I will FIX you

Most of you who read regularly have probably seen the video I made about our feelings when we first learned Alexander had Wolf Hirschhorn Syndrome.  If you haven’t seen it… here it is.  If you have – skip below. It gets better. 

 

A close friend of mind made a video that touches me in such a way – that I need to watch it every once in awhile.  She reminds me constantly that God’s plan is divine for each and every one of us.  She doesn’t need to “fix” her daughter.

 

 

I’ve been struggling these past few weeks with sorting this out.  I posted a little bit about this HERE.  This fall has been pretty brutal for Alexander.  4 ear infections, one UTI, a bought with Pneumonia, and 3 seizures.  It looks like we may be headed for surgery in the near future.  We are going to see a urologist and then move on to a nephrologist. (they look at the kidneys.)  We have “classic WHS kidneys.”  - We shall see to what extent the kidneys need “fixing” – but it does look like the urologist will be “fixing” us up so he doesn’t have so many UTI’s.  We are also going to see an ENT to “fix” Alexander’s ear infections.  Probably we will have tubes put in.  That seems the most logical choice. 

 

Again. I will move mountains for my child.  I do not want him to suffer.  If tubes are needed, then tubes it will be.  If other surgeries are necessary, then those will be also. 

 

Our appointment on Friday was with the Neurologist.  *sigh*  This is where the “how much can I ‘fix’ Alexander?” eats at me.  His illnesses have caused him to fluxuate in weight gain.  He’s been growing longer and not chunkier.  He seems to have a loss in muscle tone.  Ok. He’s lost muscle tone.  But he has this increase in appetite.  SO…. I’m thinking that his dose of Keppra is making him a little “off.”  We switched to name brand (which controls better) and upped his dose. 

Should I ask the doctor to lower the dose a little?  To avoid the zombie – like state I’ve seen him spiral into several times?  What if he has a seizure then?  How can I help him? without needing to “fix” everything about him?

 

Usually I’m ok.  I can balance these dualities pretty well.  This past week I was not that fine.  I kept replaying my friends video and wondering if I was pushing too hard.  Especially when it came to the neurology visit.  Keeping the seizures away is our number one priority.  All else must take a backseat.  What if he just doesn’t have great muscle tone?  What if that is the price we must pay to keep the seizures away? 

 

Our visit went well.  We had a great talk.  We made some plans.  Alexander is going to have some good Omega 3’s entered into his diet.  I’m going to try to put some weight on him and see if he can “grow” into his dose. 

 

Still… I must tread with caution.  To help my son, but not need to “fix” him.  Something I will continue to ponder.