Monday, October 15, 2012

Good Advice for Fellow Bloggers

This came across my news feed on Facebook and it seems like such smart advice, I just had to share...

More, please!

Major, Major Brag Time! After months of watching Baby Signing Time videos and working sign language into his day as much as possible, Levi has finally decided he's ready to show us what he's learned. His very first sign. Yay, Levi!!

Learning to sign can be a huge deal for kids with Ds because they often develop verbal communication later, sometimes much later, than many other kids. Sign language can fill in the gaps until they learn to create all the complex sounds associated with speech. Some kids can develop huge vocabularies in sign language - and as they start learning to say the words verbally, the signs will slowly drop off and verbal communication takes over.

So, we've been working forever, seemingly with no results. Until today. It still took some prompting, but he did do the sign without physical assistance - I'd be willing to be that if we really celebrate and reinforce it, he'll start using it of his own accord in no time. And that will hopefully be the beginning of a snowball effect. Hooray!!

Wednesday, October 10, 2012

Photo Opportunity

Today, whilst the Bigs were off at school, the Littles and I went to play with the cousins. They are very close in age and so they should enjoy each other's company, right? They do - as much as any one and two year-olds might.

But when the moment comes to try to capture the moment for posterity, well... you can see for yourself.

Well, this two-out-of-four is a start...

No, you have to stay put

Where are we supposed to be looking again?

Wait! Come back...

Kids! Really...we've almost got it...

Aaand....better luck next time.
Such are the perils of photographing the Littles. They're so cute, I almost didn't mind.

Friday, October 5, 2012

Another New Adventure - for Trevor

Scouting is better than hanging out in a tree all day!

Trevor is going to be joining "The Scouts" - the Cub Scouts, specifically. We're very excited for him and hopeful that this activity is beneficial to him in allowing him lots of practice with socializing with lots of different people. He can sometimes have difficulty understanding and going along with some of the day-to-day rules and problems kids his age encounter. For example, dealing with frustration and learning to talk to friends instead of becoming volatile emotionally has been hard for him. Scouts tries to teach kids that life is about doing your best - not necessarily winning. It helps to teach them how to be good citizens, to be healthy and fit, to have respect and faith. These lessons are accomplished in ways that someone with Aspergers can relate to - they can focus on their special interests and perhaps even pick up new ones along the way.

I found a blogger who lays this idea out very well. Enjoy the read...

Why is Scouting suitable for kids with Asperger's (part 1)

Why is Scouting suitable for kids with Asperger's (part 2)

15 Months Old - an Update

Pondering, "is it too early to be a rock star?"

I usually look forward to the well-child checkups in our family. With Levi, there's usually some apprehension involved though. When you have a child who has developmental delays and is at higher risk for medical complications, you're often left feeling like you're waiting for the other shoe to drop. 

apparently, fishies are funny...

Since Levi has been sick for the last week with a virus his siblings picked up when they went for their flu vaccines the week before, I wasn't sure how much today's visit was going to involve. I knew we were skipping the recommended vaccines. I don't do vaccines when the kids are already sick - it's too taxing to their immune system. So that part was out...

She checked his ears whilst I played "squish-the-baby", a game necessary to ensure proper lack of head and body motion. No comment on his ears, although I'm almost certain they're full of fluid. He hasn't been responding to my attempts to get his attention verbally the last few days. He's so congested, fluid in the ears has to be the reason why... At least they're not infected; I'm certain she would have mentioned that. Challenge #1: complete. Wait - I just looked at the clinical summary. Diagnosis: otitis media chronic serous. That's the big, fancy medical term for middle-ear fluid - all the time. I was right. Too bad. 

some page-turning practice

She checked his teeth and throat and managed not to get bitten. Doc: 1 - Levi: 0. His upper molars are breaching the surface (ow!) and his lower lateral incisors are both through the surface, although the right one is a little further along. His upper lateral incisors are following right along. I imagine in just a few weeks, we'll see the points of those poking through too.

I explained that I just started the process of getting Levi seen at the Eastern PA Down Syndrome Clinic. It's about an hour and a half from our home, but my understanding is that they take a comprehensive look at the child's entire medical history and make recommendations on therapies and other specialists to be seen. I would really like to have extra confidence that we're not missing anything important. I'm already feeling kind of bad that I unknowingly let Levi's ears sit full of fluid for so long because we didn't get his hearing checked at six and twelve months. 

He measured up at 31 inches (oops, try again, Nurse)... 30 inches (15th percentile) and weighed in at 21 pounds, 1 ounce (7th percentile). His head circumference is 17 3/4 inches, which comes out to the 4th percentile. She assured me that despite being very low, they are all right on track for where Levi has been for months. That is still a point I disagree with - I think that Levi needs to try a higher dose of thyroid medication yet. When he started his medication, he experienced an immediate growth spurt. He still has several symptoms of hypothyroidism after about 9 weeks of medication, so I hope to convince the endocrinologist to try the next higher dose and see how he does.

So anyway - that's all there really was to this visit. I gave report on how he's doing in therapy and some of the skills he's learning. She gave him the all clear and we're to come back at 18 months for the next checkup. 
The vaccines on the table for today were for Hepatitis A, Chicken Pox and the MMR. I've already told her that I don't feel comfortable with giving the MMR until he's at least 2, maybe even 3. I'll have to look again at the need for the Hep A and the Chicken Pox vaccines. It's tabled for now.

I caught Levi practicing his proper standing techniques a little.... his standing used to always look like this:

notice the propping of the belly against the table

Now, I'm starting to see more of this:

Space between the tummy and the table;
he's working the core and leg and butt muscles here. Yay!

Late breaking news... got an update from the endocrinologist. Levi's TSH (thyroid stimulating hormone) is down to 3.23. The last test he had was 6-point-something. Prior to that, it was 11.6. So we're definitely headed in the right direction!! My goal is to get it down to between 1.00 and 2.00. From all the reading I've done, people with hypothyroidism seem to have the least issues with hypothyroid symptoms when their TSH levels are in this optimum range. So, I asked for a call back from the endo himself to talk about bumping his medication up to the next highest dose and see how he does with that. I hope he'll be agreeable to my master plan!

Wednesday, October 3, 2012

(almost) Wordless Wednesday...

I've got this "fork" thing licked!

At 15 months old, Levi is learning the Jedi ways of flatware... he's an expert at using a pre-loaded utensil. But he needs a personal retriever as they always get kicked to the curb after each bite!

Monday, October 1, 2012

Down Syndrome Awareness Month has Arrived - A Look Back

October is Down syndrome Awareness Month. Some bloggers will be participating in a marathon blogging session called: 31 for 21, where they blog about Down syndrome (Trisomy 21) for the entire month (31 days). Not me! *insert sheepish grin* I would love to be all that I can be and blog every day...but it just ain't gonna happen for this girl, this year. So... I solemnly vow to blog as much as possible this month... and since today is the beginning of the month, I wanted to take a look back at the beginning of my life with Down syndrome. 

I wrote this post on August 12, 2011, when Levi was just 6 weeks old. My perspective has changed a lot since then, but when I re-read this, it brings back all those emotions I was experiencing - like it was yesterday. Maybe you can feel it too? 

Excuse me, my Mama has something to say...

Looking for a Silver Lining in the Darkness

The day little Levi was born was one of the best of my life. But a dark shadow crept into my heart at the moment I first saw his face; I tried to push it away and focus only on the bright spot - the little angel that had surprised us by arriving three weeks early. 

In the moment I first saw my baby's precious face, I also saw something which terrified me. Upturned eyes, a little fold at the inside corner of the eyes and thickened skin at the back of the neck - they immediately made my thoughts turn towards Down syndrome. "Oh no!" I thought and my heart sunk.  I silently chastised myself for being so critical of this tiny human being and made myself forget about that worry for a few hours. The midwife will surely say something if it was a possibility.

After all the examining was done, she hadn't voiced any concerns about him or his health. She gave him Apgar scores of 8 and 9 and left with full confidence that everything was right in our world. I decided to keep my mouth shut about my concern; I would research it further before mentioning it to hubby as I didn't want to seem like I was overreacting. 

The next morning, hubby remarked that something looked "off" about Levi and I couldn't help but respond that yes, I thought so myself and that I think he looks like he has Down syndrome. I tried to appear calm, like I wasn't a whirlwind of terrified emotion inside, but I don't know if I was successful. Once I had given life to my fear, it became an obsession that possessed me until the midwife returned when Levi was 3 days old.

She examined him again, this time mentioning the single palmar crease on both of his little hands. I told her that I had read they might be associated with Down syndrome and she replied that they could be, but that they're associated with a variety of different genetic syndromes. I wanted to ask if some were worse than Down's, but was afraid of the answer. Levi was somewhat jaundiced at that point and so we talked about trying to get a phototherapy blanket from our pediatrician. I thought that if we needed to see the doctor, then we should get a blood test done at the same time to rule out or confirm a genetic syndrome.

To the midwife, I pointed out all the characteristics I had found on Levi which indicated Down syndrome: the upward slanted eyes, a flattened nasal bridge, epicanthal folds, double single palmar creases, a sandal gap on both feet and a misshapen pinna of the outer ear. I was hoping beyond hope that she'd somehow be able to dismiss all or most of these characteristics as being attributable to being borderline premature or just coincidental. She didn't. She pointed out that his muscle tone was pretty good; whereas, most infants with Down syndrome have hypotonia (low muscle tone) and she said that there was only one way to be sure.  

So we went to the hospital for a blood test to find out whether Levi needed treatment for jaundice (it turned out he didn't) and I continued to panic silently about the flaws of my no-longer-perfect little boy. I'd hold it together for a while and then I'd just fall apart, crying until my head hurt. I haven't felt heartache like that since the days when Katelyn was hospitalized after her birth and I honestly felt like she might never come home to us.

But this was different; Katelyn's issue was simple and resolved. This (probable) diagnosis lingers and festers forever - or so I thought. We had blood drawn for a karyotype the next day. The nine days we had to wait to get those results were some of the worst in my life. I wanted to keep talking about it with hubby, to work through all my concerns. I felt like if I gave voice to them, they'd seem more irrational and less scary. But hubby and I are different people who approach these things differently. He didn't want to deal with the issue until we knew for sure that Levi's test was positive.

Thankfully, I have wonderful friends who found a sensitive way to reach out to me to find out what was going on and if we were okay. They were a sounding board for me for several days and helped me hang on to a bit of sanity in an otherwise insane moment for me. And while all of this was going on, I'm trying to make myself take time to enjoy the newborn phase with Levi. I know that this is my last baby and that I will regret it immensely if I look back and only remember the darkness of these days. After all, despite whatever genetic flaws this little person might have, they are not his fault and they do not change who he is. He is my son and I love him intensely. I just have to come to terms with the inevitability of this diagnosis. 

On July 5th, I call the doctor's office and confirm with the nurse that the blood test results are back. She says she will have the doctor call me and so I wait. Finally the phone rings and with trepidation, I answer it. I don't want to because hubby is at work and I don't want to be the only one to know. She says the words I know are coming, "The results are positive for Trisomy 21, otherwise known as Down syndrome." But knowing they're coming doesn't make them sting any less. When hubby walks in the door less than an hour later, he looks at me and I start crying and he knows. He is able to console me and once again, he is the stoic one, my rock which I can lean on when life gets so hard.

Amazingly, this is a turning point for me. The not knowing was so much harder than this. We start seeing specialists and confirm that aside from a slight heart murmur and a small atrial septal defect known as a patent foramen ovale (PFO), he currently has no physical complications as a result of his extra chromosome. The cardiologist wants us to return when he is nine months old to verify that the murmur is gone as he expects and to evaluate whether the PFO has resolved or at least stayed the same size. The opthomologist only detects farsightedness, which is normal for such a young infant and so we're to return at the age of six months for another checkup. The genetic specialist gives us a whole collection of information, which is mostly overwhelming and is still sitting in it's envelope to be addressed at a later time.

Right now, we know that we have a little boy who has three siblings who adore him. Even little Evan, so sometimes appears jealous of Levi seems to care for him enough to drop toys onto him from the other side of the pack-n-play! Katelyn loves to mother him and protect him from Trevor; Trevor loves to tell people how cute baby Levi is. Levi is one lucky little boy because he has a mother and a father who will do anything to help him succeed and despite our forboding and fear of the unknown which lies in wait for us, we are determined to help him achieve whatever his maximum potential may be.

We're still dealing with the shock of this unexpected diagnosis; some days are harder than others. The process is like sorting through the stages of grief. There was denial and anger, bargaining and a form of depression. Eventually acceptance is reached and I don't know that we're fully there yet. We're getting closer every day and seeing Levi's personality emerge only reinforces our love and our determination. 

With taking action, particularly in getting Levi enrolled in Early Intervention to begin physical therapy services, I feel less helpless - less like this is something that has happened to us. I can see a little bit of Levi's personality beginning to emerge and the more I see, the more excited I get about the prospect of our future as a family. I am starting to adapt to our new normal (though I'm sure it will be ever-changing) and realize that although it may be somewhat different than what I initially envisioned, it can still be great! He gives me courage...