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, 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.

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.


  1. My heart aches for you. However, I can hear strength in your words and love in your heart. You are one tough cookie, an insipiration!


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