Yo soy La Lay

adventures in family, faith, and Down syndrome

We interrupt this regularly scheduled program…

 
ūüėÄ ūüėÄ ūüėÄ

That is all. 

2 Comments »

Lesson #18: Little babies can do Speech therapy!

This is part of the 31 for 21 Blog Challenge!

So, first of all, this happened:

photo 1 (6)Ellie was enthralled with her potty costume… Once her¬†cousin Jimmy came over dressed as Curious George,¬†it was over. ¬†Somehow, Ellie convinced him to shed his costume so that she could wear it and then the two of them had a grand ol’ time pretending to use the potty. ¬†Kids are weird.

A rough transition here…. on to Speech.

It was very perplexing to me that we could start Speech therapy on a 6-week-old baby.  However, with Tessa unable to take her bottle in an upright position, we were set up with a type of Speech therapist who specializes in Oral-Motor therapy.  Oral-Motor therapy teaches a child awareness, coordination, and strength of the muscles of the mouth (all related to that low muscle tone that we keep talking about).

(On a side note, because I know some are curious, no, my children have not¬†really¬†been nursed. ¬†Ellie got 5 days and Tessa got 12. ¬†That’s a whole other story.)

During a therapy session, we work a lot on building strength in her core muscles. ¬†When you think about eating, you use muscles throughout your abdomen, neck, and head to eat effectively. ¬†One of the ways that we can improve Tessa’s eating skills is to build strength throughout her body so that she will be stable when she is sitting and can begin to use her hands to move food to her mouth. ¬†This part of the session focuses on sitting and bringing toys to the mouth.

We also work on direct input to the mouth itself.  We started by providing input with a tool like this:

We use it to teach her tongue and gums what different textures and pressures feel like.  We also work on stimulating her tongue to move around the mouth to react to food.  Lately, we have graduated to putting small crumbs of graham cracker or animal cracker on the sides of her mouth so that she learns to move the food and to swallow it.

We always end our session with feeding. ¬†Well, I shouldn’t say always. ¬†Sometimes, Tessa gets really mad when she doesn’t get fed first. ¬†And sometimes, she decides that she has had enough and just closes her eyes and goes to sleep. ¬†However, we like to do some “spoon work” with the therapist when Tessa will let us. ¬†ūüôā ¬†We have found that a forward-facing presentation of the spoon (how you or I would put a spoon in our mouth) is challenging for her, so we present the spoon sideways. ¬†However, we also continue to work on the forward presentation. ¬†We are teaching her to get the food off the spoon and swallow. ¬†She also has a habit of sticking her tongue out while she eats, so we have to wait until she puts her tongue¬†in the right place before allowing her to take a bite. ¬†Remember that a tongue is made up of a lot of different muscles, so her low muscle tone affects her ability to keep it in the appropriate place and use it effectively.

Our next steps with Tessa are to introduce a straw cup (recommended over a sippy cup) and to slowly increase the variety of textures that she will tolerate. We have begun to work on the actual “speech” part of Speech therapy with practice mimicking noises, ¬†We have introduced signs for more, all done, eat, and drink.

The most important thing to remember is that while we have made modifications for Tessa and we do have to make a conscious effort to teach her some skills that may come naturally to others, our life is not work. ¬†We don’t live in a constant therapy session, always practicing, practicing, practicing. ¬†When we can, we do these things. ¬†That is all. ¬†There are weeks when we do a lot of practice. ¬†Sometimes, we don’t. ¬†Eventually, we’ll get there.

An excellent resource that I have just started to dive into is Early Communication Skills for Children with Down Syndrome.  Click on the blue link to find it on Amazon.

Blurry, but perfect…

photo (15)

3 Comments »

Nine Months

Well, the car seat carrier is getting heavy. ¬†I’m not sure how much longer I will be able to cart my sack of potatoes around in it without enrolling in a gym to build up some muscles. ¬†One of my most favorite things about Tessa is the fact that she literally melts into your shoulder when you hold her. ¬†It’s a product of her low muscle tone (meaning: it takes her more energy to get the muscles going than is typical) and I adore it. ¬†However, when it comes to her being carried in a car seat or otherwise, she gets heavy fast. ¬†With little to no assistance from her own muscles, mine are tired.

I bring this up only because we had a nine-month visit with Tessa’s pediatrician today and she is tipping the scales ūüėČ at almost 17 pounds and 26 inches these days. ¬†She’s essentially not on the growth charts for height or head circumference, though not surprisingly, her weight was on the percentile charts. ¬†On the old, no-longer-in-use Down syndrome growth charts, she’s at a solid 50th percentile in all areas and continues to grow. ¬†And, as John so correctly noted, she’s in the 100th percentile for cuteness. ¬†For comparison’s sake, she’s about the size that Ellie was at 5 months.

(Yes, I did run home and check Ellie’s¬†baby book for that comparison. ¬†But, for the record, I was only trying to determine how much longer I might be able to¬†keep Tessa in the six month clothes, based on what Ellie was wearing. ¬†I think we’ll get through the fall and maybe part of the winter…. yippee!)

With good reports from cardiology, her ENT, and her¬†eye doctor, we are thankful to have a little break from appointments until the end of the year. ¬†We don’t have to go back to cardiology until she is about 2 and a half. ¬†They are still monitoring the very, very small hole that Tessa has between the top two chambers of her heart. ¬†It is causing no issues and we fully expect that the hole will close on its own in the next couple of years. ¬†If not, she may have surgery at around 3-5 years of age. ¬†No ear infections recently, tubes are still in, eyesight is normal, clogged tear duct resolved months ago… we’re in good shape! ¬†For once, when the doctor asked for any changes to her medical history, I had nothing to add!! ¬†Tessa did get her flu shot today as well and took it like a total champ. ¬†She puffed out her lower lip a bit, but there was no horrific, blood-curdling scream as her sister tends to do. ¬†We had originally thought that Tessa might be our drama queen, but I have to tell ya, she is not showing any signs of being dramatic at this time. ¬†Let’s keep it going.

I’ve been oddly reflective over the past couple of weeks, but am saving my posts up for the 31 for 21 Blog Challenge that I will take part in during the month of October (which happens to be Down Syndrome Awareness Month). ¬†More details coming soon…. And since my crazy schedule is keeping me from taking a tremendous number of pictures these days, I leave you only with Tessa’s new sleeping position… and solid evidence as to why I pick out the girls’ clothes every day (not John):

photo (13) photo (14)

At least they are just pajamas, but poor Tessa… ūüôāphoto (12)

1 Comment »

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. ūüôā 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. ūüôā

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!

IMG_0938

 

IMG_0943

IMG_0936

6 Comments »

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!!

2 Comments »