Eventful days

Stefan & Jennifer · #1 04-24-2004, 04:03 PM

Well, within the last week:

Jake started using his walker to full effect, cruising around the house, opening drawers, tipping over trash cans and doing what other little boys do....

Jake started tolerating his PMV for up to 10 minutes at a time, vocalizing up a storm. Â*He seems to kind of hate it when it's on him, but when he sees it now, he wants to put it on because it seems that he's realized that he's making that noise he's hearing...

Jake started purposely covering his trach when it's not encased in a HME to vocalize...a few times so far, but definitely not by chance....

He's started panting and moving air through his mouth, breathing both in and out.....he has to stick his tongue out to do it, but it's a start I suppose.

He tolerates up to 3 minutes with his trach covered by one of our fingers, breathing in and out through his mouth with his tongue sticking out a little and vocalizing like crazy...WE EVEN HEARD HIM LAUGH FOR THE FIRST TIME EVER!!! Â*Not a dry eye in the house!!

...but, his CT scan of his sinuses came back unchanged after 3 weeks of cefapime to fight the pseudonomas. Â*We sent the CT scans to Dallas via overnight today so that his craniofacial surgeon can evaluate them on Monday and determine if a surgical cleaning or scraping may be necessary...we sure hope not!!

Wow, what a week!!

Jacob's Mom · #2 04-24-2004, 04:54 PM

First of all, WAY TO GO JAKE on all those accomplishments!! I know what you mean about the laughing. When I can hear Jacob laugh it just makes my day shine! And cruising around the house is so great. Pretty soon he won't need the walker to get into things. When I put Jacob in his walker, he goes straight for my cabinets. I think it is so cute and it feels so "normal". I love it!

Second, so, so sorry about the possible need for surgery. Hasn't he had enough? I am sure you have a huge exclamatory "YES!" for that. I hope it isn't the case. If it is, we will be praying for and thinking of you all once again. Keep us updated!

Take care,
Amanda

Ann · #3 04-24-2004, 06:40 PM

Awesome news! It's amazing how things just "click" and then they just take off. Here's wishing you nothing but forward progress. Way to go Jakob!

Ann

indiemum · #4 04-24-2004, 07:53 PM

Big, Big steps keep up the good work!

Kellyxo

Barb · #5 04-24-2004, 10:55 PM

wow, that's such great news! He's an amazing little boy! The laughing must have been incredible.
Who is your craniofacial surgeon in Dallas? Bobby is probably having a tongue reduction in Dallas this summer. The surgeon is Jeffrey Fearon . . .
-Barb

Colin's mom · #6 04-25-2004, 12:26 AM

Way to go Jake! Isn't it so much fun to watch them cruising about, even when they are getting into mischief. How wonderful it must have been to hear him laugh! I'm sure he was delighted with all of your reactions too. Wow, sure hope you don't have to bring him back to Dallas for that. I'll cross my fingers in hopes that you get good news.

Lesley

Carriestockmal · #7 04-25-2004, 04:28 AM

You go boy!!

sandra · #8 04-25-2004, 10:18 AM

I'm sorry that you are dealing with so much with this infection. I hope it clears without any more surgery. Congratulations on all the other wonderful accomplishments that he is making!!!

christyw · #9 04-25-2004, 12:02 PM

I loved reading all of that! The laughing is THE BEST, nothing is more precious to me, even now.

I'm sorry about the CT results. Hopefully he will not need surgery.

Thanks so much for letting us in on his accomplishments!!

We can all VERY much appreciate what you're saying.

christy

Ann · #10 04-25-2004, 12:46 PM

Stefan and Jennifer - I'm sure it is frightening to think of the possibilities if the infection isn't controlled. Like you encouraged me to do, try not to think too far ahead or to the worst case scenario (easier said than done - I know). I just hope and pray that the doctors can get this under control soon.

Ann