Friday, June 12, 2009

What's New...

So last Friday I took Joe to IU School of Optometry to get his vision checked (again). We saw an intern and a supervising doctor. They did similar things as last year (showing Joe pictures to see if he looks in the correct direction, looking in his eyes with their little lights, dilating his eyes and checking his true prescription, etc) all with the same result. Joe's eyes are working just fine, slightly farsighted but that is totally normal for his age. They can find no reason for his lack of eye contact. So, while its good to know his vision is good, but its not real helpful at this point.
Joe had blood drawn in January for some genetic tests. We were told they were extensive tests that would take awhile. So after awhile I called and tried to get the results. No one got back with me. So I called again awhile later. They said the doctor was on vacation and that he'd look over the results when he got back. No one got back with me. I tried again last week and the girl I talked to said there was no record of me ever calling before. She said she'd email the results to the genetic neurologist we had seen for him to interpret and then she'd get back with me.
Well, she did get back with me on Monday. Only not with test results. She said that there was no record of the tests ever being done. She said we'd have to come in and get his blood drawn again and have it sent away to do the tests. No apology. No nothing. Just matter of fact. I was very unhappy to hear that. Isaac called Clarian West where we had the blood drawn and checked their records (which is connected to Riley and they have access to). They did a few tests in house but did not even draw the blood that was supposed to be sent to a special lab for testing. Then he called Riley again. They said that on Friday the doctor would discuss the results of the tests that were done, and we'd have blood drawn then for the other tests.
So... we just got back from our appointment with the genetic neurologist. Basically there is no news. Just more tests that are normal and got blood drawn for the tests that were supposed to have been done already. I felt a little better about the blood test mix-up after the doctor was apologetic, even a little embarrassed by the whole thing and double checked the new test orders to make sure the were getting done correctly this time. We are testing for Angelman Syndrome. Seizures seem to be a big sign/symptom of Angelman's and Joe has never had any. The doctor does not think Joe has traditional Angelman's but might have an atypical kind. There is no cure for this. But we will just have to wait and see. Beyond these tests he said further (and probably invasive) testing would probably be more for our benefit than for Joe's because if it is something like a mitochondrial disease or something there may be no cure or even treatment.
I've been uncharacteristically calm following this visit to Riley. I'm usually a mess after these kinds of doctor's appointments. I guess I got it all out of my system before the appointment this time. ;-) That and I had a couple of good friends praying for us. Thank you all for your continued prayers concerning Joe.


Anonymous said...

Lawana: Those pics of Joe or so great! He seems so alive and alert and in all his photos now!

I will be praying for answers, something, anything for you all. And for the right doctors to help.

Much love,


Anonymous said...

Oh, Lawana, I so feel your pain. Hesitant to admit this, but after genetics not getting back with me, I just stopped the whole thing. I will spare you the whole story, but we still don't know what is "wrong" with Jack. Bunch of random things that don't add up, according to the specialists. I know you want an answer. you want to understand Joe better, so that you can be the mother he needs you to be, and set him up for success. Know that you already ARE the mother he needs. God knew exactly what He was doing, putting little Joe with you. All of his days are planned, just perfectly, already. Anything you and I may face today, or tomorrow, or the next, are no surprise to our Father. He will direct our paths, as long as we are trusting in Him. "Don't worry about anything. Instead tell God about everything. Ask and Pray. Give thanks to Him!" Phillippians 4:6
I will pray for Joe.
Take a deep breath, girly. You are an awesome Mama. Draw your strength from the One who has an infinite amount!
- A.T.

J.A.R. said...

Hey Friend, I understand the medical run around journey & frustrations. I think & pray for you guys often. I think those who scream the loudest get more attention right away. Let them know you mean business even if you have to pin them up against a wall. Walk in there like you own the place, besides you pay them enough to Deserve YOUR Valuable time... Read More, make them Earn it. Keep plugging away and don't back down to get answers and hopefully soon you'll cross the finish line with the Answer. Keep Looking up because God is Looking down on you. Your a Good Mother and your doing a great job! I love You!