Wednesday, February 25, 2009

Out of the mouths of doctors

Lots of thoughts in my noggin tonight. Today Drake had "clinic" at CCS (where he receives his therapies). I guess they occur every 6 months and since Drake just hit his 6-month mark at CCS, it was time. The clinic involved meeting with a doctor and all his therapists to go over his progress and see if he needs any medical devices to be ordered or whatnot. The doctor was nice, although I got the sense early on that maybe she wasn't all that clued in. For example, when we were going over Drake's medical history and I told her Drake had been diagnosed with PVL, she asked what that was. What? She is an older doctor who advises for a state service that supports kids with physical disorders.


She looked at Drake, got him down to his diaper, and did her evaluations. At the end she said, "This kid is doing great! You know, some preemies outgrown their physical delays and are all caught up by age 3. Drake may be one of those kids." So I said, "Well, that's fabulous to hear, but my husband and I are fairly certain he will have a CP diagnosis by age 3." And we think this because even though he is making great progress, he still has a brain injury and is still very delayed and has neurological signs of CP, like mixed tone, etc. jShe replied, "Maybe, maybe not. And if he does, it would be a very mild case of CP, I would think."

We should be out celebrating that a doctor has said this to us. But it felt so far removed from what his other doctors have said, that I felt cheated by the good news. His other doctors agree that if Drake were diagnosed with CP, it would most likely be mild (though we don't know what mild means), but not that he is going to "outgrow" his delays from PVL and be like any other kid. Doctors need to be careful what they say to parents. My sister was at the appointment and she called my parents to tell them the news afterwards. Then they called me, all excited that they heard Drake isn't going to have CP.

Urgh. It's so hard to be on the roller coaster. And I know it doesn't matter in the long run. Whether this doctor thinks he will have CP or not doesn't change him in any way. He will do what he is going to do regardless of a diagnosis.

But again, doctors need to be careful what they say and mindful of whose hopes they lift and crush.

Sunday, February 22, 2009

Mix Master Drake

Drake got the Leap Frog Music Table for Christmas. It's probably his favorite toy. The model we got doesn't have legs that come off (so if you want to buy this, check to make sure you get the one with detachable legs). Drake can sit on the ground in front of it to play, but it's still a little high for him. So, we put him on this little footstool we have and now he is the perfect height for it. His balance is getting really good as he can sit on the stool for a long time. I have my sister's biology text book under his feet so they are grounded.

I have a really cute video of him playing with the music table, but stupid Blogger keeps rejecting it, even though it meets all their uploading requirements.

Wednesday, February 18, 2009


Today, while my sister was watching the kids, Drake fell off her bed and onto the hard wood floor. She was upset and scared to tell me that it had happened on her clock. She said, "I left him for 10 seconds and he was in the middle of the bed. He just rolled himself off. I didn't think he could roll like that on a soft mattress."

He is fine and so I am left actually feeling happy that he is such a mover and shaker these days, he actually took a tumble!

Tuesday, February 17, 2009

Spreading the sickness

Saturday we went to a friend's kid's first birthday party. When we got there, the kid was taking a nap, so the twins and the other babies at the party were playing with each other and with the birthday boy's toys. All is fine and dandy. Then, the kid wakes up and comes into the living room. I go in for a birthday hug and see a face covered in snot with two huge, green "snail trails" coming out of his nose. His left eye is red and oozing green gunk, too. I say to his mom, "Is Felix sick?". She replies, "Yes, and he has pink eye, too!".

I spent the rest of the party trying to get the twins to play with the toys we brought and trying to sanitize their hands when the hostess wasn't looking. Who doesn't cancel a party when they have a sick, contagious kid?!

And of course, today, Drake woke up with a red, weeping eye and runny nose. Good times.

Sunday, February 15, 2009

Speech evaluation

Drake's speech evaluation went well (I heard) as I couldn't get away from work to be there. I was told she put 3 things on the table -- a doll, a ball, and a bottle -- told him what they were, and asked him to pick up the correct object when asked. He could only identify the bottle. That makes sense, as we don't have any balls and we only have one doll, which neither twin plays with. She asked if he points at things (no), can correctly identify facial features (no), hands things to you when he is "done" playing with them (no). She did like his range of vocalization and that he has two real words --"Uh-oh" and "Hi". He also waves "bye-bye" and will clap on command. So there is some expressive and receptive language going on. She also wanted to watch him eat and drink. She didn't give us a report on her findings, but she will be seeing him once a week starting in two weeks. Another appointment to add to the weekly calendar!

Wednesday, February 11, 2009

Talking points

Not so much to report these days. I have been so busy with my new job, there hardly seems time to sit back and reflect on what's been on my mind. Drake is getting a speech evaluation tomorrow. I, once again, have no idea what to expect. I assume she will try to get him to make a variety of sounds and peg him at an age for expressive and receptive language? I will be curious to see what she thinks of his sounds and what age she places him. I don't think he is too far behind in language. He makes lots of sounds and babbles and blows bubbles and imitates simple things like "Uh-oh". I often can't tell if Lucy or Drake is making noise when I hear them from the other room. Of course, I don't know what his sounds and babbling mean for his speech down the road. Like everything related to Drake, I am sure we won't know. And I am sure when I ask the speech therapist if she thinks he will have solid speech patterns, she will say "I don't know, we have to wait and see." Getting a little tired of the "wait and see", but at the same time, I think Drake has surprised us with what he can do and speech I am hoping will be no different.

Tuesday, February 3, 2009

New therapies?

I have been thinking of additional therapies for Drake and wondered if people out there could tell me which they really loved and really made an impact?

I don't think we can do ABR due to the logistics of that one, but I have been inspired reading success stories of those who do ABR.

I am most interested in the Anat Baniel method and HBOT. Also, craniosacral therapy. Anyone with experience in those? Any others I may not know about?