approvals or denials (in our case-approvals-just waiting on the state) before they will schedule AJ's surgery. We are on day 51 of waiting for the state's approval.

In the meantime, we are packed and ready to go for his overnight stay at the hospital. Everything except the things we use on a daily basis, like his cuddle Tigger, pillow, my contacts, etc. Daddy went out and found button up shirts for him and all of his zip-up/2-piece button up "Hef" pajamas were set aside for the hospital stay and post-surgery.

In preparation for our super-sensory kid wearing a bandage on his head for a few days, we have been wrapping his head with an ace bandage. He looks like a little ninja :)

Physical Therapy
AJ is definitely growing again. He's backed off on the walking...again. His hamstrings are wicked tight. I mean tight. It has been a while since I've seen him take a few steps and fall backwards-almost tipping. This would be his hamstrings tightening and actually pulling his body backwards-making him fall. Back to the infant massage several times per day.

His PT has been amazed with his fast progress recently. Both the stairs and the stepstool were goals on our last IFSP. We are now walking him up and down the stairs. We are still to encourage him to crawl up and down, but need to faciliate the walking. We have also moved on to getting into his car seat on his own and the beginning of potty training. We were lucky to have his PT here twice this week :) Today, being that it was a warm 34 degrees out (haha) we had him make his first attempt to climb into his carseat on his own. He did better than his PT expected.


Occupational Therapy
We continue to work on dressing. We dress him in standing, which some people find odd, but it helps improve his balance. He can pull his shirt up and down, take off his socks, and put his arms in his shirt in like a pro. Workin' on the whole pants thing.

We are also working on marking paper (coloring), ripping paper, and dare I say it, cutting. His OT brought a special scissors last week that we've been trying with him. AJ's midline (bringing hands together to middle of body) has been improving, so we hope this will help with stacking blocks and putting objects "in" a container.

Language/Early Education
Due to the holidays, we didn't see AJ's TOD for a few weeks. She was extremely impressed with his progress when she saw him last week. He turned to the drum upon first presentation...same with the cowbell. I get such a kick out of watching AJ watch his TOD sign. :) We still have yet to make a decision on which communication option we desire for AJ...but his TOD is patient and answers any/all questions we have. We are sort of in limbo at this point. But by the time he has surgery, we need to make a decision-at least a path to start on.

AJ's TOD and I discussed, at length, our tour of Lowell. A few days after our tour we had a bit of scare. We were unsure if our district would contract with Lowell. Certain school districts do not want to do so and claim they can provide the kids with services in their own district. This may be true for some kiddos, but in our opinion, not our AJ. Not yet anyway. Thankfully, after several phone calls, we're in the clear. We will have our transition meeting, with our Birth to 3 coordinator and the School District Rep, in about a month. A few weeks after that will be his first IEP meeting which will include those two people as well as AJ's new teacher at Lowell, and his current therapy team.

Yesterday, he was all about signing "more", when I wasn't looking. While he was feasting on my Mom's awesome BBQ pork, he decided to sign more while I was flipping through a magazine. Great-Grandma was watching him, as was I out of the corner of my eye. Sure enough, he'd sign when I'd go back to the mag. Stinker. It may come as no surprise that I haven't been able to get his signing on video yet....

Since we wrap his hands individually with coban, so I decided to try wrapping his hands together on Tuesday. He sat for 15 minutes and watched his light toy and didn't fuss at all. The next day he was coming to midline and signing more like a champ. I think I'm on to something.

Explanation: Coban is a self-adherent wrap that sticks to itself, but does not stick to other materials or skin. You can find it by the bandaids at the drugstore. But I will warn you its $5 for a tiny little roll. AJ's PT and OT introduced us to Vetrap. It is most commonly used on horses and comes in a variety of colors. Vetrap is made by the same company as coban, and is virtually the same thing-it just costs a whole lot less! I get AJ's HERE.

Feeding Therapy/Oral Motor Therapy
Bah Humbug. Over the last two weeks, AJ has gone from drinking his milk and water like a champ, to not drinking anything at all. We have tried everything to get this kid to drink. Then he started doing the same thing with food. Talk about a food & drink aversion. This...is NOT good for a child who is supposed to be getting 1500 calories per day and is walking around all over the place. AJ's eating/weight issues are one of my biggest stressers. Most of you know that, and know that it really bothers me when we have a setback or issue in this department.

At feeding therapy yesterday, his SLP gave him banana milk in a special pink cup. The cup is called a Flexi Cut Cup and can be found HERE. We have the middle sized blue cup, but the pink one is a smidge smaller and works well for him. He had great lip closure, NO leakage, and loved the milk. Whew. His SLP thinks that he probably gulped too much liquid while drinking recently and that sent him backwards. He did drink some of the milk in his sippy, and went back and forth between the two cups and his scrambled eggs. He drank 16oz of banana milk yesterday. We have to slow him down and teach him how to control the cup, taking breaks between sips.

His SLP was very impressed with his use a fork, his ability to turn it around and know when he wasn't the correct way. She was excited to see him go after some eggs that had slipped out of the bowl and onto the tray. What's so big about that? He went after them with his fork, not his paws. He's using his fingers to push foods (raisins, fruit loops, etc) to the sides of his mouth. We have to watch him with the raisins as she thinks he's not chewing them properly and swallowing them when they become "slippery" and flat. We also need to help with his bite & tear skills...meaning when he eats soemthing like chicken nuggets offer him a nugget to bite and tear while he's still got smaller chunks on his plate. We will continue with using the Nuk Brush , Probe, Small Textured Spoon, and Z-vibe tools to encourage lateral tongue movement, chewing, and biting.

Last night, AJ's Dad brought home chicken nuggets for AJ. As always, AJ crawled up on Dad's lap when he sat down on the couch. I come into the room, and there are my boys, chompin' on chicken nuggets and watching the Bucks game. It was just too cute for words. For a few moments, I just sat and watched the two of them and was in bliss that my 2 1/2 year old was actually eating and happy about it.

Banana milk is hard to find around here, but after naptime, we'll be stopping and getting it wherever we find it. (I already checked, they don't make banana powder for flavoring regular milk). We and his team have all agreed that his highchair is still not benefiting him. He's just too small, among other reasons. This morning I brought his other chair back up (without the tray) and it worked like a charm. I managed to get him to drink strawberry flavored milk (whole milk w/strawberry syrup) this morning...along with cheesy potatoes, fruit loops, and Captain Crunch's Crunch Berries. Whatever WORKS.

Caution: Toddler on the Loose

In the last 24 hours, we've had two fat lips and a bloody nose. I'd say we've definitely got a toddler on our hands :)AJ now prefers walking vs. crawling. YEAH! He's gotten stronger, walks smoother and more controlled and is ALL OVER THE PLACE!

On Monday he took a few steps backwards for his OT. On Thursday I caught him standing on the couch. Yep, I said the couch. Apparently the view of the fan is much better up there :) Except i couldn't figure out how he had gotten up there. We have a makeshift "staircase" made from a step-stool, a Huggies diaper box, and then the seat level of the couch. I took him down and he showed me exactly how he had gotten up there. He skipped the step-stool and stepped onto the diaper box. WOW! On Friday, he showed his PT his new skills-she was thrilled! Now, we can move him to the real stairs, while practicing on the couch. He also held both his hands abovce his head while holding a small board book. I don't know why kids always do PT things for the OT and vice versa. They just know!

He's also mastered eating with a fork and with a spoon. He just started holding the bowl with his left hand and then scooping/eating with the right hand. Amazing. He has also figured out how to place his sippy cup back on the table when he's done taking a drink. AMAZING! Our little man is doing things that a typical toddler is doing. When he was first evaluated, AJ was at a two month old level. Now we're working on 3 year old skills.

CAUTION: AJ on the MOVE!