Long Time to Compose...

Ethan went to have a casting done to create a mold for his new back brace recently and it was very traumatic.  They used fibre glass to create the mold so we laid him on his back and they took the mold of his front side which went pretty well despite me having to hold his hands above his head and Uncle Jon holding down his legs.  Then we had to flip him over and Ethan started screaming and fighting...and it didn't stop the whole time we had him on his tummy.  Ethan has not had tummy time since sometime in November 2011 or earlier and he's never been a fan of it.  On the bright side, he is pretty strong and I guess it is good to work his lungs...but it was really hard to watch.  I think he was a bit panicked about the ability to breathe too as his face was on the table and he couldn't easily turn his head to breathe.  Because of all his yelling he was drooling and had nasal secretions.  I tried to clear it for him with a tissue but it didn't work so well while trying to hold him down.  To top it all off, the person creating the brace for Ethan didn't seem to think it was it was going to do much as his curvature is so far and beyond what the Boston brace was meant to do.
If I haven't mentioned it before, with scoliosis, once detected the typical pattern is to sit and watch...then you move on to bracing and once the scoliosis hits 45 degrees the general course is to do surgery.  Ethan's scoliosis has progressed to above 70 degrees.  We have been trying serial casting in hopes of holding off surgery until Ethan has reached his full growth potential.  The earliest they have done a full fusion is at the age of 10.  This leaves the growing rods or VEPTR (titanium rib) options...both of which require surgery every 4-6 months until skeletal maturity is achieved.  The surgeries are to keep his spine straight at a 1 cm per surgery.

After watching his reaction to the casting for the brace, I started again researching the surgery option with lots of mixed results (and mixed emotions for me).  There are several benefits to surgery- typically it straightens pretty well from the start, opens up the ribs allowing for full lung capacity, may relieve pain from being crunched up.  Then there are the potential concerns...starting with the major one - surgery could cause death.  Surgery can take up to 10 hours, they can lose up to 1/3 of their blood during surgery and it is difficult on healthy lungs.  Given Ethan has chronic lung disease it could be harder for him.  Add to that, that having surgery at an early age could lead to crankshaft phenomenon (where part of the spine continues to curve and rotate despite the fusion on the other part of the spine - front vs back), despite the possibility it could help back pain...it could cause chronic back pain in adulthood, the growing rods could cause spontaneously fusion of parts of the spine (a 4 year old vertebrae/rib size would not help an adult much), the growing rods could break or become infected...  So much to process and try to figure out what is the right course of action for Ethan.  If he isn't in pain now, I'd hate to do something that could put him in pain...is it better to do it now, will it actually improve his health?  As you can see...so many questions too! 

For now I have settled into waiting for the brace to see what it is able to do for him.  Meanwhile, I will start to inquire with the various specialists to see what they have to say about surgery and his health going into it (IE are his lungs strong enough to handle such a surgery? has his heart moved due to the scoliosis?).

On a totally unrelated note...Lorelei got her first two wheeler last week.  She was too sick to test it out, so only got to try it last night.  She has been bugging for one for a bit.

Watch where you're going!

It will take some practise, which hopefully she's up to the challenge of.  As you can see above, she kind of leans in to Clayton and that won't work so when when trying to balance on her own.