Sunday, October 25, 2009

On your marks, get set, go…

What a crazy busy day, week, month we have had!  Yesterday was one of those days where I there was no room for error in the schedule.  I had just enough time to get from here to there without stopping or being delayed by even the smelliest dirty diaper.

The 24 hours of having Lucy’s head wired and wrapped in gauze all the while carrying around an few extra pound bag over my shoulder went by quickly, and was not as bad as I thought it was going to be.  Of course having a jam packed schedule helped to pass the time.  Lucy never really attempted to take the leads or the gauze off.  The difficult part was placing the leads and then having them removed when the test was done.  I scheduled a double therapy session for Lucy yesterday morning because we know that when she gets over stimulated these are times when she has her starring episodes.  Lucy did have a few starring episodes during the time she was hooked up, we’ll just have to wait for the results to see what if anything was detected.  We were told that the types of seizures that Lucy is experiencing are difficult to detect on an EEG.  We are scheduled to see her neurologist next Thursday, we are hoping the results will be back by then.

Our pediatricians office called me yesterday morning to let me know that they just received their shipment of H1N1 vaccines and to bring Lucy in ASAP.  There was a simultaneous “HOOAY” that could be heard from our house and in their office, I don’t think that I have ever been so excited to have my kids vaccinated.  Lucy received her vaccine yesterday and the other three are scheduled for 9:30 Monday morning!   H1N1 is spreading quickly throughout our community.  Megan’s school nurse called me Tuesday to give me a update, she was calling out of concern for our Lucy.  We feel so blessed to have so many that care about us,  it is simply amazing!

In addition to the double therapy session, going to or pediatricians office, and having Lucy’s EEG, we also had an appointment with Lucy’s CHOP nutritionist yesterday, we love her and she loves our Lucy!   This appointment was scheduled on Monday because her GI wanted to have Lucy brought in for a weight check and to discuss the issues we have been experiencing with her j-tube.  The good news is that Lucy has not lost weight but the bad news is she still isn’t growing as fast as they would like her to be growing.  You can’t have your cake and eat it too, and yes pun intended!   We are faced with several options, fortifying the calorie content in the breast milk to bring it up to 30calories/ounce, using all formula that is 3o cal/oz, and increasing her feeding rate through her g-tube.  We will do what we can, the rest is up to Lucy’s body.  

We have been too busy with medical stuff that I haven’t blogged much about anything else in our life.  I am afraid to write this, in November we are going to try and take a break from many of the appointments and enjoy our life, when I wrote about trying to do this in July and August well…you know what happened.  We are planning a BIG trip over Thanksgiving!  The kids think that we are going to Florida to visit family, what they don’t know and we aren’t going to tell them until we arrive is that we are also going to Disney World for a week of relaxation, fun, and memories!  Shhh…it’s a secret!

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