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.