Wednesday, April 2, 2008

Lurking around the corner

Well, I have managed to string along a number of days here that have seemed to resemble a new and ever changing level of norm. Our definition of normal has certainly changed several times over the last year!. However, that sneaking mommy feeling at this very moment cannot be ignored. You know the one that finds you sighing deeply for no apparent reason. The foreboding feeling that you can't quite put your finger on. That feeling that something is lurking around the corner to possibly take you out at the knees. I am trying to logically work through that feeling and I am coming up empty handed. I have a sneaking suspicion it involves little Miss Zoey. She is now completed day six of her ACTH injections. 12 injections down, who knows how many to go! I have become a LITTLE more comfortable giving them but that little stinker feels the alcohol prep and she knows what's coming! She went to the Drs. today. Blood pressure fine, urine negative for sugar. All good. She was Miss serious today though , did not even smile for Caitlin. This evening she cried for over an hour, very unlike her, so I dug out the baby swing and she passed out. I do believe the ACTH beast is about to rear it's ugly head. Little Miss fussy is giving every indication of that. She wants to nurse like, every hour ,so her appetite probably is kicking up. Another side effect. And as she slept in her swing I could not help but notice her cheeks looked a tinge bit more puffier. Another inevitable side effect. So get ready for a new chapter everybody. The unknown. Just when I start to get use to right here and now someone has to throw something new at me to keep me on my toes! So...... tomorrow is a new day . We are forced to keep a low profile, Zoey and I, due to ACTH suppressing her immune system and it leaves me a little stir crazy by weeks end. The boys too.The park is alright, but tomorrow calls for rain. The girls keep busy. They have the freedom of their cars and work and friends and boyfriends so I am glad they can go do their thing. They are great about offering to pitch in but I never want them to feel over loaded. Their plates are full enough. Then there is Mark. The guy is lucky to be home by 8pm each night and he is  pulled in so many different directions. He wishes so much to be home more with us but reality tells a different tale. One that doesn't seem to hold much promise of ever really changing. We don't thank him enough for how hard he works for us all, we are so fortunate. Well, I have digressed . Back to that feeling ........ if  it does in fact involve Zoey, it hopefully  won't mean too difficult of days ahead  for her. We continue to pray that this latest treatment is gentle on her body and that it spares her anymore set backs. Lord knows this child deserves a break! And as far as this feeling, I hope it proves to be little more than a mom who is being tested to the limits and turns out to be nothing more than something that  a good nights sleep won't cure.  That and a stiff drink ........ just kidding! Maybe.


Dawson said...

We did the ACTH not too long ago. About 4 months ago I think. Dawson did OK on but I dont think there is any way around some of the side effects. The treatment was worth it for us. Although he continues to have seizures, the ACTH did stop the Hyppsarethmia (sp) and it also stopped the hard tonic seizures he was having. So hang in there and just remember whatever side effects she may have will only be temporary. I will be praying for her daily that the ACTH will work and that she will continue to tolorate the injections

Jeff and Allison

jotcr2 said...

Symptoms are very confusing. My girl went completely off her food for about 4 months or more. Only would tollerate milk. I remember being very happy when she took yoghurt for the first time again, as she came out of her fog. She still go the huge bloating from the meds despite eating nothing.