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

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.

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.

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?

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.

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!

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.

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.

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.

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.

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