Down syndrome

A day at Seattle Childrens Hospital.

So, did you ever see the movie “The Jerk”? Of course you didn’t. Because it’s rated R. Or maybe you’re like me and saw it on TV. Lets go with that. Anyways, they get fabulously rich and then lose all of their money and there’s a line in it where the woman says, “I don’t care about losing all the money. It’s losing all the stuff.” That’s kind of the way I felt. I can TOTALLY handle Abby having Down syndrome. I just can’t handle her being sick, being sad, anything being hard on her, endless amounts of therapy, etc. See? I’m ALL over this.

Abby sucks at breathing. She always has. But she also comes from a long line of crappy breathers. Dad has asthma. Grandpa has asthma. So we figured she had asthma, too. Except they don’t diagnose asthma in babies. They call it “Respiratory Disease” which, of course, just makes it sound all that more serious. She gets sick a lot and her breathing gets worse. We’ve done albuterol, steroids, antibiotics etc and nothing has helped. So they sent us over to Seattle Childrens to meet an otolargygngonglgogogyist. Seattle Children’s is an AWESOME hour and a half drive away into the U District. I hate driving in the city. (Holy crap. I just sounded like Althea. My grandmother. She would have been four hundred years old this month). Hate it. Makes me SO anxious. I hate trying to find anything. I HATE getting lost. You would think a handy solution to this sort of stress would be to get a stupid GPS. But no, I like a challenge. Which is crap. Because I don’t.

Anyways, I decided to make a day of it. I also decided to take Peyton. That may have been inspiration. We went to the super mall in Auburn first where we bought Peyton some girly boots with flowers on them and then, just for fun, took them back. The mall had NOTHING. But it ate up too much time so I ran out of there dragging Peyton, who hadn’t stopped talking for 4 hours straight at that point, to the car. I took the road that said “to Seattle” but it didn’t take me to the 5. I freaked out. Of course. So I got on the phone with Lance and yelled at him because I can make ANYTHING his fault.

We get to the hospital with plenty of time. I hate being late to appointments, so I’d rather get there four hours early than ten minutes late. Plus, for some reason I thought it would take me an hour to park and get Peyton into the sibling care center. Okay, so lets talk Children’s hospitals. They are the absolute BEST and WORST places in the entire world. It’s hard on me to see kids that are so sick. But it makes me so grateful for what I have and it makes me rethink my attitude. There was a tiny little girl with no hair and a feeding tube in a wagon being pulled by a nurse. She was squealing with delight. We could all be so happy. The people there are AMAZING. They have greeters at every door. I think the greeter at the door we came through could tell that I was already on the verge of tears, so she came around her desk and wrapped her arms around me and said, “Welcome to Seattle Childrens!” And then cooed over Abby and played with Peyton. They took us to the Sibling room which by itself was amazing. Peyton was thrilled.

After, I got a drink and headed up to Abby’s appointment. Again, all the staff there were beyond nice. People would stop from what they are doing to come and love on Abby. On our way up to the appointment I ran into another family who had a little boy with Down syndrome. His name is Luke and he was ADORABLE. I talked to the family for a minute and felt my anxiety lesson a bit. This is our new normal. I have to be as okay with it as they were. I think being there made everything just that much more real to me. Abby is cute and easy and one of the greatest gifts I’ve ever been given. Without question. But she’s also fragile and will have ongoing health issues along with everything else that is a worry for parents of children with Down syndrome.

We saw the otogolarugygygaonlogist. She said that Abby has floopy airways in her face- and then when you couple that with how flat her face is, she’ll probably always kind of sound like a pug when she breathes through her nose. But after listening to her a bit, she told me that she was very worried about Abby’s lungs and that was a chance that we’d have to stay the night. When you’re a crazy woman, that translates to, “Your baby has cancer. Or meningitis. Or flesh eating bacterias.” So they called in the pulmonologist. The pulmonologist listened to her lungs and said that there was significant inflamation or something. I don’t remember. Anyways, so they brought in all of the doohickeys and watched all of her vitals for about forty minutes. They gave her some more albuterol but it didn’t change anything. They listened to her while she ate, hoping that they’d find evidence of her aspirating her formula, but it also didn’t change the sound in her lungs. That’s not to say that it isn’t what is causing her problems. We’re going to do a swallow study in the next couple of weeks. They’ve already got us thickening her formula, and if she is aspirating even just a little, it should help. They said they weren’t 100% convinced, but that’s what they were hoping for. Abby also has a misshapen breastbone and sternum area. It caves in on itself. Along with that, the muscles in her trunk are floppy, which makes it that much harder to push out her ribcage.

(when I was little I used to be VERY afraid of aliens. This fear got worse after I saw a movie or whatever with aliens in it. I was SURE they were under my bed. But then when I’d try to talk myself out of hysterics, I would remind myself that they weren’t there the day before when I hadn’t seen them in the movies. The only thing that had changed was ME and my ‘knowledge’ of them. It’s much the same with Abby. Abby is the same as she was before this appointment, the only changed is how much we know about her and how I’m feeling about it)

We got out of Seattle Children’s at 4:30. Rush hour. It took us almost three hours to get home even though we took the ferry. I know I make a lot of fun of Peyton, but that kid is a GREAT kid. He LOVED the sibling playroom. He LOVED that we got to eat dinner at the hospital and that we got to ride the ferry back. He didn’t complain the entire time I dragged him all over Seattle or about the time we spent in the car. He’s a turd, but he’s the best.

(the other night Lance and I had a conversation about what we’d do if any of our kids told us that they were gay. We came to the conclusion that Peyton could never be gay because he hates his mom too much)

So now you’re up to speed. Our long crazy day at Seattle Children’s. Want to know the best part? We get to do it again on Monday. Casey has an appointment with the autism center there. wwwwooooo.

8 thoughts on “A day at Seattle Childrens Hospital.

  1. We see (every year or so) Dr. Debley (pulmonologist) out there at Seattle Children's. LOVE HIM! If they tell you of any other procedures they want to do lung wise and you have questions, we have been through several.Otherwise – hang in there! You are amazing and there are plenty of us around that will do whatever we can to help in the meantime. Let us know if you need anything!

  2. Can I have Peyton all day Monday? Or wait, did I already agree to that? Hmmm, I've confused myself. So, if you haven't already asked, I'm offering. I know I'm getting him early but can I take him after school too? That sounds like it was an exhausting day. I hope Abby's issues aren't more serious than aspirating fluid, which still sounds like a pain. BTW, Peyton and Noah had a blast on Friday. They played very happily together all day, mostly with legos. It was very satisfying to listen to. Cute boys. I was also impressed by Peyton's response to Grace taking a toy he wanted. I could tell he was tempted to hit or snatch but he didn't. Very disciplined of him!

  3. oooh Mary that would be SO superfantastic. I didn't want to ask you because I've made you take him SO much lately. I was going to try to find someone else- but I know he's have a BLAST at your house. Thank you thank you thank you. Let me take the kids for you another day next week. Misty- you are my go to. Thanks for everything.

  4. Can I have Abby on Monday? I'm clean and sober… I mean I'm not sick. Please. I'd really like to. Thank you. Thanks also, for writing this down. You're strong and tough and knowledge is scary, but it is also powerful. You take that power.

  5. I think I speak for Mel, Shelby, and all your other sisters when I say this…I am SO grateful that you have the friends that you do. They have stepped up and done the service that we sisters wish we could but can't. This is a public "thank you" to Erin, Misty, Heather, all Lexi's other friends, neighbors, and ward members for all you do. Thank you for loving our sister and family the way we do. I'll forever be grateful.And sis- I agree with Erin, knowledge is power. This is sooooo hard on you right now, but what you will learn from all of this will empower you and Abbs forever. Hang in there. Best of luck on Monday!!!!!

  6. I was just going to say what Missy said! So funny. I have great friends here too, and I know what a relief it is when people just offer instead of having to be asked. I'm thankful you have that.Also, Althea 400? Funniest. Thing. Ever.And I was also scared of aliens. Mostly that ET was under my bed, and when I got up that he would jump out and pull down my panties. Yes, I just said that word on your blog. And yes, I'm sure I had some deep psychological issues.Breathe deep. It really is going to be okay. Doesn't mean it doesn't suck a lot.

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