Chaos, Craziness and shots for Connor

Just when I was starting to get adjusted to our new situation and I was starting to feel slightly more comfortable, things have changed... we've added another degree of difficulty to our lives.

I took Connor to Salt Lake yesterday for a follow-up appointment with the neurologists there.  We did another EEG and, unfortunately, the medicine that he's on right now isn't stopping his seizures as effectively as we hoped.  He's on two separate medications, Topomax and Prednisone, twice a day, but it's not enough.  He still has 1 - 2 seizures everyday although they are much milder than there were.

It's time to pull out the big guns.  He'll be getting injections of Adrenocorticotropic hormone (or ACTH for short) twice a day.  And guess who has to give him those injections.  Me!  Mason will probably give a couple too but since he'll be working so much, much of the responsibility falls to me.  I'm going to his pediatrician's next week for his nurses to show me how.  I'm really not too thrilled about it but I do want to stop the seizures, so it is what it is.

It addition to that, the hormone has some side effects that are going to be interesting... It will weaken his immune system quite a bit so no immunizations, he can't be within 10 feet of anybody sick, we can't take him to crowded places like the grocery store, church, etc.  If he starts running even a slight fever, I have to get him into the doctor's immediately.  We're still trying to figure out what to do about church... She said it would be OK if we could keep him out of crowded rooms... hmm...

The other thing that the hormone will do is increase his appetite and Connor is a big boy!!  He's been gaining weight steadily and yesterday he weighed in at 21 lbs.  They don't want him to gain too much more too quickly so I have to restrict his eating.  If I thought giving him shots was going to be bad, telling him he can't eat is going to be worse!!

So anyway, that's the story of our lives right now.  We're living amongst chaos because we don't have our furniture from the old house yet.  We're all sleeping on air mattresses.  We can't hardly unpack yet because we don't have any place to put the stuff.  It's craziness around here... but we're having fun being crazy!

But all in all, we're enjoying our new adventure.  We're happy and thankful to be together as a family.  Mason is happy at work and even though he works ridiculously long hours (12 hour shifts), he's happy to be able to provide for his family again.  A burden has left his shoulders and we're thankful for that.

I don't think it's a coincidence that Mason started working on Monday, at which time our new health insurance became effective, and Connor was admitted to the hospital on Friday.  Even though our medical bills are going to be through the roof, we're still being well taken care of, and we're so grateful for that.

We hope that our dreams of self-employment aren't dead because of all that Connor will require in the coming years, but we'll just have to wait and see.

We're trying to find some form of routine between all the doctor's appointments and boxes piled everywhere.  Our new "normal" will be pretty good, I think!! :)

We took these pics out at the Ranch the weekend before Mason started working and before our latest round of "craziness" hit.