Free Bird!

We saw the orthopedic surgeon yesterday...

Although the picture is poor quality...does the above scene look familiar?  How about this one?

No your eyes are not tricking you (if you noticed or picked up on my hints...)!  That is belly and back flesh you see.  Ethan is free from the cast again.  After x-rays yesterday, the surgeon said that there hasn't be a great improvement over last year's images.  The good news is that he isn't getting worse but the improvements are slight.  He is still happy that we're able to hold the curvature (the degree is still pretty severe), but has now prescribed a hard brace for him.  We go on Friday to have him casted for the mold to create the brace which he will have to wear all the time (but it can be removed for baths, etc).  It might free us up a bit more where we could feed Ethan on the road again and not have to worry about him sitting for even short periods of time (the cast would dig in sometimes and we always ran the risk of him pooping up it...but if that happens in the brace we should be able to clean it).  The downside to such braces is that they are not really meant to correct...especially at Ethan's curvature but if it could hold him where he is for at least the summer, that might be good.  It would reduce the sedations he requires.  The surgeon has agreed to follow him closely to make sure that the curvature doesn't get worse.  Meanwhile, Ethan gets to have his skin free.  It needs it too, he has another couple sores on his back.  Poor guy, when we brought him home yesterday he was all itchy and scratched off a bunch of old dry skin.  After a bath and cream he isn't really scratching anymore.  :)  Ethan was starting to outgrow the cast again and I think we caught it before it was too tight on him.

Clayton and Lorelei have cleared their Strep infections, but not before we found out that Clayton is now allergic to penicillin.  My cold is pretty much better and my back continues to heal.  Clayton went with me to yesterday's appointment to move Ethan and his wheelchair.  On Friday, I've recruited Uncle Jon to help out.  Hopefully I fully heal soon so I can care for him as I used to.

Not Just Ethan This Time.

So, the meeting with Ethan's new pediatrician went well.  She remembered having seen him in the clinic before and we went over his extensive history.  She did confirm he was sick, likely with a virus that lasted a long time...we thought it cleared up...but he is either sick with another virus/cold or he never really shook the last one.  He hasn't been 100% himself since April 30th and to be honest...I could do with him feeling well again!  The pediatrician referred us to the Geneticist again to follow up with the Neurologist's line of thinking.  That appointment is scheduled for later this year.  I'm not holding my breath that they will find out anything new, but we'll go anyway...

Ethan has since also seen his Respirologist who wants a chance to assess him without the cast and is having trouble deciding what testing to proceed with for his lungs and what they can/cannot do.  Meanwhile, we've increased one of his puffers.

We recently had an appointment with the doctor/team that runs things where Ethan goes to therapy.  They had hoped to restart him as an outpatient today, but since he is still congested we had to cancel that again...  It has been since mid-November that he's been in therapy. 

Some exciting news is that we got another standing frame to trial - for a week.  He did pretty good in it yesterday when they were setting him up all things considered (mainly that he hasn't used one since December).  We'll have to put him in the standing frame frequently to see how we like it. 

But that is difficult for me as I hurt myself on the weekend trying to 'beautify' the front of our house.  I picked up a bag of mulch, turned and something in the lower part of my back made a nasty popping sound and I almost hit the ground!  And this of course on the first bag of mulch.  I had to abandon my efforts shortly afterwards.  (On a side note, I did get a compliment for what I did get done.)  Here's hoping I get a chance to get back at it soon...  But in the meanwhile I have to let my back heal!  Add to that I caught a cold.  Oddly enough, that isn't the worst of it...Clayton & Lorelei are being treated for Strep Throat!  Clayton's got really bad with other side effects before he got antibiotics...thankfully Lorelei's didn't get it as bad before we got her meds. 

Next week we meet with his Orthopedic surgeon to see how we're going to proceed with his casting...that's our hope anyway...

In the News

This week there was a news item on MSN that caught my attention.  A Toronto couple has been threatened to have their 3 week old son taken from them because CAS (Children's Aide Society) does not think they can care for him because both parents have cerebral palsy.  The following is a video of them caring for their son.  You can see that they are only limited by their gross motor skills and speech.  They really have a great fighting attitude, love and the desire to parent their son.  http://www.cbc.ca/news/health/story/2012/05/01/toronto-mississauga-disabled-couple-fight-to-keep-son.html

Just last week I was talking with someone who has had to deal with CAS and they were telling me how difficult it can be to get CAS to intervene in situations they really should.  And here they marginalize those who really care for their child and want to do the best for him.  The above story really bothered me.  It's not like we know what Ethan's future will bring, but if he is capable, I would not want someone with their preconceived notions (likely negative) to determine that he is unfit to be a father to his child.  I think this gives great hope to parents of children with special needs and likely to those who have some limitations but are still quite capable in other ways.  I can't help but think of all those children that are born into families under less than ideal conditions, those who are unloved, those who go uncared for, most strongly those drug addicted babies we heard in the hospital during so many of Ethan's stays.  To knowingly, intentionally (call it what you will) do this to a child...I gets me so riled up I cannot be politically correct about it.  At the minimum it makes me want to knock some sense into people.  But enough about my soapbox lecture...to the real point of my post!

I was moved to tears today with the following news: http://www.cbc.ca/news/canada/toronto/story/2012/05/04/toronto-cerebral-palsy.html

I just want to share the good news with anyone who'll listen!  :) 

Catching Up

It seems often there just aren't enough hours in a day, days in a week, weeks in a month...I could go on and on but I'm sure most people feel the same way.  Several things have happened over the past month since I last posted and I've been meaning to get back to posting...

So, there was no 'possibility of him outgrowing his cast'...he really did outgrow the cast!  He had it removed on 12th and when it came off his poor tummy was formed to the hole in the cast.  Below you can see the raised part of his abdomen which was poking out of the old cast.

But that wasn't the worst of it...he ended up with several pressure sores from the last cast.  One of them was aggravated so much it was actually raised up and at first I thought his rib broke.  Turns out it was just a doozy of a pressure sore.

The pressure sore is on his right side, near the end of his ribcage. 

As always, he giggled lots while the cast was being removed.   The vibrations must really tickle the skin when the saw cuts through the cast.  

He was super sensitive to touch after as well.  Anytime you even gently touched his skin he would startle and jump.  I was somewhat surprised since we often try to reach in and give him a little scratch type rub as far as we can get. 

After 10 weeks straight in casting, Ethan enjoyed some 'free' time before his next cast.

He was out of the cast until the 17th.  During that time we brought him in for some acupuncture (not one of his favourite appointments, but definitely worth trying if it helps loosen his muscles), and slathered him in cream.  We also discovered that he has lost his upper body muscle control/strength as he was not able to control his upper body for very long.  Of course the day before his new cast, the weather turned warmer and he ended up with a heat rash.

Ethan looks pretty good in this supported pose as far as his spine goes...you might be able to make out the rash and the lump protruding on the right rib.

Here Ethan isn't as well supported, and although it is not really in focus, you can make out where his spine is.  These were taken the night before his new casting.

Ethan, max-relaxed the morning of his new casting.  As our luck would have it, that night he was up for most of the night and only fell asleep about an hour before we had to bring him to the hospital.

We treated the rash with hydrocortizone, but when he was recasted it was with the pressure sores unhealed and the rash still present.

Ethan and I all ready to head into the OR.  
 

He fell asleep again before we got into the OR, and he did not really respond negatively as they were sedating him.  Once he is sleeping, I head out and they got started with the procedure.  The casting went pretty well, but he took longer in recovery to get his oxygen saturation up enough for them to discharge us.  I believe the main problem was the cast needed adjustments in the neck region and it was pushing his mouth closed.  Ethan is more of a mouth breather, so he likely wasn't able to get deep breaths.  I don't have any pictures of him in his new cast yet but do like the opening they left for his chest much better.  It is larger than any others in the past have been.

Unfortunately, under his uncle's care the day after the new cast went on...there was a bit of a poopsplosion that got the casting shirt.  We were able to remove most of it - and thankfully there is no odor as he is scheduled to remain in this cast at least until the end of May.

At his recent neurology appointment, the neurologist said he didn't think that Ethan's developmental delays could be attributed to either his Dandy-Walker cyst, nor his Infantile Myofibromatosis and thinks there may be something else going on.  He would like to find a syndrome that would explain all of Ethan's particular health issues...  I gave him my usual response that Ethan has 'Cutest Boy in the World Syndrome' and the neurologist said, that would be secondary to this other syndrome as well.  :)  I will be surprised if they are able to find a syndrome to cover all of his medical conditions as I recall they were not able to even link his two main ones.  And trust me, we've googled the combination many times before without luck!

On a good note, I was recently advised that Ethan's spinal images came back showing 10-15 degree improvement since March.  His surgeon is happy with his progress thus far.

Ethan seems to be coming down with something again.  :(  He was sick 4 times today and he sounds pretty congested.  Lorelei has a bit of a cold and it may have transferred to him this time.  It is really disappointing as I may have to cancel his physiotherapy appointment that was scheduled for tomorrow morning.  It has been since December that he has been in a standing frame and we'd really like to get him weight bearing again!  Tomorrow Ethan also goes to meet his new pediatrician.  We've seen her before, this is just the first time we're going as her patients.  We switched pediatricians when Ethan's original pediatrician moved locations in October or November.  He remained healthy for so long that we didn't have to go in except when he had his last infection and that was just at the clinic to get a prescription.