Friday, September 4, 2009

Good night manerva!


This week has been busy...like crazy, fall down in bed sound asleep at 9:00 busy. Abby is loving school...actually, I am afraid "loving school" is quite the understatement. I knew the social butterfly of a kid would transition well to the new routine, but maybe she transitioned a little too well?? She told me yesterday that she loves being at school more than she did learning school at home. Well, thanks for that little stab in the heart kiddo, but I totally got what she was talking about. At this point, I totally feel like we made the right decision putting her in school vs. homeschooling. She's thriving and soaking up every ounce of this new adventure she can. I have even caught onto some new techniques to get her to spill her guts about all the intricate details of what they do each day.
Every afternoon, I hear story after story about her new friend. She and this girl are seemingly inseparable. All I hear during all of our afternoon talks is "I just loooooove Erin. I'm going to draw her another picture." While it was neat hearing about her new budding friendships, I was a little concerned about all the attention Abby was paying to her new friend...you know, hoping that it was mutual and that I hadn't created some sort of stalker kid or something. So, I was quite relieved when I met Erin's mom at last night's open house and she said that Erin has been talking about Abby all the time as well. Phew, so my kid isn't that strange then. Good thing. However, she did come from half of my gene pool, and I distinctly remember writing all over Cami Grebel's face in our kindergarten yearbook "I LOVE CAMI!!" Gotta love that kindergarten joy.
Emma has had a really good week. I was telling someone the other day that I have always loved Emma. I mean seriously...she's my kid and all. I love her. Right? But I have just realized how much I really like the kid. She's fun and hilarious and sweet and just such a joy to be around. She and I have been able to spend some really good quality time over the past couple of weeks since Abby has been in school, and it has been great for both of us. She's a smart little thing. I know this sounds completely awful, but I really didn't realize how smart she was until I was able to spend some good one-on-one time with just her. And she catches just about everything that you say...even when you don't think she is listening...The other day, the girls were inquiring about someone that they saw smoking...what the affectionately refer to as "blowing smoke". They asked why we don't blow smoke, so I just non-chalantly told them it was because we cared about our lungs and didn't want to hurt them. Sounds safe to tell little-uns, right? As we walked around the hospital grounds this morning, we passed through the smoking area outside the doors of the hospital. Emma took one look around and proclaimed "Ugh! Why these people not care about they lungs?" As I was trying to hurry her along and shushing her at the same time, she immediately switched the subject to "I need to go pee-pee. Can I go over there in the grass?"
Nathan had a really full week as well. He was cranky and just off the first part of the week, but he turned it around and has just been a delight this second half. He is becoming so expressive and hilarious in his psuedo-conversations. Yesterday was his regular neurology appt, and it was a really good one. I talked with his neuro for probably almost an hour about aspects and theories and treatments and whatnot with mito. His neuro is extremely interested in this disease and said that if he wasn't specializing in epilepsy, he would probably want to specialize in mito. I am still trying to recruit him to the mito world, as there are so very few who do specialize in it. However, in the words of Nate's neurologist "It's a very muddy disease". Indeedio, it is. There are no absolutes in mito; no set course; no two kids with this disease who look the same...not even in the same family with the same genetic mutations. You just never know what to expect around each corner. And to top that off, you never really know what to do for treatment...sometimes you don't even know how to treat the symptoms. Indeed, it is a very muddy disease.
He was glad that we are heading to Houston to see the mito specialist out there. In the mean time, we were told to treat every infection like it is Nathan's worst...according to our neuro, the next few years are extremely critical in this manner. Insert a rolling eyes emoticon here at the sheer fact that the piggy flu is lurking around every palm tree in this state just about now. All in all, it was a very easy and fun appt, as we just sat and talked about so much. I really like our neuro and his nurse practitioners. We have definitely been blessed with wonderful doctors along this journey.

The little guy had to make the trek back up to the hospital this morning for the immunology bloodwork he has to have done every 6 months. It was a LOT of blood, and he reacted rather harshly to the phlebotomist, but I don't blame him after last Friday's ABGs. He definitely knows what the equipment for drawing blood looks like now and started screaming the instant he looked over and saw the blue rubber bands they use for tourniquets. I really felt bad for the fella. His blood draws aren't too bad...he stopped crying just a few seconds after she stuck the needle in, but I can definitely tell that he is scared about everything now. That breaks my heart. The great news is that it looks like we have a break from doctors appts and blood draws for a while. I'll hear more on the O2 schtuff within a week or so, but no doc appts for 3 weeks! Woohoo!!

2 comments:

Amber Schmidt on September 6, 2009 at 10:36 PM said...

YAY no more appointments for a while!!!!!!! Do you know that we are officially 6 months with NO admissions for Ky? Its been so long I am starting to forget things! Here's hoping for a "flu free" season for you guys!

Lisa on September 8, 2009 at 12:08 AM said...

Sweet baby boy; I just feel for him. Not understanding why someone is sticking a needle in you all the time.
Glad you both get a break.

Lisa Q

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