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).

puppet fun and swallow study

Friday we went to BMC for Eve's swallow study. We had tried to prep her by telling her that there would be no "owies" and that all she had to so was sit there so the nurses could take pictures of her eating. Yeah. That didn't really help. Eve's speech therapist also came along to watch the procedure. (I was so grateful for this, btw. I never know if I ask the right questions and I don't know what to look for. Having a specialist along is a wonderful thing.) Pam brought some puppets with her. They weren't appreciated by Eve at the hospital, but you can see from the video below that they were appreciated at home.

Anyhow, the experience was pretty frustrating. We showed up and it just wasn't the right kind of swallow study. They took Eve into the Xray room (and of course she is freaking out) and really just aren't prepared for her. They seemed a little perplexed about what to do with this kid who can't stand or sit on her own. Not to mention the fact that they wanted her to lay down on the table and drink the barium solution. Ha. Like that's going to happen. I think what they wanted was to watch her drink the barium and then check to see if her stomach emptied. The finally got a chair from another room and sat Eve on my lap. She managed a few sips in between sobs and the radiologist watched it go down and told us she didn't aspirate. What we should have had done was a swallow study with a speech pathologist who would watch Eve eat a variety of foods of different consistencies using a live Xray video (rather than static images). This is what was done in GA. It was pretty much a waste of our time (and Pam's). I left feeling disappointed and angry at myself for assuming that the right test would be ordered and not double checking.

This afternoon I needed to call the pediatrician about something else, and when I talked to the nurse, I mentioned that the procedure wasn't really what we had hoped for. The doctor called me after dinner. When I asked her how she was, she said, "Irritated!" She told me that she had ordered the swallow study to be done with a therapist and the live video and is irritated that the wrong kind was performed. So, on Monday she will be sure to get the right type of study ordered (which she still wants to be done at BMC).

comment from a classmate

A parent of one of Eve's classmates emailed me to tell me a funny story:

"Tonight at dinner [my son] said 'Everyone wants Eve's attention'. I asked him why, and he said that Eve is the best in the class. I asked what she's the best at, and he said 'Everything!'"

Needless to say, I totally cried.

new chair and halloween

So, the chair finally came! We're having some issues with the accessories, but it's a fantastic chair. Eve really loves it. The headrest appears to be sewn wrong and it flops down and hits her on the head, and the tray doesn't fit right (you really have to jam it on there). I called adaptivemall and they are going to contact the manufacturer. Anyhow, here are pictures of Eve sitting in it. She had a blast in the kitchen being able to reach things she never has before. So thank you again for helping us reach this goal!!

Other things I want to mention: Eve had an "episode" after school on Friday. On the way to the bus, she choked up food that she had eaten 45 minutes prior. Her teacher said it was accompanied by thick mucus and that it definitely did not come from her stomach. She also said it was not hidden in her mouth or cheeks since she watched it come up. So, it must have been hanging out in her esophagus. This is very concerning, especially when you think about the risk of pneumonia from aspiration. So, I put a call in to the pediatrician's office. They are going to schedule a swallow study at the hospital in Pittsfield. I am nervous that Eve will be crying too hard to eat during the procedure, so I have already begun to talk to her about going to the doctor's so they can take pictures of her eating her favorite foods.
Also, she's been waking up again at night. I think this might be related to the CoQ10 in her mito cocktail. I'm going to push the pm dose earlier to around 4pm. Had a dream the other night that really bothered me. Dreamed that Eve was able to sit up. I watched her do it and got totally excited. Woke up and thought, "Damn."

Eve was a chef for Halloween. She loves the costume and has been playing it it a lot. Unfortunately it rained last night so there was no trick or treating for her. But she looked super cute!

Josie was wondering what's cooking.

visitors

Jim's parents came for a visit about a week ago. It was wonderful to see them and they were such a big help. They were there to get Eve off the school bus, and Jim's dad was especially helpful as we worked on the front walk. We took out the gravel (not conducive to using a wheelchair or shoveling snow) and just yesterday finished putting the pavers in place. I need to take a picture. It looks so much better!

Anyhow, while my in-laws were here, Josie made sure they didn't miss their dog too much. She attached herself to thier sides. My MIL was playing with Eve on the floor and Jojo had to get right up in there.