Birthday Weekend

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!

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8 thoughts on “Birthday Weekend

  1. Oh my, I think C got cuter in each picture!!!! Love her holding big brothers hand and looking so proud of herself! Carrying a syringe around, too funny! And love her playing in her bows! Glad you had an ok weekend with time with each kiddo and fun at the festival! Happy happy birthday to you!!!!

  2. Ugh, I'm so sorry you had to go through so many months of helplessness with Grayson. I can't imagine feeling like that.

    FWIW – Stella NEVER ate more than 3-4oz from a bottle at a time the entire first year of her life that she drank from bottles, so that in itself might not have been a red flag to a provider (though it coming back up after 3 oz is definitely concerning).

    Happy belated birthday!

  3. Happy birthday!

    N plays with emesis basins. I have pictures. And then I realize later that … huh, that's not normal. We shell out for our own syringes (because HELLO craptastic DME syringes that break daily – so we buy our own that last months-years), so I don't let the kids play with them.

    I get what you mean about “they should have seen it sooner”. It haunts me. NINE months my boy had fluid building in his brain and .. who knows where we'd be if they had found it sooner. (I console myself with the flip side – who knows where we'd be if I hadn't demanded they go looking that day!) It sucks, because we can't go back and change it. All we can do is keep moving forward.

    I hope the new med works for Grayson. I am completely non-disgusted, but it takes a lot 🙂

  4. Happy Belated Birthday!

    I've been following your blog for a few weeks now. I have a son that was recently diagnosed with Intellectual Disability, he's turning 2 on October 24. I think you are a very strong woman and mother and I hoping that I can do/be as good of one to my special needs boy.

    Lots of hugs to you and your beautiful family!

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