3/15/2011

Lovely Limbo Land
























Back in August, as I prepared for Sadie's two-month checkup, my only concern was the possibility that she was developing a flat spot (plagiocephaly) on her head, just like Adam had at her age.

That appointment marked the end of any carefree Sadie days.

I haven't blogged about this because it is complicated and still far from being resolved but now I feel ready to try.

Sadie's pediatrician did confirm a mild case of plagiocephaly and recommended physical therapy which we later followed up on. As the routine checkup was ending, the doctor turned and asked if my or Keith's eyes were blue like Sadie's. At first I thought she was referring to the color of our iris (irises? IRI?) but finally understood she meant the white part, or sclera of the eyeball.

Mine were not blue so she said to check Keith's eyes when I got home and we could discuss it at our next visit. "But, what would it mean if his were not blue?," I asked. " Well, it could be a sign of a disease which effects the development of collagen in your bones. It is very rare so try not to lose any sleep over it."

Yeah, thanks for that.

Once home, I was not reassured by the color of Keith's sclera (which were normal) or by the ever so helpful elves of Google. The name of the very rare disease: Osteogenesis Imperfecta,(free nightmares found here) or brittle bone disease.

I lost a little sleep over that. And I began to handle Sadie with extra care. With fear and trembling, in fact. And tried not to feel robbed of my last-baby joys.

I had noticed one other thing about her since day one. Her joints popped frequently and easily. If I shifted her weight while feeding her, her shoulders cracked so loudly, I expected her to scream out in pain. It never appeared to bother her though and later her doctor said that could be normal for her age.

At her next appointment, Sadie's doctor recommended we see a specialist, if just to get some reassurance and rule out any problem.

We had to wait a couple months for an opening and in the meantime kept our seats in the roller coaster of fear, denial and optimism. If she did have a type of OI, it was certainly a mild one since she had no broken bones or other obvious markers.

Turns out there's a whole lot of fun and exciting syndromes that like to hang out in the blue sclera club. Deformity, pain and shortened life expectancy, take your pick! A doctor who was filling in for our usual pediatrician told me about another possibility called Elher Danlos (more good times, here!). She was attempting to give me hope, because a mild version of this disease is much more preferable to mild OI.

Like I said, complicated.

In November, we dragged all the kids, except Ethan who was in school, down to Detroit to see a specialist. For the most part, we left feeling reassured. The doctor said he could see nothing obviously wrong except for her sclera which were a little bluer than normal and could still change over time, generally by one year of age. With these kinds of diseases, the symptoms are the biggest diagnostic clues and until the time something suspicious presents itself, such as an easily broken bone, it is best to just wait and see. He didn't find our reports of her flexibility or popping joints impressive.

All good.

Sadie just turned nine months and as much as I try not to obsessively check out her eyes in every possible light, I still take note of them. They are still the same, as far as I can tell.

Her joints still pop, although maybe not as much. She is still hyper flexible.
In fact, almost every night she gets her legs caught up inside her sleeper because she pulls them up close to her chest. I keep trying to find things she can wear that prevent this.

She was slow to roll over and even though she finally did right after she turned six months, she still won't do it very often. If I put her down on her back, she's content to lie there for the most part. We work to motivate her to roll and to creep while on her stomach.

I worry about whether I should be worried or not.

Tomorrow is her nine month checkup and I'm hoping I'll get some answers. To be honest, I'm not even sure what the questions are any more.

Updated to add:
I realized after I posted this that I probably painted a bleaker picture than I meant to. We are not sitting around feeling gloomy, for the most part. We feel hopeful.

Sadie is not in any pain and seems happy most of the time. Other than the milestones I mentioned, she is developing normally.

It's just hard to have unanswered questions.

10 comments:

Carrie L-F said...

Of course you are worried! You're her mother...how can you help it? I convinced myself a month ago that Eli had bacterial meningitis because he had a bump with an open cut on his head, a sore neck, and a rash (which turned out not to be a rash at all, but red marks from spending time in front of the space heater). I can't imagine how you must be feeling with this! I would try to stay away from Dr. Google, though...he is a quack and can only make you feel more desperately worried than you need to. We'll pray for you guys...please keep us posted. P.S.--you write so beautifully!

Liane said...

Thanks, Carrie. That means a lot coming from a writer like you! Glad Eli is ok. The worries never seem to end, do they?

I will keep you posted for sure.

Carrie L-F said...

Oh, Eli is fine...I related that just to convey that worry is part of what we do, even when we worry over what ends up being no big deal. What you are potentially dealing with is a big deal and it's no wonder that you are worried and that you keep checking her over. She is blessed with a GREAT Mom (and Dad, too) and that's part of what will get her through, regardless of what she may have to face in life, both now and later. Lots of love and prayers.

Heidi said...

The Google elves are evil.

So why did you drag all of your kids along to that visit when you could have brought them to me so you could focus on Sadie? Mad at you for that one, my dear...

You cant worry about whether you should be worried or not, you're her mom to worry is part of nature. That is what all of your friends are for.. to listen to your worries, to worry with you, to celebrate good appointments with you, to cry when you get unanswered questions leaving frustration. Even if only sometimes it seems we can only seem to connect via blog, we are always here for you and always thinking about you.

lis said...

Yes, they are hard! Praying for you over here. Peace that doesn't make sense! :O)

the Joneses said...

Dear Trials and Tribulations Dept.:

Could you please check your records? Liane seems to have received more than her allotment in the Childhood-Worries category over the past decade. I think some of those resources should be diverted elsewhere. Thank you for your consideration.

-- SJ

gretchen said...

I love you Liane! I hate stuff like this, especially the whole *unknown* aspect. Yuck! We'll be praying, of course, and do keep us posted when you can.

Love you so much!

Kevin said...
This comment has been removed by the author.
Chrissy said...

Liane,
How can we help but worry when it comes to our children? I do know that the Lord loves our children even more than we do and that He does want good things for us and for them. Remember God has hand picked you to be Sadie's mother... He knows exactly what her needs are and that you and Keith are the exact right people to entrust her earthly care to.

I was very touched by the card you sent us to remember Isaiah with us.

1 Peter 5:7
Casting all your care upon him; for he careth for you.

Psalm 55:22
Cast thy burden upon the LORD, and he shall sustain thee: he shall never suffer the righteous to be moved.

Loving you guys and praying for you all! Praise the Lord that He knows what He is doing...I pray for His peace to carry you...

Emma C said...

I've been a little behind on my blog-reading with the move going on, so I just saw this. I'm so sorry for your worries and anxieties! I'll be keeping you and Sadie in my thoughts and wishing for un-blue sclera.

And hey, that picture of her at the top of the post is super adorable. :)