Gosh, she's small

It's Tuesday morning and the phone is ringing off the hook! Good thing I had not one, but TWO cups of tea this morning, along with a giant glass of orange juice.

Following our visit to the geneticist Friday in Chicago, Teenie Bird's test results came in in a flurry yesterday and today. How nice it is to go to a specialist, and everything is done in one spot and there's no waiting for days or weeks before you find out what's going on!

Teenie Bird had a blood test for TSH (thyroid-stimulating hormone), T4 (a test for thyroxine, a hormone produced by the thyroid gland), and CK (creatine kinase, an enzyme in the blood made by muscles). Can I say, thank God for Google?

All of these tests appeared to be in the normal range, showing no abnormalities in her muscles or in her thyroid. This, interestingly enough, seems to be a paradox to me, that a test on the muscles in a child with significant muscle delays, shows nothing to be wrong. Amazing! The body hides its secrets very well.

The second test done on Teenie Bird Friday was a bone age scan, which is a way of describing the maturation of a child's bones (this time, thank you Wikipedia), and how much growing is left to be done. I find it interesting that through this test, doctors can determine to what height your child will grow. However, in Teenie Bird, being that she is already suffering from some form of delay, it would be harder to determine her final adult height.

The geneticist determined that her bone age growth is considered to be that of a 12 to 15-month-old child and her height is the same as an average 18-month-old. So in the least, her bone age is delayed by 11 months and her height by 8 months. Which I find to be quite ironic, considering that for a bulk of Teenie Bird's short life, we have often been told by well-meaning (I hope) strangers that she is quite short, and appears to have just turned one and not two!

The geneticist said the test did show, however, there is plenty of room for her bones to catch up in growth. Though he said it did not appear to be incredibly serious, he did recommend we go on to see a hormone specialist, also called an endocrinologist, who will chart Teenie Bird's growth and see how she is progressing in order to ensure she is not losing ground in her growth.

The geneticist said there are three possible reasons as to why a child's bone age scan could come back with Teenie Bird's results.

1. There is an abnormality within the bone. Thankfully, the x-ray of Teenie Bird's hands showed no abnormalities within her bones;

2. A chronic illness has plagued the child, preventing proper nutrition. We can also be thankful a chronic illness is not apparent in Teenie Bird; and

3. The child is merely delayed. In this instance, children who are delayed in bone growth take more time to grow and will catch up to their peers later on. A delay in bone growth could be due to a problem with the thyroid hormone, but the blood tests on Teenie Bird's thyroid showed no problems. The geneticist said Teenie Bird's delayed bone growth could be due to a more rare hormone problem, but would refer us on to speaking with the endocrinologist to see if this is in fact the case. He said it is very likely any sort of rare hormone problem can be managed by administering a hormone drug.

The geneticist said, at this point, there is no known correlation between Malignant Hyperthermia and Teenie Bird's height and bone delay, and it is unknown whether or not her bone delay is tied into her muscle delays, though the endocrinologist may be able to determine if there is a tie-in between the latter.

So, after all of that, we're now waiting for all the appropriate reports to get to the appropriate people. It's crazy! Our little family is lighting up the fax machines all on our own! The geneticist needs my medical records from my own pediatrician when I was a child to see if it was determined when I had the muscle biopsy what specific strain of Malignant Hyperthermia I have; if they did determine this, that will better help the doctors to figure out if Teenie Bird has it, as well. But, FIRST they need a release of information signed by me allowing this transfer of documents.

THEN, Teenie Bird's pediatrician needs the report from the geneticist, recommending we see a pediatric opthamologist and an endocrinologist. We need her pediatrician to refer us on to these two specialists.

The geneticist is also forwarding on his findings to our physical therapist and our coordinator, Sara, who arranges all of our therapies. And, as my Mother reminded me, I need to make sure I have copies of all of these reports as well. I know, I know. Bad momma gets a slap on the hand for being unorganized.

Can I just say that sometimes life comes at you so fast, true organization is a ruse and you're just trying to hold on the best you can? Take for instance my kitchen table (first let me find the camera on said table)....

Let's see here...two purses (one being used as a diaper bag),

one candle, two childhood development cds, a ton of paperwork, 

one child's ankle brace, a child's stocking cap, one glasses case, 

and two lamps, one of which is broken. That last one is 

very random, I know, but where else do you keep two lamps

out of a 2-year-old's reach? On the kitchen table, of course!

Since you were forced to look at my horrid kitchen table,
here's a more pleasant photo to hopefully bring a smile...

Does this look like anyone you might have seen before? 

She sure does look awfully familiar. Hmmmm....

Oh, I know!

MIKE WASOWSKI!

(character from Pixar film, Monsters, Inc.)

From our family to yours, hope this brought a smile to your face. Have a nice Tuesday! We'll let you all know how our visit tomorrow with the neurologist goes! And, of course, prayers are always welcome. Thanks and blessings to you and yours!