Yesterday was a very long day. Grayson had two doctors appointments where we were set to receive several pieces of big news: the results of the MRI he had in June, and update on his chances of getting in the clinical trial for Epi 743 (the drug currently being tested on Leighs and other Mito patients), and if Grayson will have to be on oxygen.

At our appointment with G’s Mito doctor, we discussed:

• The wonderful, great, shocking (to me) news: The MRI results had not changed since his last MRI in May of 2012! This is amazing because his brain is no more diseased than it was a year ago, even though his symptoms have obviously worsened. Dr. K said sometimes MRI results do not correlate with what is going on symptomatically, and Grayson’s regression might be a result of things happening in other parts of his central nervous system other than the brain.
• The bad (old) news: Grayson’s brain is obviously very abnormal. Dr. K was nice enough to take me to her office, show me the scans, and explain in detail what I was looking at. I saw the lesions and undeveloped white matter, the white spots that are supposed to be dark. It made me sad.
• Since Grayson continues to have seizures every few weeks, we are upping his medication dose. Again.
• Their office is working very hard to get Grayson into the clinical trial. If he is accepted, however, it means a skin biopsy (possibly needing to be done in California), seven trips to Maryland, and lots of blood draws. He would get a placebo for 6 months and the real thing for 6 months (of course we wouldn’t know in what order), and we would have to take him off CoEnzyme Q10, one of the main parts of his Mito Cocktail. So it would be a lot to schedule and deal with; our prayer is if it would really help Grayson and lengthen/improve the quality of his life, he would be accepted, but if not, we don’t want to put him through all that.
• The social worker for the clinic asked if we were interested in doing Make A Wish. Grayson would qualify, but I told her we most likely want to wait awhile, especially if we are going to take a trip. The thought of traveling with my crew right now gives me a lot of anxiety. Maybe in a year or two, when Charlotte is a little older and at least walking, we will start to think about what we would want to do for Grayson.

After that appointment, we hurried to the car and drove across town to Grayson’s pulmonology appointment.

• Grayson is going to start receiving oxygen at night. Dr. J said during his sleep study, G responded well to the oxygen, and since Mito kids in general seem to do well with it, we should try. She said if after 2 or 3 months we don’t see any difference in his sleep, seizures, or comfort level, we can stop.
• Other than that, Dr. J was very pleased with how G looked and sounded. We are so thankful that he doesn’t have any major respiratory issues yet.

It was an exhausting, long day but we went home with good information and a plan going forward. And Grayson took a long nap all afternoon, which was great!

Have you heard of Beads of Courage? Beads of Courage is an organization that helps children with chronic illness tell their stories through beads that represent treatments and milestones they have experienced in their journeys. Please visit their website to read about the awesome work they do to honor and support sick kids.

http://www.beadsofcourage.org/

A few months ago, a friend asked if Grayson could be the Beads of Courage sponsor child for a local  event this September. I knew about the program and wanted Grayson to be involved, so I was incredibly honored and excited that he was chosen.

I was given a journal page to fill out and had to go back to Grayson’s records and record basically everything he’s been through medically. I had to count how many times he’s been poked for a blood draw or IV (A LOT, poor baby), had a tube change, scans, tests like MRIs, EEGs and spinal taps, surgeries, therapy sessions, ambulance rides, hospital stays, etc, etc, etc. Seeing all those numbers in one place was overwhelming- my little dude certainly has earned a symbol of courage in his almost three years of life.

Grayson will receive his beads and be honored at the Bead Inspired event in Katy on September 28 (less than a week after his 3rd birthday!). If you are local (or not) we would LOVE for you to attend.

Here is the link to get your tickets!

As part of this honor, our family received a photoshoot with Nikki Guest. I know Nikki (and her sweet dog) because she is a Waggin’ Tails client, and we had such a great time at our shoot last Sunday. She was so patient with both kids, especially Mr.G who was not thrilled to be out and having to pose past his bedtime. But despite his grumpiness, Nikki got some great shots. We haven’t seen all the pictures, but this is our “sneek peek”- love it!

I am so excited and grateful for this opportunity to share Grayson’s story as well as raise money and awareness for Beads of Courage. I hope a lot of friends will be able to attend on September 28!

I was recently asked by a family member to write a post detailing my experience of moving from “Holland”  to “Italy” after Charlotte’s birth. But the truth is, I can’t do that. I can’t write that post because I am not, and probably never will be, living in Italy.

It’s more like I am now raising our “Italian” daughter in Holland. Holland is our home, and as the essay says, They’ve landed in Holland and there you must stay.

When Grayson was a few months old, I was thrown into the world of special needs parenting. Unfortunately, when I was thrown into that world, there wasn’t a whole lot of guidance from the medical community. We were sent to specialist after specialist, some who were no help at all, and some who provided huge pieces of the diagnostic puzzle. I relied on Google, and the hours Grayson slept so I could read and research his symptoms and try to piece together my own diagnosis of my baby who just wasn’t right. Because I felt like I had to figure so much of this world out on my own, or make an effort to make connections with people who could guide me, I really feel a sense of ownership for life as it is today. While I’m certainly not saying I did it all on my own, because that couldn’t be farther from the truth, I am proud of the many hours I have spent doing research,
making connections, and working to give Grayson the best life possible.

We started therapy when Grayson was 4 months old. I loved therapy, because it felt like we were trying to fix things, not just hand over a copay in exchange  for a crop of new questions, like we did at every doctors appointment. But therapy didn’t fix much; it gave us goals and skills to work on, but progress was so slow and new issues that arose always outnumbered the amount of progress gained. Any semblance of a life in Italy dissipated as the months went on and Grayson’s needs became more complex.

So I’ve made my home in Holland. I’ve learned the language of medically complex families, my schedule revolves around doctors appointments, Grayson’s school and activities that he is able to participate in. While every waking moment is no longer focused on figuring out what was wrong with my baby and trying to make him better, the task of making him comfortable and content still occupies a lot of my thoughts and time. Over time, I’ve grown used to this life, this place. Sometimes it’s not comfortable, or pleasant, but it’s home.

And then there’s my little “Italian”, my healthy child. My precious little daughter will also grow up in Holland- a place where things aren’t always fair, and where she will undoubtedly have to make sacrifices because of her brother. She will grow up with a mother who will do anything to help her be successful, but who also has the perspective that so much of what the world places importance on just doesn’t matter. I can already see understanding and concern in Charlotte’s eyes; at 6 months old, she doesn’t know what Grayson’s retching, vomiting and seizing means, but witnessing it worries her. She loves her brother and  loves watching him, and one of my biggest prayers is that Grayson lives long enough for Charlotte to really know and remember him.

When I’m doing things just for Charlotte, “Italian” things, it literally feels foreign. Forms with lines for medical history and current medications are left blank, days pass and milestones are met without a parade of therapists in the house, and there are no tubes to contend with. While it’s easier, and certainly more ideal, it’s foreign, and I feel out of place in that world.

Some of the most challenging parts of this life are the almost daily decisions about “normal” activities, and if they are plausible for our family. We spent all day Saturday away from home, shopping for clothes for family pictures and then the rest of the day with the kids’ cousins and grandparents. It was a wonderful family day, but Grayson was sound asleep by the time we got home at 5:00 so we put him straight to bed. Then he had a bad seizure Sunday morning. Was the seizure a result of him being too tired and overstimulated on Saturday? Possibly. Was it worth it? I’m not sure. Our family on Ryan’s side is going to the beach this week; originally I was planning on taking the kids for a night but I changed my mind. I’m afraid it would be too hot and too much change in routine for both Grayson and Charlotte.

I want so much for my children to get out in the world and do things- normal things- but for Grayson, there’s always a price to pay. And while I want these experiences, I have to remember they are mostly for my benefit, not his. Grayson is content (prefers) to be at home or school, surrounded what is comfortable and familiar. He likes his routine, his music, and his early bedtime. He doesn’t care about going to the beach, seeing the latest movie, or doing anything other than what he did the day before, or the day before that. He likes what is predictable, because his body and future are not.

Right now, today, I cling to and embrace our little life in Holland. It’s given me so many good things- perspective, empathy, friends, and the ability to count each day with Grayson as a precious gift.

Parenting Grayson this summer has been really hard- emotionally. We celebrated when we hit August 1 because we had made it through a whole month without a hospital stay- our first hospital free month since December! So the past month Grayson has been stable- he’s had several seizures, still vomits a lot, but no real emergencies or scares. That part has been nice.

What’s been hard is that he never truly bounced back from his illness in late April. The seizure he had that day lasted 45+ minutes and his fever was really high. I don’t know what lasting impact that had on his body and brain, but he really hasn’t been the same since. I haven’t written about it much because it’s just so painful- it truly felt like my Grayson was slipping away. He wouldn’t make eye contact and wouldn’t respond to his name. My mom says she felt like he was totally in his own world and wasn’t even recognizing people he knows.

I know miracles happen every day, and I would never doubt that God could heal Grayson, either completely or in small ways. What I had started to doubt was that he would. It just seemed like Grayson was regressing quickly, and we were going to have to accept it.

Then we started Grayson on a new medication (the one that is super expensive and insurance has yet to approve). About two weeks ago and 30 days of the medication, he started coming back. He’s definitely engaging more, propping himself up in a semi-sitting position, and trying hard to communicate with us. I’ve said a million times how much music and singing connects with him; well, this weekend, he started singing along with one of his favorite songs, “Down by the Bay.” Watch the video and listen closely- you can definitely tell he’s mimicking and you may even be able to make out a few of the words.

I’m truly counting this as a miracle. Oh happy day!