Jumping v. 2

As promised here is Drew in his Jolly Jumper doing some poker face standing. Notice anything different? (hint - look at his face)

Happy jumping!

Jumping

Drew loves to jump. Thankfully we have helpful and understanding siblings who provided us with jumping toys for our little kangaroo. Our arms are slowly recovering...

First up we have Drew in the Jumperoo doing his best Riverdance impression.

Stay tuned for Drew being a jolly jumper.

If girth is any measure of health...

...our Drew is doing just fine.

He just keeps getting rounder.

And since in the sick baby world weight gain is one of the biggest positive indicators of overall health, our Dr's are very pleased with his progress. At our appointment earlier this week the Dr kept congratulating me on how sturdy he looks (as though this is something I accomplished? Interestingly the praise was distinctly directed solely at me, although David was also present...). We don't actually know what his weight is because she decided that there was no need to drag out the scale since clearly his weight is not a concern. Before we left she warned us not to be concerned if he ends up being delayed in learning to sit as he may have trouble bending at the middle.

As you can see, he does look a little uncomfortable in the Bumbo chair:
kb

Half Dutch

Drew celebrating his team's win at the World Cup. I guess he will probably become a big speed skating fan too...



*Note: Karla isn't crazy. You just can't hear the music in the background. (Shout - Tears For Fears. circa 1984)

db

Home is better than the hospital

Hi everyone!

It sure is good to be home again. The Doctors told me I'd only have to stay in the hospital for two days but they didn't let me go home until nearly two weeks later. Guess they don't like when I try to impersonate a smurf. I don't really like the hospital. They use too much tape for holding my ng tube on my cheek and they're always bothering me. But I guess it's not all bad. My mommy and daddy stay with me (my mommy stays all night!) and everyone is doing their best to make me better.


I even got to meet my Uncle Curtis and Auntie Debbie!


And Mommy and Daddy got free food during Children's Hospital Miracle Weekend.



As fun as all that sounds, it's much better at home.



Thanks for praying for me and my parents!

drew

So this is what a miracle looks like

Thanks for all your prayers.
The sleep and feeding study results were far better than anyone expected.

Drew was able to breathe quite well on his own without the ventilator for most of the night! He still showed a few periods of shallow breathing but none of the major apneas that were frequent in his initial study. So he's a B-grade breather with room for improvement.
His swallowing was also greatly improved. There was no aspiration and only one event in which a small amount of liquid went part way down his airway but not all the way to his lungs. No G-tube for us!!

This really is a miracle. When initial investigations into Drew's breathing showed that this was a central nervous system problem we knew that this meant it was not something he would grow out of, and yet here he is at only 3 months surprising everyone and giving us hope that he may continue to improve.

Despite this we are still in the hospital. While Drew is mastering the art of breathing-while-sleeping and breathing-while-eating, he is deteriorating in the field of breathing-while-mad. His breath-holding episodes have gotten a lot worse in both frequency and severity in the last few weeks. While we are used to them, they make the Drs very uncomfortable. They are hesitant to send us home with him being so dramatic on such a regular basis.

So what does the future look like? Right now we take it day by day with very conservative management; sticking with the ventilator for sleeping and the NG tube for most of his feeding. No one wants to push Drew on these things as he needs all his reserves to recover from his breath-holding episodes. A bunch of specialists have ordered a whack of investigations but they remain skeptical that they will be able to diagnose the cause and will probably try some medications on a "might-as-well-try-it, maybe-it'll-work" basis. They want to keep Drew under close observation while they give them a try, so he will remain in the hospital for at least a few more days.

In the meanwhile Drew keeps everyone hopping with breath-holding that freaks out each new Dr that sees it for the first time. This morning he decided to mix it up a little by dislodging his tracheostomy tube and requiring an emergency tube replacement. Mommy is still shaking.

So please keep praying.
We are spent.

kb