Yo soy La Lay

adventures in family, faith, and Down syndrome

A day to catch up on life

We really put Girlfriend through the wringer today.  We have had a few days like that lately.  She’s a trooper, Miss Tessa.  She really is.

Two working educator parents means days like this – when we have a scheduled day off during the week, it means we have to jam pack it with all the appointments and phone calls and chores that cannot be done otherwise.  I’m sure that others outside of education must work this way too, maybe.  

Actually, I’m not sure.  I just know that sub plans are a pain in the rear, so for us, everything that can wait, does until we get a weekday off for some random holiday or break.

In any case, with Thanksgiving tomorrow, we double-booked therapies for today (yes, we know that’s not very nice) and then threw in a follow-up visit with her ENT (now that’s just mean).  I don’t know if we mentioned that we had a second set of tubes places in Tessa’s ears about a month ago… It was in the middle of our month-long advocacy-themed Down syndrome Awareness Month, so that little tidbit probably got lost in the shuffle.

(If you want my unsolicited, non-medical advice, I will tell you this: when an ENT tells you to get ear tubes, get them.)

I don’t know what Tessa’s hearing was like before the tubes, but I will say that almost immediately, we have experienced tremendous growth in her speech and general ability to react/interact.  There are some minor trade-offs (the whole crying-when-we-laugh issue is back), but she speaks to us nowand other people outside of the family can understand some of the things that she says!

(For example, no.  We can all clearly hear no.)

There are other words… a whole bunch of animal sounds, the number 2, hi and bye, please and thank you, papa, shh, up, and down.

For this, we are thankful.

But golly, it was a long day.  And even with the tubes, the hearing test was not completely clear.  A follow-up in a few months will hopefully give a better result.  Today, she passed “behaviorally”, which means that when they put her in the soundproof box, she showed behaviors that suggested she was hearing.  However, with the other test that somehow measures the function of her ear (note to self: look this up), she did not pass.  And so we wait three months and try again.

There are so many other tidbits to share about life lately.  So much is rushing around in our brains and on our calendar these days.  Those tidbits are for another time… for a day when I didn’t run through the maze of life responsibility that we did today.  For now, gobble gobble.  I wish you a restful Thanksgiving… and a day to check things off your list too.  May your children cooperate better than mine did. 😉 

On an unrelated note, who is this young woman and what did she do with my four-year-old??!  

 

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Tubes, Take 2

I think a lot of my readers are Facebook friends… but for those who aren’t, or those who are and want more details of today’s events…. here we go:

We are home after successful tube placement and bronchoscopy.

The morning was, as usual, not without it’s fair share of drama. We have a family history of some complications with general anesthesia.  As the anesthesiologist explained, “it’s very rare that someone would have any type of reaction, but if they do, they usually die. So we’re going to go with a slightly less safe type of IV anesthesia that takes a little longer so that we don’t run the risk of the other reaction.”

Well, that’s comforting.

John was not able to be there today, so very thankfully, my mother-in-law came to keep me company… and to calm me down. She is awesome at chatting away the time and before I knew it, the doctor was back to let me know that Tessa was doing well.

So, the tubes are in and should fall out on their own in (hopefully) a year to 18 months. She doesn’t have to wear ear plugs unless she is in a lake or river, but I don’t see that being an issue for her. 🙂 The bronchoscopy didn’t show any abnormalities, which is good. This means that Tessa’s airways are formed correctly. She had a bit of redness on her vocal cords, which he explained could be from crying or reflux. He said that a swallow study would be a good follow-up to check out the mechanics of how she eats.

It took a little while for her to wake up following the procedure. One of our nurses told us that “people with Downs love their sleepy drugs!” I think some people might not like that kind of generalizing statement, but I am totally OK with it. 🙂

Tessa is in good spirits, happy to be reunited with her bottle, and is her happy self already. Ellie was thrilled to come home from daycare and find her sister back in the house again. She immediately requested to hold her, something that she almost never does, so I’ll wrap up with some sweet pictures of these two little buddies!

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Tubes

We had a follow-up visit with our Ear Nose Throat (ENT) doctor today. If you recall from my three-month update on Tessa, we were checking to see if the fluid in her ear would go away if treated with Nasonex.  A month has passed since then and the fluid is not gone. Because of this, sometime in the next couple weeks, Tessa will have her first surgery – she is having tubes put into her ears.  While they have her under the general anesthesia, they will also do the camera-down-the-throat check to confirm whether or not Tessa has laryngomalacia (see more here), reflux, or something else. It’s great that she is eating upright, but we are still hearing squeaky noises (called stridor) and she has a recurring cough/congestion that we want to check out. We are thankful to have a proactive doctor… and one who can do the procedure so quickly!  She will have the tubes put in AND the bronchoscopy (not sure how to spell that one!) in a procedure that only takes 10-15 minutes!!

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