Babies, birthdays and big milestones

In addition to our high school reunion this past weekend, we were able to stop and visit my brother and sister-in-law, where I met my new nephew for the first time. I’m already missing sweet baby Luke.

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We also got to celebrate Corin’s birthday again, this time with Jon’s side of the family. Corin had his cake Saturday night, his Mimi made a big birthday brunch on Sunday, and then he opened gifts. (One of his gifts, an awesome Radio Flyer wagon, was already in commission outdoors by then.)

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He really hated the food.

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The doctor kit is a huge hit. We passed a college the other day, and I explained to Corin that it’s a school where people learn how to be things like lawyers, musicians, business people or doctors. “But,” he says, “I am already a doctor.”

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This exciting box…

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…turned out to be this VERY exciting gift.

It was a fun and very full weekend. Lina napped for seven hours a day the first three days we were home. I think she has finally recovered.

Which led me today to decide it was time to make up a batch of homemade oat cereal and finally wade into the waters of solid foods with baby girl. Given the difficulties we have had with feedings in her first six months, and knowing this can be a challenge area with DS, I wasn’t sure what to expect for our first go. As it turns out, she finished the small bowl I’d mixed up and actually seemed to enjoy it. We may have a challenge with that tongue wanting to push the food back out, but I’d say that today, Lina rocked this milestone.

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What? Do I have something on my face?

Of passing years and ear wax

We arrived home last night from a weekend in North Georgia, where Jon and I attended our 15-year high school reunion. (Every five years, I am reminded how nice it is that we share our graduating class.) The showing was small, but we had fun catching up with former classmates and revisiting the campus where we met and spent a lot of happy times. It usually seems a lifetime ago, but being on campus, where so much is the same (including that awful mural our class painted in the religion room), it felt like yesterday. I badly missed someone, though. Jennifer, my best friend from those GCA days, died this past November. As I flipped through yearbooks, I paused over so many pictures of a cute, smiling blonde who also occupies so many of my memories from that place. She should have been there, flipping through those yearbooks with us. I talked about her a little, but I thought about her a lot.

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In today’s news, Lina had her first appointment with a pediatric ENT at Vanderbilt. (Actually, we were scheduled to meet with the nurse practitioner.) It was not a picnic for either of us.

You may remember that Lina failed two newborn hearing screens in the NICU. She was then referred to the audiology department at Vanderbilt for a follow-up screening that showed moderate conductive hearing loss in both ears. This means something is preventing the sound from clearly reaching the ear drums: in this case, likely a build-up of fluid. The audiologist described Lina’s hearing as sounding like she was under water. Another follow-up screen showed continued blockages in both ears, as did a repeat test today.

I’ll try to shorten our 3 1/2-hour experience to the cliff notes. We met with the nurse practitioner, who indicated we would be scheduling an appointment to place ear tubes to drain the fluid, which should significantly improve Lina’s hearing. She walked me through the relatively simple procedure, answered my many questions thoroughly, and then sent the nurse in to provide further information on follow-up care. We were then to meet briefly with the ENT himself, who would be the one to do the procedure. He was brusque and rushed, but the summary is that he was concerned about the size of Lina’s ear canals. He wanted to verify they were actually big enough to place the tubes. He was not able to see to the ear drum due to a build-up of wax. Thus commenced a thoroughly unpleasant experience in which he used a metal tool and then a suction device to remove wax from a strapped-down, wailing Lina’s ears while the nurse held her head still and I wiped her tears (and struggled to hold myself together).

The final verdict is that Lina’s ear canals are definitely too small for tubes. Her canals will grow with time, so we will go back in August for a re-check. In the meantime, we have been referred back to the audiology department for a bone anchored hearing aid. In adults, an implant would be attached to the skull bone, but in Lina’s case, they will use a headband to hold the device in place. I have more learning to do about this – an informational DVD is awaiting my attention – but the gist is that this aid will help bypass the blocked canals to improve Lina’s hearing at a time critical to speech development.

It was a tough day. I am feeling better tonight, as I’ve had time to process and recover from the trauma of the afternoon. We know Lina’s diagnosis of Down syndrome will mean a series of challenges to be faced in their time. This is today’s. We will do whatever is necessary to give her the best chance of hearing and learning speech.

A few bright spots of the day: Corin was so, so well behaved through that entire appointment, brandishing his new toy stethoscope in the real doctor’s office. And all the office staff thought Lina was so cute. Because, let’s face it, she is.

A blessed Easter

Today is a good day.

First, it’s Easter, the day we celebrate the fact that our God is bigger than death or anything else we face in this life, and that we will have a perfect future because of what He did for us. It really doesn’t get any better than that.

Then, in perfect keeping with Easter’s message of hope and new life, our family celebrated the arrival of my newest nephew, precious baby Luke, this morning. His mama was an awesome soldier, powering through 16 hours of unmedicated labor, and now, her 8 lb. 2 oz. sweet reward. (That proud daddy is my brother.) I can’t wait to meet Luke this next weekend.

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Corin helped color eggs on Thursday, and today he had a blast with his Easter basket and our little indoor egg hunt. (Nature did not cooperate with our outdoor plans.) Our lunch of egg salad, berries and whipped cream and other sundries was the perfect wrap-up before Grandma and Grandpa headed out of town to meet their brand new grandson. Happy Easter, everyone!

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P.S. Lina’s first tooth broke through today. Just thought that deserved a mention.

Lessons in hippo inclusiveness

Corin has a plastic hippopotamus who lost a leg on the front lines (otherwise known as the treacherous ground between Corin’s door and any other spot in his room). Our conversation about this hippopotamus went as follows.

 

Corin: My hippo is brokted. His leg is missing.

Me: I see that. That’s too bad. But do you think he can still do a lot of the things hippos like to do?

Corin: No….?

Me: I bet he can. He might have to work harder or do things a little differently, but I bet he could still figure out how to eat and swim and play with the other hippos, don’t you?

Corin: Yeah! He can still swim!

 

I felt quite proud of this teachable moment. As it turns out, however, hippos don’t actually swim. It also occurred to me as I was talking that in reality, a wild hippo missing a leg probably wouldn’t survive very long. My dad provided the obvious answer: this, of course, is a zoo hippo.

Rocking our socks

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I solicited mismatched (or, as Corin calls them, “matchbox”) sock photos from friends and family in honor of Lina’s first World Down Syndrome Day, and the response has been so awesome. I could say a lot of things about the metaphor of the fabulously fun and very different socks that are still fundamentally more alike […]

Victory is mine… er, his!

Today I took both kids to the pediatrician for their six month and three year check-ups, respectively. Then I told Corin I would take him to lunch at Red Robin. The reason? My son is finally potty trained. No, let me restate: MY SON IS FINALLY POTTY TRAINED!*

It only took a year. Yes, you read that right. A year.

In retrospect, it probably would have been better just to wait. We had made some (very slow) progress, and then the baby came, and things backslid for months. I’ll spare you the ups and downs of our ordeal, but I will say that my dear friend, Lila, saved the day with the suggestion I try boxers instead of briefs. Parents in the boy potty training trenches, a word of advice: If your child is accident-free when running naked but has accidents as soon as you put him in underwear, get thee to the nearest Walmart for boxers, pronto!

You can understand, given this experience, why I physically cringed when I read that children with Down syndrome can be more difficult to potty train. But then, as my dad said: “More difficult than what?!”

In any case, Corin has been more than a week completely accident free. (I am still a little afraid to type it.) So we had our victory lunch today. That bleu ribbon veggie burger never tasted so good.

Clearly, the burger in the photo is the non-veggie variety, but you get the picture.

*Disclaimer: We are not in any state to tackle nighttime potty training. All references to potty training refer to the hours Corin is awake. We will be tackling sleep potty training when he seems ready or reaches the age of 17, whichever comes first.

Happy birthday, firstborn

March 18 three years ago brought me this scrawny, goopy, cone-headed bundle of wonder:

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That day, I met my firstborn, my son, my introduction to motherhood and a love so much bigger than words.

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As I watch my 3-year-old race around the house and listen to him chatter about his latest imaginary adventures, it’s hard to remember that tiny body I cradled in the hours after his birth: A stranger, so new, so alien, so helpless. How much has changed in three years, for him and for me.

Corin’s birthday weekend began with an awesome afternoon playing with his cousin Benjamin, who was staying with Grandma and Grandpa. Then yesterday, I summoned my energy reserves and threw a Curious George party, because I’ve learned that nothing compares to seeing my little boy having fun. He did, and it was so worth it. All these little ones are growing up so very fast. They’re learning to interact and crack each other up, and it is awesome.

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Our best attempt at a family photo

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The birthday boy making use today of one of Grandma and Grandpa’s gifts

Look closely at that family photo, and you’ll see two very tired adults who are navigating our share of stressful times on less sleep than we’d like, a wound-up little boy who had banged his head on the edge of his bed hours before the party, and a baby who was rapidly reaching the must-get-to-bed-now point. But, it is our family. That was not always a given for us. The day of my son’s birth will forever be the day we moved from hopes and dreams to reality. Life is hard and messy. There is no avoiding that. But both of my children are utter miracles. Today is Corin’s day, the day we celebrate the gift he is to our family. I cannot imagine my life without him, and I am infinitely grateful to a good God that I do not have to. My heart really does beat in that sweet, shy, funny, smart, energetic, quietly stubborn little guy’s body, and there’s nothing for it but to keep loving and praying like crazy.

Happy birthday, son of mine. How glad I am you are here.

That sweet face – 6 months

Wednesday was Lina’s half birthday.

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Eline at 6 months:

  • Weighs close to 14 pounds
  • Easily rolls back and forth to stomach and back, gets her knees up in a crawling motion, bears weight on her feet and sits for longer periods with support
  • Generally loves to be held, cuddled, talked to and played with and will usually give big smiles for activities like bicycle legs, clapping hands, being lifted up in the “flying baby” position, or being pulled by her hands to standing
  • Enjoys her play mat or bouncy seat for periods of time
  • Has started paying a lot more attention to big brother and will follow him around the room with her eyes and will crane towards his (usually noisy) location
  • Can hold lightweight toys for increasing periods and manipulate them with a little more precision
  • Gets 5 oz. (occasionally 5 1/2) of formula/breast milk five times a day – generally about 4 hours apart – but quality of feedings is inconsistent, and she is easily distracted by her environment
  •  Has had an inconsistent daytime routine but seems to possibly be settling down to two naps in her crib at around 10 a.m. and 1:30 p.m., with the afternoon nap being quite a bit longer
  • Goes to bed for the night around 6:30 or 7 p.m. and sleeps 11 – 12 hours with one or two “dream feedings” in the evening (also tends to wake around 5:30 a.m. and chatter a bit before going back to sleep)
  • Starts the night in her crib but still goes in the cradle in our room when we go to bed
  • Is struggling with constipation issues, which I understand are pretty common with Down syndrome
  • Has hated her baths, but these tips have helped a great deal: less water in the tub, and a warm, wet hand towel draped over her torso to provide a sense of security
  • Wears 3-6 month clothes and size 1 shoes for her teeny, tiny feet

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Half a year with our little girl… I am frequently startled by how quickly the time is going. Jon likes to tell people Lina is a constant source of pride, and it’s true. She is healthy and doing so well, and her smiles light up our lives. We feel incredibly blessed.

A friend recently posted a link to this video, and I have taken the message to heart. Lina has done so well, and we are so pleased to have not yet faced any real delays in her development. But I realized that often, rather that simply living that gratitude and joy, I am at the same time steeling myself against future challenges. I don’t want to live life with Lina that way. I don’t want to live LIFE that way. Jesus asked, “Who of you by worrying can add a single hour to his life?” I’ve been making a conscious effort to let go of worry for the future. Who knows what tomorrow holds, for Lina or for any of us? She is beautiful and smells of sweet baby. She has perfectly chubby rolls and fuzzy blonde hair, a sweet, happy voice and is learning and growing every day. I am content.