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).
1 comment:
So happy the swallowing is fine, and that you've found yourself a GI doc who knows what he is talking about - marvellous. How simply wonderful that Eve was at a b'day party and was part of the crowd - I can fully understand your tears - happiness and sadness. And, finally, just love the walkway - perhaps I can hire Jim and his Dad to do one for us ;-]
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