Tuesday, August 24, 2010

Awwww....

Does any mother ever get over the swell of love in heart when she sees her child passing the love on? I know it's just Elmo but that's where it starts...

Saturday, August 14, 2010

And the winner is......

Chantal (aka commenter # 6)! Chantal, please contact me at empwrn@bellsouth.net with your email address so I can tell you how to claim your prize. Thank you everyone who entered!

Doing what he loves

"walk in shade!" Please note that he is doing this outside the indoor playground I brought him to because it's too hot and humid outside. *sigh*

Thursday, August 12, 2010

Sleep Study Time Again!

Jack had another sleep study last night. He had little preparation (it was a last minute work-in because of a cancellation) but he handled it like a champ. I took the pictures from my previous sleep study post (see left sidebar) and made a little book telling Jack where he could expect to have wires. We used the word "wires" instead of "stickers" because, in a hospital setting, Jack tends to hear only the "stick" (as in getting stuck for an IV or blood draw).

We reviewed the book before we left the house and then reviewed it when we got to the hospital and once more just before the technician began hooking him up. I used the exact phrasing I used in the book (wires on your face and head and probe in your nose, wires on your chest, wires and tape on your legs, straps on your chest and tummy) as the technician wired him up. The sweet technician realized very quickly that Jack did better if she just did her wiring and let me do the talking. He was so good with just minimal fussing and that was mostly because he was sleepy and ready to lie down.

He slept pretty well even though he is congested. They keep it super cold in the sleep lab and that always helps with his breathing. The pulmonologist wants to increase Jack's maximum inspiratory pressure to 26 since Jack still obstructs a bit even at 24. We'll do that tonight.

AND Dr. Lozano says that once we know a date for the midface surgery, we can come into the lab and adjust Jack's settings so he can wear nasal prongs instead of his usual face mask. He won't be able to wear his regular mask under the rigid external distraction (RED) device so we thought Bipap would not be an option after surgery. His obstructive sleep apnea is so bad that we were concerned that he might have to have a trach until we advanced his midface far enough. Dr. Lozano says that nasal prongs are not ideal for Jack and not a good idea for his general use because he is a mouth breather and his tiny nasal passages will make it pretty uncomfortable BUT the nasal prongs may help us avoid a tracheostomy after Jack's midface surgery.

So all in all it was a good study and we got great information.

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Sunday, August 8, 2010

Fine motor work

An exercise doesn't work unless you do it. Jack's fine motor skills aren't gonna get anywhere sorting different shaped chips . It's not that he can't do it. He'll do it if you really push but he'll only do as many as you make him.
On the other hand, add something unfamiliar like pumpkin seeds to his regular dried fruit snack and you'll see some sorting going on.

Saturday, August 7, 2010

Gotta Keep Elmo Entertained

We're on a trip and Jack is bringing along his pal, Tickle Elmo. He did not want him to be bored so he's "reading" Cars to him.

Wednesday, August 4, 2010

Mess maker!

After school today, Jack was dragging all sorts of stuff out and making a big ol' mess and lots of noise!

Monday, August 2, 2010

Sleeping Dream

videoLong before Jack was born, I dreamed of motherhood. I thought about what kind of parent I would be and how motherhood would feel. Psalm 37:4 says, "Delight yourself in the Lord and he will give you the desires of your heart." God has truly given me the desires of my heart. He planted in my heart the desire to be a mother. And then in his own good time, he made me a mother.

I had no idea what this would be like. I did not know that this evening my little sweetheart would throw a fit because he did not want to go to the bathroom. I did not know he would fuss his way through nighttime toothbrushing and face washing only to surprise me by running down the hall unprompted to his Daddy to say, "Night night".

I did not know what mixture of pride and pain I would feel as my sweet boy told me "Go sleep. Probe on toe." as if he needed to remind me that he needs his oxygen levels monitored as he sleeps.

I do not know what surprises this night or tomorrow might hold but I know that right now my dream is sleeping...

Sunday, August 1, 2010

Little Drummer Boy

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