Ok, so I have a small break from teaching. I get to catch up on all the little things I have been putting off (like figuring out Medicaid in MA, that whole moving thing, etc.). Today there was a special needs consignment sale up near Atlanta. I was totally excited, hoping to find some equipment for Eve (specifically, a feeding seat and a swing for outdoors). Well, it was a bust. They said they didn't have as much as last year (more buyers, less sellers). Oh well.
So, I drove up to the Mall of Georgia since I was so close. I decided that my self esteem needed a swift kick in the (large) ass. Yes, ladies and gentlemen, I was shopping for a swimsuit. Oh, the horror. The sales lady laughed at the look on my face as she directed me to the dressing room and apologized for not having a "magic" light. Honey, the whole world would need a magic light, not just Nordstrom's dressing room. Now, I know that I have put on a few pounds since last year (I got my appetite back after being so depressed about Eve). But, I had NO IDEA my ass was that big. Damn the 3 way mirror! What the hell happened??? I felt like that cartoon character Cathy. Miserable. Anyhow, 7 or 8 swimsuits later, I actually found one that "suits" me pretty well. Low cut to draw attention away from the ass. Halter top to draw attention away from the ass. Printed pattern to draw attention away from the ass (and gut). It's a one piece (which, btw, are hard to find with out a little skirt or below a size 14). Many of the tankini's I tried on just left a roll where the bottom cut into my waist flesh and the top accentuated that imprint. Anyhow, I feel that if I am going to go to the pool or beach in public, this swim suit is actually cute on me. Great.
Now, are you ready for my super shopping justification powers? Let's talk price. I paid $133. Yes. 133. Are you kidding????? I never thought I would spend that much on a suit. But here come my powers. The price was originally $144. It was on sale. And, I would be willing to pay $133 NOT to go in public in one of the unflattering less expensive (actually, in some cases more expensive) suits I tried on. Actually, I think any woman would pay exorbitant amounts of money for a flattering bathing suit. So, $133? No, I say priceless.
Wednesday, May 27, 2009
Saturday, May 16, 2009
Great news!
Great news! I got the report from Dr. Shoffner. It looks like all mtDNA sequencing came back negative and not causing the clinical presentation of symptoms. So, I haven't talked with Dr. K yet, but I am guessing if it is not a mitochondrial DNA mutation, that we then assume it is a nuclear DNA mutation. I am curious what this means for Eve's care (if anything). Hopefully I will talk with Dr. K next week.
Tonight we were getting Eve dressed for bed and she was playing with her balloons. Tracey brought her balloons in the hospital, and Jim's parents brought me a birthday balloon last month for my birthday. Anyhow, here is a video of her playing:
Tonight we were getting Eve dressed for bed and she was playing with her balloons. Tracey brought her balloons in the hospital, and Jim's parents brought me a birthday balloon last month for my birthday. Anyhow, here is a video of her playing:
Thursday, May 14, 2009
Doing great
So Eve is doing great. That's my non-professional opinion. I'd have a professional opinion to report...if I had remembered to take Eve to Dr. Setia for her follow-up appointment. Duh!!!! I totally spaced out and didn't show up. It really really bugs me that I forgot. I know I have a lot on my mind, but come on. I guess because Eve is doing so well, I wasn't focused on her needing to go to the doctor. Here are two shots of her in the hospital.
Poor little thing was like a rag doll. Oh, and here is what her button looks like now. I took this picture tonight after her bath. You pull up the flap on the top and stick in the 'pig tail' tube. Then you squirt the liquid (medicine, formula, whatever) into that tube. The little valve on the side is to inflate/deflate the balloon that keeps the button from falling out.
Dr. K called today. He spoke with Dr. Shoffner. The lab has finished the sequencing (!) and now we just have to wait for him to write it up and send it out (7-10 days). I am super excited about this. Finally, a light at the end of the long-ass tunnel. I feel a great sense of relief that in about 2 weeks we should have more information on her disease.
Poor little thing was like a rag doll. Oh, and here is what her button looks like now. I took this picture tonight after her bath. You pull up the flap on the top and stick in the 'pig tail' tube. Then you squirt the liquid (medicine, formula, whatever) into that tube. The little valve on the side is to inflate/deflate the balloon that keeps the button from falling out.
Dr. K called today. He spoke with Dr. Shoffner. The lab has finished the sequencing (!) and now we just have to wait for him to write it up and send it out (7-10 days). I am super excited about this. Finally, a light at the end of the long-ass tunnel. I feel a great sense of relief that in about 2 weeks we should have more information on her disease.
Monday, May 11, 2009
We're home
We got home from the hospital about 8pm last night. Eve had a great night in her own bed and slept soundly. She woke in good spirits and had a great day. Her fever has not returned. So, off to school tomorrow and back to Dr. Setia on Thursday for a follow-up appointment. I'll post pictures soon of our hospital visit and her new button.
Sunday, May 10, 2009
hospital again
Just a quick update. Eve was back in the hospital this weekend. Friday we had a scheduled appointment at CHOA Scottish Rite to have her g-tube replaced with a button. That way we can attach a tube when needed and there isn't a long tube dangling that can get caught when not in use. Anyhow, we were shocked because they didn't sedate her or give her any anesthetic. They just popped that tube out and inserted the button. Of course, she screamed bloody murder. Well, the rest of the day she was super sensitive and guarding her stomach. We went home and she cried nearly the whole way. She didn't really want to eat or drink. That night she was up every 30 minutes or so. We had her on constant doses of motrin. Well she got a fever in the middle of the night. When we brought her to Dr. Setia on Saturday morning, she had a temp of 103.9. Highest it's ever been. He examined her and called the GI doc on call. Then he sent us to Athens Regional. They used contrast dye and an xray to be sure the button was placed correctly (in the stomach instead of between the stomach and abdominal wall). Fortunately it was, so they started treating her for infection there (rather than transporting her to Scottish Rite). So, they've got her on heavy duty antibiotics. Sometime last night her fever broke (maybe around midnight). This morning she actually ate a few bites of grits and jello and was in a pretty good mood. Dr. Setia stopped by and said that they'll take out the IV and if she continues to have a normal temperature, she might be able to go home tonight. :) Happy Mother's Day! Feel free to call our cell phones. We won't answer if we can't talk.
Wednesday, May 6, 2009
Over due post
Things have been so busy lately, so I am going to bombard you with pictures. Here's a shot from my birthday. Both Kirby and Josie were super excited that I was turning 33. They even wore party hats!
Eve was super excited about the cake. Some of it made it in her mouth. But she had fun trying.
Speaking of having fun...Here's her walrus imitation.
By the way, you'll notice that Eve got a haircut. We got tired of her wild-woman hair. Combing out dreadlocks is not too fun. Her curls really show up now that her hair is shorter.
I had gone strawberry picking last week (amazing how fast we went through a gallon of berries). Eve helped me make a strawberry pie. Here she is helping with the crust.
She also helped me mash up the strawberries and measure and mix the filling. She seemed to like it so much we gave her some measuring cups, spoons, flour and water. She was "cooking" and had a blast. She cried when it was time to clean -up. She had so much fun "cooking" that a shower was necessary.
Here are some more shots of that haircut.
Oh, Josie's boyfriend was calling here. Jim gets a kick out of telling Josie her boyfriend is calling to ask her out (or break up with her). Eve laughs every time.
On to other news. We went to the neurologist on Monday. I was slightly disappointed because I really hoped that he'd fix the whole Shoffner thing. Instead, he will call but expects to hear the same thing we've heard. Now I almost fear it will take even longer. Dr. K kept saying things like getting Eve's new docs in touch with Shoffner. Whaaaat? I really hope he doesn't think that this stuff won't be done by the time we move this summer. *deep breath* I'll call next week to see what I can find out. I am nervous that my insurance will end before he decides to bill them. Ug. *deeper breath* Anyhow, Dr. K looked at Eve and made her smile. He's going to find us a pediatric neuroligist in Albany and we'll see a mito doc in Boston. He also is taking Eve off the CoQ10 to see if she shows any declines. If not, we can keep her off. It hasn't improved anything, so it might not be doing anything. After that we go off the levocarnatine. This will be a help because the CoQ10 is so expensive.
Eve was super excited about the cake. Some of it made it in her mouth. But she had fun trying.
Speaking of having fun...Here's her walrus imitation.
By the way, you'll notice that Eve got a haircut. We got tired of her wild-woman hair. Combing out dreadlocks is not too fun. Her curls really show up now that her hair is shorter.
I had gone strawberry picking last week (amazing how fast we went through a gallon of berries). Eve helped me make a strawberry pie. Here she is helping with the crust.
She also helped me mash up the strawberries and measure and mix the filling. She seemed to like it so much we gave her some measuring cups, spoons, flour and water. She was "cooking" and had a blast. She cried when it was time to clean -up. She had so much fun "cooking" that a shower was necessary.
Here are some more shots of that haircut.
Oh, Josie's boyfriend was calling here. Jim gets a kick out of telling Josie her boyfriend is calling to ask her out (or break up with her). Eve laughs every time.
On to other news. We went to the neurologist on Monday. I was slightly disappointed because I really hoped that he'd fix the whole Shoffner thing. Instead, he will call but expects to hear the same thing we've heard. Now I almost fear it will take even longer. Dr. K kept saying things like getting Eve's new docs in touch with Shoffner. Whaaaat? I really hope he doesn't think that this stuff won't be done by the time we move this summer. *deep breath* I'll call next week to see what I can find out. I am nervous that my insurance will end before he decides to bill them. Ug. *deeper breath* Anyhow, Dr. K looked at Eve and made her smile. He's going to find us a pediatric neuroligist in Albany and we'll see a mito doc in Boston. He also is taking Eve off the CoQ10 to see if she shows any declines. If not, we can keep her off. It hasn't improved anything, so it might not be doing anything. After that we go off the levocarnatine. This will be a help because the CoQ10 is so expensive.
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