Today is my birthday. It’s been an okay day, with church this morning and naps this afternoon. The kids are tucked in bed, sound asleep, and I’m sipping red wine and blogging. So I guess I can call today a win.

Friday morning Grayson had a GI appointment. I schlepped down to the Med Center, giant double stroller and two children in tow. The appointment was fine; we have two new medications to try. One we are putting in Grayson’s stomach, to try and reduce the secretions, and then hopefully the vomiting. The problem is most everything we put in the stomach comes right back up. So the plan is for me to suction out what’s in his stomach through a syringe, then give him the medicine. This sounds gross, but it’s a whole lot less gross in a syringe than all over himself coming out through his mouth. For those of you who are confused, Grayson’s feeding button has two ports- a G and a J. The G goes into his stomach and the J to his intestines. Because he vomits so frequently, we put everything (formula and medicines) in the J. Even though we put nothing in his stomach, he still throws up 4-5 times a day the secretions his stomach makes. So…we are trying. So far, he’s kept the medicine down 2/3 times we’ve given it in the G, so I’m optimistic.

Yesterday we all got up early, and Grayson started the day with a bad seizure. It only lasted 4 minutes, but left him in a lot of pain and very out of it. We had plans to go to a local fall festival, and went ahead and went. Grayson slept in the stroller almost the whole time- I think it was good for him to be outside. Charlotte had fun being pushed around and also getting some kisses from her pal Wyatt.

When we got home, Charlotte went down for a 3.5 hour nap (magical!) but Grayson, having slept the morning away after his seizure, was in no mood for a nap. So he and I hung out all afternoon- it’s not often I get one-on-one time with my sweet boy, and we had a good time snuggling, singing and of course jammin’ with Veggie Tales.

Tonight, I read this post I wrote two years ago, and it really upset me. Two years ago this month was really, really rough. I had to come home from vacation early because of Grayson’s vomiting, and the weeks that followed were filled with fear and helplessness. WHY did no one step in sooner? This is my perspective: I have an 8 month old who nurses, then drinks 6-8 ounces from a bottle. She weighs 18 pounds. Grayson was 12 months old, weighed 15 pounds and I was excited when he took 3 ounces from a bottle (which came back up soon after). Clearly, there was a huge problem, and in my opinion intervention should have taken place much sooner than it did. Most likely we wouldn’t be anywhere different than we are today, but I so wish we wouldn’t have had to go through those weeks of absolute helplessness.

I have to post these two pictures of Charlotte, because they just make me laugh. You might be a “medical” family if your baby carries around a syringe as a prized possession, and doesn’t want to let it go even to eat her dinner! She is very interested in Grayson’s feeding equipment, so I give her a syringe to “help” with his meds.

 

Also, Mommy isn’t the only one obsessed with bows!

Hope everyone had a great weekend! There are lots of babies due or already born this week- such an exciting time. So happy for all of you!

We had a good day today filled with beautiful weather, a little shopping, family, and good food.

This morning, Charlotte and I had a play date with her new cousin Theo.

Obligatory posed photo op:


5 weeks and 8.5 months         

Aaaand…we’re done. “Gentle” is not a concept we’ve mastered just yet.

We came home around lunchtime, and Charlotte took a 2 hour nap. We had an hour before we had to pick up Grayson, so Charlotte, my mom and I went to Gymboree to get Grayson some fall/winter clothes, just in case it ever gets below 80 degrees around here. Then after we picked up Grayson from school, we went to Target- always a fun time!

Grammie shared her passion tea- Charlotte is a fan. And apparently she can drink out of a straw- this was news to me!

Showing off his new sweater Grammie bought him today

We got to see Theo again tonight- they came over for taco night- such a treat! Theo is sooooo cute!

So thankful for good days filled with ordinary moments with my sweet family. 

This is the day, this is the day, that the Lord has made, that the Lord has made.
I will rejoice, I will rejoice, and be glad in it, and be glad in it.
This is the day that the Lord has made
I will rejoice and be glad in it
This is the day, this is the day
That the Lord has made

This is one of Grayson’s very favorite songs. He loves when his beloved Veggie Tales sing it, but especially loves when I sing it to him. Whenever I sing to him, I usually start with this song, and his face just lights up.

Grayson lives in the present, and really does rejoice in the simple pleasures of his life: his music, family, and a few favorite toys that he has loved since he was a baby. When I slow down and pay attention, he teaches me a lot about contentment. He’s not burdened by fears about his future or getting access to new drugs. He simply lives day to day, moment to moment- the faith of a child.

After a hard, depressing weekend, I’m trying to focus on TODAY, and not my fears for the future. Today, I put Cheerios in a bowl for Charlotte, and she dumped them on the floor, but then actually snacked on a few. Such a small, normal thing, but for me, it was kind of huge. I’ve never had a baby eat Cheerios before!

I’m thankful today for songs and sweet little people teaching me to find joy in the small things and not to worry about tomorrow.

I try so hard to remain positive about most things in my life, but sometimes things happen that just knock me down and steal my optimism and hope.

We have been trying for over a year to get Grayson on a drug called Epi 743. The drug is still in clinical trials, and until last week, the trial for Leigh’s patients has only been open to kids with a confirmed genetic diagnosis, which Grayson does not have. Last week, we found out that they would be accepting patients with a clinical diagnosis. I immediately contacted the site in Houston and was told they would be in touch, as they already had all of Grayson’s medical records. I received an email on Friday that Grayson has not been accepted. Apparently there are some questions on his MRI (I don’t know what that means exactly) and once they have resolved those questions with radiology, he will be put on a waiting list.

I’m crushed. I really, really believed this was going to be it, that Grayson would finally have access to this drug that has the potential to improve his quality of life and even extend his life. It just makes me crazy that there’s a drug here, in my own city, that could make such a difference for our little boy, and yet, once again, he’s been denied. Denied without a real explanation. I’m trying to remain hopeful, but it’s hard.

Then tonight several friends posted this video about a little girl with Leigh’s who isn’t going to be able to get the drug in another clinical trial (that we also applied for) because of the government shutdown. Yes, there are children’s lives at stake because the government can’t get it together. Rage.

I had a hard day yesterday. I was down because of the email on Friday, and then spent all Saturday morning trying to find a park near our new house that has swings that Grayson can use. There are none, and that just made me even more down. After very long day and much protest at bedtime, I finally got both kids asleep and decided to catch up on some TV. I needed something light and funny, so I chose Big Bang Theory (one of my faves).

A few minutes into the episode there was a scene where two of the female characters are discussing something they are working on and start making jokes about sick and dying people with brain lesions. Which, ha ha, is so funny, unless…oh wait! unless you have a kid who is sick and dying with brain lesions (and who can’t get access to a drug to help him- aaaa!). So much for distracting, mindless TV. And then I remembered another blogger I read writing about how another CBS show was making fun of someone with albinism- and her little boy has albinism. So, I say- shame on you, CBS, shame on you.

Unfortunately, there is lots of negativity and disappointment swirling around in my head right now, and I’m not sure how to get out of this funk. Hopefully a busy, scheduled week and cooler weather will help lift my mood a little!

Saturday night was the Bead Inspired event for Beads of Courage. And inspired we were. Despite heavy rain throughout the evening (at an outdoor event), many, many people came out to support this organization and our family. I didn’t take many pictures personally, but there was a photographer at the event and I will share pictures when I see them!

Grayson, looking so handsome in his bow-tie and cap, proudly displayed his beads on his chair. I said it in my last post, but he did SO WELL the entire night, even giving high fives at the beginning of the event. I’m so, so proud of this guy- my hero.

I had the amazing opportunity to share Grayson’s story at the event, and this truly was one of the most special moments of my life. The video below is my speech; unfortunately, at the end, some of my “thank you s” didn’t get recorded. To read my speech in it’s entirety, click here. Also, as you watch, notice Grayson grabbing his Daddy’s hand- so sweet.

After my speech, bead artist Diane Woodall presented Grayson with unique, handmade beads that she made especially for him. What an awesome gift for our little boy- we will surely treasure them forever.

Grayson was also given this Tiger bead from Team Beads of Courage that has been carried in several marathons, as well as a second Bob and Larry from another bead artist. Such cool additions to his strand of beads!

I was given this beautiful handmade necklace, with stamped charms reading Bead Strong, Inspire, Love Life, and Make Every Moment Matter. It’s easy to say these things, and to say I try to do them every day, but the daily struggle of living with and caring for a sick child is difficult and frustrating at times. However, thanks in part to Beads of Courage, I am committed to being strong for Grayson. I want to inspire other families traveling similar difficult journeys, to remember I have a GREAT life that I love despite the difficulties and heartache. I also want to strive to make each and every moment count, because we don’t know how many we will have with our little boy.

Thank you again to my friends, family, and all those who came Saturday night. Thank you especially to Beads of Courage, and to Christy and Debbie for choosing Grayson and for the incredible amount of work you put in to make this night so special. It is such an honor to be involved in something so much bigger than myself.

Grayson loved his big night, but was definitely ready for bed by the end!

Last night’s Beads of Courage event was incredible. I’ve been replaying the night in my mind all day- all the inspiring conversations I had, the people I met, and the encouraging feedback I got from telling Grayson’s story. Grayson was a rock star the entire night, totally rising to the occasion and being completely charming even as he was out way past his bedtime.

I will do a post on the night complete with pictures,video and my thoughts on the experience sometime this week, but until then, here’s a photo my friend took early in the night. Love.

As September comes to an end, I’m hoping that life will somewhat slow down for awhile and I can catch my breath. My goal for October is to get stuff organized. And by stuff, I mean the piles, and piles, and piles and piles of clothes that are slowly closing in around us threatening to suffocate us in our sleep. It always amazes me that for a person who never has a thing to wear (seriously), I have clothing covering every inch of my bedroom and always have 37 loads of dirty laundry waiting to be washed. Sigh. And then there’s kid clothes- the clothes that have been outgrown, the ones that currently fit, and the boxes and boxes of hand-me-downs from generous friends that are waiting to be worn. Thankfully, I have a newborn nephew and a friend with a baby girl on the way that I can happily pass G and C’s outgrown clothes on to.

So now is the point where as a self proclaimed Open Book, I should show you a picture of the disaster that is our clothing situation. But that would just be too embarrassing.

So instead I’ll show you a picture that made my heart explode with happiness when it was texted to me this morning. This is Grayson, in Sunday School. Three-Year-Old Sunday School, not the baby nursery. Love.

Anyway, back to Organization October. We (knock on wood) close on our new house at the end of the month, and I am determined to simplify, simplify, simplify when we move in. I feel like we need a life makeover in three main areas: stuff (cut the clutter), finances, and food (cooking, smart grocery shopping, etc). Hopefully, I can be disciplined this month to do some planning in these areas- because if I can’t even make a plan, I won’t have much hope in actually carrying one out.

In other oh-so-exciting news, ummm…my daughter is equally amazing, amusing, and freaking me out. As I undressed her for her bath tonight, I counted 3 bruises and 2 scratches on her face- all from today. I know in the world of mobile children this is totally normal, but geez. Charlotte is crawling and pulling up on everything now, and somehow her face is getting banged up in the process. And this afternoon, I leave the room for 2 minutes to take a phone call when I hear hysterical crying from Grayson. I walk in, he’s crying and vomiting, and Charlotte is on top of him, trying to make him feel better by poking him in the eye. Thanks kid.

I don’t have any pictures of her banged up face, but here’s a cute one from before music class on Saturday morning. Oh, the music class where she proceeded to crawl in the lap of all the dads in the room, one by one. She had zero interest in the moms, not even her own. Hmmm.

That’s all I got tonight. We just finished watching the Breaking Bad finale, which is kind of hilarious because this is only the second episode I’ve ever seen, the first one being the series premier. I guess it’s the television equivalent of reading the first chapter of a book then skipping to the last chapter to see how it ends.

OH! With the excitement of Beads of Courage I totally forgot to figure out who won my book giveaway from last week. So I just did the random # generator and my amazing friend Kristi is the winner! I can’t tell you how THRILLED I am that she will be reading this book, because there is no mention of B-12, the methylation cycle, Mito, autism…etc, etc, etc. Kristi spends a huge chunk of her life researching and advocating for families’ health, and she deserves a break and some fun reading material. Yay!

Hope ya’ll had a great weekend!

So, my sister-in-law wrote a book- an actual, published book- and I’m kind of in awe.

Kasey is one of those people to whom things just happen: strange, hilarious, and sometimes embarrassing things. And Kasey is also a natural storyteller.

Crazy, sometimes unbelievable true stories + natural storytelling ability= Hilarious, fun read.

What Lurks at the Bottom of My Panty Drawer: Lesson’s I’ve Learned from Kiddos, Critters and Coochies (yes you read that right) by Kasey Brooks, is a collection of 70 true stories from her life. Written specifically for stressed, overcommitted women, each story is meant to be a quick “happy pill”. The stories are short, funny and each offer a “life lesson” at the end.

My personal favorites in the book are the account of her DISASTROUS first wedding and honeymoon, the story of the prayer request her grandmother voiced regarding Kasey’s upcoming delivery of her daughter, and the chapter titled  Umm…I Think You’ve Seen My Vagina. Intrigued yet? Oh, and I’m indirectly in the book, in a story about some forgotten items from my bachelorette party left in Kasey’s car. And then her car broke down. Oops.

You can order the book on Amazon in paperback or the Kindle version here.  Also, Kasey has a facebook page- head over and Like it here. And I’m giving away an autographed copy of the book- leave a comment on this post or on facebook and like usual, I’ll number the comments and use a random number generator to pick a winner on Friday.

If you are local, Kasey is having a book signing/book reading next Thursday at 6:30 in Houston- details on her facebook page. Bring a friend for a fun evening out- I know Kasey would love for you to join her!

Kasey, I love, LOVE the book, am so proud of your accomplishments, and feel so lucky to have a personal connection to your crazy life!

The stomach bug has being having a party at our house since Thursday, and the party needs to END. NOW.

Thursday morning I noticed Grayson acting a little different right before we left for school. He was kind of fussy and was rubbing his eyes. Then in the car, he fell asleep, something he hasn’t done (on the way to school) in quite a while. Hmmm. I mentioned this to his teacher and told her to call me if she needed to.

I was getting my hair cut later that morning when I got the call. Grayson had been crying all morning and just wasn’t himself. Ok, I’ll come get him. As soon as I saw him, sobbing in his teacher’s arms, I knew we were headed to the ER. My Mommy Instinct was screaming, and just looking at him, I knew he was sick.

Miserable ER selfie

Thankfully, at our hospital, they know when Grayson comes in sick he needs IV fluids started right away. It’s so nice not to have to sit in the waiting room or try to convince skeptical nurses and doctors that my kid is in fact, sick enough to be in the ER. G was admitted several hours later and spent Thursday-Sunday in the hospital. He never ran fever, but was vomiting and was obviously miserable. His Mito doctor ordered an MRI of his brain, and I begged the GI team to change his feeding button while he was under anesthesia; we always have to do button changes as an “emergency” when it comes out, so this time it was nice just to have it done while he was already in the hospital.

Feeling crummy 😦

 We had to cancel G’s birthday party Saturday, but thankfully he was able to come home Sunday night, and spend a few hours of his actual birthday at home. He was super happy about this- sweet boy.

Hospital Bed-Head Birthday Boy so happy to be home

Meanwhile, Charlotte started showing signs of the bug at home. She was throwing up, acting clingy, fussy and just not her happy-go-lucky self. Sweet girl has been taking longer naps than usual (except for today- NONE-oy) and having a hard time going and staying asleep at night. Thank goodness, the vomiting seems to be over and hopefully she’s about back to normal. I think having me away so much at the hospital threw her off and maybe that’s a reason for her fussy/clingy-ness the past few days.

Precious sick girl napping on a walk

Sunday, my mom called me at the hospital because she wasn’t feeling too well. I came home so she could go to bed- another one down.

Sunday night, I was exhausted and disappointed how the weekend turned out, but thankful that at least I wasn’t sick. Uh…not so fast. I woke up Monday morning SICK. I spent the day throwing up and on the couch- awful. Today I’m feeling much better, but Ryan stayed home from work today with the bug, and is still down for the count.

Good grief, this has been a challenging week. Grayson is back at school, and Charlotte and I were able to get out a little bit today. We aren’t pushing it though- we need everyone well for this weekend- Beads of Courage!

Dear Grayson,

Happy Birthday to my precious son, my sweet Grayson Robert!

Grayson, three years ago, you took me by surprise by being born a few weeks early, and since that day, have continued to take me by surprise. Life with you is never boring!

Your life has taught me so many things, but especially to consider what’s truly important, and to just roll with whatever life throws at us.

We were supposed to have a party for you yesterday, a music party with all your friends and family. Unfortunately, you got sick on Thursday and have been in the hospital since then. Fortunately, you are feeling much better now and the doctors expect that we’ll get to go home today.

You don’t know a life without pain, without seizures and vomiting, without needle pokes, tubes, and beeping pumps. But you also don’t know a life without love, hugs and kisses, and thousands and thousands of prayers. Your life is precious, and there never was a more loved and adored little boy.

At THREE, your favorites include: Veggie Tales music (especially VT worship, Bob and Larry Sing the 80’s, and VT Toddler Tunes), swinging, your music table (playing with it upside down), Mommy, Daddy, and Grammie singing to you, and going to school (you love your teachers and music therapy). You weigh 29 pounds and are in size 3T-4T clothes.

You won’t blow out a candle today, have a slice of birthday cake, and you won’t unwrap any of your own presents. But we will celebrate you. We will sing Happy Birthday, hug you tight, and thank God that you are here. Every birthday you are here with us is a gift to all who know and love you.

Happy Birthday to my hero- I love you sweet boy.

Love,
Mommy

Dear Charlotte,

Happy 8 months sweet baby girl! This letter is a day late because your brother is back in the hospital, and I was with him for most of the past two days. I missed you so much, and have been soaking up extra snuggles this morning with you. I’m sorry your schedule and routine have been so disrupted; I can tell it bothers you because you are clingy and fussy- totally unlike your usual happy-go-lucky self. You’ve also been a little under the weather the past few days with some throwing up and congestion. You seem to be on the mend though.

Two thirds through your first year, you weigh 16 pounds, 14 ounces and are continuing to climb in the weight percentile (now 35%). You still love nursing as well as formula, and are continuing to enthusiastically sample any food I give you. You love cheese and yogurt (just like your Uncle Peter!)but will happily munch on things like broccoli, jicama, and pears as well. You wear size 3 diapers and 6-9 month clothes. You still have zero teeth, although you’ve sporadically had all the teething symptoms; who knows, maybe one is getting ready to pop through.

The biggest change in your world right now is you are now mobile! You are crawling everywhere, but you still prefer army crawling over regular crawling on the hard woods and tile. You are a very busy and curious little girl, know what you want and are determined to get to it. You still adore your brother and we’ve really had to watch your curious fingers as you poke them in his eyes and mouth and grab his hair. I know he loves you too and usually looks at you with an expression of half amusement and half annoyance.

You are learning to pull up to standing as well, which is both thrilling and scary to me! Last week I started bathing you in the regular tub, and the second night, you totally pulled up to standing in the tub- yikes!

I love to hear you babble, especially since you have started saying “Ma ma ma ma ma” throughout the day. You are too cute. I can’t wait until “Ma ma ma ma ma” actually means “Mama”.

You started school this month, and your daily report always says you are “Super Happy” and never cry. You also do great in the church nursery on Sundays and Tuesdays. We are also taking two music classes, and you love to bounce to the beats and play the bells and the drums. You hold tight to your bell and never want to put it back in the instrument box!

You are my sunshine and my joy. I love watching you grow and change every day into the most amazing little person. I love you, sweet Charlotte.

Love,
Mommy