Yo soy La Lay

adventures in family, faith, and Down syndrome

Progress – Month 2

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. ūüėČ 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.

20140225-194250.jpg

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:

20140225-194547.jpg
Rather than her preferred relaxed position:

20140225-194643.jpg
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. ūüôā

20140225-202023.jpg

Advertisements
3 Comments »

Fruit Day

It’s fruit day. ¬†Ugh.

Occasionally, when I find myself veering off the healthy eating path, I do a slightly modified week of this crazy diet (found here) to help get me back on track.  I have found that it really helps me cut a lot of cravings and brings me back on track.

However, day one is brutal.  24 hours of nothing but fruit.  Originally, I thought this sounded glorious!!  I love all kinds of fruits!  What could be so bad about a day full of fruit?

Except now it’s noon and all I really want is a pickle. ¬†Or lettuce. ¬†Heck, I’d even take a brussel sprout. ¬†Anything but sweet! ¬†The day just makes me really cranky. ¬†Which makes it a perfect day for me to write vent about the financial future of my daughter and the ABLE Act.

This is long and complicated, but as the law currently stands, when Tessa is an adult, she will have to stay “poor” in order to continue to receive any services that she may need. ¬†How poor? ¬†She will not be able to have “resources” of more than $2000 or she will no longer qualify for things like Medicaid or Supplemental Security Income. ¬†Under the law, she cannot have a college savings account, real estate, a retirement fund… the list goes on. ¬†If John and I die before she does, we cannot leave money in her name to provide for her future. ¬†There are some loopholes here, but with the advances that have been made in understanding the development of children with Down syndrome (and many other disabilities), the system in place is antiquated and needs to be replaced. ¬†These children can go on to higher learning. ¬†They can save for retirement. ¬†They can do many, many things that we may not have thought possible!

Current legislation aims to make those changes. ¬†A few days ago, I posted a link to a petition to urge the US House of Representatives to pass the ABLE Act (here’s the link) so that Tessa could potentially save for her own future. ¬†And here is where I get frustrated.

Many, many, many people that I know, love, and appreciate, signed the petition and I am forever grateful that they have taken the time to do so. ¬†The goal is 300,000 supporters and I’ve been watching for a week as the number has slowly ticked upward. ¬†We are still short a little over 65,000 signatures to reach the goal. ¬†And last Thursday, after the controversial Women’s Figure Skating Olympic medals were awarded, a new petition to remove anonymity from figure skating judges attracted over 2 MILLION supporters in less than 24 hours.

I’m sorry, what?

Which is the lesser cause here??  

Admittedly, I probably would not know anything about the ABLE act if it were two and a half months ago and Tessa was not here yet. ¬†I would still support the darn thing, if I knew about it, but there has to be some way to make people aware of the bigger issues. ¬†This act affects more than just people with Down syndrome. ¬†It’s for all individuals with disabilities (or as we’ve come to call them in our home, different abilities). ¬†It matters. ¬†Certainly a lot more than some silly figure skating competition.

I think I’ll go eat a potato now.

2 Comments »

You gotta laugh

Tessa has a onesie that says “50% Mom + 50% Dad = 100% ME!”

John says, “I think we need to change this to say “50% Mom + 51% Dad… actually, I should probably hope the extra chromosome came from you…”

Love this guy!

1 Comment »

This Beautiful Life

I only want to write about this one more time before I put this baby to bed.

I am approached by many people who want to know how or why I’m taking this diagnosis “so well.”

I want it to be abundantly clear that Tessa is my baby first.  Sometimes, she is my baby who slept through the night at six weeks.  Sometimes she is my baby who just loves to snuggle.  Sometimes, she is my baby who came a lot earlier than planned.  And sometimes, she is my baby with Down syndrome.

It is not wrong to feel sad, upset, angry, overwhelmed, disappointed, or hurt when you get life-altering news. ¬†My initial reaction was confusion. ¬†I distinctly remember laying my head against the bed, straining to hear what the nurse was saying to John while I was still delivering the placenta (sorry, male readers), and being completely bewildered. ¬†It became very urgent for me to learn what this meant for our little girl (whom I thought was a boy, which made all of this even more perplexing). ¬†But no one ever told me that she wouldn’t live a happy life, so why should I expect that she won’t?

Here’s the reality of Tessa’s beautiful life as I see it: ¬†in very rare instances, a person with Down syndrome may never speak. ¬†And so what?? ¬†Is her life not worth living¬†if she never says a word?? ¬†How many times have words gotten me in trouble? ¬†How often have I caused pain, hurt, anger, or frustration with my words? ¬†And who would it really hurt if Tessa never speaks? ¬†Me? ¬†What do my feelings matter if my little girl is happy? ¬†What can I really want for her? ¬†To love and be loved. ¬†That is all.

Sometimes, Tessa might deal with disappointment, frustration, and hurt because of her different abilities. ¬†And so will Ellie. ¬†Believe me, both of my children will have to overcome struggles. ¬†If Ellie comes home and tells me that she wants to be a tennis player, I have to be honest, it will concern me a little bit. ¬†I’ve seen her try to walk quickly across a room…. graceful she is not. ¬†However, there’s no reason that she can’t work at it and accomplish what she wants. ¬†That’s how I feel about Tessa. ¬†If she wants to go to college, get married, fly to the moon, am I going to tell her no? ¬†Hold her back? ¬†Stop believing in her? ¬†I have no reason to believe that she won’t be able to do any of those things. ¬†Worse would be to tell her she can’t… or worse, to never have had her to love at all.

I accidentally stumbled into a support group online for women who had terminated their pregnancies for medical reasons. ¬†I was looking for other mom groups for families like ours and it was literally one of those situations where I scrolled and clicked too fast, ending up clicking the link that I didn’t intend to pick. ¬†I will not stand in judgement of these women and their decisions. ¬†I believe that it is between them and God. ¬†But I mourn for those little babies who will never snuggle on the couch with Daddy, who won’t get way too many kisses from their big sister, who won’t have the chance to love simply because of misunderstanding, misinformation, or a lack of confidence to be able to provide for the child. ¬†It is a beautiful life and I am so glad that Tessa is here to enjoy it.

3 Comments »

Sickie

I need to write an update on Tessa, but truth be told, I haven’t spent a lot of time with her in the past couple of days. ¬†Instead, I’ve taken care of this little sickie:

Image

Ellie doesn’t get sick often. ¬†As a matter of fact, this is the first time she’s been sick at all since she was about 9 months old!!! ¬†However, when she does come down with something, she goes all out. ¬†She’s just like her daddy in this way. ¬†The throwing up, the chills, the crying… her fevers are always in the mid-to-upper 103 degree range and she just acts miserable (and I’m sure she really is!). ¬†New to this illness was Ellie’s ability to use words to tell us all about her pain and discomfort. ¬†She had lots to say!! ¬†So. Much. Whining. ¬†My particular favorite was an exchange that we had toward the end of her sickness, when she was absolutely desperate to show some love to Tessa:

Ellie:  Can I please kiss Tessa now?!

Me: Nope, sorry.  We have to wait until you are alllllll better.

Ellie:  Ohhhhh.  Because I throwed up?

Me:  Yep.

Ellie:  And because I have worms?

I can assure you, there were no worms, but rather, germs. ¬†Thankfully, it only took a couple of days for Ellie to return to normal. ¬†The “tummy bake” and “worms” have left, John and Tessa are allowed out of quarantine, and only one of four family members was afflicted with this lovely bug.

(It’s worth noting that Ellie learned VERY quickly that she will be pampered when sick. ¬†After bursting through the door yesterday afternoon, laughing and singing, she was asked to pick up some toys. ¬†She proceeded to tell us that she really “needed a rest,” then laid down on the couch, closed her eyes, and asked for some sprite for her tummy bake. ¬†Yeah, right.)

4 Comments »

My new friends

I have spent my afternoon trying to infiltrate the Down syndrome community. ¬†There is no secret password, no special knock. ¬†It’s not a closed community, nor is it unfriendly or unwelcoming. ¬†But it is foreign to me. ¬†The vocabulary is new, the discussions, different. ¬†It’s full of love, laughter, frustration, hope, and it is somewhere that I now belong. ¬†I’m just not sure how.¬†

We have previously been contacted by Ann, one of the family support coordinators from NADS (National Association of Down Syndrome… go ahead, chuckle at the acronym. ¬†We always do!). ¬†She has called me a few times and each time, I told her I was still processing and not sure what to talk to her about or what we would need as a family. ¬†A few days ago, I had decided that I was ready, that it was time to reach out to other people who are navigating through this experience as we are. ¬†So I put “email Ann” on my list of things to do… at the bottom… and then I never got around to it. ¬†Putting it off? ¬†Still not sure what to say? ¬†Just very busy? ¬†I’m not sure.

Today, out of the blue, she called me! ¬†Thank you, God! ¬†She sent me lots of information about parent groups and other activities to consider. ¬†We have lots of support from family and friends… but sometimes it can feel like I’m on an island, trying to navigate the challenges of Tessa’s world! ¬†The ball is in our court now.

Sometimes, I feel a little “late to the party” when it comes to Down syndrome, or maybe just like an outsider still. ¬†I have been looking through and following blogs started by families with little boys and girls like Tessa… families who are farther on their journey than we are, or who had a prenatal diagnosis and “know more” before their babies are born than we know two months into Tessa’s life. ¬†I have shied away from online communities because of the drama and weird “trolls”, but I’ve found a home reading the stories of those few that I have encountered in the blogging world. ¬†And soon, we will venture out to a Bowl-A-Thon or a conference or a playgroup and I’ll start to feel more like I am a part of our new community. ¬†Soon.

 

1 Comment »

Mom Guilt

Both my girls had fabulous heads of hair at birth. See exhibit A (Ellie) and B (Tessa):

20140216-181454.jpg

20140216-181536.jpg

It took me until Ellie was 2 to get the courage to even give her a trim! When your little one has hair to her shoulders before she can walk, it’s quite the accomplishment!

However, my pride in the hair of my children is also why I’m feeling horribly guilty about the latest development in Tessa’s growth.

She has a bald spot.

I realize that in the grand scheme of things, this is quite possibly the dumbest thing in the world that I could concern myself with. I mean, really? Most babies lose all their newborn hair… and that’s if they born with any in the first place! And yet, here I am, practically in tears over this tiny little spot on the back of Tessa’s head that has lost its hair.

Up until this point, I’ve had exactly two times in my 2.5 years as a mother where I felt guilt. The first was when we had to take Ellie to the emergency room from a 105 degree fever. I was at Parent Teacher Conferences and was not there to take her or to hold her hand. The second was on December 23, after a day struggling to meet the needs of both my newborn and my big girl. I hadn’t put Ellie to sleep in days, we didn’t get to have our ritual Christmas light-viewing drive, I had a miserable day trying to feed Tessa, and I thought that she wouldn’t be home in time for Christmas.

Outside of those incidents, I’m not one who has struggled a lot with guilt. And yet, here I am, focused squarely on a tiny little bald spot. To me, though, that bald spot represents all the times that I have washed the dishes rather than giving Tessa her Tummy Time. It’s the extra five minutes I spent in the shower while she slept in her bouncy seat. And I know it’s impossible for both of us to work on her “skills” at every moment, but I wish that I didn’t have to see the
physical evidence of my prioritizing on the back of her head.

Then again, the front is pretty epic, isn’t it?

20140216-183659.jpg

1 Comment »

Happy Valentine’s Day!

I adore my little girls… but today isn’t about them. ¬†So humor me here while I take 5 minutes to pay homage to my partner in crime (in pictures):

 Image 

(thanks,¬†http://www.snotm.com/ ūüôā

In our childfree days:

Image

We laugh, a LOT.

Image

He’s a wonderful, supportive, loving, helpful, fun, funny, kind, and caring husband and father… and I am thankful to have him in the trenches with me.

ImageImageImage 

Love you, Jefe!!

5 Comments »

Pity

Tessa had her first eye doctor appointment yesterday! ¬†There are a variety of eye issues that kids with DS are more likely to have. ¬†Most commonly, we’re talking about nearsightedness, but they also check for glaucoma and cataracts, cross-eyes, and clogged tear ducts. ¬†Clogged ducts are common in all newborns!! ¬†Tessa has one, as did Ellie, but she passed the rest of her exam with flying colors.

As a part of the exam, Tessa had her eyes dilated. ¬†Because of the weak dosage used on little babies, we had a considerable wait before she could be seen. ¬†The eye doctor’s office has a “special” waiting room for their children (though I wonder if they just keep us separate to keep the other patients less cranky!). ¬†Another mother in the room was holding a little boy who looked about 6 months old and she struck up a conversation with me. ¬†This seems to happen to me a lot… I know the life stories of a lot of strangers and Gina was ready to tell me hers, too!!

As the conversation continued, she told me about her little boy, Robby.  Remember that I thought he looked about 6 months?  Well, in actuality, he was 14 months.  Robby had been born without a left kidney, without a left lung, and with severe heart defects, all of which had not been diagnosed prenatally.  When she brought her concerns to the doctors three weeks after his birth, she had been dismissed and it took considerable effort for him to receive any care.

(As a side note, this story was so unbelievable to me that I came home and googled if someone could survive with one lung.  It is possible.  In fact, the Pope only has one lung!)  

¬†Robby takes all his nutrition through a feeding tube, has had heart surgery and multiple hospital stays. ¬†She told me about how he is now terrified of doctors, how he can’t sleep more than an hour at a time, how she feels like she is neglecting her five other children… my heart ached for this woman!

As the conversation eventually turned, Gina wanted to know why I was sitting in an eye doctor office with a newborn baby.  Not thinking much of it, I just told her that Tessa has Down syndrome and needed to be checked to make sure her eyes were working.

I will never forget the look on this woman’s face. ¬†She looked so sad!!!!! ¬†And I was tongue-tied. ¬†How to respond?? ¬†I’ve blogged about this before – that this is not a sad event for us, that we don’t feel hurt or lost… maybe a little confused or overwhelmed at times, but never sad!! ¬†And yet this woman, with the weight of the world on her shoulders, was feeling sad for me. ¬†How does one communicate this joy that we feel to a stranger? ¬†So I just did what any other new parent would do…. I stammered through some kind of weak response and then pretended that I had just received a text message and excused myself from the conversation.

If you’re waiting for me to say something like “just kidding! I was an advocate for Tessa and others with Down Syndrome!” you’ll be disappointed to learn that I literally did pretend to get a message. ¬†And today, I find myself trying to decide how I will approach people with this reaction in my future. ¬†The fact that in some areas of the country, 80-92% of babies prenatally diagnosed with DS are aborted weighs heavily on my heart. ¬†How can I show others what a blessing this will be??¬†

As Gina left the office with her son, she whispered “good luck” to me and gave me a look that said “I am so sorry for you.” ¬†She meant no harm by this, I am sure, and her family is certainly in my prayers today. ¬†But “luck” isn’t what my family needs. ¬†Support is a better word, maybe, and the countless messages of love, hope, and encouragement that we have received from family and friends have made it abundantly clear that we are not lacking. ¬†We have a community behind us!! ¬†My hope is that Tessa’s community will be touched in such a way that people learn to see all babies as blessings in the lives of their families. ¬†Just look at this smile!! ¬†How can you not adore it?!

Image

 

5 Comments »

Snorty McSnorterson

Did you know that Tessa sleeps in our bedroom closet?

Someday, Tessa will move into her crib in the room that she and Ellie will share. I think they will be *great* roomies… However, before she was born, John and I agreed that it would be best for everyone if Ellie didn’t have to endure the sleepless nights like the rest of us. So Tess started in our very small “office” (which is actually just part of our upstairs hallway). When she woke up Ellie one night and no one in the house slept (Worst. Night. Ever.), we moved her to the only place in our house that we had room: the master bathroom.

We felt kind of awkward explaining to our original EI coordinator that our brand new baby was sleeping in a bathroom. She didn’t seem to be phased by it, but we were and that very evening, we cleared out some space in our closet and she’s been there ever since.

So why doesn’t she just sleep in our room? One word (and it’s a doozy): Laryngomalacia.

Say it with me: La ring o malaysia.

If you listen to Tessa breathe in some positions (mostly laying flat on her back), she sounds like she is congested. We spent a few weeks trying to “treat” her congestion with saline drops, a humidifier, every kind of nasal aspirator available on the market… nothing worked. The speech therapist who did Tessa’s initial evaluation told us about Laryngomalacia. It is essentially loose cartilage that causes some airway obstruction when a child breathes. It’s pretty common, and it will most likely go away on its own before she turns one. So if you have the joy of spending time with our sweet girl, don’t worry, it’s not contagious, she’s just a little floppy on the inside. ūüôā

1 Comment »