Thursday, June 17, 2010


We had our first neurologist appointment today.  It went really well!  He agreed with everything the OT and PT have already said about Luke's development. 
*We need to continue to work on his core strength by using the BePod (Bumbo - little infant seat) to have him work on sitting up. 
*We need to continue to work on head control - although this is getting MUCH better!  He even picked his head up off the floor and held it for about 30 seconds this week - yeah!!!
*In the beginning, the therapists were worried because he didn't have the grasp reflex like infants should have.  Well now we're working on having him unclench his fists!! 
*He still has a preference for looking over his left shoulder when he's laying down.  That can create tightness in muscles and cause problems with several areas so we are continuing to work on that. 
BUT overall he was very pleased with Luke's progress.  We were sooooo glad not to get any bad news.  It was really great to hear the neurologist say he thought Luke was doing so well!  Whew!!!  We have to go back and see him at 6 months in September.
We also met with a geneticist today.  I think I've already mentioned that they did a few blood tests on Luke while he was in the hospital to check his genetic make up to see if he had any other abnormalities besides the brain malformation.  So far all the tests have come back normal.  Honestly, I didn't REALLY know what that meant - normal, that is.  And I didn't really understand for sure why we were meeting with genetics.  I thought it was mostly to find out how this happened to Luke.  Now we understand a little better!!
The big blood test that was done was called a chromosomal array.  It's really fascinating and I still don't fully understand it.  They looked at his entire DNA to check for any other genetic issues besides the polymicrogyria.  His DNA is normal.  So now they want to do another test that is specific to kids who have the type of polymicrogyria that Luke has - the bilateral frontoparietal (I just wanted to write it again to see if I could spell it without looking it up!!!! :))  It's a blood test that looks at a specific gene abnormality that has been linked to kids with the type of PMG that Luke has.  The benefits to finding out if that gene is abnormal would be that it could tell if Dan and I are carriers.  It would also give the doctors more information about the PMG as far as possibly giving us a clearer picture of how it will affect Luke.  The geneticist said that if he has this abnormality she can look at other kids who have his specific form of PMG AND that specific abnormality and tell us what common problems/delays/issues they have.  So it might tell us a little bit more about what to expect for Luke.  We haven't decided if we're doing it or not.  We're waiting to find out if our insurance will cover that specific test.  It would be interesting to know if Dan and I are carriers. 
It sounds like we'll be meeting with the geneticist once a year for now. She said that new tests come out all the time and they would continue to meet with him to see if there had been any advances in determining how it could affect Luke.  (I think....I might still be a touch fuzzy on this genetics thing...Sorry if some of this doesn't make sense!!) 
I have to say, too, that Luke was LESS than a Rock Star today for BOTH of his appointments.  He made it clear that his lung development was MORE than adequate by howling his head off for BOTH appointments.  Sweet.  Typically he's pretty easy going and he was super happy until we had to undress him to get his weight.  It all went downhill after that!  Poor guy - he was so tired but he managed to battle through! 
We were pretty pleased with the day.  We consider it great news that he is doing so well so far and has so many people looking out for him. 
We'll keep you updated with all of our great news!!!!!!!!!!!!!!

Wednesday, June 2, 2010

Luke had his 10 week appointment last Thursday. He is 15 lbs 2 1/2 oz. He is measuring 25 inches long! Still growing strong:) He's pretty much wearing 6 month clothing now!! The pediatrician didn't have a lot to say - he's eating well and still doing what he's supposed to be doing as much as a 10 week old baby should be.
He has been doing well with his OT and PT appointments. He's been raising his head a little. When we have him on his tummy for tummy time he doesn't work particularly hard!! He's pretty laid back!!! We are working on that. He is getting more and more solid as we are picking him up and holding him up. I have to keep reminding myself that it's going to take him awhile to get good head control due to the macrocephaly. When he's laying on his back, he tends to favor looking over his left shoulder so we are keeping an eye on that. His pediatrician checked his head to make sure he wasn't developing any flat spots - which he isn't - so that's good. The picture is of him doing his therapy with his PT, Amy. Amy and Erin (OT) pretty much do the same things right now.

Our neurologist appointment is in a few weeks. I think it's going to be rather anticlimactic from what I have built up in my mind! I am hoping he's going to be able to look at Luke and examine him and tell us what his future holds. I guess that would be true if we were going to a fortune teller, huh? I have a feeling it's going to be similar to Ben's due date - it will come and go with no big news. I guess no news will be better than any bad news, though.
That's about it for now. Thanks again for checking in. I updated our family website with LOTS of pictures so if you have several hours to spare, check it out:)

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