Tough News

This has been an incredibly hard week. Mercifully, in the past few months, Grayson’s disease and health issues have been in the background- always there, but not the focus of our thoughts and worry. He’s been stable- no major illnesses, no hospitalizations, and it’s been months between seizures. We’ve really been cruising right along with him (or so we thought).

Tuesday he had a routine appointment with his PM&R doctor (physical medicine and rehabilitation). Although I had several things to address with her, I really didn’t think this was going to be a “big” appointment and even briefly considered rescheduling because I have been so sick (pregnancy) this week. There’s never any warning at these appointments as to which ones I find a waste of time and parking fees and which ones knock me flat.

Lately, I’ve felt like Grayson has been more uncomfortable than usual. It’s hard to get him into a position where he looks comfortable, and even when he’s in his chair, he doesn’t last more than a few minutes without whining and squirming. The tone in his body is so high- he’s stiff as a board and his body fights getting into a sitting position; he arches his back and straightens his legs when I try to get him to sit anywhere, even on my lap. And he leans to the right anywhere we put him.

I brought all this up to the doctor and we at first discussed some options- increasing his Baclofen (a medicine he takes for spasticity), Botox injections, or surgery for a Baclofen pump, which would bring the medicine directly into the spine. Then she asked me if he’d ever had any x-rays of his hips. Yes, over a year ago before his SPML surgery. She went to the computer to try to find it, couldn’t, but found an x-ray done in December in the PACU to confirm his GJ tube placement.

The x-ray showed two major issues (neither of which were brought to my attention in December). The first is Grayson is pretty severely constipated- his colon is distended and his abdominal cavity is filled with “old poop” were her words. She felt his abdomen and confirmed this is still the case. The second issue is his right hip is completely dislocated. When she showed me on the x-ray I felt sick to my stomach.

I feel so horrible/guilty/sad about both these issues. Grayson poops every day, so I had no idea constipation was an issue. In fact, almost all the Mito kids we know struggle with this, and I’ve always felt lucky that he didn’t- or so I thought. The hip dislocation shocked me too- the SPML surgery a year ago was supposed to prevent this. I almost started crying right there in the exam room.

Our short term plan is to do a bowel cleanout at home this weekend (3 days of non-stop poop- anyone want to join us?!) and see how much this relieves his discomfort and positioning issues. Once we do this, we will reevaluate in a few months the Botox and Baclofen options. We have an appointment next week with an orthopedic surgeon to discuss our options for the hip. Our doctor seemed to think the only long term solution would be to do hip reconstruction surgery, which would be major and invasive. I want to avoid this if at all possible, especially since Grayson doesn’t walk and doesn’t require weight bearing on his hips (that and his spasticity were most likely the reason this happened). A major surgery equals major risks for a kid like Grayson, and we will really have to evaluate the risk vs. benefits of surgery. I’m not sure what (if any) other options there are, so I’m trying to wait until the appointment to really obsess about this. If you pray, could you please pray for clarity on whatever decisions we need to make for Grayson regarding his hips? As always, we are only concerned with his comfort and quality of life, but sometimes how to achieve that isn’t quite clear.

Since Tuesday, I’ve been a mess. The emotional toll of all this, combined with my awful nausea and vomiting that seems to be getting worse rather than better, has just about done me in. I had a mini-breakdown at my OB appointment this morning, and realized I’ve been disconnected from this baby- all I’ve been focusing on is how awful I feel. I don’t think I was supposed to have an ultrasound today, but after I tearfully told her everything that was going on with me and Grayson, my doctor took me into the ultrasound room and said, “Let’s look at your baby.” I’m so grateful she did. I saw my baby that 4 weeks ago was just a blinking dot on the screen and now actually looks like a baby. He or she was wiggling and moving like crazy, had a perfect heartbeat, and was measuring once again to the day- 11 weeks, 2 days. Life truly is a miracle, and never gets old, even the third time around.


Just Surviving

I’ve gotten away from writing about the day to day happenings of life, and want to get back to doing more of that again. I know in the years to come, I’ll appreciate my efforts at documenting the every day, normal details of our family’s life. 

First, thank you so much for all your congratulations on our big news. We are so excited about adding to our family and embracing the chaos that will be our family of five. I’m currently 10 weeks, and feeling terrible. This has been my most difficult first trimester, with near constant nausea and daily vomiting. I’m also constantly starving, and eating is the only thing that makes me feel temporarily less sick, so I’m consuming an obsene amount of food every day. But the good news is at 8 weeks, the baby looked perfect on ultrasound, and was measuring exactly to the day of what I knew he/she should be. 
I’m trying to give myself a break about my parenting, because honestly, I’m just surviving these days. Charlotte watches hours of Daniel Tiger daily, and I nap whenever she does and go to bed minutes after I put her down most nights. I don’t think there’s any permanent damage for her though, because she continues to be her sweet, sassy self and is actually learning to play on her own and is developing quite the imagination. Thankfully, she also has lots of activities during her week, and continues to thrive at school and church. Grayson is my lounge-on-the-couch partner in crime, and we snuggle every afternoon after school for a few hours before his nurse arrives to put him to bed. 
So I just have a few weeks left in this first trimester and hopefully I can get into the I love being pregnant (because I do!) phase. 
This week has been kind of crazy and stressful. My grandfather is really sick and my parents have been in Michigan all week with him and my grandmother. It’s so hard to be so far away and not able to do anything to help. In addition to that, Ryan has been home sick from work all week and yesterday tested positive for the flu! I am normally about the opposite of a germaphobe, but I’ll admit I freaked out a little yesterday and proceeded to try and disinfect the entire house. We sent Ryan to my parents’ house since they are gone, and started Grayson on Tamiflu to hopefully prevent him from getting sick (the flu could be devastating for him, and at the very least we would be in the hospital). I’ve loaded Charlotte and myself up with vitamins and bathed us in essential oils, and have prayed a lot. So far, Grayson and I don’t have any flu symptoms, but poor Charlotte looks like she might be coming down with it. I picked her up from school today and her face was bright red, watery eyes, runny nose and a little cough. She is acting ok, other than maybe a little more fussy and irritaible than usual, and doesn’t have a fever, but I’ve got an appointment with the pediatrician in the morning to have her tested. 
Hopefully the next few weeks will bring relief from all this sickness: flu sickness and first trimester sickness- and we can get back to really enjoying life!

Internet Hate

I haven’t written in what feels like a really long time. The truth is, for the past three weeks or so, the internet has been a really, really demoralizing and hurtful place to be, and I’ve been trying (mostly unsuccessfully) to distance myself from this crazy vaccine war that’s raging on social media.

I don’t want to publicly discuss my position on vaccines and the decisions Ryan and I have made for our family, with the full support of our pediatrician. I am more than happy to talk about it privately for anyone wanting to engage in a respectful conversation, but in my experience, internet debates go nowhere and many times escalate to nasty very quickly.

It’s the nasty I’m concerned about.

WHY do people think they have license to be so cruel just because they are behind a keyboard and computer screen? Why is it ok to literally tell a stranger that you hate her, that she is a horrible, selfish mother and should have her kids taken away just because of a choice she’s made for her family? Why do people think it’s acceptable to wish harm on someone’s child because she thinks his mother is a crazy anti-science idiot (but has no clue the journey that family has been on or that family’s medical history)? It’s bullying.

It’s been said a million times, but it probably needs to be said a million more: we are all doing our best. The medical decisions we’ve made for our family (especially Grayson) are the result of hours of research, consulting with medical professionals, prayer, and intuition. I have many friends who have done the same; some of them vaccinate fully on the CDC schedule, some selectively or delay, and some don’t vaccinate at all. We all love our children fiercely and are doing what we feel led to do. You don’t have to agree with, or even respect someone’s choice, but no one deserves to be the target of hate speech. And really, do hateful words ever change anyone’s mind or bring them over to your side? No.

Please just know any time you post a snarky comment, meme, or article that attacks a group of people (on whatever issue, not just this one), it’s hurtful. And just because you didn’t write it, doesn’t mean you aren’t being unkind by posting it. A video featuring magicians screaming obscenities at parents who don’t vaccinate their kids isn’t funny, nor is it an effective means of changing anyone’s mind. It’s mean. Surely you yourself wouldn’t scream obscenities in my face, so why would you post a video for me to watch of someone else doing it? As Glennon Doyle Melton so eloquently says, “If you aren’t kind on the internet, then you’re not kind.”

And for the record, posting your views online on whatever issue you are passionate about is fine with me. I love to read other people’s views on a variety of topics, and honestly, social media has been amazing at opening my eyes and even changing my mind on several things- when it’s done respectfully. But belittling and lashing out at someone just because she parents differently than you do (and even if you believe her parenting decisions are dangerous for whatever reason) is wrong.

I’m really at a loss what to do with my participation in social media, and even blogging, right now. Facebook has been such a positive in my life for so many ways- a lifeline at times- but right now, it just feels like a hostile war zone. I’m also so protective of my blog and it’s been my therapy for many years now, but I’m a little scared and resentful about it right now. It just doesn’t feel like a safe place to be anymore. And it’s started creeping in to other parts of my life- this week I’ve found that I’ve felt like a failure in many areas of parenting and have been dwelling on those (oh, Charlotte’s had way too much screen time and has eaten far to few vegetables…)- and I’ve been beating myself up over these things instead of celebrating and enjoying the many, many joyous moments of our week. The internet is getting to me, and not in a good way at all.

I know all I can control is my reactions, and I am ultimately accountable and responsible for anything I do and say, online or off. I probably can’t change anyone who is determined to be nasty, but I need to figure out how to limit my exposure to it.

But please, I beg you, whatever you say, or post, just be kind.