Down syndrome

I yell (now) because I care.

 I wrote a big long post about every single thing that happened in this somewhat horrific day, but it was terribly boring, so I deleted it. Long story short, Abby needs surgery to get her tonsils and adenoids out and tubes put in her ears. The ENT when she scoped Abby’s nose and throat said she had thought for a second that Abby had masses in her throat- nope, they’re her tonsils. She said her throat is super inflamed, too, which means she might have some reflux going on we don’t know about. She doesn’t have a laryngeal cleft, so that’s good news. Mostly. A cleft would explain her frequent pneumonia. The next specialist for that is an immunologist, and I think it’s overdue.

Waiting for her appointment

This is all very normal for children with Down syndrome.

But it’s not normal for me.

I’m okay (mostly) with the surgery- in fact, we’re waiting to get it done in Boston- the best Children’s hospital in the world and home of my favorite Doctor I’ve never met ever- Brian Skotko.  The tonsils and adenoids thing (they call the procedure “T and A” and I giggle inappropriately every. single. time.) is something we knew she’d have to get done eventually, just not this soon.

 When we were getting her audiology tests done, I was surprised at how little she heard. I had a hard time not crying right there. The doctor called it “significant hearing loss” and I’m not sure what that means. The hearing centers in her brain are fully functional, so even if the problem isn’t fluid (and it almost 100% surely is), this hearing loss isn’t permanent.

 It got to me though. All of this time when I’d whisper “I love you” when I put her to bed, she couldn’t hear me.  When I’d hold her and sing to her, she couldn’t hear me (which is probably why she didn’t cry…). She can hear me when I speak loudly or yell, so it’s not like she doesn’t hear MOST of what I say, (did you see what I did there?)  it’s just hard to think of all of the times she didn’t hear me tell her how much I adore her. She knows. I know she knows.  But you know that feeling when you leave for a date and realize that you forgot to say goodbye to your kids before you bolted through the door and skipped to your car? That little sinking feeling? Do you not get that? Do you not have a soul at all?

But if you do, it’s kind of like that. I know she knows how much I love her, I’m just sad it’s not one of the more frequent things I yell. She has heard a lot about not fighting forks and for Peyton to not force Casey to “be his nerd” and whatnot, but sharing love loudly has never been our things.

We’ll have to start doing that.

17 thoughts on “I yell (now) because I care.

  1. Cute picture! My sister in law is taking her daughter who was born with a gap in her esophagus to Boston to get it fixed up. I wonder if you guys will be there at the same time, it would be kind of neat if you were.

  2. Some things:1. Cutest picture ever. I love it so much.2. I've had a T and A (didn't know it was called that – hahaha) but I was in the 2nd grade.3. Macy and Roman have both had tubes put in. I noticed a difference in Macy's hearing right away. Roman didn't have as much fluid so I never noticed. And he is just now starting to stay stuff (he had the tubes put in back around November or something).And finally . . . 4. I have never thought to force someone to "be my nerd." Will have to try that on Kiff soon.

  3. I just have to say that you remind me so much of myself and what I went through with my daughter. She doesn't have down syndrome, but she has autism and had the exact same surgery last Halloween. There would be times I'd talk to her and she wouldn't respond. We had her hearing checked and everything seemed fine, but I found she would respond to me right away if I yelled. Then she had the surgery, tonsils removed, adenoids removed, and they found that the tubes in her ears were unnecessary, so we dodged that one. But after the surgery was done and she was recovered, I didn't have to yell anymore. I'm sure you'll feel much better once the surgery is over, but I'm sure everything will be fine and your little girl will be much healthier for it.Good luck!

  4. I don't even remember how I found your blog. Probably through my sister. I love reading your blog, I love your honesty, I think you should write a book some day(I am sure you've heard that). Sorry about all your medical craziness today! Medical stuff makes me anxious and we've had a lot lately. Pediatric Neurologist for us this Friday with my little guy Ryan… I don't even know what to expect– probably why I'm anxious. Also I love that your kids take ideas from Phineas and Ferb and apply it to life. Mine do too… Including making their baby brother be Perry the Platapus– and trying to force him in to akwardly small spaces (secret tunnels).

  5. I don't know how you even figured it out with autism. Half of the time my son with autism doesn't respond. That's amazing that you caught on to it. I couldn't even imagine having to do this same surgery on Casey. That would scare me to death. He's needed some basic bloodwork done for FOREVER and I can't even go through with that!

  6. I AM writing a book. Will I finish it? Do I finish anything?Sad.I hate doing any of this, actually. The appointments are terrible even when they aren't terrible, you know? I couldn't imagine dealing with seizures and whatnot. Too much.

  7. Yeah, seizures were one of the things I MOST hoped to never to have to deal with. They are scary. And once your kid is diagnosed with a seizure disorder, they don't even consider it an emergency. They don't even want you to call 911 or go the ER or do any of the things that make sense. They want you to get out a watch and time it… And if very specific things happen, then it is an emergency. Otherwise it doesn't warrent a visit or even a call to the doctor. Just time it, and journal it. But yeah, I hate ALL the appointments, even routine ones. You will finish your book one day… You're kinda busy! But I know what you mean. I hardly ever even finish a blog post!

  8. Awww.. I love the picture!! And I'm a yeller too. I'd probably also laugh inappropriately a T & A. I'm so happy the hearing loss isn't permanent and I'm so sorry for all the procedures and things you guys are going through.

  9. Because I'm wholesome and sheltered I had to look up "T and A" to see why it makes you giggle.Tyler will also be getting a T and A (hehe) surgery in September. Maybe we'll be doing that at the same time. Now for a hearing lesson (ignore the rest if you don't care). When testing ears, the audiologist fluctuates the decibels (dB) at which the sounds are presented. To be considered as having "normal" hearing you should here the sounds at 10 dB or lower. I believe the school screenings say 15 dB or lower is normal. So, that can give you something to base it off of. "Profound" is worse than significant, so she's not at that point. Once she gets everything else taken care of I'm sure her hearing will get better.She is cute. You are cute. I like you. Come back. Now! RIGHT NOW! (or after her surgery in the best hospital ever)

  10. We have been to Boston for heart surgery twice. LOVE the children's hospital there. We have had wonderful experiences both times. After the second surgery, Dr. Brian Shotko came to Addison's room to meet us (we have a family connection), and that just blew me away. I absolutely love him.I understand about the hearing loss. I felt a bit like that after we went to the eye doctor last summer and I found out that Addison wasn't seeing any of the signs that I had been trying to teach her and was SO FRUSTRATED when she wasn't signing back. So I cried and she got glasses. And then since then- she has discarded the glasses and now sees all signs and stuff in the distance….it's crazy weird. I need to take her back for another appointment. But now I'm not so convinced that her first diagnosis was completely accurate. Time will tell. I'm sure even though Abby gets the sentiment behind your "I love you"s even if she can't hear it 100%.

  11. I can't decide which is better, if doctors named it T&A unironically, or if they thought it was funny too. My daughter got tubes and I too cried at the severe hearing loss declaration by the audiologist:( The picture of you guys is super adorable though!!

  12. HATE THAT YOUR PRECIOUS BABY HAS TO HAVE SURGERY; LOVE THAT YOU CARE SO MUCH! (I come from and Italian-American family and yelling is a way of life.)

  13. OH MY GODI LIVE IN BOSTONOkay, I apologize for the caps. Deep breaths. But seriously, if I saw you and Abby walking around Harvard Square I would probably accost you for autographs. If you need free childcare, let me know. (Is that weird? That could be weird. I have nannying references, I swear I'm not just some random internet person. I mean, I am some random internet person, but I'm a random internet person with nannying references. Who thinks you're awesome. So.)

  14. SUrgery – I can't even go there and I feel *so* much for you, just thinking about it.Hearing – you should know though that she CAN hear you when you say those things. Maybe not with her ears, but she can hear with her heart just fine.

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