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

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.

6 comments:

  1. My Ben also had a strong left side preference at 1 year old. We really worked hard at encourage him to use his right hand, etc. and the difference between both sides has diminished greatly at age 2! (without doing tons of extra therapy) Hang in there! By the way, Lauren is ADORABLE!

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  2. You have such a raw yet positive way of sharing the ups and downs. The line "Loving someone and knowing that they will struggle is hard" almost made me cry. I never knew a heart could break so many times until my son was born - not because of him, but for him. Because of him I love more, understand more and see more than I ever thought possible.

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  3. This is a great, honest post. I feel you. I hate those milestones forms. And dealing with health insurance. And trying to find the balance between letting your kid do things at his/her own pace and providing as much support as you can - because you can't get the time back. Praying that you will find what works for you and for Lauren.

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  4. It is never fun when a medical professional reminds us with what we already know. But we also know how far they have come. We've lived through them overcoming obstacles. We want validation and credit for that...we want the focus on that not where they are weak. Lauren is doing great! Do you have the Woodbine books? There are three that are fabulous resources for our kiddos...Early Communication, Fine Motor and Gross Motor for kids with Down syndrome. They all give activities you can do at home. As far as one side being weaker, you definitely don't need extensive therapy, you can do it at home. When playing, encourage her to reach with both hands, grasp with both hands, etc. You are doing a great job!!!! This is just another bump in our journeys!

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  5. I appreciate your blog post more than you can ever imagine. This was a harder week for me as well. I had to give up reading the baby bulletin that updates you weekly on babies development. I think it was one of the moments you just described for me and I tried hard to fight back the tears as I shared with our early on teacher. These are the moments we have to remember to lay at all at the feet of our maker. He is bigger than any physical therapy, insurance and doctor, and he can move mountains if we allow him to. Lauren is perfect and no matter how long it takes her she will be changing the lives around by what she is going thru.

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