We had an appointment with a spina bifida specialist in Iowa City this morning to talk about what we can expect to face with Grace’s care and what we should tackle first. She was wonderful to talk us through the condition in a more technical way than is easy to find online and to give us ideas of how to start care for Grace when she comes home. Since we could only show her a picture and give her the limited info we have, we obviously didn’t get specifics, but she could tell us that because of her head shape and age that Grace probably has hydrocephaly and a shunt. Basically this means that her spinal fluid is not able to regulate itself like it does in the rest of us and this can cause problems by putting pressure on parts of the brain. One very common outcome of this is that SB kids typically have some form of learning problem, frequently in processing details and working with abstract ideas. However, in her experience they are typically very smart kids who do really well in reading and memory work. She also mentioned that one of the first things we should do when Grace comes home is to get her kidneys checked out because SB sometimes results in urine being pushed back up into the kidneys and this can cause damage. She went over quite a few conditions that could be present because Grace probably hasn’t received treatment for different aspects of the disability…it’s good to know they are a possibility and yet it’s scary to hear all the ‘maybes.’ I found myself several times during the appointment just trying to remember to breath and trust that God will get us through whatever we’re facing.

Although she is a medical doctor, she also has experience with adoption as well and talked us through a few issues we need to keep researching. Like we’ve heard from so many, she told us the relational issues are likely to be harder to face than the medical ones. I had it in my head that I should probably be expecting ‘Big Grace’ to be emotionally/developmentally more on scale with ‘little Grace’ than Josiah, even though she’ll be closer to his age. Dr. McBrien said we should probably lower that expectation to more like 12/18 months old because of how long she’s been in an institution. She also encouraged us to continue looking for pre-adoption counseling so we could be more prepared for the ‘artificial twinning’ of Josiah and Big Grace. They will be very close in age, but will be drastically different in a lot of ways which could cause stress. While all of this was a bit overwhelming to have to absorb so quickly, it is incredibly helpful to be able to think through it now and adjust our expectations and find the resources we know we’ll need soon. Thankfully, we are in an area that offers a lot of excellent medical and educational resources and the social worker that met with us today informed us of some financial help that will offset some of the treatments/home modifications/health costs that we are facing.

On another note, our newspaper interview ran this week and it was wonderfully written. They also did a great job of helping us publicize the dinner/auction. Just a reminder to all you locals that if you’re planning to come we’re requesting an RSVP by July 1st so we can plan accordingly for food. You can email me at kimmie7@gmail.com or call at 319-447-7938. I think it’s going to be a lot of fun and we have some wonderful items that have been donated to the auction. It makes me want to bid on some, but that might be a little counter productive! :)

Bookmark and Share

Other Posts on this Subject: