Sunday, May 22, 2011

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:
Cloud B 7313-ZZ Lavender Lab Aromatherapy Plush
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....

Friday, May 20, 2011

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 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, May 19, 2011

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, May 15, 2011

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 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!

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