31 May 2012


I don't think I've told this story here.

I was just reminded it of it while putting Liam to bed.

Liam has a very much favored book to read on his iPad before going to bed. We have a set routine for him where he reads that book, says prayers, get's his stuffed glow-e monkey and blankie and then usually goes right to sleep.
It's the same routine.
Every night.
The only thing that might change is if I read him some stories before his Nighty Night! book. But it's always the same once we start that book.

One day the app had an update that would allow you to do an in app purchase of 3 new animals. Since Liam loves this book I thought it was a brilliant idea. I added the new animals and got started reading it to Liam. I had no idea what the animals were and thought it was so cute when a bunny appeared. I looked at Liam to see what he thought and he went perfectly still. Just staring. All excitement was gone. Then the next page happened to be another new animal, the pony. And he burst into tears. The next page was the third new animal, the cats, and he was pitching a fit. He was all out bawling.

He was so upset over the change to his book that he did the only thing he can do: cry.

I was proud of him at that moment. Not because he was whining about the changes to his book. But because he was telling me: He didn't like it. I had changed it. And he wanted me to know.

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25 May 2012

Pavlovian Pacifier

My husband, always a gadget and technology fan, found out about this new apparatus for getting micropreemies to eat. If it really works it would be a huge step in the right direction for helping out our special kids.

The costs involved in trying to get a micro to eat are staggering. Not only can the inability to eat extend their hospital stay at thousands of dollars per day, it can mean months and years of feeding therapy which insurance won't pay for. We are four years out with therapy at this point and no end insight with out intensive treatment. Which again, insurance won't pay for.

What a great idea this woman has created.

          Proprietary sensing, control and feedback algorithms are integrated into a discrete device that can be  calibrated to each baby's needs. The PAL® is wired to deliver a specifically timed lullaby each time the infant correctly sucks, meeting the preset pressure criteria.

I hope it truly changes the lives of preemies.

I know Liam could have been a candidate.  He had trouble from the beginning. His suck and swallow was always very weak. He tried so hard though. Who knows, maybe this tool could have changed all that for him.

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16 May 2012

Just had to brag on my little man. We had our first session of therapy today with private speech since he had his T&A surgery and boy...
did he blow that session out of the park!

Ms. Becky placed a picture in front of Liam and then asked him to find the object on the tray (tray would have two items). She would, of course, change objects to find and change their location on the tray.

And he nailed it.

Every stinkin' time.

He had a perfect score today.



And did I mention he was fast? She would show the picture and he would immediately respond. Which is important because Liam has processing delays trying to figure out which arm to use, which direction to look with his eyes, and then getting the hand on to the top of the right object in the right direction on the tray....

He has to work so hard!

And I'm so, so proud of him!

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05 May 2012

T & A Recovery

Do you like my hat?
Liam's adenoid surgery went a little off schedule.  We checked in at 8 to be ready for surgery at 9:30 but when we got Liam back in pre-op the versed made his oxygen sats low so we had to sit with blow by oxygen for a good 20 minutes before they finally took him back. By this time it was 10:15. After being back in surgery for only 10 minutes the Dr and nurses came out and called us back. I knew something was up because normally when surgery is over the Dr comes out to talk to you. Alone.

So happy before hand.
This was before the versed.
When we got back there we must have looked a bit scared and confused because he blurted out real quick that Liam was ok.

He told us that his adenoids were not as big as he thought they would be. But that Liam does very narrow passages in there and when he got to really looking he felt that his tonsils actually were very bothersome to him because they didn't leave him much room.  He asked our permission to remove them.

Uh, yeah! Not that I want it to happen but it's what we had been thinking all along.

After surgery Liam was very angry.

Because of the standard two hour recovery time in post-op, and having to have the IV in the entire time, Liam was very angry with us having to hold his arm out of his way for so long.

The iPad helped only for a few minutes.
As soon as we took the IV out we left.

As soon as we got out the door he stopped crying.

He breezed through Wednesday with no problems at all. He laughed and played all afternoon.  But Thursday morning everything must have fully worn off because he felt horrible. He didn't want to stay awake and he cried when he was. Friday, same thing. Today has been the first day that he spent several hours at a time awake and didn't spend it in tears. It probably helped to have friends with little kids over because he loves to watch other kids.

 I've been trying to push fluids and yogurt to help him. The worst thing to give him is his meds. They taste nasty and I'm sure with his throat so raw it burns to swallow it. They said it would be better for him to have it by mouth than tube but I don't see how when it taste like drinking almond extract.

I hate to see him in pain and so miserable. But I am so thankful that his tonsils and adenoids have come out. He's been sleeping so much more quietly since. Hopefully even more of his issues will be resolved with the tonsils gone.

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