This blog is dedicated to differently-abled children, particularly those diagnosed with a radial ray defect, hematological issues, Failure to Thrive, developmental delays, microcephaly, cerebellar dysgenesis or cerebral palsy.

Sunday, May 31, 2009

Dr. Paley's reply

After Dr. Paley received Emma's x-rays via email, he responded very quickly:

I see the spike you are referring to. Do you feel it is painful to her? Based on what I see now there is a whole new option for treatment. This is a very good thing. I can join the lower ulna to the lower radius. This will give excellent wrist support and stability. I can of course remove the spike at the same time.

As regards timing, if the spike is at risk of coming through the skin or if it is painful we can operate sooner. Otherwise there is no urgency. Nothing bad has happened.

He added in another email that this is usually not painful, and I have to admit that Emma is not crying and is playing normally. This is comforting, although it still gives me the heebie-jeebies to imagine a bone actually moving around in her arm.

Emma has another appointment in the CHLA ortho clinic on June 1st, and I have a few more questions for them based on the x-rays and Dr. Paley's email.

Wednesday, May 27, 2009

Latest x-rays

Here are the most recent x-rays of Emma's left arm. The small partial radius may be seen in all three images, but I think the second one shows the situation best, as it was the only image taken from the side of the arm. It's quite clear that the "pointy" end of partial radius is tilted up towards the surface of the forearm, and the "bump" corresponds exactly with the position of that end of the bone.





Dr. Arkader agreed with me that the bump is indeed caused by the radius bone. He seemed to think "case closed" ..... after all, it's not a tumor, nor anything bad, it's simply her own malformed radius bone.

Maybe I'm wrong, but I don't think it's occurred to anyone but me that a BONE moving from one place to another within your body would HURT! Shouldn't something be done about it?

I've taken her to see three different doctors in the past two weeks, and everyone says that she doesn't seem to be in pain, so don't worry about it. But I can't let this go....it's my Emma!

I've emailed Dr. Dror Paley and have sent him these images....I really would like to know what he thinks.

Tuesday, May 26, 2009

Please pray (and contribute!) to the cause

A dear friend of mine, Holly, who lives in Oklahoma, is trying to raise money to attend the microcephaly conference out here in California in June. Her youngest child, Rachel, has microcephaly and a brain malformation similar to Emma's, and they really want to make it to this conference for many many reasons.

Please visit Holly's blog for more details. I just wanted to post about their plight and appeal to the people who visit Emma to donate to the trip fund if possible. Even if you can't donate, please pray. Their family is struggling with several different health issues right now, and she has EIGHT children! :)

Emma's arm, plus GOOD NEWS on the weight issue!

A few days ago Emma was seen in the CHLA orthopedics clinic by Dr. Arkader; they took more xrays and were able to show me exactly what had happened to her left arm that caused the bump.

I really wanted to get copies of the xrays to post but the CD burner in the Radiology Dept is broken and they don't know when it will be fixed. So I will try to describe what I saw.

Just as I suspected, the small remnant of a radius bone has actually moved from where it was! Originally it was located near the wrist with one end close to the head of the ulna (the end with the growth plate). Now it has moved about 2 inches down the arm from where it was, and is tilted at a -30 degree angle, causing the pointy end (the end without the growth plate) to protrude oddly and make a bump on her forearm.

It must have taken considerable force to move that bone, and it MUST be uncomfortable! I don't know how the bone was moved, but the only scenario that makes sense is some sort of traumatic external event.

Emma will be seen by another ortho doctor in the same clinic, a Dr. Lightdale, who is a hand surgeon, on June 1st.

On a happier topic, we received wonderful news today: Emma has gained weight!! She weighs approximately 10.25 kg or 22.6 lbs! Her pediatrician was very happy, and says that we do NOT need to consider a g-tube at this time! Hooray!!!!

Tuesday, May 12, 2009

More on "the bump"

We took Emma to see the triage doctor at the CHLA pediatric clinic yesterday. The doc felt the bump on her arm and said something like, "yep, there's a bump there."

So we went for x-rays. We waited for a LONG time in the radiology waiting room. Eventually they called Emma and took pictures of her arm.

Finally we got to go back to the clinic. We waited for a LONGER time. The doctor popped out a couple of times to let us know we weren't forgotten, then finally told us to go eat lunch and come back in an hour.

I guess the x-rays were read by someone while we were at lunch, because right after we came back the doctor came out and told us that nothing much was showing up in the images except for Emma's usual left arm structure (they had old x-rays from 2007 to compare these with).

We were told if we were "still concerned" about the bump, we could call orthopedics and make an appointment. Well, YES, I am still concerned!! The darn thing is about half an inch across, and protrudes enough to be seen quite clearly. And Emma says it hurts!!

You bet I'm still concerned!!

I guess I'm a little mad because it seems as though the doctor WASN'T concerned any longer.

Anyway...we're trying to get Emma in to be seen in the orthopedic clinic.

More soon....

Sunday, May 10, 2009

Something strange....plus another video

Video first: as you know, Emma is talking a lot lately. I managed to capture more of her thoughts during a conversation on Mother's Day; I hope you enjoy it as much as I did! Emma frequently makes me laugh, she's so funny (usually unintentionally):


video

Now for the "strange" thing that we've just noticed in the past few days (first saw it Friday afternoon)....a very solid bump on her left forearm which has never been there before. I have NO clue what it could be. The only thought I've had is that somehow the partial radius she has in her left forearm has moved....but that's probably not possible!

Emma doesn't seem to be in much pain, although she's not using her left arm quite as much as usual. When I ask her about the bump, and whether or not it hurts, she says, "I want to get it out".

What could THAT mean?

In the picture below, I've used a red arrow to indicate the position of the "bump"; you can see it in profile against the dark blue background of the high chair. It's about half way between her wrist and her elbow on the upper surface of her forearm.




At one point she did admit to some pain, but not today. We've made an appointment for her to be seen at the pediatric clinic at CHLA tomorrow (Monday) 11 May at 8:40am. I will have to cancel or cut my class short in order to get her there in time (I teach this semester from 7:00 - 8:40am MWF).

Please remember Emma in prayer.