Monday, January 3, 2011


This round of Maintenance has been different. Hmmm...I don't know what to think.

You take ALL your meds quick and easy now. There used to be some that were harder to get you to take and some that were easier, but now you take them all without a hitch. I cant believe it. I remember back to our first few months of treatment. It used to take Dad and I an hour or more just to get you to take one of your medicines...literally. We tried everything. You fought it an fought it. I even asked the docs and Rachelle for some advice, but all their ideas Id already tried. They said one day it would all be "old hat" and you'd have no problem taking meds. At the time I thought that day would never come. Now it has and I'm grateful. Although I feel terrible that swallowing up to 8 pills in a day has become "old hat." That reality is one I would never have wished for you.

Steroids were taken with no problems this month too. Which is huge. They are by far the yuckiest ones you have to take. The docs said they had a class that let them all taste all the meds their patients have to take and steroids were one of the worst. VERY bitter. The side effects are different this time. Last time your appetite kicked in the day after you quit taking it. This time I haven't noticed too big a difference in your appetite, however your emotions are far more up and down, and the dreaded night terrors have returned. Ugh. I feel so terrible for you. You are literally yelling (and sometimes screaming) in your sleep. The only problem is you never fully wake up. You will have a full conversation with me...very upset and inconsolable...and not remember a word of it the next day. Your waking me up every couple hours at least, and to make matters worse, Tucker has started waking up every two hours too! I am getting NO SLEEP. I feel like a walking zombie. I'm forgetful, and some say a tiny little bit ornery. I don't know about that :)...I actually wake up MORE tired than I went to bed. Last night you were up more than usual  and complaining your eyes hurt.  Turns out you have pink eye in BOTH eyes. Your eyes were crusted shut and you woke up screaming you couldn't see.  I tried to explain what was going on. I told you you had germs in your eyes that made them sick like a cold. That's why you had so many boogies in your eyes.  You burst into tears cause you thought you had to go to the hospital. Oops. I quickly erased those fears and you calmed right down. Poor kid. I wish there was a way I could eliminate your fear of getting sick, and going to the hospital.

You have been very loving lately though. Very free with your hugs, and snuggles, and kisses. Which everyone on the receiving end of one of those special gifts LOVES! (Especially Grandpa Shepherd) You even gave big hugs to family you hadn't seen in a long time at some of our holiday parties.  A rare treat. Your kind of stingy with those.

I got to substitute your primary class yesterday. It was SO FUN. There were 13 little 4 year olds in the class and you were all so good. I miss serving in the primary. You were so excited I was your "teacher", you were being a little overly helpful. It felt so normal...I love normal these days.

I am hopeful that this coming week brings normal back, and maybe even brings a little boring with it. I could use some boring too. And some sleep...

1 comment:

  1. Poor mommy! Im so sorry you aren't sleeping. Cami doesn't sleep on steroids either and I cant imagine doing it with a baby too! You are both so strong! Hang in there. XOXOXO