Sunday, June 15, 2008

Father's Day

Reagan has been in a great mood all day today...her gift to Mike on Father's Day. She did wake up like clockwork this morning at 7:30am, but I got up with her and we let Daddy sleep in a little. Seizurewise we're pretty much where we were yesterday. She had a lot this morning, so I gave her a clonazepam and it seems to be helping. We didn't do much today for Father's Day...ran a few errands with Reagan (she was SO well behaved) and then watched the US Open on TV (that's a major golf tournament, for those of you that don't golf). No golf today for Mike, he played yesterday. As for this week, we don't have any planned doctors appts, but we may have to go back in to get her blood checked to see what direction to go with the diet. I really want the diet to work but we're kind of running out of time. If it's going to work, it needs to work NOW. Reagan has a lot of therapy scheduled for this week so hopefully we'll have some more good sessions! I'm also waiting to hear back about the lumbar puncture she had done at the beginning of May (this was looking for a possible metabolic defect in how she breaks down sugars). She had a urine test done back in January that tested high for these specific sugars called polyols. But from what I understand it's possible to get false positives with the urine test, so testing the CSF (spinal fluid) is a more accurate way to determine whether or not this is a real problem. The specimens were sent to The Netherlands to be analyzed by the experts in the field, so I'm anxious to hear back about what they did or did not find. Please keep this in your prayers.


3 comments:

MOM said...

Oh My Gosh!! Can that possibly be my tiny little grandbaby??? I don't remember her EVER being that tiny! She is such a big girl now! I am soooo happy that she was happy on Father's Day!! (not that she is EVER bad!)

As far as keeping all of you in my prayers......you know you NEVER have to ask! The minute God hears from me...He knows EXACTLY what I am calling about! I have Him on my "speed-dial"!

I love you......MOM

JSmith5780 said...

Hope things are better today!

Heather said...

What a darling picture. Time seems to go so fast in some ways and not fast enough in others. We keep praying for that diet to kick in. I remain hopeful that the tide will turn shortly. Reagan deserves a break in such a big way. Talk to you soon.