Next up

We had Mya's annual IFSP this past week to discuss her therapy goals and outcomes for the next 6 months. As we reviewed her prior goals I was pleased to see that a few had been accomplished. I recall that my response to the question back in October of what I wanted to see her do in 6 months was something like 'honestly I just want her to stop crying'. And while we can check that one off the list, there were a few more like taking staged baby food consistently, activating simple switches and batting at toys with purpose that she is doing as well. It feels good to know we are moving forward.

We are going to work toward her making choices between toys, first with her focus and eventually with her reach. We are also introducing more cues into her routine so that she can anticipate and be a part of what is happening rather than having life happen to her. While we are doing some of that like touching her hand before food goes to her mouth we know that there are many more simple things we can incorporate into her routine to help her feel a little more in control. We talked about ordering new thumb splints to keep her hands open and I was super excited that one of the options is hot pink...about which they told me they can't make any promises. Come on, the kid needs to be stylish! We are also putting in an order to get her measured for AFOs to keep her ankles in alignment (I am told those come in all kinds of designs!!) so Miss Mya is going to be a whole new gal very shortly.

It feels like we go in cycles where we have very few appointments and then something every week and it appears we are heading into a busy time. We see the Neurologist in 2 weeks, and then an epilepsy specialist 2 weeks after that to get another opinion on the seizures. If the specialist agrees I imagine we will be starting on a new medication that we have been trying to avoid due to its potential side effect of vision loss. But, before we can start that we have to go back to the ophthalmologist to get a baseline on her vision. We are due for an eye exam early this summer anyway, so based on the waiting lists to get into some of these doctors, I imagine we will just do that at her annual exam. We also need to get in to see the endocrinologist who she hasn't seen since the NICU. The proximity of the part of the brain that is associated with optic nerve hypoplasia to the part that controls the endocrine system means that we need to keep the endocrine on our radar. Then we have the 12 month NICU follow-up clinic and hearing tests for everybody and then the fittings for the AFOs. I am thinking we should just rent a place down by Children's Hospital and save the money on gas.

Ella has her IFSP this week and I am pretty sure we blew her goals out of the water. I seem to recall something about at least getting to tall kneel, and the child is tooling along behind her push car. Clayton better step up his game or his big sister will be our first walker. That and could somebody give this child a haircut...