Well, on Monday, we finally, finally closed on a house. It’s been almost a year of showings, packing, worrying, signing papers, moving, searching internet listings, contracts falling through, negotiating and waiting.

In the midst of all this, we said goodbye to our four beloved dogs, welcomed our daughter to the family, moved in with my parents, continued to deal with Grayson’s disease and hospitalizations, and struggled with several private issues.

To say it’s been a stressful year is probably a gross understatement.

But we’ve survived, and keep surviving each day, and I’m hopeful that one day soon, our little family will thrive.

Our new home is very different than anything Ryan and I have lived in since we’ve been married. We’ve always lived in the suburbs, in your basic cookie-cutter house. Now, we will be living in a townhouse in the city, in a location that is much closer to the medical center and Grayson’s school, as well as Ryan’s job.

The townhouse is 3 bedroom/3 bath, so both kids will have their own bedroom and bathroom. Grayson’s room is downstairs- one of my requirements because lugging him up and down stairs (as we are doing now at my parents’) is no easy task. There’s no actual yard (minimal yard work- hooray!) but it does have a good size patch of grass/courtyard for Charlotte to play on as well a large patio. There’s a private park and pool down the street that we will have access to, for a yearly fee.

The house is smaller than what we’ve had before, and a ton smaller than the house we are in now, so we are going to have to make a conscious effort to downsize our stuff, get smaller furniture, and in general, simplify our lives. I’m excited about this, and hope it will be freeing to be without so.much.stuff.

Unfortunately, the previous owners, although very nice, left the house a mess. I mean, nasty. And the carpet is gross. Before we do anything, we are having everything deep cleaned, and then we plan to paint every wall in the house. All our stuff is at my parents’ ranch, so Ryan will be making several trips to East Texas to get it all.

We’ve also ordered Grayson a new bed- a safety medical bed. Since Medicaid is paying for the bed, the process of actually getting it is relatively long. Since Charlotte is in Grayson’s original crib and the crib he’s in now belongs to my parents, Grayson is bed-less at the new house until his new bed arrives.

So, we have a lot of work and some more waiting ahead of us before we can actually move in, but I’m actually really looking forward to not being in limbo anymore, settling in, and making this new place our home.

I’ve never been a huge Halloween person- costume parties and trick-or-treating just aren’t my thing. Maybe it’s because I really don’t like candy. On Grayson’s first Halloween, he was only a month old and his costume was way too big, so we didn’t do anything. Two years ago, we had just gotten out of the hospital from a 10 day stay and came home with a feeding tube, so we didn’t do anything. Last year, I was pregnant, and was really struggling with having a child who can’t participate in traditional holiday activities, so again, we didn’t do anything.

It’s been really hard for me to embrace the excitement of this time of year- there are so many fun activities for kids- well, for kids who can walk, kids who can eat, and kids who can express their opinion about what they want to dress up as for Halloween. To say the least, it can be a little depressing when your kid can’t even sit up to have his picture taken with a pumpkin, much less go door to door asking for candy. The last few weeks, when anyone brought up Halloween, I’ve been mostly meh about the whole thing.

Then my mother in law made the kids’ costumes, and well, swoon. Halloween, I think I now dislike you a little less. Are these not the most precious duck and giraffe that you ever did see?

Yes, that is a syringe in C’s hand/mouth. And G, well obviously is VERY into this whole costume thing

Yep.

Poor G is lucky he still has a face

Hey look! My kid! Participating in a kid activity!

Sweet cousins on the train

Over. It. (I promise he does still smile, just not when dressed as a giraffe, evidently)

So yeah, Halloween isn’t that bad.

Come Thursday, we still probably won’t do anything. My babies will be in bed asleep before trick-or-treating really gets going. But this year I will see picture after picture of adorable kids in their costumes and not feel as much sadness, and for that, I am grateful.

Happy Halloween!

The title of this post is referring to actual pumpkins, not the three munchkins pictured below, lest there was any confusion. Continue reading.

Yesterday, my sister in law Hannah and I had grand plans to take pumpkin pictures with the kids- a picturesque autumn memory we would treasure for years to come. I had heard there was a patch at a church close to their house, so we drove over there…no pumpkins in sight.

After a major meltdown (why do these things never work out for me?) we saw a sign directing us to another patch a few miles away. It was a fall festival/craft fair type thing that closed at 4:00 (it was now after 4:00) but we figured we could still crash the patch and take a few pictures.

We walk in, and see…3 pumpkins. Three. And not pretty pumpkins. Rotten pumpkins with holes in them. The woman running the festival was very apologetic- this patch has been an annual event for 20 years, and she ordered 15,000 POUNDS of pumpkins. But they sold out by 2:00. And these three rotten pumpkins were all that was left for our pumpkin patch picture taking. Sigh.

But alas, we made do. And if I do say so myself, we got some cute shots of our little pumpkins- definitely the cutest pumpkins in the patch.

I could not love these cousins more

The best sibling shot we got. Charlotte did not like the way the hay felt on her legs, which made her stay put. Score!

Handsome dude. He loves being outside

Theo: Mr. Serious(ly cute)

The beautiful people. Can you believe that girl had a baby 7 weeks ago?

We are so glad Daddy met us from work- we have so few family pics!

Dear Charlotte,

9 Months:  as they say, you’ve now been out as long as you were in! I was looking back at your newborn pictures yesterday, wondering where that sleepy, still baby went. Because you, my dear, are anything but still. You are constantly on the go, moving from one interesting thing to the next.

You are full-on crawling everywhere, as well as pulling up on anything and everything you can. You completely embrace the rule that the shortest distance between two points is a straight line;  no matter what is in your way in getting to where you want to go, you will go over it or crash through it rather than go around it. Your face usually has at least one bruise or scratch from your escapades, but when you hurt yourself, you fuss for a bit, get a hug and kiss from whoever is around, and move right along with your adventures.

According to the scale at the doctor, you weigh 17.5 pounds (28%)- I’m going to have to weigh you again on our scale because I thought you were closer to 18. You are 28.5 in tall (83%). You wear size 3 diapers and size 6-9 month clothes. You still nurse 4-5 times a day/night and drink 6-8 oz bottles as well. Until two nights ago, you were sleeping 10-12 hour stretches at night, but the last few nights you’ve been up, wanting to eat and cuddle, in the middle of the night. I really hope this isn’t going to become a habit! You still have zero teeth, but that isn’t stopping you from eating. Just like me, you love your carbs- you love any kind of bread, cereal, etc. I don’t blame you one bit- we just need to make sure you eat your vegetables too!

You love all your little activities we do during the week- music class, church, and mothers-day-out. You never even glance back at me when I drop you off, but when I pick you up, I’m always greeted with a huge grin and squeal of excitement- I love it.

Charlotte, you amaze me every day with your sweet, sassy developing personality. I absolutely adore spending every day with you and watching you grow. I love you to the moon and back!

Love,
Mommy

I took Charlotte to the pediatrician for her 9 month well-check this morning. She will be 9 months old on Sunday- what? How is she already this close to being ONE, and finished with her babyhood?

It’s so refreshing to take her to the doctor, let her crawl around the exam room while waiting, and not have an ounce of anxiety about the appointment. Charlotte is perfectly, wonderfully, amazingly HEALTHY. She meets every milestone right on time, eats well, and babbles constantly. She’s never had an antibiotic or even a dose of Motrin.

I don’t write all this to brag, but just to contrast it with the experience of her big brother. ALL of Grayson’s many doctors appointments give me varying amounts of anxiety. I hate having to list the six medications and five supplements he takes every day (most of them 2-3 times a day). I hate having to explain every.single.time. that Grayson can’t stand on a scale to be weighed. And a lot of times it’s hard to have a focused conversation with a doctor with a squirmy, stiff, whiny 3 year old on my lap.

Grayson has had a tough week so far. Since his seizure on Saturday, he’s had two more, one at bedtime last night and one at school this morning. I picked him up early from school today because after his seizure, he fell sound asleep and was sleeping the day away.

When I sit and think about the comparison of my children’s health, it’s so hard not to get a little panicky about Grayson. When I’m totally focused on him, he’s just Grayson, and how he is is “normal” to me. His weird neurological ticks, his constant drool and the way his arms and legs move stiffly and unnaturally- that’s just Grayson. But then I contrast him with Charlotte, and how easily and effortlessly she moves, and learns new things. How she’s already mimicking words, and turns when she hears her name. She’s light years ahead of her brother in development. It’s frightening to face that truth, which I often subconsciously ignore, even though it’s right there, playing out in our living room every single day.

Grayson isn’t a baby anymore, and it’s becoming more and more noticeable that he isn’t a typical kid. When he was a baby, he looked like a baby. Most people had no idea anything was wrong with him. Now, his wheelchair, his awkward movements, his feeding tube, and the fact that he doesn’t respond to people talking to him totally give away that he’s special needs. Which is fine. I’m not embarrassed or ashamed of him one bit, there’s just a part of me (probably a big part) that’s heartbroken that Grayson isn’t getting better, and that his differences are just becoming more and more obvious and pronounced.

It kills me to watch my little boy struggle so much and miss out on so much of life. Mercifully, he doesn’t know what he’s missing though, and is surrounded by people who love him and do our best to make his life good.

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!