What. the. hell. Ok, so things are crazy. I must be crazy. This dog is definitely crazy. She's a very determined, and willful pup. If I have to say, "No bite/no chew" one more time I am going to self-destruct. As soon as I am done writing this I am calling Petropolis to enroll Josie in puppy training classes. I think it wouldn't be so difficult if we didn't have Eve to worry about, too. Oh, and Eve is scared of her. I don't blame her. Josie jumps up on her and tries to play. Eve has such a strong startle reflex that she goes to pieces. But, when Josie finally tires herself out, she is the most adorable, loving pup. She climbs up on your lap and is a snuggle freak. She is very attached to us and follows me around like a shadow. I am really really hoping that this is just her puppy stage and that she will be more calm and obedient as an adult. Oh boy. At the very least, she should make for some good blog fodder. Oh, here's a story for you: Jim's parents were here last weekend when we got Josie. Thank goodness, because just picking her up from the airport was a hassle. We drove all the way out to Atlanta to find that the flight had been canceled. We made the return trip the next morning. We arrived back at the house with a pup who took no time in become comfortable and worked off her pent up energy by jumping up on us. Guess what I learned? My mother-in-law has very thin skin on her legs! You'd think Josie had razor blades for nails! But, after the transfusion (j/k) and multiple band aids (not j/k), she was good to go. Fortunately, we didn't have to do any first aid the rest of the weekend. ;)
As for Eve, I finally got a call from the new genetics lab today. Our case has been reviewed and I can call on Monday to set up a consult with Dr. Kendal (sp?) who apparently used to work with Dr. Shoffner. The best part? The new doc is in network and also accepts medicaid! Thus, we wouldn't have to pay for any of the testing!! Yay! BTW, the bills have yet to come from the biopsy. Sheesh. I am getting too comfortable and forgetting that they are on the horizon. Let's see...we've also ordered a wheelchair for Eve. It should come in about 2-3 months. Hopefully, she can get it for the start of school in August.
The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Friday, May 30, 2008
Thursday, May 29, 2008
New puppy
Friday, May 23, 2008
Baptism
Last weekend we went to Virginia for my nephew's Baptism. We had tons of fun. It was so great to see everyone again. I hadn't seen my brother's family or my parents since before Christmas. Eve had a total blast hanging out with her cousins.
Here's Alex, Pop, and Eve:
Eve also got to "hold" baby Giovanni. Boy, did she love that!
Here's some pictures of the Baptism. Jim and I are Giovanni's godparents. He was a doll during the ceremony. He never woke up.
Here's Alex, Pop, and Eve:
Eve also got to "hold" baby Giovanni. Boy, did she love that!
Here's some pictures of the Baptism. Jim and I are Giovanni's godparents. He was a doll during the ceremony. He never woke up.
Saturday, May 10, 2008
shoes
We had a great Saturday morning today. We got up and drove into Athens so Jim could get his hair cut. Eve was really good in the salon. It's on the second floor of a downtown building, so she had fun looking out the window at all the people walking below. Then we got a chai and walked around. There was a craft fair that we went to check out and it was ok, but something caught our eye. These shoes!!
We talked to the woman selling them and totally agreed on how cute they were, took her card and left. Then we circled the craft fair and went back to buy them (if you have a kiddie yourself, just email me for the website - they have adorable boy and girl shoes). I know that they are not good to use with her orthotics, but she doesn't wear them all day. She mostly wears sneakers. So we thought these would be nice for the summer, when she isn't going to be doing any standing or walking. They should keep her feet cool. In more ways than one. heh. Speaking of cool - today it wasn't. Ug. Hot and humid. Here's a picture of Eve after her nap. I had to strip her down so she'd be cool while she slept. :)
We talked to the woman selling them and totally agreed on how cute they were, took her card and left. Then we circled the craft fair and went back to buy them (if you have a kiddie yourself, just email me for the website - they have adorable boy and girl shoes). I know that they are not good to use with her orthotics, but she doesn't wear them all day. She mostly wears sneakers. So we thought these would be nice for the summer, when she isn't going to be doing any standing or walking. They should keep her feet cool. In more ways than one. heh. Speaking of cool - today it wasn't. Ug. Hot and humid. Here's a picture of Eve after her nap. I had to strip her down so she'd be cool while she slept. :)
Sunday, May 4, 2008
furniture and equipment
We had a busy weekend. Eve's new furniture came and we moved her to the front bedroom. It was sooooo weird for me when I said goodnight to her last night. Putting her in a bed and not a crib signified that she is no longer a baby. She's my little girl. Oh, and she loves her bed. She did really well. She whined a bit after we closed the door the first night (but she sometimes does that in the crib), but tonight just talked away until she fell asleep. We've got bedrails up, and I put her two pillows at the bottom of the bed rails in case she migrates. But, I love having her books in her headboard. I am now able to climb into her bed and read to her (instead of in our bed). She loves her new room. Tonight she wanted to get into bed before we finished singing her nightly lullaby. She couldn't wait.
We bought a really cool piece of art for over this dresser. It should get here in 2-3 weeks. We'll also have to slowly add her artwork. We plan to make a collage of framed family and friends' pictures in B and W for another wall.
Jim plans to build a changing table top for the dresser. Once that is done, we will move out her changing table and put her toy chest in its place.
Here you can see the tie-backs that I made from the excess quilt material. We bought light-blocking curtains because this room gets strong afternoon sun. I think I might also add more fabric details to the curtains, but haven't figured out what yet.
Oh, yeah. And here's the quilt. You can see a close up of some of the fabrics below. I am not quite done. The center of the quilt has interlocking diamonds of the dark brown floral. For the majority of the quilt, I quilted the layers by "stitching in the ditch" which means I quilted along the seams of the triangles. For the center blocks, I am trying (for the second time ever) free motion quilting. Instead of a straight stitch, you move the fabric all around and can quilt in any direction. I have decided to outline the flowers in this center section to make them pop out a bit. That's the part that I still have to finish. You can see below how some are done and others are not.
Here is Eve in her gait trainer! She is not terribly thrilled with it, but actually walked a few feet today. I only kept her in it for about 4 minutes because I wanted it to be a positive experience. We gave her TONS of praise, and I think she just needs to get over her fear of it.
Here's the new stander. It looks different from the other one. All the support is in the front and it actually rotates up and down to get her in it. You can position it so that she is lying down Superman-style, strap her in, and crank it to an upright position.
Here's the indicator for the angle. This stander makes her work harder. So we are back to 20 minute sessions and will work our way up again. Oh, and she loves it. I think she was in it 3 times today.
Hope you had a nice weekend!
We bought a really cool piece of art for over this dresser. It should get here in 2-3 weeks. We'll also have to slowly add her artwork. We plan to make a collage of framed family and friends' pictures in B and W for another wall.
Jim plans to build a changing table top for the dresser. Once that is done, we will move out her changing table and put her toy chest in its place.
Here you can see the tie-backs that I made from the excess quilt material. We bought light-blocking curtains because this room gets strong afternoon sun. I think I might also add more fabric details to the curtains, but haven't figured out what yet.
Oh, yeah. And here's the quilt. You can see a close up of some of the fabrics below. I am not quite done. The center of the quilt has interlocking diamonds of the dark brown floral. For the majority of the quilt, I quilted the layers by "stitching in the ditch" which means I quilted along the seams of the triangles. For the center blocks, I am trying (for the second time ever) free motion quilting. Instead of a straight stitch, you move the fabric all around and can quilt in any direction. I have decided to outline the flowers in this center section to make them pop out a bit. That's the part that I still have to finish. You can see below how some are done and others are not.
Here is Eve in her gait trainer! She is not terribly thrilled with it, but actually walked a few feet today. I only kept her in it for about 4 minutes because I wanted it to be a positive experience. We gave her TONS of praise, and I think she just needs to get over her fear of it.
Here's the new stander. It looks different from the other one. All the support is in the front and it actually rotates up and down to get her in it. You can position it so that she is lying down Superman-style, strap her in, and crank it to an upright position.
Here's the indicator for the angle. This stander makes her work harder. So we are back to 20 minute sessions and will work our way up again. Oh, and she loves it. I think she was in it 3 times today.
Hope you had a nice weekend!
Thursday, May 1, 2008
corn on the cob
Guess who LOVES corn on the cob?
Oh, and here's me sewing the binding on Eve's quilt. I have some more detail work to do, and then I'll take a picture of the whole quilt and post it.
I talked with Dr. S's office and insurance today to see if I could find out the status of the mito DNA sequencing. I think it's a good thing I squeaked because I might get greased. The lab needs precertification to do the test, and they'll send a letter of medical necessity. The person I spoke to from the office says she has a pretty good track record of getting this procedure approved. Keep your fingers crossed!
Oh, and here's me sewing the binding on Eve's quilt. I have some more detail work to do, and then I'll take a picture of the whole quilt and post it.
I talked with Dr. S's office and insurance today to see if I could find out the status of the mito DNA sequencing. I think it's a good thing I squeaked because I might get greased. The lab needs precertification to do the test, and they'll send a letter of medical necessity. The person I spoke to from the office says she has a pretty good track record of getting this procedure approved. Keep your fingers crossed!
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