trip to ER

Here are two pictures of Eve petting Josie. She enjoyed it very much.

Last weekend Eve lost her appetite and had a low grade fever. Monday she seemed better. Tuesday she was fussy and had little appetite and low grade fever. She even spit up a little, but I thought that was because she was eating in her stander with her bellyband on and had pressure on her tummy. After dinner she had massive diarrhea. Wednesday: very fussy and no appetite. Thursday: Less fussy and better (but not normal) appetite. Friday: Much better in morning. When Jim picked her up from daycare, the staff asked if we've been using the potty with Eve (We haven't lately) because she has been pointing to theirs and has had lots of dry diapers. We didn't think much of this. At dinner she was incredibly fussy. She wanted to eat, but cried when we brought her to the table. She wanted to drink, but cried when we offered her milk. She just wasn't happy with anything. We tried time outs, we tried consoling her, we tried Tylenol. Then we gave up and Jim held her while she struggled with her milk (more on that in a minute) and ate some mashed potatoes. When it was time for bed, Jim noticed that her diaper (which had probably been on for 4 hours) was bone dry. Now we started to worry. She missed 2 doses of her antibiotics (to prevent urinary infections) when she lost her appetite. What if her fussiness and non-wet diapers was a sign of something wrong? So we called the Dr. and he sent us to the ER. Because of her multiple medical issues, he didn't want to take the "wait and see" approach. So, they did some blood work and got a urine sample via cath(miserable experience for Eve). The blood was fine, and the urine was probably fine. There were some red and white blood cells in it, but under the limit of a Dx of infection. We talked about it with the ER doc and he suggested to treat her for a UTI until the urine culture comes back which will definitively tell us if she has a UTI. He felt it was better to treat her for an infection that she might not have, rather than not treat her for an infection that hadn't totally reared its ugly head. He gave her a dose of meds before we left and we picked up more at the pharmacy this morning. *sigh* She's still fussy today, but that could be because she was up until 1am last night (at the ER).

Back to the milk. So, I am pretty worried about this. One of the problems with the mito Dx is that we have to watch Eve for loss of skills or functioning - particularly when she gets sick. The way that I understand this (and I might be off the mark) is that if the cells are not producing the energy they should (which is the function of the mitochondria), they die. Enough cells die and you have system failure. Enough system failure and the individual dies. So, i guess when a mito person gets sick and they don't have the reserve energy to fight off the illness the way you or I would, then the person can backslide. So, Eve had the diarrhea on Tues night. Wednesday morning, I noticed that she had trouble using the straw to drink. She kept mouthing the straw and chewing it, but not really sucking anything up in it. I thought this was just because she was sick and weak. Well, she is still doing this. It's as if she has forgotten how to use the straw. When she does manage to get some liquid in her mouth, much of it dribbles right out. She clearly wants to drink, but has to work really hard and is struggling. Today at lunch I just poured her milk into a glass and let her drink it from that (with me holding it). She drank the whole glass. She had some appetite, but mostly wanted her milk. Soooo....I am wondering if the dry diapers are due to her not being able to ingest enough liquids. Perhaps some of the fussiness is due to frustration.

You know, you get this horrible diagnosis, but you manage to deal with it because nothing has changed. Well, now that I suspect this is a change, it makes it all so real. I don't want to watch my child slowly shut down. I don't want to spend my Friday nights in the ER because the smallest illness can be the biggest deal. I did not sign up for this. OK. enough pity party. When she wakes up from her nap we are taking her swimming. Hopefully it will be fun for all of us. I bought a little raft for her to float in, but I just read the Univ. pool guidelines and you can't bring that in. So, I guess we'll just save it for our visit to Grammie and Papa in August. I'll try to take pictures of her in her little halter-top Tankini, though.

Puppy preschool

Josie went to puppy preschool last night. Thank goodness. I left feeling like I have direction and guidelines to follow. So I am more optimistic. The class was overload for me. We walk in and there are a circle of owners and pets. The owners are sitting on chairs and the pups are calmly laying or sitting at their feet. Miss Kathie tells me to grab a seat and step on Josie's leash so she only has enough room to comfortably stand. I am to drop a treat when she calms down and looks at me. Oh boy. I follow the instructions and end up with a demon dog twisting and struggling and panting and freaking out. Everyone must have looked at me and said a silent prayer of thanks that they don't have a dog like Jo. I was mortified. She totally didn't calm down for the longest time - and then, never for more than a few seconds.

We worked on walking with a leash and Josie actually did pretty well - provided she was guided by the treats. The instructor asked me if Jo is a Stafford. When I said yes, she raised her eyebrows and asked if I have dog experience. My heart sank. Crap, even the instructor thinks I am in for a world of pain. I feebly said that Jim has had dogs his whole life. Miss Kathie gave me the old, "Uh-huh." Towards the end of the class we played "pass the puppy." We all sat in a circle on the floor and held our puppy facing out in a position that is supposed to calm them. Then when all the dogs were calm, we passed to the left. I held every puppy in the class. I could almost see the other owners cringing when it was their turn to hold Josie. Fortunately, she was not the worst. I held two other pups that were not pleased with this exercise.

Then we got a whole list of instructions and homework for next week. It reminds me a lot of having to be tough when sleep training Eve. It's hard work and you feel mean - but the rewards are priceless. I also bent the ear of the instructor a bit after class and she gave me some encouragement and specific advice. If I use the spray bottle to correct Jo, I need to say "No" first, then spray 2-3 times at her head, and then look away. Apparently with a Stafford, if I keep looking at her it is a threat and a challenge. That explains a lot. We are also going to make Josie work for her food. I am to feed her out of my hand, but only if she is polite and doesn't maul me. If she bites or scratches 3 times in a feeding, then the meal is over - hungry or not. Apparently the dogs won't miss more than 2 meals before they figure it out. Our little sausage will be fine. So. I am feeling better about being an owner. I will certainly keep you posted. I have some cute pics of Eve petting Josie that I need to post.

Other news about Eve - we have an appt in the beginning of July for a consult with a geneticist who will do the DNA sequencing for Eve. I am very much looking forward to that.

Life AP (after puppy)

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.

New puppy

So, the new puppy (Josie) arrived. She has us so totally busy I haven't been able to post pictures until now. And I don't have time to actually write about her, but I'll do that tomorrow. At least I got the pics up.

Jim's just joking here:





Oh, and here's Eve in the Popeye tryouts.

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 are the Longos (and Claffeys):

Here are the inlaws and outlaws:

Jim waited until the Baptism to hold Giovanni.

Dave, Alex, Trina and Giovanni (who finally woke up!):

Here are our Guest bedtime readers: Oma and Alex.

While we were in VA we went to the Udvar Hazy museum. It was amazing. Too much to take in, really. Here's a shot of the museum.

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. :)

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!