Well, we had a fun weekend with a very cute little girl. She is learning to make raspberry sounds, which is adorable. We went swimming this weekend and she cried when I took her out, so maybe she is just mad that we are getting out of the water. It is so hard trying to guess. Whatever happened last week seems to be water under the bridge, thankfully!
I have had an exhausting day today trying to figure out how to get the infusions done at home. I have been on the phone and the computer most of the day. Poor Molly hasn't gotten her usual amount of attention.
They cannot access a vein in the head in a home environment, and this is the only way we have had success with infusions. They suggested that we get a port, which involves surgery. I am nervous to have her put under for this. There is risk with any anesthesia and even more so for a baby like Molly. I would consider it, but only after exhausting all other options. I found a few places that can do infusions as an outpatient, but we would need a Dr. associated with a particular hospital in order to work. I'm sure it will all work out in the end, but it is a frustrating process for the moment.
We may just have to do one more at UNC and then get everything in place for the next one in October.
I am just so happy that she is doing as well as she is. She is getting stronger by the minute and is happy most of the time. She is tolerating "tummy time" and we do two 15-minute "sessions" everyday. She is getting better and better at pushing up and looking around and can do it for a good little while (30+ seconds) at a time. Gotta love little victories.
We met with Early Intervention today to discuss her progress. Our case worker was very impressed :). We have a vendor coming on Wednesday to measure Molly for a special, soft chair. We haven't had a place for her to safely sit, so it will be nice for her to observe her world in a more upright fashion. We will of course post pictures when it finally arrives.
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