Sort-of Update

My lack of blogging for a week is brought to you by the plague. All four of us have or had been sick since last Friday.

Friday morning, my mom, Charlotte and I went to Grayson’s school for Thanksgiving lunch. Unfortunately, G had a seizure earlier in the morning before we got there and was either asleep or crying throughout the event. I then had to take him to get a hip x-ray in the med center (we are consulting with an orthopedist about the possibility of surgery), and he was still sound asleep until I put him on the x-ray table. Then he was about as happy to be woken up as you would expect.

By this time, I was really starting to feel awful (sore throat, sinus pressure) and Grayson was crying, tired and throwing up. Lovely. The next three days were miserable; I was sick, Charlotte was sick, and Grayson seemed really sick. Moms and kids should not be allowed to be sick at the same time- misery! Ryan was at the ranch getting our stuff that we have been storing, so he managed to avoid the germs for a few days, but came down with symptoms yesterday. Grayson actually got a fever of 102 Saturday, and we normally would take him to the ER for that, but I was feeling so awful and we knew from one of our Mito friends that the hospital was full and we would likely have to wait for hours for a room if he was admitted. Thankfully, we were able to get his fever down at home and managed his other symptoms pretty well.

I think we are finally getting past it, thank goodness. With Thanksgiving tomorrow with Ryan’s family and a weekend trip to the ranch planned for Friday, we don’t have time for any more germs!

In other news, the house is coming along. We got horrible news today that we need  new A/C and heating units (someone, please stop the bleeding!) but other than that, things are coming along. Our new carpet was installed Friday, so the house is dog-pee smell and stain free. We are almost finished painting, and Grayson’s bed was delivered today! I am so excited to start decorating his room- this move, and this house, is for him.

Well, I really did intend to make this post a little more interesting and post pictures, but it’s been a really, really long day- I was home with both kids all day long and am completely worn out. I hope all of you have a wonderful Thanksgiving tomorrow!

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Letters to Charlotte: 10 Months

Dear Charlotte,

Well, here we are- double digits. Just as I predicted, each month is flying by faster than the last, and every time I turn around, you are growing and learning some new amazing skill.

You are busy. Unless you are asleep, you are moving, exploring, playing, talking, eating, or pulling up on something. You have no moments of chilling out or being still, which is both hilarious and exhausting. You are still very much into getting in your hands things you know are off limits. Grayson’s medical supplies (actually, anything to do with Grayson, including his face and hair), cell phones, remotes, books, and paper are among your treasures you are bound and determined to grab.

It thrills me to watch your personality and interests develop. You are starting to be a little interested in books. You usually won’t sit through and entire story, but will pay attention for a few minutes as we read and point to pictures. You really like balls and playing catch/fetch with yourself- so funny. You still adore music class and love playing the drum and the bells.

You love to talk and are becoming quite the chatterbox. You have mastered “Bye bye” with a wave when we are leaving, and have discovered the sound your mouth makes when you brush your lips with your hand while you are talking. Again, hilarious.

Just this past week, you have started being a little clingy and fussy when I leave you in the nursery or mothers day out. I wouldn’t call it separation anxiety, because as soon as you get settled in with your friends and teachers you are totally fine, but it is nice to know you recognize your momma is leaving you for awhile! I know you know I will always come back and I am so, so happy that you adapt so well to different situations without me.

You are still doing really well with solid foods, although I am starting to see you get a little pickier about foods (i.e. vegetables). Get over it kid, vegetables are here to stay! You are still nursing 2-3 times a day and taking bottles throughout the day. There have been several times over the past month where it seemed like you were losing all interest in nursing and were weaning yourself, but then you proved otherwise a day later. I’m letting you totally decide when you are ready to be done; it’s been a wonderful, healing experience for me, but now it’s all about you and your needs, not mine.

You weigh 19 pounds, 4 ounces, and are in size 9 month clothing and size 3 diapers. You still have zero teeth, but have no problem chewing your food with your gums. You go to bed usually between 6:30 and 7:00, sleep until about 5:00, wake up to nurse, and if I’m lucky go back to sleep until about 7:00. Naps are hit or miss due to our on-the-go schedule, but on average  you nap 1.5-2 hours in the afternoon and about 30-45 minutes in the car in the mornings.

This month, we will be moving into our new house! Mommy and Daddy have been busy getting everything ready for our family’s new place. You have a pink bedroom waiting for you, and when I say pink, I mean PINK! I hope you like it and it will be a smooth transition for you. You also have your first Thanksgiving coming up next week- I can’t wait to see you dig into all that yummy food! My biggest thanksgiving this year is that you burst into our lives with spunk, energy and sweetness 10 months ago. It’s only been 10 months, but I cannot imagine how I ever lived without you, my sweet girl. I love you more than words can say and am so, so thankful that I get to be your mom.

Love,
Mommy

Friday’s Appointment

Friday morning, Grayson had an appointment with Dr. K, our Mito specialist. We left with no new prescriptions or tests ordered, but it felt like a “big” appointment. I’ve been thinking about it all weekend, and want to write the details down for reference later.

First, we met with the social worker who works in the office. She is wonderful. She truly cares about the patients and families and is willing to do whatever she can to help. She helped get the ball rolling to order Grayson’s new hospital-type bed and made changes to our letter of medical necessity quickly. The bed should be delivered in the next few weeks- I’m excited to get it into Grayson’s new room and get him out of a crib and into his “big boy” bed! Friday, we talked to the social worker about possibly getting Grayson a wheelchair to replace his medical stroller. I’m looking into whether or not this is something we need to do right now.

As you know, Grayson did not get into the clinical trial for Epi-743. Last I heard from Texas Children’s (our local site for the trial) there were questions about Grayson’s MRI. Dr. K did give us an explanation as to why, after all this time, Grayson still is not on the drug. Basically, Grayson does not have “classic” Leigh’s Syndrome, which we knew. His brainstem and cerebellum are not damaged, but he has white matter disease, demyelination on the majority of his brain, and all the characteristics of the syndrome. Read this. This is Grayson, on paper. Dr. K is confident Grayson does have Leigh’s, but for clinical trial purposes, TCH would say that he does not. It’s so frustrating. She did say that the day the FDA approves the drug, we will have a prescription in hand.

Of course, we still do not have genetic confirmation of Grayson’s disease either. Our last real consideration of genetics was almost 10 months ago, just days before Charlotte was born, when we saw the geneticist who said for now we are at the end of the line for genetic testing. Well, now there’s a new test that will test about 100 more genes than we have before. So Grayson and I had our blood drawn Friday, and Ryan will go tomorrow. We will get the results in 4-6 weeks; I’m not optimistic or hopeful we will get any amazing insights, but hey, what’s a vile of blood?

After this, we talked about Grayson, and the impact the disease is having on his life right now. I asked Dr. K what her opinion is of Grayson’s mental capabilities. His interests are so narrow, and he is calmed by the familiar and things that have been familiar since he was a tiny baby. And then there’s his stiff little body- the body that betrays him more and more every day. The body that jerks and trembles and vomits and seizes. But what is going on in his brain? My fear was that Grayson was “trapped” in his body- that his brain was capable of so much more than his body was allowing him to express. Dr. K gently told me she cannot know for sure, but she thinks his cognitive level is that of a baby, and this is why baby toys and calming techniques work for him. His brain is grossly abnormal on an MRI scan- and this is hard, scientific evidence of what we see every day at home.

This insight both breaks my heart into a million pieces and gives me great comfort at the same time. I’m comforted that Grayson has no idea what he’s missing and most likely isn’t frustrated trying to express thoughts or emotions. I’m comforted that when he’s lying in his bean bag chair, sucking his thumb listening to Veggie Tales for hours, that he’s content and satisfied. I’m comforted that we know how and are able to keep him comfortable and content.

But still- heartbreaking. This just isn’t how it’s supposed to be for a 3 year old little boy. He’s supposed to be growing, and changing, and learning, not stuck in an infant state forever. And of course we will never stop giving him opportunities to learn and develop- he will continue with school, therapy, and family activities as long as he is able.

So yeah, a lot of big, heavy topics discussed, but no big changes in care. And life goes on.

Thankful for Grayson

I really intended to write more “thankful” posts this month, and really have been making a conscious effort to be grateful for all that I have in my life, because I am abundantly blessed. But every time I’ve sat down to blog about these things I’ve just stared at a blank screen and nothing of substance comes out of my brain and onto the computer.

Since I wrote about being thankful for Charlotte last week, I’ve been thinking about what to write about Grayson. And that shouldn’t be so complicated, but it is.

I am thankful for Grayson, and a lot of things surrounding his life. All of these things I have written about before. I’m thankful Grayson made me a mother three years ago. I’m thankful that I am a better, more compassionate and empathetic person because of his struggles. I’m thankful for wonderful friends I have met because of him and our circumstances. I am extremely thankful that he is still here with us.

I am not, however, thankful for his disease. I HATE Leigh’s. I am not one of these people who wouldn’t change things if I could. I would trade it all if Grayson could be healthy. Leigh’s has robbed Grayson of everything; he used to have such a light, such a sweet, cheerful personality, and that light has dimmed to almost nothing. He doesn’t smile at me any more unless I’m singing to him, and he has no interest in anything “new”.

I’m struggling a lot with Grayson right now. Day after day is the same, and he seems to be slipping slowly away as the weeks and months fly by. My role as his mom is keeping him comfortable and safe, holding him, hugging and kissing him, and telling him I love him. And that’s about it. It’s a lot of work, but then it’s not. It’s mostly emotionally exhausting. I wish there was different work. I wish I had things to work on like discipline, potty training, teaching shapes and colors and letters, and figuring out his interests. I just wish for so many things that should be different for him.

I am thankful that for the most part, we are able to keep Grayson comfortable and happy in his own world. He loves school, where he spends the majority of his day, and at home seems content to lay in his beanbag chair or in his baby gym and listen to his music. I’m thankful that he is able to be included in our family’s activities, and that he is always surrounded by people who love him. I’m thankful that he still wants to be held, because holding him helps me keep connected to him.

I adore my little boy, and I am so, so grateful that I am his mom. I hate his disease and everything he is missing out on, but I have to hold on to the belief and hope that there are bigger purposes for Grayson’s life than I am capable of understanding. I’m thankful for that hope.

I Miss My Dogs

I miss my furry babies. I absolutely believe our decision to rehome Chloe, Gabby, Hank and Izzy was the right one, and I know they are loved and well taken care of in their new homes. And I am beyond excited to move in a few weeks to our townhouse with fresh carpet and paint and not have to be concerned about dog pee, hair, and slobber ruining those (that’s what I have children for, right?). I also absolutely do not want to be responsible for keeping one more being alive other than myself and my kids- so please don’t buy me a plant, ok?

But still, I miss them.

This morning, Charlotte and I drove to the new house to pick out carpet for the bedrooms and stairs, and walking down the street was a man and his bloodhound. My throat got tight and my eyes teary- as loud, slobbery, and high maintenance as our Hanky was, he was (is) a great dog. And bloodhounds are just cool dogs, and I loved owning one. This other bloodhound came up to me and I rubbed her silky ear as she pressed her head into my body- just like Hank. Sniff, sniff, sigh.

Then this afternoon, Grayson’s nurse and I took the kids to a park where I used to run with my first dog, Pippi. It brought back lots of good memories of my single days, where I would spend hours and hours a week at the park, running with that sweet little dog. Today, as usual, there were tons of people there with their dogs, and it made me a little wistful that I didn’t have a companion on a leash. Of course, then I looked down at my giant jogging stroller holding these crazy cuties, and I wasn’t so wistful.

Although I do miss the dogs as themselves, and their snuggles, and cute personalities, what I think I miss the most is that time in my life when they truly were my “kids”. I love being a mom, and I think it’s kind of ridiculous I have to even mention how much I love and adore Grayson and Charlotte, but dang, this parenting business is so hard. It’s hard physically, emotionally, and logistically. I think about the years when Ryan and I were married before we had Grayson- I would take those four dogs to the dog park almost every single day. There was so much freedom and joy in being outside with them and not having to worry about schedules, feedings and bedtimes. Dogs are easy. I miss easy.

I know someday we will have a dog again (notice how I said “a” dog, not dog”s”), but it will be years. Our life is complicated, and expensive and unpredictable, and a pet just doesn’t fit with our situation right now. But I can’t help but imagine what kind of relationship Charlotte would have with our crew if they were still living with us. But you know what makes me…tired?  Thinking about Charlotte and Izzy pairing up. Those two have the same personality, just in different species! Yikes. So yeah, I think we’re good.

But I still miss them.

Thankful for Good and Perfect Gifts

I really enjoy reading everyone’s daily Thanksgiving posts-it’s really touching to have a glimpse into people’s hearts and lives and to share in their gratitude. I’m not putting the pressure on myself to post every day, but I do have several posts floating in my brain that hopefully I will be able to actually write and share.

Today, I’m thankful for my sweet, spunky Charlotte. I’ve said to several people that if someone ever wants proof that there is a God who knows better what we need than we know ourselves, just look at how our family went from three to four.

The practical, responsible side of me would never have chosen to get pregnant a year and a half ago. No way. I was struggling with managing life as it was, and on top of that, there was (is) the risk of conceiving another sick child.

And there was also the infertility component of our story. I don’t write about it much, because my focus is on our current struggles with Grayson rather than the struggle to get him here, but there was some struggle. And in total opposite fashion, Charlotte seemed to just appear. No planning, no struggle, no preparation. The surprise of a lifetime.

She is truly a gift from God. An adorable, squishy, squirmy, hilarious gift wrapped in a big pink bow (that she now will tear off her head, much to her mother’s chagrin). And God knew that I needed her, and that I need her now. Especially now.

In my heart, I know that if Charlotte wasn’t here, making me laugh, amazing me with what comes so effortlessly to her, and wearing me out with her antics, I would really be struggling. So much of my life right now is uncertain and has been for a very long time. Grayson, while relatively stable medically, is so far from the baby that he was. So much of his ability to connect with anyone has simply vanished. I love him fiercely and completely, but our relationship is frustrating. It’s very difficult to care for a child day after day and get very little feedback from him, sometimes not even a smile. It’s maddening to try and discern what thoughts and feelings are inside him that his body won’t allow him to express, and what is just simply gone.

Charlotte is my joy. I stand back and just watch in amazement. She is definitely hand-made by God because there is no part of her personality that came from her introverted parents! She is wild, loves being in the middle of the action, being the center of attention, and there’s not a shy bone in her little body. Yesterday at the music class family concert, it was pretty chaotic: tons of people, wild preschoolers dancing and shrieking, and lots and lots of noise. Charlotte bounced out of my lap, crawled to the middle of the room, and stayed right in the thick of the mayhem the entire time without looking back. I’m pretty sure my 9 month old self would have been buried in my mom’s lap or crying in the corner. Not this girl. She’s never once cried when I’ve left her anywhere; she’s just happy she gets a new environment to explore and new people to meet!

I don’t know what the future holds for my sweet girl. I rarely cry about Grayson any more, but my eyes tear up when I think about the pain Charlotte will inevitably face in her life surrounding her brother. I know God gave Charlotte the personality and strong will that he did for a specific reason, and I suspect part of that reason will be to fight for and speak for Grayson, as well as to manage the day when he leaves us. She already loves him so much, calling “Bubba, Bubba” when she sees him, and my heart hurts when I think about her having to say goodbye to him one day.

Thank you God for this most precious gift. Before she was given to us, I couldn’t imagine life with her, and now I can’t imagine life without her.

Silly, silly, silly