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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Friday, March 29, 2013

She's Mine.

Happy Heart Day Lauren!

One year ago today Lauren had open heart surgery to fix her broken heart. It was by far the most difficult day of my life but today I can see it as also one of the best. It's the day my daughter was returned to me and the day I knew she was really mine. Mine to keep.

While Lauren was in the hospital I didn't hold her near as much as I should've. I was so afraid to get "too attached" to this tiny little soul who just might not make it. "What if she dies?" Those were the words I spoke to myself daily but never quite had the courage to say out loud.

Lauren's 5 weeks in the hospital were terrifying, to say the least. I barely slept. I barely ate. But hey, great way to lose the baby weight, right? I was so afraid to fall in love with a borrowed baby. I'm sure this sounds horrible but she didn't quite feel like mine until we were past the danger zone. Open heart surgery on my six week old daughter. I couldn't let myself go there.

During her surgery I was a zombie. I didn't talk to anyone. I didn't make eye contact. We had tons of family there to support us and we really appreciated it. But I could barely acknowledge what was happening. I found myself morbidly wondering what exactly a six week old baby looks like on the operating table with her chest cavity cracked open. What would her face look like while she was under anesthesia and on cardiac bypass? How did the surgeon feel knowing he might be the last person to see her strawberry sized heart beating? Would her body know what to do after surgery when the bypass machine was turned off?

When the nurse came in to update us and to finally tell us that she was out of surgery and that she was off bypass the flood of emotions I'd been storing up let loose. I felt like I lost a thousand pounds.

It's hard to explain and I know it doesn't seem like it, but my very soul is at rest today. 12 months. 52 weeks. 365 days. One year.

One year since Lauren Hope has been mine.

What a difference a year makes!

Saturday, March 23, 2013

Preschool

We received some great news while on vacation!

Ryan got a spot at the preschool I REALLY wanted him to attend in the fall! They work closely with the kindergarten teachers in the district to get them prepared for that transition. It's expensive but it's a great school. I'm so happy!

:)

Thursday, March 21, 2013

Heaven

On the Down syndrome message/support board I post on somebody recently posed a question;

Will our kids have Down syndrome in heaven?

Will Lauren have Down syndrome in heaven?

I one hundred percent believe that she will. I would be devestated if she didn't. In heaven we will all apparently be healed of everything wrong and we will be restored to how God made us.

God made Lauren with an extra chromosome. I can't even begin to think what she would look like without it. Would her almond shaped eyes still crinkle in the corners when she smiled? Would her neck still be extra kissable? Would her arms still be just a little short? Would her hair still part naturally on the side? I love all of these things about her.

What about her personality? Would she still wave at strangers? Blow kisses to street signs? Would she be as determined and stubborn if she didn't have to work quite as hard?

See, I can't imagine that Lauren would still be Lauren without any or all of these things. And who am I to decide if Down syndrome gave her any of these qualities and quirks? So, will Lauren be "free" of Down syndrome in heaven?

I think it's far more likely that all of us will have Down syndrome in heaven.

Back from the beach!

Lauren and I just got back from our girls vacation! What a wonderful way to celebrate World Down Syndrome Day :) Last year we celebrated in Lauren's hospital room. I liked this year much better.


Eating pancakes for breakfast

Playing with her grandpa!
 
Ready to go have fun!

Looking for mermaids at Lover's Key beach.

We befriended this little guy
 
Ready to go to the beach!

It wasn't very sunny but it was still beautiful!

I'm happy to announce that we're adding to our family! Meet Gracie! Ryan is obsessed with her, as you can tell. She's my parents' dog and will now be living at our house!
 
 
We had a great time but it feels so nice to be back home!

Tuesday, March 12, 2013

Smarty Pants!

Lauren had another eval by EI today to officially qualify for PT and update her IFSP. Ryan helped the whole time, it was adorable!

She is scoring in the 6-9 month range for social skills, cognition, gross motor and fine motor. She's scoring in the 12-15 month range for feeding and speech! Eating is her strong point (she gets that from me) and has two signs and two spoken words. Not bad for 13 months old!

I'm so hapy with this evaluation. There were no surprises, I knew that's where she'd score for everything. I'm thrilled that PT starts soon! It will start when we get back from our Florida vacation in 2 weeks.

I am so proud of her and everything she's accomplished since her last IFSP meeting! I remember thinking that she'd never be able to sit up by herself and now she has perfect posture. I also remember laughing at the though of her self-feeding. Today she ate a grilled cheese sandwich for lunch!

She had some fluid in her right ear and scored mild-moderate hearing loss in that ear last week at the ENT. Well she was super cranky this week and one morning woke up with a lot of green/orange crusties in that ear. I think maybe the fluid was just draining because she seems to respond to voice much better on that side now! And she has no symptoms of an ear infection so I don't think that's what was going on. She's also back to her normal, chatty, happy self. She keeps reclining on one side with her head resting on her hand, which makes her look like a sassy mermaid. It's hilarious! I keep trying to get a picture but I think she's developing her brother's spidey-sense about cameras.

I am just so happy today, despite the fact that I am functioning on coffee alone since I worked last night and tonight and Greg's a bit under the weather.

Sometimes a baby just needs some mommy snuggles! Or maybe it's the other way around :)

Thursday, March 7, 2013

Woo Hoo!

Lauren had her ENT appointment this week where we were going to schedule surgery to put tubes in her ears. She's never had an ear infection but she has fluid in her ears and has tested with hearing loss.

She actually tested within normal hearing today with the audiologist. What?! I know!

She has fluid in the right ear with some diminished hearing but right on the cusp of normal. Her left ear is totally clear. Crazy! She was actually so tired after the audiologist that she slept through the ENT appointment. She didn't even wake up while he looked in her ears and usually fights him like crazy.

Our ENT said he usually jumps at the chance to put tubes in the ears of kids with Down syndrome because this is such a critical time for language development, but Lauren really doesn't need them yet.

"She'll do great without the tubes so far. Well, she'll do great no matter what actually!"

THAT is the kind of doctor you want taking care of your kid, huh?

Tubes are really not a huge deal, I had them twice. But it's still surgery and I want to avoid it as long as we can.

Lauren has also started this new game and it's SO CUTE! She sucks her thumb. Then she tries to stick her cute little thumb in your mouth so you can suck her thum. Adorable! And if you don't play along she wiggles it around until you do. She was pretty disappointed when my mom's dog wouldn't play along yesterday, haha.

Wednesday, March 6, 2013

It's apparently "Stop using the R word day".

Today is "Stop using the R word day". Or something.

I definitely understand the sentiment behind this, I really, really do. But doesn't the manner in which words are intended make a bigger difference?

What about special? What about special? The italicized word means something totally different. Though, in my opinion, when not used maliciously, is not offensive in the least. I have a cousin who is special. She's also special. I can promise that nobody in our family ever meant anything maliciously when referring to Debra as special. She is special, she's amazing! She also has some sort of intelletual disability.

It can also be generational. I met a really nice guy at ABC Warehouse who was just in love with Lauren. He said, "Two of my siblings are mentally retarded and I had a wonderful childhood."

Offensive? Heck no. Not even a tiny little bit. This guy's story left me feeling excited!

Mentally retarded, when used medically doesn't bug me at all either. I'm in the minority here, I know. It's still a legit medical term, even if it isn't "pretty" and makes us afraid of the future. It might not be in the new ICD 10 system, but I promise it is still used by doctors and nurses everywhere. At least it is where I work.

My fear is, what happens in 50 years when people start using "intellectualy disabled" as a slur? Then do we change the accepted vernacular again?

I'm just afraid that people will say the only thing worse than "retarded". Which is....nothing. Saying nothing is worse.

I don't want Down syndrome or any other disability to be taboo to talk about, simply because people don't know exactly the right way to say it. I feel the same way about Down's, Down's syndrome, etc. Doesn't bug me. I'm just happy to hear it said out loud.


DISCLAIMER:

Clearly, people need to be smart and use common some sense here. Retard is never okay when referring to someone with a disabililty. "Oh my gosh, you are so retarded!" to a friend is also not really okay. (Though I can't personally muster up the ability to be offended, thought I choose not to use it out of respect for my child and her friends.) There are better word choices!

DISLCAIMER #2

I'm the minority here, so if you happened to stumble upon my blog when searching for "the best blogs ever" (ha!), don't use the term Down's, Downsy, etc.. when talking to other parents of kids with Down syndrome.

DISCLAIMER #3

I really do get why people hate the R word so much and I am in no way meaning to minimize those feelings. I'm just sharing my own feelings.

DISCLAIMER #4

Just kidding, there is no disclaimer #4

Friday, March 1, 2013

Smack in the face.

Lauren had her 12 month pediatrician visit yesterday! Overall a good appointment, minus the 5 (yes, five!!) shots baby girl had to get. She handled it like a (screaming) champ and was waving at the staff on our way out. Then she followed it up by a four hour nap once we got home. My kids always nap after shots!

Health-wise, she's doing awesome. She weighs 17lbs on the dot. She's in the 45th percentile for height and weight on the Down syndrome growth chart, which U of M still uses (not all hospitals use it since it's apparently being revamped by the Down syndrome powers that be). The doctor is fine with her drinking coconut milk and eating everything in sight.

They gave us the milestones check list to fill out. Uh, yeah. I think I could check yes to maybe 1/6th of the form? What they SHOULD ask is "Is your baby the cutest baby you've ever seen?" Then maybe I could enthusiastically check the yes box without exaggerating to make myself feel better.

Lauren's pediatrician feels she has significant low tone in her legs. She also suspects something else going on because she is very clearly left handed at this point. Apparently kids are still supposed to be using both hands/feet equally at this age. Lo is not. She also did not want to flex her left foot with pressure, she pointed it down. She has diminished reflexes on the left side even though the doctor expected stronger reflexes. All signs point to "something else" which means we're not sure what is going on! Her doctor wants her to have fairly aggressive PT and OT to work on this.

Hmm, doctor lady, who is supposed to pay for this?

We just got approval through Early On for PT. Nobody mentioned OT. I'm not even sure when PT is supposed to start. They don't do home visits over the summer. If we get approved for both we'll be lucky to get it once a week. Health insurance typically doesn't cover this kind of therapy for kids (or anyone) unless there is a preciptating even like surgery or an injury. Meaning we're supposed to pay out of pocket.

I forgot to mention, I've recently become independently wealthy! Oh, wait. Nevermind. That's just wishful thinking. I'm not a basketball wife. Or a Real Housewife of Wayne County (LOL! Can you imagine?)

We're going to try to get our health insurance to cover it. If they won't (trust me, they won't) I can try to get her Medicaid (she has it as a secondary) to cover it. If all else fails....all else fails. We can't afford private therapy on our own. It's crazy expensive and we're still a few thousand dollars in the hole for previous health issues. Nobody ever said kids were cheap! I'm convinced this is why God makes them so cute.

I'm not a huge believer that extensive therapy makes a giant difference. I think love, inclusion in family events and just living life is great therapy on it's own. The problem is that we can't get this time back. If we wait until she's 5, 10, 20 to work on this stuff the proverbial ship will have sailed. So the mommy guilt is creeping in. Am I doing enough? Can I do enough?

Yesterday was hard for me. It's hard to hear that she's very delayed. It's hard to hear that she has significant low tone. Most people who get a diagnosis of Down syndrome for their child will tell you that at one point they were convinced that their child would be the smartest person with Down syndrome EVER! But then optimism meets reality in a street fight and there are no uniforms, rules or referees. Somebody's going to get hurt and there might not be a clear winner. But we pick ourselves up, grab a band-aid and move forward.

It was kind of like being smacked in the face and told, "Hey! Guess what? You might've forgotten, but you have a kid with a disability!"

Why did this make me so sad? I've known this since before she was even born. But it's so easy to hold on to the notion that "it can't happen to me". But it does.

It can. It did.

I don't mean to sell Lauren short. She's an awesome girl and can do whatever she sets her mind to. But it's a reality I have to accept that she is different. She has a disability. We can dress it up and call it "differently abled". Or say "she'll get there". And you know what? She will. But sometimes we all just want our kids to have things easy. Sometimes having a kid with special needs is hard. Hard for us, hard for them. We don't always like to admit it because it might seem like we're complaining, or we might sway somebody to make a different decision than we did. But it's hard sometimes.

I love her so much it hurts sometimes. Loving someone and knowing that they will struggle is hard. I wouldn't take Down syndrome away from her. Girlfriend owns it, believe me. But I wish I could take away the struggle and make life just a little bit easier.