Early Intervention

5 months

by Maggie

Tessa has been five months for a little over a week. I have not been putting off this update, I’ve have just been waiting for some calm so that I could get all the information in one post.

And then I realized that there is no calm and decided to write it anyway.

At four months, we decided to schedule her ear tube surgery and bronchoscopy. Then, as is well documented on this blog, we had the pneumonia hospital visit and subsequent recovery. Now, we wait. Surgery is scheduled for June 5th, which puts it after school gets out (no time without pay, yay) and during the time that I was originally scheduled to travel to Costa Rica. Clearly, God was keeping me back for a reason.

Here is where we are at in terms of therapy:

Physical Therapy

Tessa is a rock star on her tummy. She is right at her age with her “tummy skills.” She is still wearing kinesio tape to help activate her muscles. I still think the idea of tape on the belly is kind of bizarre, but we’re going with it. She’s slightly more delayed with her sitting skills (about a month). We have had the chance to break out the Bumbo seat and while she can’t last it in for a long period of time, she does kind of like to see the world from a new perspective.

The therapist has recommended using cabinet liner to help stabilize her when she sits in the Bumbo or when we do “couch sitting,” which is when she sits using the corner of a couch for support. Creative, cheap, useful… It works.

Tessa’s new strange habit is this loud groaning sound that she makes regularly while tensing up all of her muscles. We’re glad that she’s practicing using the “right” muscles (the ones that flex), but the groan kind of freaks people out. My theory is that she just likes to hear her own voice (just like her mother).

Speech Therapy

Upright feeding is going great, hurray!! We are at a point where anyone who wants to can give her a bottle and that makes me a very happy momma. The next step is building up her core and mouth muscles to prep for solids. We hope to start with some cereals this summer, but need to make sure that her body is ready for the different textures. We do mouth stretches with her and use a little tool that looks like of like a solid straw with ridges on it to massage her gums and tongue. I’m happy with her progress here, but curious to see if the bronchoscopy will reveal anything interesting going on inside her throat.

Here, you can see how happy Tessa is to have to sit at the dinner table, but not get any cupcakes:

Developmental Therapy

So we’re seeing some more pronounced delays here, but the victory is that progress is happening. Tessa loves people. All people. All faces. All toys with faces. But things without faces? Not so much. She is reaching, which is good, but we need to get her hands to open up a little more. She can’t interact until she gets motivated to grab at things and explore, so the new development in developmental therapy is that it’s time to call in occupational therapy.

Sorry, that was a lot of terms.

Basically, Tessa’s occupation is to play, so we need to make sure she can do that effectively. We are going to get her started with some occupational therapy to help this progress… because while Ellie is a great example for Tessa, she does a lot more toy-swiping than toy-giving.

(this is the best of my failed attempt at a cute picture of these three)

Overall, we are joyful at the growth in both of our girls, prayerfully optimistic that surgery will go well, and ecstatic that our summer is finally here. Just three more days of class for me, another week for John and we will have lots of this…

and this…

and hopefully not so much of this… but I had to send some love to my husband (and dad) for fixing my car…

Welcome back summer, we’ve missed you.

family

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Normalcy?? I hope not.

by Maggie

Well, we thoroughly sucked at this week.

This was the first week since before Tessa that both John and I have been working. I’m sitting at my kitchen table, surveying the disaster that has been created by the tornado of our life. Strewn across the surface of our table are the remnants of not one, not two, but three McDonalds Happy Meals… there are empty Chinese cartons, a Chili’s To Go bag, a couple of squeaky styrofoam boxes from our favorite sushi restaurant… and I haven’t touched my weight watchers app in seven days (thanks for sending me the lovely reminders, Weight Watchers App. No, I haven’t tracked my weight lately, I know. I don’t even want to know where that number stands after this week).

I often measure the stress level of our week by the number of meals we eat as a family, at our table. We shoot for five. This week, we were at one. I think. Then again, that may have been last week.

After a weekend full of way-past-your-bedtime events, Ellie was in a funk. There were lots of tears and sulking by the door to our garage, waiting for Daddy to come home to save her from Lord knows what. Me, I guess. One day, she spent 45 minutes carrying on about how she had no toys anywhere and how she wasn’t going to play ever again. One night, there was vomit. That was awesome.

If you are an unmarried reader… my unsolicited advice to you is that you find the partner who will laugh through the 1 AM, 2 AM, 3 AM vomiting toddler/hungry infant extravaganza and will thank you for being awake with him (as if there were really a choice).

There were meetings that ran long, a list of school events to supervise, two therapy sessions, several hours of crying toddler to survive, a house to clean…

I actually broke down and called for an estimate on how much it would cost to have my house cleaned by professionals. Sooooo not in the budget.

In any case, we have learned the importance this week of my monthly meal plan (which was not in place this week… hence, the struggle… or so I tell myself) and our shared iPhone calendar. While I don’t think that we will ever not be busy, we will get better at the adjustment to two in the working world, two in daycare.

Right?

Before I forget to record them, there were some fabulous bright spots to our week. And I mean fabulous.

1. Tessa took almost all of her feedings today in an upright position. HOLY Guacamole!!!! Yes, yes, yes, THIS is what we have been praying for most.

2. Ellie took a bath with zero tears. I haven’t written much about this (it’s a “coming soon” post), but suffice it to say that bathtime has been a terrible experience for quite some time and we are finally getting our little fish back.

3. Tessa figured out how to roll from back to belly today. She’s been on her side and aaaaaaalmost over for a little bit, but she finally got her shoulder to cooperate. I’m SO proud of her… and SO terrified to walk into her room and see her sleeping on her belly. I’m not ready for that!

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Progress – Month 3

by Maggie

(Typing on an iPhone is still terrible. Would someone please tell my husband to stop goofing around on his Spring Break and fix the computer??) 🙂

Our marathon week of doctors and therapies left us with far fewer answers than we were hoping. As always, Tessa continues to progress, but we are still trying to get to the root of what might be making the feeding process so challenging for her.

Medical
Tessa is our little peanut, weighing in now at 11 lb 6 oz. It’s a good gain though, 2 pounds in a month. Overall she looks really great. She has been battling a cough for awhile, but it seems to be clearing up finally. Her clogged tear duct hasn’t resolved itself yet, but the idea of someone sticking a probe into a hole that tiny has me so freaked out that I’m massaging the heck out of her little gland every chance I get. So far, she’s pretty easygoing, so I can do this without much of a fight.

We also took Tessa to see an Ear/Nose/Throat (ENT) doctor for a variety of reasons, but mostly because she continues to make a gaspy, high-pitched squeak on a fairly regular basis. We had attributed this to the laryngomalacia (floppy vocal cords) that we believe she has, but want to be sure that she isn’t aspirating on her food when she squeaks. Unfortunately, the ENT was running late and we had to feed our child, which meant that he couldn’t stick the camera down her throat. Boo hoo. I wasn’t terribly disappointed to delay that experience!! He did notice that Tessa has some fluid in her ears and if it doesn’t resolve in a month with some nasonex, she’ll be having surgery to have tubes put into her ears. If she has the surgery, he’ll just do the scope at the same time. If not, I’ll have the joyful experience of trying to hold our squirmy worm still while he does it. Eek.

Physical and Developmental Therapy
The bobble head is still present, but Tessa is showing great improvement! She loves to look over my shoulder, so she practices holding her head up a lot. Just like Ellie, she loves to see what is going on in the world around her. We have gotten better at getting the arms to come to her center (midline), but it is still a battle. We have expanded our use of kinesio tape to be used not just on her abs, but also on her chest/pectoral muscles. It looks goofy, but it seems to be be working well to help her lift her head and chest up. Now that we are teaching her to use the correct muscles to roll (not the head and neck), she can get up onto her side pretty well, but does not flip. This might seem like she has regressed, but it’s actually much more important for her to use the right muscles! We also have a pair of “hip huggers” for Tessa to wear. They are tight pants with the legs sewn together (like a mermaid fin) so that her hips align better. Unfortunately, the wiggly legs have found a way to wiggle right out of the pants, so our PT is working on making a new pair that she can’t get out of!

Developmentally, we are getting lots of smiles and coos from our sweet girl. She has been very vocal for the past couple of weeks and I am loving it!!! While her absolute favorite is still the ceiling fan, she mostly prefers to look at people and looks for faces to match the voices that she hears. We are now working on getting her to track 180 degrees (follow an object all the way from left to right) and would like to see her show more interest in grabbing objects. The rough estimate is that she is about 30% delayed right now. Not huge!!

Speech
On a positive note, I can get Tessa to eat about one ounce a day in an upright position. One ounce out of about 25 per day sounds terrible, but please understand that two weeks ago, just putting the bottle in her mouth while upright caused serious gagging. I’ll take the small victory.

I’ve been back to work for two days now. It was so nice to have such a warm welcome back from my students and coworkers. They were actually so nice that my perfect April Fool’s Day trick was a total flop!! I had planned to tell my classes that Tessa had a really bad day at day care on the first day and that I was going to take the rest of the year off to be with her. Every time I tried to work up the courage to joke with them, I couldn’t do it!!! It really is good to be back, but I do miss these girls (and guy!) while I’m bringin’ home the bacon…

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The State of Our Union, 1st Quarter 2014

by Maggie

It’s hard to believe that 2014 is (almost) a quarter of the way finished. Spring is taking its sweet time arriving in our area. It’s been a rough winter!

And so an update on the family:

John and I

No one really wants to know about the adults… but it’s 7 AM on a Saturday morning and we are both showered, dressed, and ready to start the day… and yet, our small ~~bosses~~ children are sleeping the morning away. John is clicking away at his laptop, working on yet another grad school project and I’m sitting here with my ear pressed up to the baby monitor, desperately hoping to catch the moment when Ellie wakes up and realizes that Tessa spent the night in their room with her for the first time. Tessa has finally graduated from her pack n’ play-in-the-closet set up to her crib… but I digress. I’m talking about the adults, right? John’s at the point in his grad school that I was exactly one year ago. He’s tired (I’M tired) and feels like there is no end in sight. He’ll be finished in December and perhaps then we’ll have just a tiny bit of an ease in the chaos of life. Of course then I’ll probably get the itch to go back to school or I’ll take on some project that I really don’t have time for and we’ll be back to crazy. I think we kind of like it that way anyway. So John is grad-schooling and coaching and teaching…. and me? I’m kind of jealous. I just really need to go back to work.

Ellie

Our crazy (CRAZY) child has had another explosion of language growth. She’s already very verbal for her age, but now she’s connecting ideas and feelings, asking questions that are complex and interesting, and singing songs that are incredibly inappropriate for a two-and-a-half year old (totally my fault…….). She’s still a total klutz. My mom tries to tell me that she’s just too busy to really be careful where she is walking, but I’m fairly certain that she’s just the kind of athlete that I was…. not an athlete at all. We all have our strengths and weaknesses. She and I went out for a Mommy/Ellie date this week at Red Robin like we used to do before Tessa was born. We even got dessert. 🙂

Tessa

And then there is the peanut. She’s just about THREE months now. Suddenly, she’s very smiley and engaging. She’s making some other noises than crying. Her first noise was an “are you kidding me??” yelp. Now there are happy coos as well. Her physical progress is… progressing. In PT, we’re using some kinesio tape on her belly to help her build up strength in her core. She’s not able to lift her head up as well when she has it on, but I’ve been assured that she’s not regressing, she just has to re-learn to lift it using the correct muscles and posture. She also gets to start wearing “hip hugger” pants to keep her frog legs from turning into a long-term problem. We’ll see the developmental therapist next week, but I’m sure she will be happy to know that Tessa is smiling much more, maintaining eye contact (mostly with me), and when I move out of her vision, she looks for me. Small victories. And then there is speech. No progress to report here with Tessa. She’s still feeding in the side-lying position and doing well with that. I’m also more comfortable with it – and getting more comfortable letting other people feed her in that position. We were working on a transition to more upright, but she has had a cold for a few days and it’s hard enough to get the food in with a stuffy nose that we’re waiting until that clears up to experiment. For now, the focus is on holding her differently so that she gets used to being in a more upright position. We’re still doing some mouth-stimulating and working on the pacifier (though she has found her thumb and really likes it.

I made the mistake the other day of pulling out Ellie’s baby book and looking at what she was doing at 2-3 months. Well, I don’t know if it was a mistake, but it certainly hit me like a ton of bricks that Tessa is just going to take longer to do what her sister could. I’m wondering what this little girl is going to be like when she’s bigger!! Who will she be? What will she sound like? What will she do? Don’t we ask those questions about all of our children?? I’ve been forcing my way through the book Eat, Pray, Love for months (I have no idea why it’s taking me so long) and she wrote about these phrases that you chant through meditation to center yourself. I don’t meditate (do people really have time to do that??), but I do have my own phrase running through my head when I get frustrated: she will do it, in her own time. Sometimes I need to say it a lot, other times not at all. But it’s a reminder to me that we’ll get there. In her time.

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Progress – Month 2

by Maggie

All of Tessa’s therapies are in full swing now, so here is an update on where she is and what we’re working on:

Developmental Therapy
We are working on bonding as a family and smiling. I think the bonding is going well… we kind of like her… a lot. Plus, she’s a good sleeper, which definitely helps her cause. 😉 Tessa is doing some social smiling, though not a ton. More than anything, we would like Tessa to smile at Ellie. It will come… it may come faster if Ellie would stop undressing her like a doll every time I turn around.

Physical Therapy
We are still hearing that Tessa is so strong!! The nurses called her “the swimmer” in the NICU because her arms and legs were always flailing. Now we’re trying to help her coordinate those movements a little more. It sounds odd, but she doesn’t know that her arms and legs are attached to her, so we try to encourage her to bring those parts in toward the body, like this:

Rather than her preferred relaxed position:

We do a lot of tummy time and also work on supporting her in a sitting position to gain more control of her neck. When holding her, we keep her legs from going “frog legged” as often as we can. Thankfully, she is loving sitting upright by Mom and Dad’s shoulders, so she gets a good workout in that way! She also throws her head back and extends her back a lot. They call it “extension” and while it is building strength, it’s not so great for her posture and physical development long-term. Again, trying to get her to bring everything midline (center) will help. We usually lay her on the floor between two rolled towels to help with this.

Speech Therapy
While Tessa is still eating laying down, we have much less gulping than before and she hasn’t choked on her food in quite some time. John went rogue and tried to feed her sitting upright, but she just wasn’t ready. Patience is very challenging, but I know she won’t eat on her side forever!! On a positive note, Tessa has found her hands and likes to chew on her thumb. I realize that this sounds strange, but different textures in and near the mouth are important! Also, to stimulate muscles, when we clean Tessa’s face, we always wipe toward the lips rather than away. Tummy time and sitting upright are helping her build up strength to eat in a typical manner. It’s so amazing how everything is related!

We won’t have an official re-evaluation until Tessa is 6 months and I’m curious to see where she is at by then. Babies change so much in their first year! This week, I packed away the newborn clothes (they lasted a lot longer with Tessa than they did with Ellie!). It goes so fast.

Tessa “stuck” in her towels. She doesn’t like it so much, but it’s good for her. 🙂

family

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Tummy Time

by Maggie

…. Of course, tummy time can only be mildly successful when you enjoy sleeping on your belly…

family

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by Maggie

So Tessa qualifies for something called Early Intervention (EI) because of her diagnosis of Down Syndrome. It covers a variety of therapies from birth to age three that will help her develop at an appropriate pace. At the age of three, when EI is “done,” Tessa will start school. She will not wait until she is five like a “typical” child.

Yesterday, we had our EI evaluation to get a better idea of what Tessa’s strengths and weaknesses are. Based on her evaluation, she will receive services to help her grow. More on that later. For now, here is what we know about our little girl:

1. She is strong and active! Babies with DS tend to have low muscle tone. This doesn’t refer to the strength of the muscle, but rather how much energy it takes to get the muscles moving. In terms of her reflexes and general movement, she scored in the two-month-old range! And as one therapist put it, “wiggly babies seem to do even better.” After hearing that, I flashed back to the constant kicks and rolls in my belly during pregnancy… This girl can move!

2. Tessa’s neck strength needs some work. All babies are born with bobble heads, but Tessa is going to need some extra help here. Tummy time is in order!

3. With modifications, Tessa is a good eater. When eating, she currently lies on her side perpendicular to the person feeding her in what is called a “sidelying” position (creative name, I know). She uses a “preemie” nipple on her bottle. We will continue to work on getting her to eat “normally,” upright, with a standard bottle. We are also supposed to encourage her to use a pacifier and to put her fingers and other objects (toys, teething rings) in her mouth.

4. Socially and emotionally, she is content, a good sleeper, easily calmed, and not easily rattled by things like her older sister shoving an electric toothbrush into her mouth. However, it is tricky for her to do too many “things” at one time, so we have to isolate the skills we want to work on. For example, when we work on vision/eye contact, we hold her limbs still to keep her from using too much energy on the wrong body part. 🙂

We are happy to report that the overall consensus among the therapists is that generally, we aren’t catching Tessa up to her peers, but rather maintaining her progress and moving forward. This is great news! From here, Tessa will have physical therapy once a week, speech (for feeding) twice a month, and she will see the developmental therapist once a month. I can’t believe how much support and help we have gotten with Tessa so far. We have very high hopes for her future and know that there is no limit to what she will be able to do in her life!

family

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Yo soy La Lay

adventures in family, faith, and Down syndrome

5 months

Normalcy?? I hope not.

Progress – Month 3

The State of Our Union, 1st Quarter 2014

Progress – Month 2

Tummy Time

Early Intervention

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