Sunday, November 6, 2011

PECS Book

I've mentioned AJ's PECS before.  PECS stands for Picture Exchange Communication System.  Taken from this website, here is the easiest way to explain PECS:

PECS begins by teaching an individual to give a picture of a desired item to a “communicative partner", who immediately honors the exchange as a request.

At the beginning of the 2010 school year (his 2nd year in preschool) his school SLP and I decided it was time for PECS.  She made him a small PECS book from a small binder (think day planner size).  After asking if she had another binder the same size, I made one for him to use at home. Since I am in the middle of making him his 2nd (BIGGER) PECS book, I figured I should get these photos on here ASAP!  I was thrilled to finally find the pictures on our old laptop to share with all of you!  


Supplies Needed:
Small Binder
Velcro "Rough" & "Soft"
Pendaflex Poly Clear "EasyView" File Folders
Cardstock or Construction Paper 
Computer/Word Document
Laminator/Paper Cutter/Hole Punch

First, eyeball how long your velcro strips will be and cut to size.  Choose either the rough OR soft but make sure to cut the same "texture" for mounting on the top of the binder and each page.
 I chose the "rough".
I used the label sheet for the folders to decide on the right size pages.
Cut your folders in half first.
Then cut to desired size.
Make sure they fit, then hole punch.  Er, it is a bit tricky to line it up. 
 I made marks with a pen.
(Make sure your binder surface is clean!)
Mount your velcro on the front.
And on each page.
I created a table in MS Word, making sure each row/column was 2x2 inches.  
I inserted pictures of AJ's things and also used general images from online.  
I cut red pieces of cardstock 2.25x2.25 inches to back the photos.  Red  is the color AJ is drawn to.
I ran the pictures through my laminator

*NOT PICTURED*
I then cut them, cut squares of "soft" velcro and placed
a square on the back of each picture.


Here, I've put them into categories.  
When we first started, they were all mixed together.
And finally, here are some photos of my little man
COMMUNICATING!


Wednesday, November 2, 2011

2011 ToysR'Us Differently Abled Toy Guide

It's Here!

This year's ambassador for the guide is Eva Longoria.  While I must admit, walking into ToysR'Us sends me into toy overload, I LOVE LOVE LOVE that they put this guide together. Every.year.  This year's guide seems much larger than years past.  Way to go TRU!

Go HERE for the guide's home page, where you can read about it and download a digital copy.  If you choose not to download a copy, you can find the catalog in the stores.  It is usually displayed along with the weekly flyer.  If they are out, try asking for one at the customer service desk.

**Check out the little dudes on Page 20, 22, 28, and 31!

Tuesday, October 25, 2011

Tuesday's Happy 10

Things that have made me happy this week:

1. AJ using his PECS book consistently at home.

2. Finding the perfect gift box for the perfect gift for a friend's birthday.

3. The smell of homemade applesauce cooking away in my crockpot.

4. Finally getting somewhere with AJ's sensory/play room in the basement.

5. The release of Breaking Dawn: Part 1 being released in less than a month!  I am so excited!   This Mom and I already have our tickets and plan to devote our day to Edward the movie.  I'm not into much, but its so nice to have a little escape from the every day.  After all, isn't that why we go to the movies? Sparkly vampires make everything better.

6. AJ spontaneously sitting on his floor and playing with his firetruck and monster truck.  Hooray!

7. The new series Pan Am.  LOVE.  I love that time in history and its a show I know Gram would have loved too.  If I was going to a Halloween party I'd totally dress up as a stewardess.

8. Shredding of old documents.  I've spent the last few days using a $20 piece of therapy called the shredder. Like writing, it has seriously helped heal some old wounds.  Along the same lines, I finally tossed out a binder we were given when AJ's hearing loss was diagnosed.  A usable binder, sure.  But it was linked to something emotional.  It looked phenomenal in the bottom of a black trash bag.  I've wondered why I've been hanging on to every document for AJ.  Not anymore.

9. This song:

*Yes, this is on the Breaking Dawn soundtrack.  Don't be so surprised!

10. Playing some ridiculous "guess the song" app with my hubby when we go to bed at night.  Laughing at each other is so fun.

Sunday, October 23, 2011

In Which Things Are A Total Mess

After AJ's ER visit last Sunday, I decided to keep him home Monday and Tuesday.  Monday he was full of energy and helped me make applesauce.  Of course, I keep him home to rest and he's restless.  On Tuesday, I woke up with this feeling in my gut to keep him home again.  My gut was right, we spent the day alternating between his bed and his net swing outside.  He was tired, lethargic, and definitely not himself.

Wednesday morning brought tears when I put on his implants in the morning, which was odd.  By 10:30am school called me to come pick him up.  He had cried for the last two hours and just would not calm.  Of course when I picked him up and took him home he was happy go lucky.  But still, not quite himself.  He had a huge lunch and then we headed to the pediatrician's office.  I had made an appointment on my way to school to pick him up.

The ped visit was a waste of time and gas, as nothing presented itself.  I have been in "CI mode" regarding his behavior that I was on the path of an ear infection or perhaps just a virus that might have come back to bite him twice.  No such luck.  Although he was pretty cute giving himself the exam.  He took her stethoscope and placed it on his own chest and put the otoscope in his ears.  Other than  being reminded of the discomfort that comes with his constipation nothing else presented.

Thursday, we tried school again and luckily he had a pretty good day.  That evening was parent/teacher conference.  His conference went well and I always wonder what it would be like to talk to one teacher.  Because we had 8 people to talk to.  I much prefer these short meetings to IEPs, since IEP meeting (at least ours) are always loooooong.  What we took away from the conference is that AJ is doing really well despite all his bumps in the road.  What is interesting is the comments we hear from those that have seen him grow over the last 3 years and see the changes he's made during his school day.

We had a chance to explain that AJ has grown 4 1/2 inches in a very short period of time.  We met his new school OT.  We learned he's not only doing the Ling 6 perrrrfectly, he's doing it for 3 different people in 3 different environments, with 3 different styles.  This thrilled us and frustrated us at the same time.  We are keeping the length of AJ's school day the same, although we are toying with the possibility of increasing one day a little.  His current schedule leaves him very, very tired at the end of the week, and sometimes he's worn out by Thursday already.  I could go on, but let's just say given all he's asked to do, he's handling it quite well.

Friday morning went well and AJ was happy to go to school.  I pulled him early to take him for a consult with his PT.  As I suspected, he is a total mess.  she didn't say it, but I know her well enough to know that he's in he roughest shape she's seen him in a long time.  He's still growing and has NO IDEA where his body is.  I've learned that trying to explain growing and how it messes up your sensory system for a child with cerebral palsy AND sensory intergration disfunction (SID) is like beating my head against a wall.  So I'm just going to say he has NO IDEA where his body is.  We came up with a plan and I spent the next 45 minutes swinging him.

The plan consists of a combination of pool therapy, swinging/vestibular input, vibro-tactile imput, TENS (e-stim unit), and botox.  He's turning his foot leg in from his hip AND his ankle/foot itself.  New territory.  His hip relaxed during swinging, but his foot did not, until about 10 minutes in.  This plan also requires me to adjust my perspective and remember that AJ is not just dealing with one thing.  Its not just his CIs.  When he had that seizure last weekend I was totally in seizure mode, not anything else.  So when he threw up, my brain didn't even think about him having a stomach bug.  Because I was in seizure mode.  It's so much at one time, I'm finding it hard to focus.  But we're going to keep trying.

Yesterday was a disaster.  Early in the afternoon AJ crashed and spent the rest of the day in pain, yelling at us.  No matter what we did, it was wrong.  Swinging wasn't enough, the TENS unit wasn't enough.  He didn't even enjoy the inpromptu bath we gave him.   He got to a point where he just kept screaming and screaming and screaming and we didn't know what to do.  It was him telling us he was overstimulated and needed quiet and no one touching him.  He didn't even want his nightly body massage.  I put him in bed and felt his little body relax, a teeny tiny bit.  I left the door open and soon found a little man standing next to my bed.  He had seen me carry in a bowl of snacks.  We sat and snacked on my bed for a while, with smiles and giggles and all.   He then took my hand and led me to his bed, where he politely asked me to go to bed by signing please.

Heart. Melt.  Tears.

I am so worried about him I can't breath.  Of course yesterday morning brought on the worry of seizures.  He was fine.  I feel so helpless.  I worry something bad is going to happen and I'm not going to be able to stop it. I had thought by now, in my oh-so-altered-life of parenting that we would have been quote unquote "done".  It did not work out that way.  This is never going to stop, is it?  I think we are both coming to terms with this, in different ways.  It has brought a lot of stress and frustration, and change.  A change in mindset and how we look at the future.  While we were swing AJ in the backyard last night, I mentioned that the amount of stress we were feeling is the reason so many couples with special needs children end up divorced.  While we consider ourselves strong people, sometimes...it is just too much.  For both of us.   Don't be alarmed that I used that word, I'm simply stating a fact.  The stress is completely different from raising a typical child.  Yes, parenthood is stressful, but this is a different type of stress. It.just.is.

Its Sunday morning and AJ's awake.  Giggling in his bed.  And we are both hoping that today will be a better day, in some way.

Monday, October 17, 2011

Thanking My Lucky Stars

AJ made another trip to the ER yesterday.  I'm not really sure what the combination was at any given time, but it was a long seizure together with gastroenteritis (stomach bug).  The two things that made me freak?  I've never seen him vomit with a seizure before and on the first attempt to using his Diastat pen, it was broken.   He's fine.  I know, how can I just say he's fine?

Well, first we had an amazing team at the ER.  Not that we have bad ones, because we never have.  But, this was a good crew.

Second, a Flight for Life case came rolling in while we were there.

And I just can't shake these thoughts out of my mind.

Talk about perspective.

AJ had rolled over to take an impromptu nap, in a foreign place, so I knew he was tired.  I covered him up him up and chatted with my Mom.  As we sat there, someone whisked in front of our room, pulled the curtain across the glass doors as far as it would go and closed our glass doors entirely.  It didn't take long for me to spot the Flight for Life jumpsuits and the yellow stretcher.  There was a small child on it, with an ambu bag and chest compressions being done as they were rolling by.

In that moment, a sense of guilt rolled over me.  How dare I be so freaked out, when my child is sleeping so peacefully and this child is in the next room with 50 people trying to save his/her life.  Yes,  I know I had every right to be freaking out internally, but that type of thing really puts you in perspective.

Let me say that the staff was extremely professional and the scene was nothing like the chaos shown on TV.  They did a great job of keeping everyone calm and "in the dark" if you will.

A few hours later I made my way to the restroom (thinking I really should not know exactly where the restroom is in the ER) and of course, my curiousity was in full force.  There was one pair of shoes in that room, sticking out from the curtain.  Hm.  My mind immediately went to the worst case scenario.

The staff kept coming in apologizing profusely; I didn't care that things were taking longer.  I bit my tongue from asking about the room next store because I knew they wouldn't tell me.

As we left, the room was completely empty, lights off.  The room had been turned over for another use; ready and waiting.

Did the child survive? Where was he or she?  Was the child in surgery?  I've been thinking about this child, his or her family all night.  How unfair life often seems to Jeremy and I in this journey of special needs parenting.  How often we become frustrated that no one "gets it".  All of that disappeared in an instant and I felt incredibly blessed and guilty at the same time that my child was sleeping during his ER visit and was back here at home in his bed.  He was fine.

I just read a post on another blog about a little boy who passed in the middle of the night from a seizure.  He was 4.  FOUR.  This seizure stuff is serious stuff people.  And yes, it scares the crap out of me.  The timing of this post was not the greatest, but who am I to complain?

I'm still thinking about that Flight for Life child, and saying prayers that he or she is well, wherever they might be, and thanking my lucky stars that my child is cooing in his bed so early in the morning.

Friday, October 7, 2011

Even I Forget Sometimes

I posted that gigundo update and totally forgot to mention his epilepsy.  Oops.  I've been finding it hard to focus on just one thing with Mr. AJ.  Probably because he's got so much going on.

EpilepsyThe day after our fun trip to the ER in August was followed by a 24-hour EEG here at home.  He was such a trooper.  Seriously, I'd rather have these people come and do one again than do it in the clinic.  He was extremely tolerant with having the leads put on ...the only part he didn't like was the air compressor. Yeah.  After they use the goop to stick the lead on, they cover it with a small piece of gauze dipped in this nasty glue that smells like a cross between gasoline and acetone, and then use an air compressor to super-fast-dry the glue.  Those suckers weren't going anywhere.

We received the results of his EEG about 3 weeks later.  AJ has normal activity during the day and "some" abnormal activity during drowsiness and sleeping.  Meaning, he's still having some seizures when he's drowsy and sleeping.  While I let out a huge "whew" that he is ok during the day, it still bothers me that he's having any seizures period.  How could it not?  Having activity during drowsiness and sleeping is very common for those with epilepsy.   His neurologist's nurse gave me the example of a child who goes for a sleepover.  It is very common for a child to have activity if they are not on their regular sleep pattern.  Sleep is important for children with epilepsy.  Great.  Another reason for my to worry and fret over AJ's sleep.  Not only does he need it in relation to just plain being a kid, but also for rest from what his CP does to his body, now he needs it for his brain to rest.

Fast forward to yesterday and AJ has his first seizure at school.  It lasted about a minute or so and he was staring off while his arms went limp.  Fun stuff.  He was agitated after so they let him lay in his favorite little quiet room and after 3 minutes, he popped up a whole new kid.  He had a great lunch and afternoon at school.

Sigh. I jump every time my phone rings while he's at school, thinking its school calling me with something wrong.  Guess I'm still adjusting.    Crazy.  The nurse called and told me about the seizure and that was all.  As part of our seizure plan, this was normal protocol.  But I still wanted to run into that burning building, all hollywood slow-mo and save my baby from that burning building of seizures.  But it was over and done, with nothing to do.  I don't do well with doing nothing.

It is a very common misconception that just because your child is on seizure medication they are fine.  More seizures?  Up the medicine.  I have learned, through a very patient neurologist and his amazing nurse, that this is not always the case.  It can't be perfect.  While I don't want it perfect, of course I would rather my child not have seizures.  Duuhhh.  But, I'm grateful he did have his first seizures one year ago (already?!) and at least now we know and he's on medication to regulate things.  So, yeah.  Around the circle we go.

Tuesday, October 4, 2011

Fall Update

School
AJ's been in school a month already and is doing fairly well.  His day is very, very busy bouncing from different staff who are working with him.  Through collaboration between his SLP/TOD/myself, they created a daily log sheet that usually comes home with him daily.  Since there are at least 11 different people working with him on a daily basis, including three different aides, information is much easier to relay via the form.  It also gives me a chance to see how he did i.e. auditory therapy or circle time, if they need more cleaning wipes for his glasses or extra clothes. The back of the form lists his strengths, things he needs to work on and had difficulty with, msgs from his teacher, and reminders.  Genius.

Here is a list of the professionals AJ works with @ school:
Teacher of the Deaf
Regular Mainstream Kindergarten Teacher
Special Education Teacher
Aide #1
Aide #2
Aide #3
Speech Therapist
Auditory Training
Physical Therapist
Occupational Therapist
Specially-Designed Physical Education Teacher

He is currently attending school for about 4.5 hours per day.  We'll be meeting soon with the school staff to see whether we should increase his day.  Because this is his first year going "full days" (meaning not a combination of short & long days) the decision was made to ease him into the routine.  I am astounded at how well he is doing working with so many people throughout his day.  He's transitioning easier from one activity to another and having less meltdowns.  Especially now that we've been unilateral with his CIs.

CIs
Unilateral?  Yes.  Well isn't he bilateral?  Yes.  AJ's been struggling wearing both his implants for quite a while.  Since last Spring if we really want to get into the nitty gritty.  We've been unable to get an audiogram with his left implant (which is 1 yr 3 months old).  Yes, still.  And it is by no fault of his audiologist.  AJ simply does not respond like "typical" CI children.  Yep, I'm labeling.  More on that later.

Way too much flipping of the coils, even when his bandana is on.  Something has got to be sounding wonky to him.  But how do we change the maps so they don't sound wonky, when he can't tell us, much less respond to the stupid tones in the booth.  Can you tell I am super frustrated?  I've contacted another audiologist (since AJ's is out on maternity leave) and am hoping to get a fresh pair of eyes, ears, and expertise on the situation.

Last week I sent him to school with his left implant only.  He had the best day he's had of this school year so far.  No flipping.  We've spent the last few days with the left on, then switching to the right.  Something is giving him bilateral summation when he's wearing them together.  I'll be putting both his implants on tomorrow to see how he reacts now that he's had each on individually.  I'm determined to figure this out.  So I guess he flipping was for a reason.  It's AJ way of telling us it sounds wrong and he doesn't like it.

PT
Our appeal with AJ's state insurance was denied.  End of the road for that approach.  Our new insurance denied right off the bat, so we're fighting that, but I'm not holding my breath.  I've given them every thing needed to prove he needs therapy, a hum, that it is medically necessary.  They still deny.

AJ has had one session of pool therapy since the end of August.  Due to schedules, 515pm is the only time he can be fit in, and that is with his therapist staying after hours (He's awesome).  515pm doesn't work for AJ's schedule.  The only reason we got in the one session was because of other patients cancelling, I was able to bring him in sooner.  Even so, AJ decided to single-handedly close the warm water therapy pool that day and we spent a measly 10 minutes in the big pool before he was turning blue and shivering.  The kid just doesn't do well in "cold" water.  There was a 5 degree difference between the pools that day and he was freezing.  Crazy.

So we're brainstorming.  He's regressed-big time.  He's been wearing his TENS unit EVERY night for the last week or so.  He's growing, with his muscles so tight he can't put his left heel on the ground (unless the TENS is on).  There are a number of gyms here that have warm water pools, so we are looking into that.  Last week we cancelled therapy due to the virus he's been battling for almost 2 weeks now.  Which means 1) he didn't get his therapy and 2) we weren't able to get in the pool with AJ and his therapist to learn the specific things they want us to do in the pool with him.  There need to be more hours in the day.

Last week we picked up his new UCB orthotics and his new night splint for his left foot.  Thank goodness we finally got it.  I need to have a major pow-wow with his PT as his mobility is really compromised at the moment.  AJ stands in front of his carseat in the car and just stares because his body isn't allowing him to climb up.  I facilitate a smidge to get him going, which he does, but it is so hard for him.  The other day he slept 145pm to 6 and then 11 to 7am.  Can we say growing?

OT
I was not informed until last week that AJ has not been having OT at school.  This due to the fact that a new OT had not been hired to replace his awesome OT from last year.  There have been lots of changes for AJ's school and district this year.  The decision was made over summer to not have private clinic OT during the school year, so I'm a bit upset I didn't know there was no OT in place.  Yesterday I learned someone has been hired and will be starting soon.  Whew!  I know, I know, things can't be perfect.  But when you have child with special needs, part of you doesn't want to allow these important people in your child's life to do things like take a vacation, or (gasp!) leave.

iPad2
Speaking of OT, using a pointer finger, isolating that index finger from the rest, is a fine motor skill that is worked on by OT's.  So maybe that is part of why I was upset.  We got AJ's iPad2 a few days after school began.  It.is.the.coolest!  I've loaded quite a few app's for him already and will do another post all about what we are using for him right now.

Yesterday I met with AJ's SLP and TOD.  I purchased a communicate app called Proloquo2Go, which we discussed and played around with.  A few things came up in conversation, which prompted me to email the company yesterday.  Unfortunately, I did not receive the answer I was hoping for.  The program comes with several choices for voices.  They ALL sound like a synthesizer.  I'm totally serious.  It boggles my mind that there are so many other apps/etc that we use for him that have real sounds recorded and even real voices!  So why, a program of sheer sophistication does not have this, boggles my mind.  We were hoping for a "record a voice" option.  They are not rolling out this "product" until later this year at the earliest.

Why is this such a big deal?  A few reasons.  AJ is a cochlear implant user.  This type of sound, computer-generated, is one of the hardest auditory fields for him to hear.  Now, before you get your undies in a bundle and tell me that CI children don't have issues hearing electronics, let me say this.  These voices are REALLY BAD.  I mean, seriously. We all had trouble understanding them.  Words don't sound as they should.  The little boy voice that they offer is Kenny-but it sounds like an underwater smushing of sounds that comes out like a blurry "Penny" when he says, "Hello, I'm Kenny...."  Not cool.

In addition, it is very important to all of us that AJ's voice really sound like a little boy's voice.  Because he's a little boy.  And if this is going to be his voice, then it should sound right.  Not like a smushed or blurry anything.  Lately, he's been making some fantastic new sounds, some of them sound like what for normal children are early versions of words. Like when a child comes up with a name for something and its totally not the correct name.  Different tones.  It makes me smile, and I imagine what he's trying to tell me.  It is usually when he's excited, but it thrills me to hear something different than a whine or shreek.  You have no idea.

We've decided, for right now, to go with a different communication app which allows voice recording.  This program is also a bit simpler and will make his initial choices easier.  We can build from there.   I am also working on creating a set of new PECS books for AJ. His current books are too small and there is no room in the binder to add more pages!  We are also going to begin categorizing his pictures i.e. food & drink, toys, activities, etc.  I'll be making two books, one for home and one for use at school, so we are consistent.

How does AJ like the iPad?  Eh, he likes it.  Somewhat.  He knows what he has to do with a certain light show/firework type app to make the lights move.  He's got the swiping down.  Now we need to work on the pointing.  There is a "read me a book" app that he seems to pay attention to, which requires you to point on the arrow to turn the page.  This has been helping him learn the difference between swiping and pointing.  He's got the capability of using that index finger so we're going to use it!

Speech/Feeding
This appeal to our state insurance was also denied.  Fortunately our primary approved! We have an appointment today and I am anxious to get his clinic SLP's feedback.  I think he's also regressed in this area.  And I'm a bit concerned about his drinking.  So much so I thought maybe he had an ear infection and took him to the doctor last week.  (He didn't).  Maybe he's playing me for fool just because he doesn't want to drink anything except his new favorite juice/water mixture.  I have noticed him having a hard time swallowing/choking on his seizure medicine and sometimes with gulps of liquid.  At his last swallow study it was mentioned that part of his anatomy may be too large and may block/make swallowing difficult.  Needless to say, its been on my mind lately and I'm in the middle of scheduling another swallow study.

He hasn't had too much luck with hamburgers/hot dogs with buns.  Not enough feedback.  So, we toast the buns, and we still toast his bread, to give him some feedback.  The kid still loves to eat.  No worries there.

GI
Our last GI appointment went extremely well.  AJ weighs 27lbs 6 oz.  He grew over 4 inches in a year.  So yeah, he's growing up!  Just not out.  The GI was ok with his status and we don't have to go back for a year.  We also discussed AJ's issues with constipation.  It was decided he had chronic constipation, which was causing the urine accidents he kept having.  All that stool was pushing on his bladder.  Lovely.  We were given a script for Senna and told to use this in conjunction with daily Miralax to keep him regular.  We are still giving him the Kid Essentials-but he doesn't drink it.  Sigh.  So we're going to start mixing whole milk with the KE and see if he'll drink it that way.  We'll keep trying.

Hippotherapy
I am so happy for Fall, as it is my favorite season.  But I am so sad that means no more hippotherapy for AJ.
He absolutely LOVED IT and most definitely benefited from it.  We are definitely signing him up for it again next Spring.  There is something truly magical about horses.

Hopeful
AJ's little body is going through so much right now.  His sleep patterns are NOT normal and its rare he sleeps through the night. Which is a huge change for us.  He's tired from being sick, tired from growing, tired from battling his overall tightness.  And yet he keeps on moving.  He's regressed, A LOT, which worries me.  Yet he smiles..most of the time.  I'm hopeful that his body will give him a break sooner than later and that we'll get everything figured out with therapies. etc.
.

Wednesday, September 21, 2011

What Saves Me

I've written before about my sweet boy's amazing morning smile.  I've been trying to capture a picture of his uber early morning cuteness and well, it shouldn't surprise you that he turns into Mr. Growly Face when he sees my phone in my hand (does anyone use their camera anymore?).

It is usually mid-afternoon when my patience begins to run thin.  The removal of his left coil has occurred 8,438 times.  He's tired, I'm tired.  We're a mess. We somehow make it to and through dinner.  We move on to bathtime, which always brings a huge grin and rapid signing of the word "bath".  Bedtime follows, with the hugging of the greatest.pillow.ever and the tossing of his lavender-scented stuffed labrador out of his bed.  

Bedtime brings much needed rest to my little man and moments of peace for me.  It is the only time of day when I am too tired to think.  My mind shuts off, for the most part, and I do my best to stay awake until a non-ridiculously early time for bed.  Some nights I sleep well, some nights not so well.  I never know what the night will look like.  Gone are the days, er nights of sleeping through the night.  And yes, I have slept through the night since I became a mother.  Night-time is my time. Whether I'm out with the hubs at a movie, with a friend, doing homework, laying on the chaise with the laptop, or sleeping, its my time. 

When morning arrives, I open AJ's door and find this smiley, happy little boy.  Its like Christmas every morning.  And I sure do love my present. He is sooooo excited to see me! If he could talk I'd imagine he'd say things like "Mommmmmmmmmmy!" or I don't know, something else in a really excited voice.  It is by far, my favorite part of the day.   It rejuvenates my soul to start the day and get my little man up and at 'em.  I forget about yesterday's lack of patience.  I don't think about therapies, or splints, or spasticity, or communication modes, or calories.  I think about nothing and enjoy my son's amazing smile.

We recently took a weekend trip to a cottage up north.  While I intend to write a whole blog post about that trip, a special moment occurred the last morning at the lake.  We shared a room with AJ, which had a full bed and twin bed.  We heard him get up and did the whole "pretend we're sleeping gig".  That lasted all of one minute, when I had to pop up and peek at him.  He saw me and crawled off his bed.  I was sure he'd walk to the door.  Instead, he wandered to the side of our bed and climbed up and over his Daddy.  He cuddled with us.  For us few minutes.  And it was amazing.  This was the child who took years to warm up to just our bedroom, much less our bed.  He has never cuddled, in bed.  Ever.  It was a sweet, sweet moment for both of us.  Another gift we've been waiting a long time for.  

So, while I'm a little sad I wasn't able to get a picture of his morning routine of cuteness, part of me honestly doesn't feel like sharing it.  It is something that happens between my little man and I every morning.  So many mornings I woke up to an empty crib, filled with heartache.   And no, I don't think about those days anymore.

But I am so blessed to see his amazing morning smile.  Every day. 

Wednesday, September 14, 2011

Those Eyes

This past weekend I had the awesome opportunity to hold babies.  Yes, little peoples.  With gorgeous big eye balls, silly smiles, and cute little dimples galore.

Four days later, my heart is aching.  I'm sure it has something to do with this video that someone posted a few days ago.  Anything with adoption pulls at my heartstrings, but this one really got to me.

One of the hardest things I experienced with AJ's adoption was visiting the orphange.  All of these big eyeballs and smiling faces excitedly shouting, "Hola! Hola!" as we walked in the back door.  When the door opened to the front of the orphange, out to the courtyard (surrounded by a high brick wall and barbed wire) AKA the playground, older children bombarded us with "Hola! Hola! Hola!".  The look in their eyes was something I had never, ever experienced.  "Are you going to be my Mom?" My own mom wanted to load them all in a shopping cart and jump on the plane.  I was right there with her.

Knowing that my son would not be alive today if our adoption case had gone a month or so longer does not cross my mind often. Simply because it was not his reality.  But it does make me grieve for his brother.

At some point in the last few years I wrote a post about AJ's biological brother. Jose was brought to the same orphanage when he was 6 months old.  Their birthmother brought him in when she could no longer feed him.  This, despite the fact adoptions ceased in Guatemala six months earlier.  I haven't thought about Jose in quite a while, again, because he wasn't our reality.  At the time we were told about him, it felt like a cruel joke.  Knowing adoptions were closed and that he was literally "stuck" with no place to go.  But looking back, knowing he was never a possibility made it somewhat easier to draw that line. To unattach ourselves from the possibility that was...impossible.

A few weeks ago one of our neighbor's son was outside.  I turned around and saw the son and his little friend peaking over the fence at me.  "Hola!" they shouted, as their big brown eyeballs stared back at me.  I had a strange flash of what could have been...AJ and Jose together.  I have never had this thought before.  Honestly.  But the sudden presence of Jose in my mind completely caught me off guard.  He's been on my mind since.  I have no idea where he is.  I doubt the orphanage is still open, since the owner was arrested on bogus charges.  If he is alive, I hope that he is well cared for.  If he is no longer with us, I hope that he has found peace and love in God's arms.  It kills me to know we could have given him a life of love and a life with his brother.  Wait-no we couldn't have.

My heart aches for another child.  No decision seems absolutely correct. None are easy.  Which makes it all the more troubling.  Holding babies fills my heart with so much warmth.  Don't misunderstand me to be some 16 year old who things that having a baby is all fun and games.  Y'all should know me better than that.  But the yearning keeps growing stronger and I don't know where to go with it.

My mother-in-law once told me that there is never a perfect time to have a child.  You are never totally ready.  It is true that some people wait until after school, until after their career has reached a certain level, until they have enough money, or a big enough house.  We weren't one of these people when we set out to become parents.  It may come as no surprise that many have discouraged us from having more children due to AJ and all of his whoo-ha.   Discouraged us from pursuing careers and countless other ambitions.  I haven't known Jeremy and I to take the easy route anywhere.  While we've wished for the easy route, it still hasn't come.  I think we've begun to accept that this is our reality.  Why should AJ's disabilities discourage us from having another child?  I mean, besides the instant "gasp!" that enters your mind when you think of it, look past that.  It wouldn't be so bad peeps.

It took me a few years to understand what "Oh gosh, and he's your first," meant.  I know understand it. Completely.  We don't know any different.

As I was driving the other day, I decided on a girl's middle name.  Which is further than we've ever gotten in the world of girls names.  We've never been able to decide on a first name.  But I know that if we ever have a girl, she'll have the perfect middle name.  This epiphany lead to more tears (I should be banned from driving long distances) as I thought of the babies I held over the weekend, AJ, and Jose.  Having an impact on a child's life has brought me more joy than I could have ever of dreamed possible.  I love being AJ's Mom.

I'd love to be a Mom again.

Wednesday, August 31, 2011

Magic Carpet Ride

When AJ first began toddler group at the age of 2 years-11 months, there were three times during the course of group time where the kids would sit on carpet squares.  They'd grab them from a pile by the door, and put them away when they were finished.  It thrilled me the last few days of group, when AJ finally began sitting much better for the beginning circle time and  understanding the concept of holding his carpet square as he was guided to the door, and then dropping it in the pile.

When AJ began preschool it was disappointing to me that AJ was not able to participate in morning circle time, again, on carpet squares.  At the end of his first year, on the very last day actually, I saw him sitting with his friends, sans carpet squares but on the actual carpet.

During his second year of preschool he learned to consistently sat on his carpet square for morning circle time, the ENTIRE circle time and learned to anticipate the routine and participate.  He sat and paged through books with his classmate.  He learned to stay on his towel for quite time, the entire time.  While he struggled with different events (ie Holiday Party/Santa's Visit), the consistency during his normal routine was amazing.

Fast forward to last evening at Meet the Teacher Night for our little boy who is now in kindergarten.   We left the house in a rush on the muggiest day we've had in a few weeks. Eww.  For some reason it is always hot and muggy on Meet The Teacher Night.  I was a bit nervous, even though I knew who his teacher would be.  She had called earlier in the afternoon to chat, which put me at ease.  Less to try and "report" on such a crazy night.  AJ technically has three teachers.  He has his Teacher of the Deaf (TOD), Special Education Teacher, and the main homeroom regular Kindergarten teacher.  AJ will be spending most of his time between his TOD and his Special Ed Teacher.

As I stood in like with AJ's TOD to meet the main homeroom kindergarten teacher, I felt a bit of panic rise up inside me as we entered the room.  It was a huuuuuge room.  To the right I noticed a huuuuuge carpet, in a rainbow of colors.  One row was red, orange, green, blue, purple.  One huge carpet square.  How cute, I thought.  But definitely not appropriate for AJ.  It took literally seconds for me to deem this environment not appropriate for my kiddo.  He would be totally.lost. We spoke with the teacher for a few minutes, whom of course knew AJ already (everyone seems to know this kid) and said she had seen me around.

Meanwhile, AJ was outside in the hallway with his Daddy, having a massive meltdown.  This always happens at Meet The Teacher Night.  We begin our routine of early bedtime and longer days, and he's exhausted.  He had gone to bed at 6pm the night before, so when 6:05 rolled around and he was at school, when he's normally in his PJs in bed, he was noooot happy.  Along the way we ran into many of AJ's classmates.  We love being part of such a special family.  It is amazing.

We made our way down to his Special Ed teacher's room and chatted about AJ's new iPad2 that we were anxious to pick up last night after all the school shenanigans.  AJ's daily schedule is the topic of a meeting between the teachers today, so I should receive a phone call on that later.  For the month of September, he'll be attending M-F until 1:40pm.  At the end of September, we'll reevaluate and adjust his pick-up time as needed.

Our last stop was back in his TOD's room, where AJ made himself at home by finding the fan and...the carpet.  A smaller carpet, with a lovely texture that he sat down on and rubbed to his little hearts content.  At that moment, I knew he'd be fine.  While his TOD and I chatted more, AJ found the carpet even more comfortable, as he crawled into fetal position on the floor and wanted to sleep there.  As we were preparing to leave, he explored the room and found the sink right.a.way.  Crazy to see him walk right up to it and be able to reach everything-he's that tall!

I've had small moments of sadness, thinking about how my little boy is in kindergarten...but he's really not.  It bothered me to buy and sharpen pencils, knowing he won't use them.  He does not know his colors, numbers, letters.  He cannot spell his name.  While my mind has mostly adapted to this reality, every now and then there is a zinger or two that hit just at the right time that I lose it.  But last night was not one of those moments.  The minute I saw him sit down on the carpet, I knew he was in exact the right place.  It was the right place, the right carpet, and it was indeed, magical.

Friday, August 26, 2011

Winding Up

Its 4am and I'm wiiiiiide awake.  Funny what stress does to you.

Our sitters have been swamped with summer classes and visiting their families, so Jer and I haven't had a whole lot of time to ourselves.  I was thrilled when an "old" sitter (old meaning she's had a big person job for over a year now and left us back then) offered to watch AJ for us.

On Tuesday we went and saw the movie Crazy Stupid Love, which was SUPER GOOD.  As we walked out to our car, reminiscing about our own dating journey and all that goofy love cloud chatter that happens after watching a movie you relate to, I got in the car and gasped aloud as we pulled out of the parking lot.

I forgot to give AJ his seizure medication that night.  I panicked and panicked, as we've NEVER missed a dose before, all the while Jeremy assured me AJ would be fine.  We had started our afternoon at a much-stressed over GI appointment and then, since the weather decided to cooperate, I rushed home to grab pants and AJ's riding shoes and then drove to the sticks for riding therapy.  We got home, shoved some food in our mouths, and left for the movie.  And I totally forgot to give him his Keppra.

I called the sitter and asked if he was awake, he had just gone down 20 minutes earlier.  Waking him up to take the medicine would have been a holy disaster, and odds are he would have choked on it.  Waking him up would have required a full wakeup, and, well, we chose not to.

Fast forward to late Wednesday morning.  AJ wakes up (he's been sleeping late due to growing) and doesn't want to get out of bed.  He gives me his famous morning smile, but keeps folding over his pillow.  I walk him to the potty and he folds over the toilet, but no screaming-translation, I'm done get me off this thing.  I lift his dead weight body up and see he's having a seizure.  And by seizure, I mean drooling, the whole nine yards.  Not a cluster of absent seizures like we had seen a few weeks ago.  I set him on his bed and watched him till it stopped.  Then when he was back up to par we tried brushing his teeth.  More seizures.  His body goes weak.

Oooooooook.  New territory.  I sat him back on his bed and watched my child seize in complete horror.  No other word to describe it.  These were definitely seizures, no question about it.  He'd be fine for 30 seconds to 1 minute and then seize for 30 seconds.  Off and on.  I ran to grab his CIs and had already given him his morning dose of medicine. There was a profound amount of drooling, lip quivering (this is new) and mild twitching jerking of his upper body.  I called the neurologist's office right away.  But after a few more seizures and no calls back, I had already started pulling stuff out of his drawers preparing for the hospital.  This was in-between making sure he was still breathing and patting his legs, calling his name all through a stream of tears like something out of a freaking movie. Trying so hard to try and stay calm for my little boy, but crazy freaked out at the same time.  As if calling his name is going to snap him out of it.  I called 911.

He was sitting upright, but lethargic when the paramedics arrived.  It seemed to take forever to get clearance to go to our hospital of choice, but we finally got it and I followed in my own car.  I did not want to get stranded at the ER again.

If there has been one perk to Jeremy's new job, it is that he's been able to attend two important events in AJ's life.  The GI appointment the day before, and now a trip to the ER.  AJ was fine, crying and fussing when we walking in to his room, so we knew he was feeling better.  All in all the visit was very short and no exact reasoning was given.   A combination of the lack of medication and mayyyybe his fall last Sunday might have readjusted how his seizures are triggered.  That is much less likely than, um, my kid didn't get his medicine.

I left the ER with a rather tired boy and we stopped at McDonalds, because he was starving.  He napped as soon as we got home and was still tired when he got up, but a much happier little boy. We had friends over for pizza and it was a nice night.  It was nice to take my mind off of what had happened a few hours earlier.  However, I am making a rule.  No one is allowed to take pictures of me on an ER day.  Yikes.

Fast forward to yesterday morning, where AJ woke up happy as a lark and in much better spirits.  Only to have leads put on his head for a 24 hour EEG here at home.   I didn't cancel the appointment because, well we want to know if he's having clinically silent seizures (no outward symptoms) and we need to have this done before school starts-next week.  Clearly, he showed he could have symptoms the day before.  Anyhow, the last EEG we had was torture, for both AJ and I, so I was wound up as to how it would go.  He's done amazingly well and hasn't tried to pull that sucker off at all.  He even did well when she was putting the leads on.  I must say, the tech was fantastic, but I was prepared for horrible AJ to show his face, and he didn't. The only part his did not like was the air compressor.  Yeah.  They put the leads (electrodes) on his head with glue, then she saturated a small gauze piece with nasty smelling glue, then sticks a small sprayer type thing in a hole on the electrode and blows cold air on it all to dry the glue super fast.  His head is wrapped with gauze and then a stocking type thing, that leads down to his tail of wires and into the unit itself.  He looks like he's wearing a turbin on safari.   He did really well yesterday carrying the unit in a fanny pack over his shoulder.  I'd give him breaks from carrying it when he was eating and if we were sitting and playing.  But beware when he gets up to go and you have the unit not attached to him.  Yikes!  Of course, saying "HEY!" didn't help, because.....he couldn't hear me!

Which, is extremely difficult when your now hearing child via the wonderful magic of CIs can't hear.  ALL DAY.  What an amazing discovery as to how much he uses his hearing.  Anyhow, he was annoyed at me looking at books, because he couldn't here me.  Or his pop-tube, the puzzles, the microwave.  All things he KNOWS make noise.  Very cool, in the grand scheme of things.  By the afternoon I wasn't thinking it was so cool.  Our tree trimmers chose to come yesterday-I didn't anticipate them being here all day.  Since AJ needs to be 20-40 feet from this schmancy laptop they've set up here in the house, we were homebound.  Which would have been fine, if I could have taken him outside.  Chainsaws, ropes, falling tree limbs, chippers, and such do not provide such a great environment for a 5 year old.  He was stir crazy and so was I.  My adrenaline wore off and I was questioning why I chose to do this after yesterday's ER visit.

We went out for a family dinner last night, thanks to the same sitter.  I was never more thankful she's a nurse and was not freaked out when I told her what happened and if he has a seizure you push the button on the pack and log his activities, etc. Love her.  By 9pm, my stomach was in knots and I was exhausted.  By 11pm I was even more exhausted.

 AJ and I were up at 4am, for different reasons.  I think the last two days finally caught up with me.  While I did sleep last night, out of pure exhaustion, tonight not so much.  I feel myself winding up instead of down.  Watching your child have a seizure, and not just an absent one where he stares off into the distance, is seriously trauma.  Holy crap.  And while I harbored most of the Mommy guilt the night I didn't give him the medicine, clearly, this kid needs his medicine.  There IS a logical reason for me to be so diligent and timely in giving him his medicine.  Because if the medicine helps us avoid the trauma of watching my son seize and having his brain wig out, then guess what, 2mL twice a day should not be that difficult.  And yes I am human, I'm not perfect, but there is something about watching your child seize, that if you know it could have been avoided, that just plain sucks.  It makes you feel guilty knowing you could have done something soooo simple to avoid the consequence.

Just in case, I've set an alarm on my phone for his dosing times and I'm considering getting one of those baby video monitors for his room. Maybe not for use all the time, but it would definitely make me feel better I think.   My guess is he slept in so late the morning of the seizures due to having more seizures earlier in the morning.  Poor little dude.  I guess the most common time to have a seizure is in the morning and if he missed his night dose, then he missed the leveling off it gives him to avoid those.  Lovely.

I'm relieved he's handling the EEG equipment so well, I think that would have made things so much worse.  I'm anxious to take all of it off...well, let me rephrase. I am not looking forward to using the remover solution, which they tell me, removes varnish off of wood.  Nice. And I'm putting this on my child's head.    I'm not looking forward to that, but I am looking forward to having a hearing boy again and taking him to the park for some fun.

Now, I'm going to try and get another hour of sleep, before I get up and help my husband pack for his trip.

I hope its a quiet weekend.

Thursday, August 18, 2011

Tuesday's 10

1. I've been up since 3am, so I might as well blog, right?  Blame it on way too many Diet Coke's yesterday/last night and the fact that I heard our German Shepherd stuck under our new bed-again.  Seriously.  What possesses him to end up under the bed, when he can't get out?  I'm still not sure how he got under there.

2. My husband is asleep next to me, yet his Facebook status shows him online.  Hm.  Facebooking in your sleep?  That's a new one.

3.  This weekend is officially "Buy AJ his iPad 2 weekend".  Jeremy and I are so excited.  We spent over an hour at the Apple Store a few weeks ago playing with the iPads on display.  Seriously.  What else is there to do while waiting for your table at P.F.Changs?  We were both impressed that all of the iPads had multiple augmentative communication systems for users to play around with.  If I would have let him, I'm pretty sure Jer would have spent the evening on the Puzzle app.  Too cute.  His Otterbox just came for his iPad.  It made me cry.  We are beyond anxious to get our hands on this amazing piece of technology and open a new world of possibilities for our little dude.

4.  Our little dude, who is little, and isn't little.  At last week's neurology appointment, AJ weighed in at 26 lbs.  Say what?  NOT COOL.  Leave it to AJ to worry me a completely different body system while were at an appointment for his brain.  On the flip side, he is now 37 inches tall.  37 inches tall!  He's always grown up instead of out. But this is a little ridiculous!  The boy is all legs.  His neurologist was worried, because his last weigh-in (at urgent care) was 30lbs.  Well, it was an estimate.  He wasn't actually weighed that day. That eased things a bit, but the 26lbs is still a cause for concern, as it would mean he's only gained a pound in over a year.  We have an appointment with his GI doc next week and I'm sick just thinking about it.  I'm already feeling guilty in a million ways about his weight.  What are we not doing that we should be?  Sigh.

5.  Speaking of his brain...we're still on the same dose of Keppra, 2mL twice a day.  It is hard to say if this episode while vomiting a few weeks back was him being lethargic due to the illness, or true seizures.  His neurologist is suspicious of clinically silent seizures.  Meaning, is AJ have seizures and we don't know about it.  Like, as in, no symptoms.  So, we're doing a 24 hour EEG.  That should be fun.  A company will send a technician out to hook him up here at home, then wrap his head like a mummy, complete with cords down his back running into a backpack.  Then its my job to keep this on his for a full 24 hours.  I can already tell you, this is NOT going to go well.  But, I am hoping we get at least a few hours reading to see whats going on with the little guys noggin.  And, his neurologist and his nurse were thrilled to hear we were getting him an iPad, it seems these things are working wonders with their patients!

6.  At the suggestion of another wise special needs Mommy, I found an awesome baby mirror type-thing for the car.  I've been hyper about watching AJ in the car.  Like.a.hawk.  As a result, my neck was getting a bit funky from cranking my head in his direction a million times a day.  The mirror is about half the size of my rear-view car mirror and clips nicely onto my visor.  It also has a ball mechanism, so I can rotate and move it around to just the right angle.  LOVE.  Yesterday was our first day using it, and my neck was patting me on the back the whole ride.  I could see him, and I felt a bit better.

7.  Our new insurance kicked in a few weeks ago and much to our disappointment, PT and OT were denied. On the up side, feeding was approved.  Sigh.  AJ's PT and I made the decision to keep his pool therapy going, every other week, until September at this point.  We'll take it on a month to month basis.  He's amazing in the pool.  You should seriously see this kids face when we turn the corner for the community pool.  He lights up like a Christmas tree.  Totally adorable.

8. I'm turning 30 this week.  A bit of shock and awe in that statement.  I'm definitely ready for my 20s to be over.  I'm hoping for that magic fairy dust that declares "I don't care what people think" and "Do what is best for you".  Anyone have a pouch they are willing to share?  Seriously.  My 20s were packed full of uncertainty.    While I do not, in the least bit, regret being what is considered a "young mom" at 25, being a young special needs parents has taken its toll on me.  I look in the mirror every day and feel 40.  I guess that's what stress does.  Does anyone have botox or lipo in their pouch too?

9.  AJ was finally fitted for his new UCB's and his night splint yesterday.  He was casted 3 times yesterday.  NOT a happy boy.  I don't blame him, but there comes a point where his wailing and carrying on brings a ball of stress and a sense of discomfort to the space and people around him.  Hopefully they'll come in soon!

10. We are finally moved and getting settled into our new home.  After 2.5 years of talking, talking, and talking then trying to move, we've finally made it.  Leaving our first home was bittersweet, and we both experienced emotions this week that were unexpected.   AJ has adjusted remarkably well.  Out of all the things I thought of that might upset him, none of it did.  What did though, was the noise.  We moved from country to city living.  I truly didn't realize how quiet it was by us until we moved.  If you think about it-it is amazing that the sounds bother my Deaf child.  I mean, seriously?  That is amazing.  But he wasn't thinking it was so amazing.  It has helped to sit on the front porch and watch the "noises" as they go by.  Hearing them in the backyard, he was confused and just upset by the sounds.  Pointing out what the things are has helped, as well as exposing him to the sound difference between the front and backyard.  We LOVE having a backyard.  LOVE IT. We did it all for our little man, and couldn't be happier.



Thursday, July 28, 2011

Holding Pattern

AJ finished summer school today.  When did summer fly by, and why didn't I notice?  He did extremely well, with all his sessions, he only had one horrible day.  The rest of the days, he was thrilled to be there.  I'm planning on driving by his school a lot in the next few weeks, just to keep his brain connected to the place.  His visual memory is amazing, so I have no doubt he'll recognize it when we pull-up, or even play on the playground.

I'm nervous as to how he's going to react to the new house.  He's been there before, but I'm really hoping he adjusts well.  It will be a lot of change for him.  I'm also nervous as to what I'm going to do with him for 6 weeks before school starts.  Yikes.  Did I mention how much he loves school?

I'm frustrated about AJ's recent approach to potty training.  And I'm nervous that school, or someone or something, may ask us to stop potty training him.  We've been at this over 2 years.  And I'm exhausted.  2 years!  For a while, he totally had pee'ing down.  Let's not even talk about poop. As much as we try to ask if he has to go potty, and try to remember when he went last, the recent chaos around here has not helped the 'schedule'.  What is so frustrating is that he has the control, whereas many children with CP don't.  He can "feel it" just fine!   I've tried, several times to teach him how to pee standing up, and he just doesn't understand the concept.  Which is fine for now, we'll still have him sit and go, but that creates more dependence on his aide at school.  I don't know.  Its an issue, and I'm frustrated. Period.

I've purchased, labeled, and placed all of his school supplies in his backpack.  Yep, I'm that Mom.  I feel better knowing I won't have to run out and try to find 12 blasted glue sticks at the end of August when everyone is sold out of all the required school supplies.  No doubt there will be something his teachers throw on the list that wasn't there last week when I printed it, but I'd rather run out and get one thing in the midst of moving rather than the whole list.  Besides, my label maker makes me happy.

As with all things Heidi & Jeremy, this moving extravaganza has turned into chaos.  We were supposed to close yesterday. Yes, yesterday.  We are hoping for next week.  All of that calmness and "I'm not overwhelmed or panicking" I wrote about last week, is now present.  I just want it all to be done and over with.  We are stuck in a holding pattern.  Nothing to do be sit around and wait, while packing some last minute things.  Everything as planned, is now haywire.  Which, in theory, makes me feel incredibly dumb.  Because I truly should know better.  There is a fine line between the optimist and the pessimist.  Jeremy and I are both on that line.  Not purposely waiting for that shoe to drop, but given our past experiences, we usually assume it will. With moving, we were silly enough to think it would go somewhat well.  The best laid plans....

Monday, July 18, 2011

Mahalo Molokai

I can't believe its been five months since our trip to Hawaii.  We spent 8 days there...the perfect amount of time for us to unwind.  We flew into Honolulu on a Friday afternoon and stayed overnight close to the airport.  The next morning we flew to Molokai, which is the island nestled between Maui and Lanai.  Holy We Are In The Middle of Nowhere.  It was breathtaking.


Our hotel was the only on the island.  The restaurant was 20 paces from our room.  
Did I mention it was on the ocean?  Did I mention our room was right on the ocean? 
We had a gorgeous view of Lanai.

 Find one of the many small paths between the greenery and your on the sand.
 

We spent the week touring the island-all 38 miles of it.  

Heading to the West End we spotted this gorgeous spot.

 On our first night in Molokai our hotel sponsored a benefit for the Special Olympics.  
Did we want to go? Absolutely!

We tried local food favorites. This is "Loco Moco":

And had lots some of these...

 There are more Packer Fans on Molokai than you would think!

 We went off-roading and snorkeling...
And went to the beach...

 The most gorgeous black 
sand beach on the East Side-Halawa Bay.
(I had a print made of this shot for our new house-LOVE.)
 We enjoy doing lots of nothing...

 Night strolls on the beach...
 Learned about and cracked our own macadamian nuts!
 And celebrated 10 years of marriage.


I wasn't quite sure if this trip was going to doable, especially the night Jeremy bid on the timeshare week someone had donated to a charity event we attended. I was thinking about it logistically.  Who the heck is going to watch AJ and, and, and... It all worked out.  A very special thank you to Jer's Mom for watching AJ for the entire week.  

We had an amazing time and really had a chance to reconnect as a couple.  I was silly, he was silly.  We laughed until we cried.  We relaxed and talked about the future and talked about how we need to do this more often.  Perhaps, not a trip across the country all the time, but we found ourselves totally re-energized and ready for life.  We needed recharging.  We hope some day to make it back to Molokai, but for now, we'll enjoy our amazing memories.

Sunday, July 17, 2011

Sunday Heap

~Last week Monday we had our telephone court hearing regarding the denial of physical and speech & feeding therapies for AJ.  Our primary insurance stopped paying for these therapies eeons ago, stating it was just maintenance therapy.  I'm still not sure how any therapy with a child, much less a 5 year old, can be considered maintenance. Anyway, knowing our state insurance was covering these therapies was a huge blessing.  Even though they've denied before, we've appealed, and luckily we were given sessions before the hearing date.  Appeal dropped.

But this time, they weren't budging.  I spoke briefly to AJ's therapists, and went in a bit more nervous than I thought I should be.  I took the pages upon pages of each denial letter, grabbed a highlighter and pen and picked them apart.  I rehearsed as much as I could (other drivers on my route to and from AJ's school probably think I am the weirdest person alive talking to myself).The judge called and clarified this hearing was for two therapies.  Yes.  We started with PT, where I went on and on about how he needs it, and although I try my hardest, I am indeed, not a professional physical therapist.  Mind you, the judge states she did not have a copy of the physical therapy denial letter in his file.  Well, that's nice.

We moved on to speech and feeding.  Now that I think about it, I don't think I touched on feeding nearly enough.  I was stuck in the speech rut.  Especially since this goes back to when AJ first arrived home.  All in all the conversation, er rather me blabbering on for 45 minutes.

In the end, I am told that the petition AKA decision will be given by mid-September.  Well, that complete defeats the entire purpose of the hearing.  AJ was denied services at a very, very crucial time.  The plan was to prepare him for the upcoming school year.  The tentative plan is for AJ to attend kindergarten till early afternoon each day, every day.  There is no way he will be able to function for multiple therapies per week after school.

Instead, he has regressed. He is tripping and falling constantly, the tightness in his leg has traveled back up to his arm and shoulder again.  His UCB (orthotic foot inserts) are too small, so in addition to getting him in for the night splint, he now needs new UCB's.  When calling to make the appointment, I learned his orthotist is out on medical leave (you learn quickly not to go to just anyone to fit your child for orthotics).  The soonest we could get in is mid-August, which means we'll be lucky if we have orthotics by September.   Anyone want to know what his leg/foot/arm/shoulder are going to look like if we wait that long?  I don't.

In the meantime, I got creative and used my hairdryer to heat the plastic of his UCB and then stretched it out.  They use this process at the orthotic office, so I thought my ghetto attempt might work, minus the industrial heater and professional tools and, er gloves (OUCH!) they use.  It worked.  And I'll keep doing it until we get new ones.

As far as therapy goes, I'm not sure where we are headed.  The plan was to only continue on with feeding therapy 1x week once school begins.  While I know he won't function well after school if we try the same therapy frequency as last year, I'm not sure what is too much, but I know what is too little.  Since the appeal is virtually useless in relation to summer services, they might, just might approved a set number of therapy sessions for the future.  And we'd be stupid to not utilize those sessions.  We have a lot of thinking to do.

~AJ has another ear canal infection.  Yes, my worst fear for summer has happened-again.  On Friday I decided to take him to urgent care after pool therapy.  The kid loves pool therapy and his ears didn't need to be on, so I thought it was a win/win.  It was a waste of time, and money as we have private paid for AJ to have certain therapies this month.  Live and learn Mommy.  After dealing with a less than friendly and helpful lab technician and the rude staff at the particular clinic we frequent for urgent care, I decided this was our last visit.  It is time to find a new pediatrician who is closer and to whom I'll be more likely to go to when things of this nature pop-up.  

My poor little man was so miserable.  He sooooo knows the routine.  We go to the doctor, the look in my ears, I scream, Mommy drives to pharmacy, they don't have the script ready, so she gets mad and we drive to get some food, then come back, all the while I sit with the saddest most pitiful face, complete with bottom lip and tear action.  This is one area I am proud to say I am not patient with.  Dear pharmacy, allow me to plop my dehydrated, crying, in pain child on your counter.  You really want to make him wait?

Antibiotics take effect almost immediately with this kid.  I mean it.  He woke up the next morning oh so happy and full of energy.  And hungry.  Good Lord.  We put on his left ear (the infection is in his right) and he did great all day with it.  He napped and also slept through the night, which was a big relief to both Daddy and I. We are so spoiled that AJ has always been a good sleeper.  When he doesn't it throws the whole house off.  Even the pooch.  Today, I cringed and held my breath as we put on his right ear.  No tears.  He was bilateral by mid-morning and stayed that way all day.  Whew...I had visions of last summer and it was frrrrreaking me out.  In short, I love antibiotics. :)

~During Friday's pool therapy, AJ's PT once again reminded me how horrible his leg/foot look.  So I'm back to taping him with kinescio tape and the regular regimen of trying to keep him loose.  Its really disappointing that his tone is kicking in all the way up his left arm and shoulder too.  Boo.  She mentioned the word Baclofen again.  As in the medication.  I've mentioned the Baclofen pump before, and while we've deemed that would not be appropriate for him (and now there is new research showing the Baclofen in pumps may increase seizure activity), now Baclofen as a regular medication may be needed.  Groan.  She didn't say anything else about it, and I didn't push.  I'll just keep on doing the regimen and we'll hope for the UCB's, night splint, and a miracle.

~Last weekend wasn't particularly fun.  AJ had A LOT of absent seizures.  And I mean A LOT.  Jeremy counted upwards of 60 just in the morning alone.  All a few seconds in length of course, but yeah.  That many. Which means his medication isn't doing the job anymore.  Well, he did throw up that morning, so that could have made it worse since his meds didn't stay put.  He seemed better after a nap, but then they started up again. I put in a call to his neurologist.  We did a blood draw to check his Keppra levels: which I am anxiously awaiting.  Since he's grown so much, odds are its most likely just a dosage change.  I sure hope so.  EEG's are traumatizing for this kid, so I was glad to hear they didn't want to put him through that.  Since he had seizure activity, we don't have to do the EEG to see if there's been activity.  I also asked if taking his Keppra a bit off schedule could cause the activity.  It depends, each kid is different.  Oh generic answers, how I dislike you.  I think its safe to say it does for AJ.  

~We spent yesterday morning in our bedroom with AJ serenading us with tunes on his keyboard.  Daddy even joined in with lyrics.   We packed our entire closet and dressers into boxes.  Things are more and more sparse around here.  We are making terrific progress and I'm still not overwhelmed.  Imagine that.  I think one of the biggest calming factors is that we've hired movers.  I was wishy-washy about it from the beginning, but it has proven, by far, to be the best decision we've made in regards to the move.  

~Tomorrow is Monday, which means its "I wanna quit school" day.  The day in which I whine and feel overwhelmed and question why on earth I decided to go back to school in the midst of all of this.  Monday's the last day of the class week, which means the weekly big project or paper is due.  Tuesday rolls around, which will mark the beginning of Week 3 of this class, and I'll be fine.  I am contemplating taking more than one class per 5-week block once AJ is in school in the fall.  The only issue is financial aid only allows one class per 5 weeks, so I would have to pay for additional classes.  My university requires that you get your feet wet with a few classes and show you can handle the workload before they'll allow you to add additional classes to each 5-week block. I would love to finish my degree sooner than later.  Its either more classes, or a part-time job.  Both freak me out.  The job because I have visions of AJ needing me in some capacity, whether it be picking him up from school when he's sick, or needing to go to an appointment and I'd have to work.  There are still enough of those appointments that I'm just not sure I could find something flexible enough.  But, I am willing to look.

~Jeremy is researching programs to begin his Master's/Nurse Practioner Degree.   Wish him luck!

~AJ absolutely LOVES riding horses.  We've gone ahead and signed him up for the 3rd session, so he'll be riding until early September.  Here he is in all his glory:

Wednesday, July 13, 2011

Sweet Moments

Yesterday was a day which usually lives only in dreams.

As he does every morning, AJ flashed me the biggest grin in the history of grins when I opened the door to his bedroom.  This moment, each day, is by far my favorite moment of the day. I drove AJ to summer school enjoying the sunshine, the cool breeze, and my recent iTunes uploads.  After dropping him off, I ran to the store to purchase Jeremy some new duds for work.  I picked up a very happy boy from school and we came home for a snack.  Back in the car we went, with AJ's smile in full force.

We drove to the post office, where AJ charmed the hearts of every single person in the building. Our next stop was the grocery store, where he proved he is officially too big for the child seat.  He did well as I encouraged him to "hold on to the cart" as I was packing the groceries.  We stopped at his favorite Chinese place for his favorite fried rice, and came home to eat lunch with, you guessed it, Mr. Smiley.

He laid down for a nap while I packed more boxes and did homework.

After waking up from his nap, AJ was delighted to discover we were once again leaving.  As we walked up the gravel road to the horse arena, his little eyes lit up like diamonds and he squealed in delight.  "Horses! Horses!", I could feel him saying from his heart.  AJ enjoyed every second of his session and had his own giggle-fest when the horse trotted.  He left cool, calm, and collected.

When we arrived home, AJ fully cooperated in the second favorite part of my day.  He saw his Dad, and erupted with a huge squeal of excitment as he ran toward his Daddy.  It is, quite honestly, the sweetest moment I get to witness between my two boys.

Days like this fill me with positivity.  Hope. And a taste of the normal.  While technically, summer school and hippotherapy are educational and therapy....for once, it didn't feel that way.  I cannot express how refreshing it was.

Monday was our telephone hearing regarding our appeals for the denial of AJ's physical and speech therapy.  In preparation  for the hearing, I spoke with AJ's PT.  She listed all of the things we manage for AJ, and said, "You need to ask them when you get time to be AJ's Mom."  That sentence has been on my mind all week.  This is perhaps, the very reason, why Hard Moments are the way they are.  While I am AJ's Mom, I am all too often wearing multiple hats at the same time.  The Mom hat seems to be less worn than those that are seasonal.

Yesterday was a day full of sweet moments.  Moments where I felt like just a Mom.

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