Lavender Lab

During one of my weekly trips to Target, I spotted an endcap with some adorable animals on it.  After browsing I found this:

His name is Lavender Lab.  He has 100% lavender aromatherapy packets inside!  The scent lasts for 5 years.  Give a gentle squeeze and place him on your child's pillow during the day.   To read more and find other cool stuffed animals (like the Sleep Sheep) click HERE.

The Easter Bunny brought this for AJ and he loves it.  Because AJ's olfactory sense is so strong-translation-his sense of smell is amazing-I knew this would be great for him. The lavender scent helps calm and soothe him to sleep.  Most of the time....

Where's your faith girlfriend?

I dunno.

If someone finds it, please let me know.

Yesterday AJ was denied physical therapy.  Well, technically they approved 6 visits from now until November, stating it was follow-up to a home program.  In English you say?  This means his therapist is supposed to "check-in" with me and see what we're doing at home once a month.

Um, no.  Total wrench in our plans for the summer.  Remember how I mentioned AJ loves his pool therapy? 

We're meeting today to discuss a plan.  A plan that has very narrow options.   Today is also a big day in terms of "will we have a place to live in a few months" and a sudden reminder of Jeremy's brain getting funky.

I grew up Lutheran, as did Jer, although we were in different synods.  Mine was middle of the road with a bit more strictness than other churches of that synod, and Jer's was liberal.  So much so that I was freaked out when I first attended his church when we were dating.  This congregation greeted one and another, shook hands, and moved around the church.  HORRORS.  In my chuch, we barely turned around and said hello. 

We married in Jer's church, which became our church.  AJ was baptized there, but soon after we felt unwelcome.  It was a period of uncertainty in our lives, just before AJ was diagnosed with anything, and we felt laser beam eyes stare at us as AJ cried and fused in the back pew of the church.  As we moved to the cry room, we read a sign that said, "Please keep your children quiet, the glass is not soundproof."  We realize now that we took the sign our of context, but it was enough to make us never return to that church. 

We ignored the church idea for a long time, afraid of the indirect rejection happening.  It is amazing how things change when you have a special needs child.  Over a year ago we found a church closeby.  After watching some sermons online, I found myself in tears.  I sent an email to the pastor entitled "Lost Faith". In which I literally spilled our guts and asked pertinent questions that I had no answers for.  His response was understanding, encouraging, and heart-warming. 

We've attended the church a few times, and even though they have a buddy-program for children with disabilities, we still haven't taken AJ.  Why?  Too scared.  Yep.  We feel a connection when we attend, which is what is supposed to happen, but we still shy away from it.

Throughout our journey with AJ, I've heard things like: You are the best parents in the world.  You are a saint.  He is so blessed to have you as parents....my new favorite line to despise-you were his savior.  Um, no.  I know you are trying to make me feel good, but really it just pisses me off.  I am human, just like you.  I do not want to be put on a pedestal because guess what, pedestals fall.  I'm confused as to God's plan in all of this.  Some days I think it was meant to be, other days I'm completely at a loss. 

What doesn't kill you makes you stronger.  Well, I'm feeling like Pop-Eye already, and I don't really need to be any stronger. (And yes I like spinach)  When is enough, enough?  I realize that I have not experienced things such as genocide, the tsnuami in Japan, or homelessness.  I realize there are people who are experiencing much, much worse. 

But given all of that, we're still feeling how we're feeling.  Who's bright idea was it to have my husband's brain go hay-wire when we've got our hands full with AJ?  When is enough, enough? "God will never give you more than he and you can handle together." Well, we're not together.  Perhaps that is a problem, perhaps not.  All those quotes annoy me honestly. And don't try and push your faith on me because its your faith.  Not mine.  My faith has been shaken again and again.  I know He's there, I just want to pick his brain.  I know, I know.  You shouldn't question the Master Planner.  Well this planner wants to.  Let's have coffee and hash this out.

Everytime we feel like things are turning around, something else happens.  Oh I know, woe is me.  Pity in the USA.  But this is my blog, and if I want to share my absence of faith, I will.  I was numb when his physical therapist called me yesterday.  I gave her a line about remaining positive, but really?  I wasn't.  I was numb and at the end of my rope.  I'm numb about Jeremy's MRI today.  I'm just numb. I've lost the ability to hope, to hope for the best possible outcome.  It has been along time since we've had the best possible outcome.  Sure, the little things are natural highs-but we all know they never seem to last as long as the lows do. 

Faith is a tricky thing. 

Thursday's 10

1. AJ's IEP earlier this week went well.  15 people: 2 hours.  In short: AJ will be in full-day kindergarten next year.  He will keep his 1:1 and we'll be adding special education to his education plan.  A handful of the people at the IEP are going to pow-wow and figure out what his day will look like.  After that, I'll meet with them and we'll make changes, if needed.  He qualified for ESY (Extended School Year AKA summer school) so he'll have 40 minute sessions 3x week.

2. Per #1, I have the sudden urge to go and purchase school supplies.   Seriously, I can smell them.  The smell of new notebooks, crayons, and pencils excites me.  I'm positive the supply list for kindergarten is longer than it is for preschool.  HOORAY!

3. AJ put his coil back on his own head yesterday! It was a random thing that I happened to witness.  Total awesomeness. 

4. We're seeing a HUGE decrease in ripping off the whole kit and kaboodle AKA cochlear implants and glasses.  HUGE.  In fact, I cannot remember the last time he went to pull the whole thing off. 

5. AJ brought me a spoon and a Frosty the other day.  He had gone in the drawer, grabbed the spoon (which is not new), grabbed the Frosty off the table, and brought it to me in the living room.  When I asked what he wanted, he signed "open".  For him to put these two ideas together, pardon me, three ideas (I want to eat the frosty, I need a spoon to eat the frosty, I need an adult to help open/access the Frosty) is HUGE.

6. AJ is officially signed up for his challenger baseball league and hippotherapy (horse-riding therapy) over the summer.

7. AJ had an evaluation with the SLP Guru who is the co-founder of the intensive therapy program he attended last fall.  She was very impressed with his progress!  She observed AJ eating with his own SLP, and we talked about his trunk, balance, sensory needs...we talked about it all.  She is amazing, and I am so thankful we get to check in with her at least once a year.

8. AJ is doing a much better job of waiting for his food.  Last night, when he was clinging to my legs as I was trying to move around the kitchen, I told him to go sit in his chair, and pointed in the direction of our kitchen table.  He walked across the kitchen, into the dining room, and climbed in his chair.  Hello Receptive Communiation.  Oh how I love you.

9. I made Pillsbury brownies the other day.  Yep, right out of the box.  They were DELICIOUS.  They tasted just like homemade.  I won't be buying those again anytime soon though.  Between hy hubby, his brother, and myself, they disappeared very quickly.

10.   AJ was denied speech therapy through his state insurance. Currently his primary is Jeremy's insurance and the state serves as a secondary.  He is getting to an age/stage in his therapy career that getting services will be an increased challenge.  Part of the challenge being that he is doing so well.  For now, AJ's primary is paying for speech 1x week.  Well, he's seen twice a week.  Once for feeding, once for speech while he's in the pool.  I'm not giving up speech in the pool.  Sorry peeps.  It looks like we'll be covered for one visit, and we'll be paying for the 2nd session per week ourselves.  All in all, AJ's had 4 1/2 years of therapy, with, quite honestly, only minor hiccups.  We have to be thankful for that.

Sunday Sermon

Last night was the first night I've really slept in over a week.  Stress and uncertainty do not allow restful sleep.  At least for me they don't.  I'm sure you won't be surprised when I say a lot is going on right now.

1. AJ has been growing at a merely INSANE rate.  He's fitting into 4T (one pair was even a 5T with the waist rolled!) pajamas, 3-4T shirts and 3T pants.  This is crazy.  He has never, ever it into clothes that were the same size as his age.  Just last summer he was wearing 18 month shorts!  I'm trimming his fingernails at least once a week.  His sleep patterns are a bit off, with lots of napping. While this is a GREAT thing, it is also a novel thing.  We are not used to him growing like this.  It's a whole new experience for Mom and Dad.

2. With the growing, comes the tighteness, rigidity, and spasticity of his cerebral palsy.  Grr.  Despite some rough days, and some really rough days of walking, he has not stopped walking.  We only had one day of tylenol for the pain, which is good.  When he tightens, we increase massaging his legs and entire body, we put him on the treadmill, a lot, we take him to the park to climb (and naturally stretch his muscles), he wears his TENS unit, and we pray.  A lot.  For some reason when you are in the middle of the tighteness, you feel like its never going to go away.

3.  I lost one of AJ's tennis shoes, with his $600 orthotic inside of it, the other day.  Can we say, panic mode?!  Jeremy found it hiding behind one of AJ's curtains (they are thick and reach the floor).  WHEW.  Of course, he is growing so fast, I've noticed he's just about at the point where the orthotics are too small. 

4. AJ had an appt with his orthopedic surgeon two weeks ago.  He was thrilled with how AJ looks.  I do believe he even said the word impressed.  Best news I'v heard in a long time.  Follow-up is scheduled for 8 months.  I love it when they increase the time between follow-ups.

5. AJ has been enjoying his pool therapy.  Let me rephrase-totally loving his pool therapy!  He receives PT and Speech together in the pool.  Yes, my child with a cochlear implant has speech in the pool-while he can't hear.  Makes sense right?  We are jumping on the bandwagon and going to use the aloksak bag method of allowing him to hear in the pool, wearing one of his implants.  In short: you put one implant in a waterproof bag, place the coil on his head, cover with a swim cap.  He absolutely loves the water and this child has NO FEAR.  Scary for Mom, tons of fun for AJ.  You know, the usual heart attacks boys give their mothers....

His body immediately loosens when he hits the water.  It is so amazing.  Since AJ already thinks he's a porpoise, it would be great if he could just live in the water.  They work on things like rotation (it is very hard for him to rotate his body to the left), strengthening...they do it all.  I often have a hard time as his therapists call his name, and he doesn't respond.  Aloksak bag, here we come!

6. A few weeks ago AJ's PT and I had a chance to chat during his pool therapy (her student was treating AJ while we were chatting).  The words baclofen pump came out of her mouth.  My reaction was typical, asking factual questions and becoming very quiet, very quickly.  As we were leaving, a young mother with three completely normal children kept staring at us.  AJ was extremely upset he was done swimming, and continued his pathetic and LOUD wailing in the locker room.  As she left, she gawked one last time and I asked her if I could help her with something.  She backpedaled-stuttering "No" as she walked around the corner.  As we left the building, AJ continued to wail and I could not walk/run fast enough.  It is amazing how awful a complete stranger can make you feel.  I already frustrated because he was wailing, then for people to take notice and give you that "Whats wrong with your kid?" look, I just lost it.  The emotional erruption regarding the baclofen pump happened once I hit the car and was hidden from public. 

A baclofen pump is a round pump, the size of a hockey puck, that is placed under the abdominal wall.  A catheter is fed (inside his body) from the pump around to his spine, to administer the medication, which would decrease his spasticity.  The continuous medication tends to work better than say an oral dose.  I relate it to insulin shots vs. an insulin pump.  AJ already has tibia torsion and the concern is now with his increased growing, whether his femur will begin to grow incorrectly due to his muscles being tight and turning it in.  Femur issues could lead to hips issues....are you overwhelmed yet?  I am too.  You can check out the pump HERE.  Ironically, the baclofen pump is made by a company that also manufacture insulin pumps. 

My mind would not allow me to process another surgery, much less something the size of a hockey puck protruding from my child's abdomen.  My very small child's abdomen.  I complete shut down, which is why there was no "Hey, were getting a baclofen pump for AJ" post on this blog.  Since the original conversation, I agreed to a meeting with his physical medicine doctor and his physical therapist together to discussion the pump at length.  Although (and I just have to add this), his physical medicine doctor's first reaction was that his sensory system can't handle it right now.  I'm not going to lie, that was my first thought too.  Whew.  We'll see what happens. 

7. When Jeremy finished school, I decided I wanted to look into going back and earning my Bachelors.  What started as a call, purely for general information, led to my enrollment and my first class beginning the day after Jer's ended.  Ok!  I am pursuing my Bachelor of Arts-English through the University of Phoenix online.  AKA I wanna be a writer.  It was, dare I say, easy until two weeks ago.  This past week I found myself angry and bawling at 2:30am finishing a paper.  What was I thinking?!  I'll keep plodding away, and keep reminding myself that a new class begins in two weeks.

8. As you may remember, we applied for Family Support Program funding and this year, we qualified.  A very long story short, all of AJ 's items were approved including......an iPad 2!  We are so excited!!!  I will write more in another post.

9. A few months ago we had a parent-teacher conference for AJ which left us with the options for AJ for the next school year.  Another year of preschool (this would be his 3rd year) or kindergarten.  We, honestly, hadn't thought of kindergarten as an option-yet.  Alas it is.  I had a meeting with AJ's awesome teachers late last week and we pow-wowed about AJ's options.   It was a great meeting and I think we are all leaning toward the same option. 

10.  Why did we meet?  Because AJ's IEP is tomorrow.  This is the first time, EVER, that only his school staff will be present.  Which knocks our number of people at the meeting to 14 (or around there).   Well actually, I think that might be the same, since we are taking away outside and have added school staff.  Oh well, you get my point.  Because AJ's cognitive delay is, uh-hum, is what it is, we are doing a re-evaluation at this IEP, and pulling in special education as well as the school psychologist. Fun times.  I don't think Super Mom's are supposed to have vodka in their coffee mugs, but I'm seriously thinking about it. 

11. Our house has been listed for 5 1/2 months.  When did that happen?  Seriously.  We'll be closing on this house between mid-June and mid-August; due a unique situation that is our saving grace at the moment.  However, with a few small trips planned, and our realtor getting married in another country, we got the ball rolling on finding a new house.  Insert: mega stress.  This process, of course, in true Heidi & Jeremy fashion, has gone all wrong.  With having one city to choose from, two huge dogs, and other issues, we're rather limited. Without boring you, lets just say we've found a house, we hope to offer on it next week, and pray in the meantime no one else sees it or likes it.  Because it is our only option at this point.  I have seen more mold, mildew, crooked basements, wet basements, and nastiness to last me a life time.  I have cried more tears of uncertainty than I swear I did when AJ was diagnosed with all of his whoo-ha.  We had high hopes and excitement for house-hunting.  This was our first experience, and it failed miserably.  I feel like screaming, "Could something just go right?!"  We're keeping our fingers crossed.

12. AJ begins his challenger baseball league in early June.  It is 5 Saturdays.  AJ also begins his hippotherapy (horse-riding therapy) in early June.  Dad's excited for the baseball, I'm excited for the horse therapy.  During his IEP tomorrow we will be discussing AJ's eligibility for ESY (Extended School Year) for the summer.  Clearly, he qualifies, but we'll discusss how many days and the duration.  He was also continue all of his private therapies over the summer.

13. AJ ate a regular peanut butter and jelly sandwich-without the bread toasted-last week.  This is monumental.  He's over the toddler forks and spoons, so I'm off to the thrift shop today to see if I can find some salad forks. Regular forks are a bit too big but the salad size are just perfect for him.  He's doing a phenomenal job in feeding therapy.

14. On Friday AJ had another evaluation with the SLP Guru.  She was impressed with his progress since she saw him last.  Lots of things are going to change.  He's growing up, and its so fabulous to see him make so many gains.  It truly makes me a proud Mom.  And, truth be told, added more fuel to the fire that gives me the energy to keep doing all of this.  I was just about on empty.  Hooray for AJ!

Apron Strings

My Gram used to tell a story about one of my uncles.  


He had expressed his desire to join the military, even though he was legally underage.  He stopped talking to her, in traditional teenager temper-tantrum form, and would direct all of his questions to Gram through his siblings.


Gram's boss noticed she was distracted at work and asked what was bothering her.  She shared the situation; to which her boss asked, in his oh-so-pragmatic-voice, "So what's the problem?"  She began to hem and haw and "Well.....well...," herself out of actual giving an answer as to why she didn't want her son to go into the military.


After a long pause her boss asked, "Anne?"


"Yes, Judge?"


"Do you have a scissors in your drawer?"


"Yes." (she pulls it out).


"Good.  USE IT."


Later that night, during dinner, my uncle asks his brother, "Please ask Mom to pass the peas."


She passes the peas and says, "Please tell your brother I signed his service papers today."

It wasn't until I was eye to eye with a 4-pack of fruit cups that I realized I too have apron strings.

I know it sounds strange.  Fruit cups?  Yep.  Most of the time the messes created at mealtimes don't bother me.  There are few foods that bring out my sensory issues: oatmeal, the residue from cinnamon cereals, and fruit in syrup.  Blech.  Somehow, I started draining the canned fruit AJ eats before cutting it into pieces (when needed).  I've avoided buying the fruit cups for a long time, for fear of the syrup.  And forget putting them into AJ's school lunches.  Oh no, we can't have that.

These little suckers seemed to be haunting me.  I debated and debated.  And then I bought them.  After owning up to my tight-tight apron strings.  The only way he's going to learn is by exposure.  Believe me, I've already applied this theory to many other situations that my brain debates constantly.

It isn't about the fruit cups, ya know.  While I consider myself as AJ's advocate, even I have faults and apron strings.  Its been a few weeks since I began this post and I'm happy to report that AJ is doing just fine with his fruit cups a la syrup.  He's also showed us that he is able to climb in and out of his carseat, safely, all by himself.

A few weeks ago I had the opportunity to join Jeremy on a weekend trip a few hours from our home.  I initially decided not to go, for fear AJ would not do well with us being gone again after his rough reaction to our Hawaii trip.  I decided to go.  In addition, I did not write my in-laws a 12-page detailed instruction list.  I gave them the basics (which they are already familiar with) for morning and evening routines and then, are you ready, wrote the words "HAVE FUN!" in the middle section of the single page of directions.  Oh, and I hand wrote it-it was not typed.  I think that deserves some sort of control freak brownie-points or something.  I enjoyed the weekend and guess what, AJ had a blast with his grandparents.  Another string snipped.

He's growing up so fast.  And I'm doing my best to let him.

8am on a Monday

It is 8am in the morning.  I just ate a poptart for breakfast, curled up in bed with the laptop.  The hubby is curled up in a comforter on the couch and AJ is still sleeping.  So why am I not sleeping?  Darn you  Mommy-insomnia.

AJ's been sick for about 2 weeks.  A cold has been going around his class and all the kids have had trouble getting rid of it.  So I thought nothing of it other than-bad cold.  Fast forward to last Friday and AJ takes a visit to the pediatrician.  Bronchitis.  Fast forward several hours, Mom and Dad have it too.  We all get the same medication.  I thought it was hilarious, given the situation.

We felt pretty good on Saturday night and went out with friends.  Yesterday, we crashed and burned.  I had been leading with "feeling better" points, but AJ took that over yesterday.  He begged to go to sleep early and then bee-bops in and out of his room for several hours.

I tried to go to bed early last night, only to be distracted by the flashes of light that were outside our bedroom window.  Quite the electric storm and lots of thunder boomies last night.  I turned on a movie and fell asleep.

2am I hear giggles coming from AJ's room.  I go in and change his pull-up and try to get back to sleep.  More lightening. Restart the movie.  AJ keeps on giggling. Jer wakes up coughing and the broken sleep continues.  AJ's always been a great sleeper, so it is rare for him to be up, and we're used to not being woken up during the night.  I don't do so well with broken sleep.

I kept AJ home from school today again in hopes he will be energized for school tomorrow.  While he's feeling better and running around like a  maniac, he's still sick.  Jer stayed home too.  Its rainy and ucky out.  A good day for PJs, chicken soup, and movies.

It seems like we've all be sick forever...or at least AJ and I have been.   We have not been so lucky this winter.  I'm so ready for Spring and nice weather....

Why It Is The Way It Is

A few weeks ago I spent the day with a friend.  We picked her kids up from school and drove exactly 2 minutes.  It might have been less, I don't remember, because we were looking for a house with black shutters.  Anyhow, I remember thinking thats it?  We're here already?


I've gotten some flack for being freaked out about showings for our house and how "OMG" I make the whole situation.  To me, it is OMG.

When when we first decided to advocate for AJ to go to his current school, we started talking about moving.  That was over two years ago, when we toured the school and knew it was the right fit for AJ.  After taking our parents and showing them where the school was, and their comments being "Where are we going?" and "How much further?!" and "You can't drive this every day" we knew we weren't crazy.

We thought about it and thought about it and came up with reasons why we should wait.  We knew it would be difficult.  We knew it would be hard.  We knew AJ's school district would eventually say "No, he can't go there anymore." We even packed up boxes one summer and planned to list/move in the fall. It didn't happen.

All of that stress transfers into today's stress of actually having our house on the market.  And now I realize all of that avoidance has made it that much harder.  I have no desire to approach our home district about schooling for next year, yet that's just what we'll be doing in May because of how the timing of all of this played out.

They say selling your home/buying a home is one of the biggest stressors in life.  Um, yeah.  I totally agree.  Even though we already went through buying with this house, we have never had a house on the market and then looked for another house.  And while I hear of stories of people who have had 173 showings and have had their house on the market a whole lot longer, I don't feel that makes our situation any less of a situation.  Because I'm feeling the stress.

I have a hard time keeping our house in exact showing order.  I have a child with an agenda a mile long and two gigundo dogs.  The cat doesn't count, she's self-sufficient.  This housing market is tough.  I take the suggestions our realtor gives us and own them.  I take the feedback we get and (after fuming for a few hours because I take it personal) work on what I can.  There are some places I actually do draw the line.  No I'm not putting in new windows, did you fail to notice the new furnace, boiler, flooring, bathroom, and kitchen cabinets?!  Hint Hint!


I clean my little heart out and try to have our house look how it does on our online listing.

Hello.  My name is Heidi Schmidt.  I'm a control freak.  Nice to meet you.

The little things mean something these days.  If doing those little things will sell my house, well then heck ya, I'm down with that.  (Did I just type I'm down with that?)  Things that stress me out?  Trying to juggle two dogs, who for whatever reason love to snooze in the living room, when you want to clean your carpet.  Or your kiddo who purposely spills his apple juice 10 minutes before you have to walk out the door before a showing.

All of these things happened last night and this morning, just before our showing.  The showing I learned about yesterday.  Requested for right smack dab in the middle of the day.  AJ's sick and I'm sick.  Fantastic.  I kept AJ home and packed all of us, dogs too, in my HHR and took off.  Sadly, I left the horn at home.  Its all we needed to complete our clown car.  Seriously.

We ran errands and then I decided to drive back to the house to see if the showing had happened yet or not.  Our realtor had once mentioned that we could park close by and just watch if we wanted, instead of leaving for the full-time.  When I came back and realized no one had been here, we parked in the neighbor's drive and waited.  I saw a car pull up with the prospective buyers and left.

Fast forward through lunch in the car, dropped AJ off at therapy, enjoying a Starbucks, picking AJ up and discovering the dog had jumped the fence (backseat) and ate a yogurt, we finally made it home.  To where I anxiously ran in the house looking for a realty card.  Usually the realtor's leave one so you know they've been there (I didn't know that, did you?).  No card.  I have no idea of the showing happened or not.  Grrrrrrrrrrrrreat.

We've had several showings now, and each time my little heart thumps with all sorts of emotions.  The more we have, the more anxious I am in hopes that this showing someone will make an offer.

An offer that would make our lives easier.  I cannot fathom driving two minutes to AJ's school.  There is a huge different between 2 minutes and the current 4 hours I drive each day.  I can't even imagine how much time that would give me to do things without calculating how much time I have for insert activity here minus driving time.  I am constantly turning down appointments for both myself and AJ because of driving times.

I miss seeing picture of my baby boy on the walls.  We've been prepping to move for so long, I haven't a clue how long they've all been down to make our house look "homey yet generic".  I'm ready for a new space to call our home.  And yes I know our situation is unique and at the latest we'll be moving late summer, but my habit of wanting everything "NOW!" just like most of us is rarin' and ready to go.  I know I know I know.  But its still hard.  And stressful.  You can't please everyone, but you want so badly to please at least one person so that they'll like your home...which allows you to move on with your life.

They say its not personal. It is soooooooooooo personal.  At least to me it is.  This has been a long time coming and now, its just dragging.  Like a ball and chain.   Blech.

I'm picturing our new house with a big bow on it, with a note on the kitchen counter that says "Just a little something to completely change your life."

Love,
Your New House

Tuesday's 10

1. Well, its OFFICIAL!  Jeremy earned his Bachelor of Science in Nursing degree!  Two years of hard work and he's finally done.  He did a happy dance last night...I'm sorry all of you missed it!

2. We qualified for funds through the Family Support Program 2011!  We are thrilled!  What this means: We can use these funds to purchase equipment for AJ, pay for respite care, even a fence for the yard!  I was amazed to learn that funds can be used for everything from studs to drywall to equipment or toys for a sensory room for AJ.  Once we move, we're dedicating a space in the house to AJ.  A sensory/play room, full of all his equipment/toys/and bins o' stuff!  We will be contacted mid-year to make sure he still qualifies (ummmmmmm ok) and to discuss how they'll distribute the funds.  HOORAY!

3. Today was Gram's birthday. She would have been 91.  Ironically, I ended up honoring her today.  When I was in high school I worked at a retirement community.  For a few years a group of us, from the same high school worked in the prestigous dining room of the independent living wing.  When I saw the mass of media Gram had, I knew exactly where it should go.  I donated her media collection, everything from Casablanca, Bob Hope Specials to JAG and The American President.  Everything her generation will enjoy, and more.  Happy Birthday Gram!

4. I saw an ambulance today, on the opposit side of the median and headed the opposite direction, stuck in traffic for almost a full minute.  The ambulance was going "Lights and Sirens" which means its an emergency (not like being in an ambulance isn't an emergency) and that means you MOOOOOOOOOOOOOVE!!!  Did you hear me screaming?!!!! Two cars sat in the right hand "turn or go straight lane" and they didn't budge.  Turn right and bust a "U-turn" people! Ridiculous. I've been in the back of an ambulance, scared beyond belief, with my young son.  And in that ambulance I had a brief conversation with the medical staff on how frustrated it is when people don't move.  So this is my plea-MOVE PLEASE!!!

5. A classmate of mine from high school was tragically killed last week.  While we weren't close, I still remember his smile.  I don't think I ever saw him frown.  EVER.  He was a jokster, a class clown, but with class.  At the tender age of 30, his death is a shock.  Facebook has played a huge part in uniting everyone and sharing news.  Our class lost another classmate during our Junior year.  We've been through this before-and I think its a bittersweet bond our class shares.   I imagine Mike would say something like, "Life is short, people.  Live it up!"

6. I'm anxiously awaiting information regarding a challenger baseball league.  I read about the league last year in our UCP newsletter and we figure AJ is big enough to participate this year.  Exciting!

7. All good things must fade, right?  We had two weeks of "YAY! Botox!" and then AJ started growing again over the weekend.  He's having a bit of an issue walking and is super tight.  Sometimes I secretly chant to his brain, "send the message to loosen the muscle, send the message to loosen the muscle." Apparently his brain doesn't have ESP. 

8. No Katy Perry, I'm sorry to say I never feel like a plastic bag...drifting through the wind.  Sorry.

9. AJ has used a tricycle over the last few weeks at school.  Last week, when the weather seemed warm enough to be outside with a hat/coat, I pulled out his tricycle.  He's sooooo close to riding on his own.  I'm thrilled he gets the concept, now we just have to teach him how to pedal independently. 

10.  I've been researching locations for AJ's birthday party.  Let me say, the rates for a birthday party at a water park are insane.  Insane.   For just a few hours of swim time, a cake they provide, and a small space. I think we're going to go with a different plan.

Naturally

Last night Jeremy and I watched a few shows from our DVR list, one of them being "Off the Map".  If you haven't seen it, its the newest creation from the minds of those who created Grey's Anatomy and Private Practice.  We said we wouldn't get sucked in.  We did. 

The episode was called There's Nothing to Fix. {You can watch it by clicking on the episode title} While there are always multiple story lines, one in particular sucked Jer and I further in. 

A set of new adoptive parents brings their baby girl to the clinic.  Something is wrong, and they aren't sure what.  The parents share how they've traveled in a group and everyone else's baby is perfect, and they can't even get her to burp.  One blood test later, the child is diagosed with leukemia.  Options: return her to the orphange or keep her and deal with the leukemia.  The parents forge forward, until the mother is drapped in a gown and mask and someone hands the baby to her.  She freaks out and leaves.  The mother decides she doesn't want to parent, so they ask the clinic to call the orphange.  Before the orphange comes, the father is found next to his daughter and pledges to be her father, even when that means divorcing his wife.  He picks the baby girl up and knows exactly what his purpose in life is.

Now, set aside your thoughts about my corny review, and realize I just about bawled myself right off the couch while Jeremy said "Awwwww," aloud. 

I don't think parenting comes naturally to all.  I really don't  Clearly, this woman was a good actor because I wanted to reach through the screen, punch her, and scream this baby neeeeds you.

One of the questions I despise hearing is "How do you do it?" 

I think I've changed my answer to this question. It used to be "You just do."  For some it is that way, for others it is not.  Parenting is hard enough.  Parenting special needs, and multiple special needs is a whooooooole different ball of wax.  I chose to be a parent.  To me, thats very black and white.  Either you are a parent, or you don't want to be.  Black. White.

As soon as I saw my son's referral photo, he was my son.  Plain and simple.  I took on the duty of getting him home as soon as possible.  If that meant filling out a billion forms. Fine.  If that meant interviews.  Fine.  If that meant visiting him in a foreign country twice.  Absolutely.  We were fighting for him even before he was in our arms.   We've always felt a sense of urgency when it comes to AJ.

When he was diagnosed, that only made us fight harder.  Ugh.  That mother character from the show is still rubbing me the wrong way. 

When AJ was placed in my arms for the very first time, I knew I was meant to be his Mommy.  Walking away has never been an option. No matter what, we keep loving.  We keep fighting on his behalf.  Because to us, its natural. 

What's He Doin'?

Physical Therapy
AJ had another set of botox injections a week ago.  Both in his left leg, hamstring and calf.  To read about the use of botox with cerebral palsy patients click HERE.

This was his second set of injections and I was a bit unsure, considering we never figured out how well the first ones worked.  After seeing his PT last week, I'm thrilled to report that the botox is doing its job.  It seems the dose was just right, and loosen him just enough.  Too much and he'd be more woobly than he already is.  Now is a critical time, where we need to keep him loose and are once again using Kinesio tape on his left leg to deter his leg from rotating in. 

After a lot of back and forth between AJ's PT and his CP doctor, we've also added UCB orthotics to his apparel.  Instead of taking him in to have a new UCB molded, therefore billing insurance, yada-yada, his PT thought maybe there was a way to take apart his AFOs (that we had stuck in a drawer) and use the bottom as a UCB.

After consulting with AJ's orthotists, we took his old hinged AFO (like this one):
 
(Image from here)

and took them apart.  By using the bottom piece, voila-UCB. 

(Image from here)

They are working well.  AJ remembered what they were and when we only put the one piece on his left foot, he picked up the other piece and handed it to me, raising his right foot.  Apparently, he likes to match.  While he doesn't need both, they must make him feel balanced, and its certainly not harmful for him to wear both. 

Botox usually lasts 4-6 months, but with AJ's super high metabolism, his will last around 2 months.  This is a critical time for consistent physical therapy, taping, the UCBs and using his TENS unit, treadmill walking.  Basically whatever we can do to keep him loose and encourage proper movement/alignment while he's nice and loose.  It is amazing to feel his hamstring loose instead of feeling like a rope.

Occupational Therapy
AJ is doing a great job pulling his own zipper on his coat up and down with the help of a small keychain (bigger surface to grab).  We are dressing in standing every morning, after we pick out our own clothes of course.  Some day soon I hope he'll start to hold on to his dresser instead of me! 

He opened his door by himself this morning, so I'd say we've met that goal.  He's also started opening the screen door, walking out to the porch, turning around and slamming the door in my face.  Lovely.  I'm actually thrilled he's doing this.  His use of a fork is much improved and his cup skills have just skyrocked.  He's showing an increased interest in Mom and Dad's big drinking cups.  Oh boy.  He's now able to lean over the bathroom sink (its kitchen height-so this is a challenge) and reach the knobs for the faucet.  More like touch them.  I give him another week and he'll be able to turn it on himself.  And yes, I actually am excited about this.

We're still working on stickers.  Why the boy insists on crunching them in his fingers I don't know, but we'll keep trying.  He actually doesn't try to eat them or destroy them anymore-so thats progress. 

Feeding Therapy
We're working on what I call Fair Foods and Sides. AJ's had hot dogs, like any other kid, cut up and then cut up again.  He graduated to the dog, cut into regular slices. Now we're on to eating a hot dog in a bun.  He blew me away two weeks ago, when his feeding therapist reported he bit into both the dog and bun-together.  Just the week before we were separating the two to try and get him used to one at a time.  We'll be moving on to burgers on buns, chicken sandwiches, corn dogs, and any other type of mash-up foods that we can think of.  In addition to that, we are working on vegetables of all different textures.  Its definitely not a taste thing, its how its presented to him.  Adding cheese sauce to things like broccoli or cauliflower helps AJ manipulate the food and break it down easier. 

We are increasing AJ's sessions with his feeding therapist (who is an SLP), adding one session per week where we will work solely on SPEECH.   During our last visit with AJ's CP doctor, she voiced her deep concern for re: speech therapy for AJ.  While there is nothing big enough to show up on AJ's MRI, there are definitely some short circuits going on.  He is severely apraxic.  While he is, clearly, understanding and his receptive language is exploding, he has no way to turn it around and respond...turning the input into output.   And he wants to!

School
AJ had his first tear free week last week. HOORAY!  I'm so proud that he's approaching novel activities with less protesting.  He gets super excited when he sees me packing his lunchbox because he knows that means he's eating lunch at school.  I was a bit worried how he'd do after being off for five days before going back last week-and he did just fine.  HOORAY!

We'll be having our parent/teacher conference next week, which will be chalked full, believe me.  It is an important meeting, with lots of information to cover.  It feels like an IEP, just with less people.  We'll be discussing his upcoming IEP (in two months), ESY, next year, and I have a typed outline updating his school staff on all he's doing outside of school.

Neurology
We recently saw AJ's neurologist and received the "all clear".  He'll stay on the same medication dose for his Keppra and we'll follow up in a few months.  He was pleased with his walking/stability, his head growth, and he interaction during the appointment. While at the appointment, his neurologists asked how he was doing socially.  To which I replied "horribly".  I shared that AJ's CP doctor and I had had the same conversation, at length, just the week before...where she literally said my child was "socially akward." 

{We know}.  I'll post more on this later.

CIs
AJ's repeatedly taking of his coils.  All the time.  It has become a huge problem, and by the end of our day has tested all of our patience.  That's all I'll say at this point.Well, this weekend he didn't do it as much, so I guess I will say that. We saw his audiologist at the end of February and were again, not able to get an audiogram.  We'll try again in a few weeks. 

Weight/GI
AJ weighed in at 27lbs at the neurology office, which was super exciting.  He's fitting into 4T pajamas, 2T and some 3T pants (rolled), and 3T shirts.  We haven't seen GI for almost a year and I'm starting to wonder what they'll say when we go in May.  AJ needs to take a complete vitamin and I cannot get him to take them, AT ALL.  Note: The gummie vitamins are NOT complete vitamins.  I have crushed with a pill crusher, crushed it to smithereens with a mortar and pestle, mixed it into yogurt...and he KNOWS.  He just knows.  Sigh.  I will keep trying, but until we are on regular regimen of vitamins, we continue to give him the supplemental drink- Kid Essentials.  He's eating, he's growing, and that's all we can ask for....

I can't think of anything else at the moment!