Yesterday we celebrated Grayson with family and friends! I did a pretty good job of sticking to my goal of making his party sweet and simple. I did, however, get my craft-on and made several fun little things for the party.

Dear Grayson,

Happy Birthday to YOU!

Last September 22, I never would have imagined what a year we would have. It’s been a year of joy, of precious, tender moments as well as silly, goofy ones. I love being silly with you and watching your face light up with a smile and listening to your belly laugh. I love cuddling with you as you lay your head on my shoulder with your thumb in your mouth. I love watching you each day become more curious and inquisitive with the world and I love helping you learn new things. I love you. Exactly the way you are.

Yes, it’s been a year of joy, but also one of uncertainty. You’ve been through more than your fair share of tests and doctors’ visits this year, and there are still so many unknowns. I wouldn’t change a thing though. This year, and YOU, have taught me to trust my instincts and to ask questions, to press for answers. I think being your mom has made me tougher in a lot of ways, but softer and kinder in some ways too. I look at the world, and people, differently because of you. I’ve learned to give myself a break; that’s it’s ok that I’m not the “perfect” mom- I’m just Grayson’s mom and I’ll take that over perfection any day. You are your Daddy’s and my child, but more importantly, God’s child. He has cared for you perfectly for 365 days and I know will continue to guide your precious little life.

I can’t believe we are already celebrating your first year- it happened in the blink of an eye. There are moments I just want to freeze time, to keep you my tiny baby forever. But then you learn a new skill, (finally) try a new food, or learn to make a ridiculously adorable new funny face, and I want you to keep growing and changing.

I love you so much my sweet little man. I can’t wait to celebrate you at your party on Saturday. (And I really hope we get some awesome cake smashin’ pictures too!)

Happy Birthday!

Love,
Mommy

That’s right, you’re 1!

–Thanks so much to my dear friend Erin for taking and editing these pictures–

Happy Monday! I am writing this blog post then I am getting in bed and checking out the first night of the new TV season. I have had a sore throat for 10 days and FINALLY got an antibiotic today. I just can’t take this stabbing pain in my throat any longer- and I’d like to be able to swallow comfortably again.

Ryan and I went to College Station on Saturday for the A&M game- we had fun. He went for the football, but I went for this:

This is my very favorite burger in all the land, people. My mouth is watering again just looking at it. And if you look close, you can see the order of fried pickles that we devoured too. Healthy eating at it’s finest. Ah, Chicken Oil Company, I love thee.

The game was fun- we stayed until the middle of the 3rd quarter, then left to beat the crowds. It was the first game after 9/11, and I was reminded that 10 years ago, Ryan and I were also at the first A&M game after 9/11 (although not together-we hadn’t met yet) when Kyle Field looked like this:

I don’t exactly bleed marroon, as they say, but this picture always makes me proud to be an Aggie. I still have my shirt from that day:

Notice the date? I just happened to notice it the other day- September 22, 2001. G-Man’s birthday! I think that is very cool.

Speaking of G-Man’s birthday, it’s on THURSDAY. I can hardly believe our little dude has been with us for a year. Today his OT (who works with us on eating) came to the house- I made G a little “meal” of chicken (chopped in the food processor), mashed potatoes, baby food peas, and hummus. He ate all the different foods and actually swallowed  all his bites! It was seriously the best he’s ever done with eating! I cannot tell you how good it feels when you have a kid who struggles with eating actually eat (and enjoy eating) his food. A perfect end to the day!

And just because this is cute, and hilarious, here’s a video of the munchkin yesterday at his Grammie’s house. He is such a goof!

He is just the BEST. EVER. And he’s going to be ONE.

 I just made a little girl cry. A sweet, blonde-headed, pigtailed girl trying to sell Christmas wrapping paper and candles to her evil, mean tired neighbor.

The kids have been ringing my doorbell all afternoon. 4 neurotic dogs, a cranky baby, tired momma, and school fundraiser doorbell rings at 5 pm just don’t mix. So after I put G to bed at 5:45, I taped this sign to  the door.

10 minutes later…DING.DONG. Bark, bark, bark, bark, waaaa, waaaaa. SERIOUSLY?!?

I sprint to the door to find aformentioned sweet pigtailed girl standing on the other side of the glass holding her fundraiser order form. I knock on the glass and angrily point at my sign. I get this look:

So I opened the door and let her have it. I did- I yelled at a kid. After my rant I said “And that is why I put the sign up!”

All she said was, ” I…I…I didn’t read it.” Well, obviously.

So I’m sure I made her cry and she’s probably told all the neighborhood kids how mean and wicked I am and now they’ll be rumors that I kidnap kids and keep them prisoner in the basement (and it won’t even matter that we don’t have basements in Texas; they’ll all believe it anyway).

And I should feel awful. But I don’t. If you are old enough to sell cheap crap to your neighbors, you should be responsible enough to read signs taped to their doors.

The End.

Is there anything cuter than a baby in pajamas? I don’t think so.

Waiting patiently for breakfast

Good morning world!

Bright lights, bright lights!

Bedtime story, please

Which jammies should I wear tonight?

This afternoon, we had Grayson’s hearing checked. The good news: it was 100% covered by insurance. The bad news: it was right smack in the middle of naptime and G was not happy about that. The doctor did two tests, both testing his response to sound (obviously). I didn’t think to tell her at first that he has vision impairment and part of the first test was seeing if he would look at noise-making toys like a barking dog. He didn’t. This is what I observe all the time at home- he has trouble connecting an object or person making a sound with turning toward the sound and focusing on it. I think this is because he can’t see it. However, when he hears a song he likes, or hears my voice saying his name, he smiles. The doctor quickly moved on from the first test because G wasn’t responding to any of the sounds.

The second test was a computerized test- she put earbuds in one ear at a time which made beeps (I think) and registered his response on a computer. We kept getting interrupted by G crying- poor baby, he just wanted to lay down and sleep. I did get him to drink a bottle (which he later threw up all over me and the office floor- sigh), but the slurping sounds he was making and the crying gave somewhat inconclusive results.

So technically, I guess he “failed” his hearing test, but the doctor said she doubts he has a true auditory impairment. However, she does want to do a more accurate test just to make sure. If we start speech therapy with Grayson and he has a hearing problem, it won’t do any good. So we will do this other test just to cover all possibilities. The only bad thing about this other test is Grayson will have to be sedated. I’m sure it will be the same drill as when he had his MRI- no food or drink for an ungodly number of hours (for a baby) before the test and only Pedialyte after. Lovely. The doctor gave us a 3 week time frame to get the test ordered and scheduled.

Looking forward to next week- no doctors appointments scheduled, and somebody has a big birthday next Thursday!

So after the craziness of the last two days, I prayed last night that today would be uneventful, fun, and illness free. Grayson slept 13 hours straight and woke up babbling to himself in the crib and greeted me with his precious grin. And the best part- his eyes were clear!

Thinking we were over his illness, I changed his diaper and put him on the floor to play while I made his bottle. After his bottle, I thought he needed a (dirty) diaper change, so I laid him on the floor and took it off. It wasn’t dirty, but it smelled SO BAD, and it was soaked (after only 10 or 15 minutes wearing this particular diaper). After consulting several friends, I called the doctor, feeling kind of silly saying that my baby’s pee stunk. Anyway, they wanted us to bring him in just to be safe, so I scheduled our third doctors appointment of the week (and this is a short week!) after physical therapy.I happened to have a urine collection bag from the hospital (yes, I am now that person who has random medical supplies) so I strapped it on him and got us a sample.

After PT, we went outside, preparing to schlep over to the doctor, when I noticed one of my tires was almost flat. Oh.Come.ON! Thankfully, I don’t think there’s a leak (hopefully? wishful thinking?) and I aired it up at the gas station on the way.

They tested our sample and it came back that there is possibly an infection. However, since collecting in a urine bag isn’t sterile, they wanted to make sure and not give Grayson unnecessary antibiotics. So guess what that meant? Yep, a catheter. Oh. Come. On!

Grayson was a trooper for the cath, but screamed his little head off (wouldn’t you?). I was having flashbacks of newborn Grayson and the catheters that resulted in zero urine because he was so dehydrated. They hope they collected enough for the two tests they wanted to run- one is a culture they will send to a lab and we should hear results in a few days, and one was supposed to show results today. I haven’t heard any news since we left though.

So needless to say, this day wasn’t the relaxing, fun day I had hoped it would be. Whoever is sticking needles in a voodoo doll that looks like me, STOP IT!

We did have a good therapy session this morning, though. This is Grayson’s newest contraption- a stander. He loves it! I think he feels really secure and loves being able to stand and play with his toys!

Yes, I know that’s a really boring, stupid title. But my brain is way too tired to be creative tonight.

It has been a crazy 2 days to say the least. I’m almost too tired to even write any of this, but writing is how I deal with things and I know I will feel better when I finish this post.

A few days ago, the neurologist’s office called; some of the blood work results came in. There were two things that were elevated: lactate and pyruvate. Doctor wants follow up.

I became a Google Monster over the weekend, something I have been very careful to avoid doing in months and months. Anyway, I don’t know what search term or website led me to sites about Cerebral Palsy, but there I landed. I think I looked at all 257,235 websites about CP and became convinced that’s what Grayson has. The description of CP fits him to a tee. I even found one article that said a red flag of CP is when a baby rolls over very early, and the parents are mistakenly proud and think their child is an overachiever. Grayson rolled over when he was 3 weeks old (and yes, I posted the video on Facebook).

Tuesday, I started Bible study for the year and Grayson went to the nursery to hang with his best buds Larkin and John. I was thrilled because I was thinking G would be “left behind” in the baby room while Larkin moved up to the crawler/walker room (they are 6 days apart, John is a few months younger), but all 3 boys were in the same class. After our session, we were talking and the subject came up that Grayson really never gets sick. It’s true, despite all his developmental issues, he is generally pretty healthy. Um, yeah, NEVER talk about how your kid never gets sick unless you want them to get sick. I picked Grayson up at noon and noticed his swollen, red, green-goopy eyes.

Took him into the pediatrician- viral eye infection. Today- much worse. My sweet baby boy just feels crummy. His eyes are oozing and red, and he’s been crying pretty much nonstop all.day.long. And we had our neurology follow up this afternoon.

Thank goodness my sister Rebecca is in town and agreed to hold my screaming baby occupy Grayson while I talked to the doctor. It was a very, very good discussion. Things we discussed (bullet-pointed, as usual)

• We may need to look into a feeding specialist/doctor since Grayson is not swallowing his solid food (have I mentioned this? Oh my goodness, it’s driving me nutty. He stores all his non-pureed, chunky food at the roof of his mouth but won’t swallow it).

• He drew diagrams of the Kreb cycle (I told him if he was going to teach me biology to make it the junior high 7th grade life science version) and explained that something is moving too slow and the lactate and pyruvate are building up.

• The lactate and pyruvate being high are not dangerous in and of itself but indicates a mitochondrial/metabolic/genetic disorder.

• We need to keep retesting his blood (boo!) to establish a pattern.

• The genetics appointment in November is key- we will hopefully get a lot of information and some more missing pieces to the puzzle.

• I asked him if he thinks Grayson has a disease with a name. Answer: yes, we will probably find that he has something. But it will probably take years. My friend Traci said when we do find the answer we should sell G’s story to Mystery Diagnosis. Our luck by the time we get a diagnosis, that show will be cancelled!

• I asked him- Grayson doesn’t have Cerebral Palsy does he? The answer- yes and no. He said CP is an outdated, old term describing a lot of disorders of movement, tone, neurology, reflexes, etc. He said it’s more of a descriptive term than an actual disease. He said it’s most useful for coding things for insurance- if Grayson ever needs physical therapy and needs a diagnosis for insurance to pay for it, he will code him as CP. So we can say he has CP, but it’s not a deep enough answer- we need to keep digging for the “why” not just a description of symptoms.

I’m glad I went in today. I always feel better when I have information and answers- I do not like not knowing. We have another appointment with him in October- over Skype. Technology is everywhere!

Now I just hope sweet G-Man feels better by tomorrow- we have PT in the morning and fun plans the rest of the day!

• So what if I lost count of how many diet cokes I drank today.

• So what if I really had to stop and think if it was really Wednesday before I wrote this post.

• So what if I really like the color burnt orange…and I’m an Aggie. (Waiting for lightening to strike me dead….)

• So what if I was listening to the Laurie Berkner Band CD in the car today…by myself.

• So what if I changed Grayson’s diaper on a bathroom floor today (you can pick your jaw off the floor now, people. It was a very clean office building, not a gas station- and there wasn’t one of those Koala Bear changing tables. What was I supposed to do?!)

• So what if I’m really excited about the next hour of my life when I finish this post- snuggling in bed and starting Dexter Season 5 with Ryan.

• So what if I gave Dexter Season 5 to Ryan for our anniversary this year (and Season 4 last year). Nothing says Eternal Love like America’s favorite serial killer.

• So what if holding newborn baby Landon made me miss newborn baby Grayson.

• So what if I’m happy/relieved that holding that baby did not give me the baby itch like I thought it would. The G-Man is enough for me (for now).