August is about to come to an end, and knock on wood, if we make it through the next two days, Grayson will have made it two months in a row without being hospitalized! I am so, so thankful that he is so stable right now. In the back of my mind, the fear that he could suddenly become very sick is always there, but I’m choosing to focus on how well he’s doing today.

September is going to be a BIG month for our little family. We have a lot of fun events planned and special things happening and I’m praying everyone can stay healthy so we can enjoy all of it!

Any day now, we’ll have a new member in our family! Grayson and Charlotte will have a new baby boy cousin to get into mischief with- my brother David and sister in law Hannah’s firstborn. We simply cannot WAIT to meet Baby Theo! (He’s actually due TODAY, but is choosing to be fashionably late to the party).

This coming week, I start Bible study at church, and Charlotte will go to the childcare class at the church. Then later in the week, she starts Mothers Day Out. She’s going 1 day a week and I hope she will love it. She loves everyone and is so social, so I’m not worried at all. She and I are also doing MOPS and I’ve got her signed up for two music classes this fall- Charlotte’s social calendar is FULL. She’s probably the most over-scheduled 7 month old in town with activities planned 6 days per week. Yikes!

One weekend is September I’m doing a retreat for Mito family members and caregivers. I will get to sleep AT A HOTEL! WITHOUT KIDS!  I am ridiculously excited about this. And my Mito Mom friends are some of the most fun and inspiring people to be around, so I’m really looking forward to the weekend.

The next weekend is pretty special too. This little dude is turning THREE! Can you even believe it?

I am planning a music themed birthday party for Grayson. We are having a professional music teacher come and lead songs and have the kids play instruments. We are currently in birthday party prep mode, but not how you might think. The invitations, food, favors…that’s the easy part. The hard part: getting Grayson comfortable with the music that will be played. He really is not keen on any music that he doesn’t know, and hates most songs that aren’t Veggie Tales. We have a CD of the songs this teacher does and I am playing it a little at a time. My goal by party day is for him to love tolerate the music enough so he doesn’t have an epic meltdown in front of all our friends. We shall see!

After all the birthday and party hullabaloo, the very next weekend is Beads of Courage! We received Grayson’s beads in the mail a few weeks ago- they are gorgeous! I am planning a post soon to show them off and explain what they all stand for. If you haven’t gotten your tickets yet and would like to attend, here is the link. We can’t wait!

So many great things to look forward to in the coming weeks- I’m definitely counting my blessings tonight.

Yesterday, we had the opportunity to go an Astros game with other families in Houston affected by Mitochondrial Disease. One of Ryan’s dreams is to take his son to a major league baseball game, so I jumped at the chance for us to go. Honestly, I was nervous. Grayson usually does not do well at all out of his comfort zone, the game was during naptime, and I was worried that the noise of the stadium would be too much for him.

Family pic before the game started

He did great! We took him in his medical stroller (wheelchair) and he was definitely more comfortable than had we brought him in a regular stroller. Of course, we had Veggie Tales playing on his ipad the whole time, which kept him calm and happy. We had wheelchair seats with plenty of room and all-you-can-eat at the concession stand! We made it to the 6th inning before he got overstimulated and fussy, which was about 5.5 more innings than I thought we would last!

Grayson and Daddy (G looks like such a little boy in this picture)

I’m so glad we decided to go to the game as a family. I have such great childhood memories of seeing the Astros play, and it was fun to take my own children to a game (even though handling both of them took up every second we were there, and I probably saw a total of 5 minutes of baseball).

Charlotte had a great time being Miss Social

I am so proud of Grayson- he impressed me!

NOT impressed with the Astros 🙂

Daddy and Charlotte

• So what if I use my daughter as my alarm clock on the days we have our night nurse for Grayson, and she decided to sleep in this morning, so I waaaay overslept
• So what if I had nothing organized and ready for this morning when I woke up less than an hour before we had to leave
• So what if I didn’t go on Pinterest one time or do any crafty back to school thing. Not one.
• So what if my kid didn’t get a haircut or any new clothes for the start of the school year. He’s still pretty darn cute!
• So what if I have to sing goofy songs to get him to smile- and even then, if he knows I’m taking a picture, I obviously don’t get the most enthusiastic of smiles.

• So what if I was super happy to drop him off at school this morning (only 8 minutes late!)- seriously, mostly happy for him because he loves it, but happy for me too.
• So what if I drove through Chick Fil A for breakfast. And again for lunch. And my husband is at the grocery store now, most likely picking up chicken for dinner
• So what if Charlotte didn’t get a nap today because we were at my brother and SIL’s house this morning and my friend’s house this afternoon.
• So what if that means she is so tired that she will probably sleep in again tomorrow
• So what if I know that but probably still won’t set an alarm, and thus will be frazzled and rushed in the morning again.
• So what if I think this is the sweetest little back-to-schooler ever (after a great first day with his sweet teacher Miss Kristina) 

Dear Charlotte,

I have a confession. I don’t want to write you this letter. I don’t want to write it because it means you aren’t 6 months anymore. And if I’ve realized anything the last 30 or so days it’s that I ADORE the age of 6 months. True story: We were stopped at a light on Saturday, just you and me in the car. I looked in the mirror and saw you with one hand on each foot, babbling to yourself, and I started to cry. You are absolute perfection right now- the perfect blend of sweetness, spunk, and curiosity. I want to freeze time.

I looked back on Grayson’s 7 month post, and it seems I had similar emotions when he was no longer 6 months. And in the same way I did with him, I rocked you a few extra minutes last night, your last time to drift off to sleep as a 6 month old.

If there’s a phrase I would use to describe you right now it’s enthusiastic participant. You are up for anything, and dive into each and every new experience with wonder and excitement. Music class? Sign me up! Shopping with Mommy while sitting up in a cart? Oooh,Yes! Tasting watermelon for the first time? Is there anything more delicious and perfect to bite into, with juice running down my chin? I just love watching you experience all these things for the first time. I love how you love life.

I just weighed you, and…holy growth spurt! You are 15 pounds 12 ounces, which puts you in the 28th percentile! It’s hard to believe just a few short months ago I was worried because you had fallen to the 3rd. You are in 6 month clothes and size 2 diapers. You love all your toys, especially your stacking cups, Sophie the Giraffe, Grayson’s music table, and your dolly Piper. This week, we are taking your baby swing over to Aunt Hannah and Uncle David’s house; your cousin Theo is going to be born any day now and he needs that swing more than you do (more tears…and just like that, you don’t spend any time in a baby swing).

You nurse 5-6 times/day and drink about four 6 ounce bottles. You also eat 2-3 “meals” of solid food a day. Every day, you get more adept at picking food off your tray and manipulating it in your mouth. I’ve given you all sorts of foods to try and once again, you are gung ho and enthusiastic with everything. I’m become somewhat obsessed with taking pictures of you eating; in my opinion there’s just not much cuter than a baby covered in food!

Your big accomplishment this past month was of course learning to SIT! It’s amazing how much more independent and content you are to play with your toys with that skill. You also are now officially mobile- while not crawling just yet (you are thisclose), you scoot, and pivot and sometimes move your body to where you want to go with what seems like sheer willpower. I know babyproofing will be on the agenda for the next few weeks.

Oh my sweet, spunky girl. I may be sad to bid farewell to 6 months, but I can’t wait to see what month 7 has in store. I love you to the moon and back.

Love,
Mommy

This post is written for PAILs monthly theme post, Feeding Your Child.

I spend a lot of time thinking about feeding my babies. Infant feeding is complicated, and yet, it’s not. We make it complicated because there’s so much emotion behind it, and so much judgment if we go looking for it. It’s been said so many, many times, but every baby is different, and every family’s situation is different. I know I did the best, and am doing the best that I can with the circumstances that I have to live with.

With Grayson, nothing would have allowed us a successful breastfeeding relationship. No amount of “just try harder”, supplements, pumping, or practice would have worked. Formula saved him, and continues to keep him alive.

For most, eating is a social practice. There’s emotion tied to food, and sharing meals is a way to bond with family and friends. For Grayson, this isn’t the case. There is no purpose for his food other than supplying the nutrients his body needs to keep working. He’s tethered to a pump 24 hours a day, his formula pumped into his intestines so when he vomits every day he doesn’t lose any calories or nutrients. Feeding Grayson used to be so emotional and painful, but now, it’s just a routine with about as much emotion as changing his diaper.

Feeding Charlotte has, obviously, been a completely different journey. From the moment I learned of her existence, I hoped her early feeding days would be different. I wanted so badly for breastfeeding to work, but I promised myself that my emotional well being and her health would not be put second to making it happen. Thankfully, it did work. I exclusively breastfed her for over 4 months, which I am proud of. It wasn’t easy, but we did it.

Then her weight percentile began to drop- from 19th, to 13th, to 5th, and then 3rd. She wasn’t getting enough to eat. I didn’t respond well to the pump, and hated pumping anyway (remember, emotional well being), so supplementing with formula was the most practical solution for us.

At first, giving Charlotte formula in addition to nursing her was really disappointing. I felt like (compared to feeding Grayson) breastfeeding was going so well, and suddenly, it just wasn’t. But I had to remind myself that feeding this baby isn’t about me, it’s about giving her what she needs to thrive.

Now, I truly feel like we have the best of both worlds. I still breastfeed Charlotte 5-6 times a day, as well as give her as much formula as she wants. I love nursing and yes it has been one (but certainly not the only) way I have bonded with my little girl. But I love bottles too. It’s reassuring knowing exactly how many ounces she drinks when she takes one. I love that I can lay her on the floor in the morning with a bottle while I tend to Grayson’s needs and she can feed herself. This is the first time I’ve had a baby be able to do anything for him/herself! And to be honest, I do prefer to bottle feed in public rather than breastfeed. Her weight percentile is back up to the 17th, and she has the cutest little chunky thighs. Formula is our friend.

I have no idea how long I will nurse Charlotte; that is going to be up to her. I’m done making goals and plans for her based on what I want rather than what she needs. So for now, at least today, we continue.

Breast, bottle, tube, or combination- what matters is the baby is fed. Period.

Grayson’s school is closed right now and his first day of the new school year is next Wednesday. To be honest, when I realized we would have 19 days with no school, I was seriously panicking inside. It of course could go without saying that I adore my children, but I was freaking out over the thought of 19 long days home with both of them, with hour after hour trapped in the house listening to Veggie Tales, not being able to leave because it’s 1 billion degrees outside and because I have a mental block against going anywhere with both my children by myself.

But I’ve actually been pleasantly surprised how well it’s gone. We are 12 days in and I haven’t lost my mind yet. This, my friends, I’m counting as a big win.

I was thinking of all the reasons why these days have gone as well (and as quickly) as they have. Here’s what I came up with:

• Morning walks. Most mornings I’ve been loading both kids in the stroller and we’ve walked around the neighborhood for 45 minutes to an hour before it gets too hot. I get exercise, and the kids take their morning nap. Double win!

• NAPS! Mercifully, both G and C have been napping really well lately. Even just an hour of silence and alone time in the afternoon helps break up the day and make it not seem so long.

Love when BOTH of these are on at the same time!

• Short outings. This week, we went to a friend’s house for a play date on Monday, and to the mall for a quick lunch with a friend today. So, apparently I’m over myself and CAN take the kids out. I’m not saying it’s easy, but it’s doable.

At the mall, eating fries on the table. Yep.

Taking a picture of a bunch of kids is definitely like trying to herd cats

• Family. Of course, my mom is always a huge help when she’s home, and the kids adore her. And my sister in law and her girls came over for the afternoon yesterday and were awesome with the kids- Grayson LOVES his cousin Bryn and cousin Megan put Charlotte down for a 2 1/2 hour nap. Yay for cousins!

Relaxing with Bryn

• Veggie Tales. You know I have a love/hate relationship with those stupid vegetables. What can I say, they’re better than my kid being on crack right? Because we are dealing with a full-fledged addiction. But seriously, they keep Grayson calm and happy, and calm and happy is what we need. We tried out a family music class on Saturday. The class was precious- fun music, instruments, and a bunch of babies and toddlers. Charlotte loved it. Grayson cried huge crocodile tears the entire time, until our nurse finally took him in the lobby and turned on his Veggies. Then he was fine. Sigh.
• Food. We kind of dove into Baby Led Weaning this week, and I love it! It’s so exciting to watch Charlotte pick up and try different foods- so far her favorites are cantaloupe and Chick Fil A french fries. I am doing a little bit of spoon feeding too (she loves yogurt), but she really does prefer to feed herself. Anyway, this has been an exciting week and feeding is another “activity” that takes up chunks of time.

Um, I wouldn’t mess with this girl and her carrot.  Or her spaghetti

• Nights out. I’ve had several dinners with friends and tonight my Mito moms group is meeting- it’s nice to get out of the house and be able to eat with both hands free!

One of the biggest blessings of this little school break really has been getting to spend a lot of time with Grayson. Medically, he’s stable right now and I have been soaking up all the sweet cuddles I can get. He’s also still singing and trying to verbalize things A LOT which is so exciting. While I will be thrilled when school starts again next week, I know I’m going to miss having my little dude around so much too. Love these babies and making memories with them.

Hanging out together in the church nursery

We still have another week of this break- stay tuned to see if I still have my sanity in another 7 days!

Today is my awesome little brother Peter’s 30th birthday! Peter is funny, smart, and lives too far away. Since we can’t see him today to wish him a happy birthday in person, we made him a little video this morning. Happy Birthday Peter- we love you, miss you, and hope you have a fantastic day!

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!