Archive for April, 2009

Appt went great!

Another mobile blog post here. I just don’t have the time to sit down and open my laptop some weeks.

The ENT appt went well. His tubes are still in place and wide open.

Dr. G asked a lot of questions about Lukes speech & feeding therapy, general development, hearing, and his follow up appts with the ENT at ACH.

We will be given another appt in 4-6 mos to see if the tubes are still in place. I can’t remember exactly, but a high percentage of kids who have tubes once will require repeated tubes. He just wants to keep an eye on things.

Speech went pretty well today! Monday was horrible. I think C is starting to try new strategies with Luke. Also, she is trying to incorprate parallel play since Luke is so shy. Another little girl will start her therapy in Lukes area and play close to him. He didn’t like being near her at all today!

DT went well Tuesday. He played in the bean pit! Bug advancement!


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ENT Today

We’re going to see Dr. Gardner today to have him peek at Lukie Boo’s ears to make sure his tubes are in place and wide open. I forgot this appt last month the day after I was supposed to go so now we’re finally getting around to it! Opps! 

Speech therapy was a bust today. Im not sure why sadly. I got called back because he was crying so much. He is cutting a tooth right now. FINALLY. His 7th tooth. He needs some back teeth seriously. Poor kid needs dentures. Im thinking the tooth pain is making him so fussy. 

Also, we went to the zoo this weekend with some of Luke man’s friends and their moms & dads. I’ll post photos from that soon. 

And, we haven’t heard anything about the blood test results. They did tell me it would only be a few days. The lab lady said it takes 6 hrs to run the test but we were in a later batch to run so it looked like a full 7 days would be required. I’ll keep you posted of course.


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I meant last week to write about his developmental therapy and what’s been going on there. I get sidetracked very easily and tend to go days without opening my laptop. I probably wouldn’t get on the internet for a week at a time if it weren’t for my iphone. 

Anyways, we DID get a new therapist for DT, if you hadn’t been told yet. S is amazing. She’s so opposite of M who scared Luke. Anyways, we have decided our main goal is for Luke to learn to separate from his caretakers. Mainly, guess who. Me. I’m really struggling with this. He’s been with me NEARLY 100% of the time since he was born. I’d like to explain this.. 

When he was born I made a huge effort to hand him over to people immediately so they could take in all the glorious babyishness they could and so he could be comfortable with others holding him. I got a lot of comments on how good I was to just hand him over. I suppose not many new, young moms do that?.. I was so proud of myself!

Then, he had seizures. NO way was I letting him out of my sight. He had seizures in his sleep… I wasn’t putting him in a crib where I couldn’t hear him seizing. And video monitors dont work unless you’re looking at them. So we continued to co-sleep. So many people have never seen a seizure, don’t know what they look like, and are uneducated about them. Many people asked what to do during them and suggested that you put something in the mouth during the seizure … BIG NO-NO. Nick and I had terrible fears about someone caring for him an inadvertently hurting him during a seizure or something along those lines. I had never missed one of his seizures. The post-ictal state is so scary that I didn’t want to NOT be with him while he recovered. It became my obsession to be with him (or have Nick with him) 100% of the time if I could help it.

I had strict rules: He was to have limited time on hard surfaces, he had to be in the same room as me while he slept, he had to be touching me while I slept, he was never left unattended for even a moment (seizures can happen in a split second and I was afraid to even miss the beginning of the seizure because I found I was obsessive about timing it correctly to administer emergency meds at the right time to prevent damage to the brain)

So, do you get the picture now.. lol We joke at our house how OCD Nick is (was was officially diagnosed) but this really makes me seem obsessive. 

So, DT is a big deal. It pushes him out of his boundaries to do things he doesnt like, doesnt want to do, isnt used to doing, and wont do. Its pretty much a cry session for an hour every week and S is the therapist we like! Its sooo hard for me not to cancel DT, take him home and let him be happy. Most of you see my status updates on Facebook and hear about how much I hate DT every Tuesday. It ruins my whole afternoon after DT because Luke really hates it. 

After some really terrible transitions to get me out of the room earlier this week I decided that with the help of C (ST) and S (DT) that they would take him directly from the waiting room into the gym & rooms without me and see how it goes. 

Yeah… I usually don’t leave Luke with ANYONE. PERIOD. I do let my mom watch him sometimes when I have to work.. its rare, she has explicit rules that I pretty well force her to follow and I think I’ve scared her into submission to do it because of his seizures. Im sorry mom.. I hope that isnt the case though. Anyways, its a big GIANT deal to let him go back alone. I worry each time that he might have a seizure and I wont be there. But, Im sure they’ve seen them before. I’ve got to let go a little.

The DT, S, and I have decided that his main goal for DT right now is to separate. Let him be Luke, without mommy close by for security. If Im in the room he plays and every few seconds walks back to touch my arm and then goes back to play. It’s strange because he will usually walk to me without looking at me, with his arm outstretched, eyes on S. Touch me, again, without even looking at me… he will feel that I am there and them move onto play again. I’m his safe zone, his base. 


Is there really anything wrong with that? I was an extremely shy child and still deal with that today. Nick was the same way. The poor kid comes by it naturally. Sometimes I think that pushing this on him isnt right. I have memories of being in daycare and crying because my mom abandoned me there. (pathetic isnt it!) Nicks mom had to work in the nursery at church because he wouldn’t go back without her. Maybe he’ll come around on his own? Probably. Nick wants Luke to grow up to be a strong, independent man so I guess this is our first big step that direction. 

Tuesday at DT and today at ST Luke was taken back without me. It was pretty heart-wrenching to watch him climb over them to get to me as they walked away. I could even hear him through the walls all the way to the back gym. That boy has some pipes! They promised me that they would bring him back or call me back if he didnt settle down. I never ended up getting called back. He did a great job over all. 

Both said that he wasn’t exactly happy but that he wasnt a screaming mess like usual. C (Speech) said he would cry and whimper as he partcipated today. S (dev) said on Tuesday that she couldnt put him down but that he trusted her enough to let her carry him around through the gym and even let her put him in a swing! 

Big strides we made this week and its official – I DONT HATE DT ANYMORE! Even just days ago I was seriously thinking about telling S that I wanted to go slower to allow him to get to know her better. He’s only been with her for 3 wks and it took him warming up to C for 3 mos. 

Things are getting better!


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This link from Wikipedia about PKU is a super quick read and will explain much better than I can what all the hubbub is about around our house. 

I’m trying not to be obsessive since Nick is the one that holds that title in our household but I’m not doing a very good job. 


On the other hand, Luke is exceptionally cute today. I’ll post photos soon!


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If you haven’t noticed, I don’t proofread before posting. 

I read my old posts sometimes to see just how far Luke has come and to look back at his changes. That’s when I notices the typos.. lol It’s not a spelling issue, dear old Mac catches that for me. 

So, bear with me as I blog and especially with mobile blogging! 


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Ball caps are TOO grown up

This cap really makes him look older than he is! Yikes! I’m not sure I like it really.

He loves wearing hats and chooses to wear them inside during the day. He also knows to grab his hat that hangs on his hook by the door when we tell him he can go outside!

He apparently prefers bucket hats to call caps so ihad to wear this tiny cap on for a while until he would let me put it on him. And even that took convincing.

Silly boy (who is 15 mos old!)

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He did it!

Well, he did it and was a trooper! I think if he didn’t have to be touched by someone else he might not have cried!

We should have results sometime within the week. This hotos was taken when we got home. Still looking a little sad. Poor guy!

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