Merry Christmas!

We spent Christmas in NJ this year and it has been lots of fun! I was busy up until the wire with work and Christmas preparations, so I apologize that the Christmas cards did not make the cut this year. I spent a lot of time in the kitchen before we left MA, baking some of my grandmother's traditional treats. It was important for me to do this for my dad, and it definitely filled me with wonderful memories.

Anyhow, it's been a lovely whirlwind here in NJ (Eve and I are going back home tomorrow and Jim has been back since Sunday). We spent Christmas morning at Scott's place with Jim's parents.





We had lots of fun, and Eve hit the present jackpot. The best was a homemade bowling ramp that Jim's dad made and my MIL decorated. I don't have pictures of it yet, but I intend to get a quick video of it in action and I'll post that soon. Christmas afternoon, we drove back to my parents' and opened presents there as well. Jim got me a brownie pan that makes all edges and corners! Yummmmm.....


Christmas evening we went to Lois and Steve's house. Josie came with us. Mistake? I don't know, but she certainly had a ball.




The outlaws:


BTW, if any family members want a copy of these pictures, just click on the picture to bring it up full size. Then right click on it and copy it to your computer.

Back at my parents' house, my nephew had a very intense attraction and hesitation to Josie. Attraction won over literally the hour before he and Josie left. He took her outside on the leash and ran around the front yard with her. She followed obediently, but I'm not sure that was the kind of play she had in mind. I think Alex really got a kick out of having her on leash.




Hope your Christmas was as fun as ours!

Mrs. Miyagi

Eve's cold wasn't getting any better, instead it was getting worse. She had a low grade fever Friday night, so we took her to the doctor on Saturday morning. She prescribed some antibiotics and Eve is already improving. She slept until 8:30 this morning!!!!

The karate party last night must have tired her out. I know I was exhausted! (Jim said it must have been like toting a medicine ball around for an hour - it was!) The kids were soooo sweet to her. When we arrived, they all shouted, "Eve! Eve! Eve is here!" Then when Eve (and I) joined in the drills, they all shouted, "Good job, Eve!" when she (I) did her punches and kicks. She really really enjoyed herself, and therefore, so did I. I am so grateful to the birthday girl for including her. It would be so easy not to. These kids are really really special.

Miss Miyagi

Eve has finally managed to catch a bit of a cold. It's not too bad, though. She started getting congested on Monday night. We've been using the humidifier and nose drops at night to help her breathe. No fever, no green boogs. Actually, no runny nose either. Keeping an eye on it. I've been amazed at how healthy she's been this school year.

Eve's been using her gait trainer at school this week. She loves it! Yesterday she used it during the whole gym class.

Eve got invited to another birthday party. It's a karate party. I'm not sure how she will participate, but I'm sure she'll love watching the other kids. I suppose I'd better limber up - I'll probably be helping her do her Miyagi moves.

Eve's new AFOs

Eve finally got her new AFOs (ankle foot orthotics). Her old ones are almost a year old and she has outgrown them. We have been waiting to get her new AFO's so she can use her stander and gait trainer again. We went for her casting in the middle of October. I'm not sure why, but it took 7 weeks to complete them (in Georgia it would take 2 weeks). We picked them up on Thursday. I'm not exactly thrilled with the results. They aren't as nice as her old ones. Her old ones (the pink ones in the picture below) had two parts and were molded better to her feet.

If you look at the toes, the pink ones have cushioning that fits under her toes. The new ones (blue) do not.


In addition, this new person who fitted Eve, did not trim the excess plastic at the toe of the AFO "so she'll fit in them longer." Well, that means we need to get shoes that are huge so they fit the AFOs and Eve ends up with sneakers like swimming flippers. *sigh* I just don't know. We put them on her and put her in the gait trainer. She couldn't really move in them. I think because she lost the flexibility to move her ankles and actually walk. We took off the AFO's and just put on her regular shoes and she went like gangbusters. I'm going to have to talk to her PT to see what she recommends. We're going to send in the gait trainer and stander to school. I think partly I am disappointed in the service (the length of time, and the quality). I think partly I am worried that I didn't make sure she got the proper AFO's (by bringing the old and specifically asking for Cascade DAFOs). I should have demanded that the guy trim the toes. (In GA, they would always start out with a long toe, and then file it down and contour it around the shape of her toes). I did ask him why there is just a thin strap on the top of her foot when her old one had a larger pad, and he said that the ankle strap is what's important to keep the foot in, and to let the shoe keep the top of the foot and toes down. I don't know. My gut is just not satisfied, but I don't know if I am expecting too much. I also don't know how much she truly needs to wear them. She really doesn't weight-bear too much anyhow. She locks her knees and then when she gets tired, she sits on the saddle in the gait trainer, or the brace of the stander.
I think I am also so crazy busy that I don't have the time (or the energy) to go back down there and ask him to fix it. I also don't know if they are good enough for now, and the next pair she needs I should just insist on getting DAFO's (like her old ones). Maybe once the semester is over for me (in 2 weeks), I'll have more time.

Christmas photos

I decided not to do photo Christmas cards this year. I'm running behind (as evidenced by tonight's multi-post on the blog), and I just said screw it. Anyhow, I took some pictures to print and put in the cards of people that we think don't read the blog. Clearly this is not you. Anyhow, here are some of the shots that I took.





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First real snow of the season

So it snowed yesterday. Apparently it's a little late for the first real snow. We really enjoyed ourselves. It's been about 3 years since we've spent any amount of time in the snow. Today we put Eve in the sled that Aunt Joyce got her the year she was born. You know, the year before we moved from Ohio to Georgia. Eve loved it!

Soup's on

Our friend Paul brought us a ton of moose meat. This weekend we had moose burgers and I also made a big batch of soup using the ground moose meat. It was really good. If I didn't know it was moose, I wouldn't have been able to tell.


Eve helped.


So did Josie.

Thanksgiving at Oma and Pop's

Here are some shots from Thanksgiving at my parents house. Dave, Trina (whom I strangely did not manage to get a picture of), and my nephews were also there. We had a ton of fun. I can't believe how big the boys are getting!

party pics

Here are some pictures from the party that Eve went to. Of course my camera battery was dead, so one of the other moms kindly took pictures for me.

Here the kids are playing "Needle in the haystack." It involves finding pieces of candy in a pile of straw (or hay - I can't remember).

The kids (and some parents) also went on a tractor pulled wagon ride.

Here is Eve on the horse. She LOVED it. Did not want to get off. I am guessing that a horse would be on her Christmas list if she could talk.

odds and ends

Last weekend we took a drive up to the hairpin turn in North Adams and got out for some sight seeing.

Also, here are the shots of the new walkway. We finished it about 2 1/2 weeks ago. It was just gravel, but Jim and his dad worked super hard to get the pavers down. I feel happy every time I walk down it. We just need to remove the old gravel and dirt from the driveway, and we'll be all set. Part of the 5 year plan is to build a proper porch on the front of the house. Part of the 5 week plan is for Jim to build a railing so I don't fall on my ass when it gets icy.

Other stuff about Eve:

On Friday (11/13) Eve had her second swallow study. This went soooo smoothly. I had talked to the therapist that morning, so they were prepared for Eve and her needs. Eve never cried. She even hammed it up for her reflection in the xray camera lens shield. I was shocked. So was Pam (her school's speech therapist), who joined us again. We are so lucky to have therapists that care so much about Eve. The person doing the test said it looked like Eve swallowed fine. She didn't aspirate and all looked good. The recommendation is to cut up food small, present to molars, and offer lots of liquid to help the thicker foods (think lumps of bread) get washed down. So, nothing earth-shattering, but at least we found out that her swallow is functioning properly.

Saturday morning we needed to take Eve to the pediatrician for a UTI. Her pee had that funny smell again. Because this is the first time at this office that she has had this problem, they wanted to take a urine sample to get it tested. That meant they needed to catheterize her. I wasn't thrilled about that, but I understand the reasoning. I think now the doctor may be more apt to take my word for it. She did the cath (I still don't understand why the local hospital won't cath a kid) and it was rough going at first. But she prescribed a antibiotic and Eve improved rapidly.

On Sunday Eve went to a birthday party. She had a blast and I am so grateful that the birthday child chose to invite Eve. I cannot stress enough how wonderful the community children are. I teared up when I thanked the mother of the birthday child. I will admit it's always very emotional for me to be around typical kids who are Eve's age. It's wonderful, but difficult, too.

Finally, today Eve had a GI appointment at the satellite clinic in Pittsfield. It went really well. I saw a different doc than the one we saw in August. This was a much better fit. He knew all about mito (and specifics, too!). He even knew that Shoffner used to be at Scottish Rite, and had heard of Eve's former GI doc. I felt instantly comfortable with him. He also suggested that we see a particular mito doc in Boston, and it was nice to be able to tell him we have an appointment with a new doc in that practice set for January. But the best news was that he will teach us how to change out her mic-key button at the next appointment. This way we won't have to travel to his office every 3-6 months to switch it out. I am super excited about this because lately I feel as though my life consists of traveling to doctors' appointments. Oh, and Eve weighed 31 pounds today. She's catching up to Josie (32 at last check).