I asked my sister once why she didn’t set up a caring bridge site for her husband (for those of you who are unaware of their situation, please check out her blog: gettysburgmoldenhauers.blogspot.com). She explained to me that keeping up with both a caring bridge and their family’s blog would be too much. I understand now what she meant. When we started this journey, Allison was the one updating the caring bridge for us. Every day brought new medical issues or tests or discoveries, so we would either call or text her the information and she would write it up and post it. And we are so grateful that she did – at some point, we can go back and see a timeline of where we’ve been, since the events are now hopelessly jumbled together in our memories. And then I got some computer access and started posting my feelings about our situation on my own blog (bloomingjoy.wordpress.com). And now I’m updating both, trying to do so on a daily basis. It’s getting harder to find different things to say on each with Samantha’s medical stuff becoming more routine and my feelings settling down, more or less. So at least for today, I’m writing one post and putting it in both places. If you are reading this on caring bridge and haven’t read my blog, follow the above link to it. If you’re reading this on my blog and haven’t seen our caring bridge, go to caringbridge.org and search for Samantha Pittock.
Now, for the updates. Last night Travis and I were up late talking and worrying and wondering about some of the decline we’ve seen in Samantha over the past couple of weeks. What precipitated this conversation was me going through the pictures on my phone. I realized I hadn’t taken a lot of pictures of her lately, and I was curious what the latest ones were. I found pictures I had taken at the hospital before we came here (Mother’s Day weekend) where Samantha was bright eyed and alert and responding to visual and/or sound cues from us and her mobile. It was shocking to see, to be honest. I think the decline in her responses to us happened so slowly that we didn’t really notice it happening, and plus we attributed her sleepiness to the increase in her anti-seizure medication. But we were worried enough to talk to the doctors again this morning about our concerns.
They agreed that our concerns were legitimate, and so she is now scheduled for another EEG tomorrow (this was surprising to the doctors since this facility doesn’t generally do those on the weekend, but apparently a tech was available for it). And her MRI that was supposed to take place on the 27th is now rescheduled for this Tuesday, the 24th. It may only be 3 days sooner, but hopefully we’ll have some results before the weekend this way.
The neurologists have talked a lot to us about the “progression” and “evolution” of her condition. We’ve heard that a lot. Our concern is that the damage has now spread to new areas, or that perhaps she has had some type of stroke or that the seizures she has had/could still be having have done damage in other places in her brain. Please continue to pray about all of these things.
This whole thing is very scary. Some days it feels like we’re losing her, but very slowly. Other days it’s easy to be hopeful that things are stable, when she acts the same as the day before. One of the most difficult things about this is the not knowing, as I have mentioned before. In that not knowing comes a whole bunch of stress whenever things change. We adjusted to the knowledge that she will probably have difficulties with motor function (more or less). Then she failed the hearing test at the hospital, so we’ve been trying to adjust to the possibility of her being deaf. Now we’re looking at potentially more damage – is her vision compromised? Her cognitive functions? I still wonder how we will communicate with her down the road, especially if she can’t hear or see or control her movements.
At the same time, I am very thankful that we live in a time when there is so much intervention and therapy available. I think about Helen Keller being locked in her own world until Annie Sullivan came along to teach her. Because of them, so much has been done to reach children whose challenges are greater than others. And come to think of it, wasn’t Helen Keller similar to Samantha, in that she was born with all of her senses intact but got sick as a baby?
I try to remind myself that from the time she was born, Samantha was always pretty laid back. She passed her newborn hearing screening, but she never was one to react to sounds much. Frodo would bark and she wouldn’t even flinch. It’s just hard to remember sometimes.
I can’t promise that the caring bridge and my blog will be different every day, but I will post to both every day if possible. Thank you again for all of your prayers.