Well, to say it’s been an adventure thus far would be a HUGE understatement!!! We got him home on May 22nd. When we got home, we didn’t have all the supplies we needed and we didn’t get overnight nursing coverage for about a week! Luckily, between myself, Drea, and Mary Anne (Betsy’s mom) we had it covered. Unlike most babies, who can sleep unattended, Jake needs to be monitored during the night. If his trach gets congested, he needs to be suctioned. And, while he does wear a heart/respiratory monitor at night, if he just starts crying...as most babies do...we can’t hear him unless we’re in the room. He’s got a whole bunch of equipment that makes lots of noise and that doesn’t help hearing him!
All that being said, he’s making GREAT progress. He’s up to 9 lbs. so far and gaining like a champ. We started giving him a special bottle at feeding time to try to get him in the habit and he’s really catching on that sucking and swallowing go together!
After doing a bunch of research and talking with other AMC parents, we’ve made the decision to move over to Children’s Memorial Hospital for Jake’s doctors and future needs. The specialists we’ve found there have had plenty of experience with kids with AMC which goes well with our eagerness to get him on the road to start hydrotherapy. In order for that to happen, he’ll first have to be rid of the trach. So, keep your fingers crossed!!!
We’ll update this as often as time allows so if you don’t see anything for a while and are curious about Jake’s progress, please send us an email!!!
June 11, 2007
His first 3 weeks home
Our Blog
3 Comments 
I miss you all and wish I lived closer so that I could continue my fine job of nagging! Of course I miss Jacob the most especially that face he made whenever he heard my raspy voice!
Send pics of your yard please (or should I say my smoking area)
Send pics of your yard please (or should I say my smoking area)
Tuesday, June 12, 2007 - 05:28 PM
There is an old expression from the thirties "Everything is Jake" meaning that everything is ok. Well, now that he is home we can say Everything is Jake with Jake!
We really enjoyed having Jake at our house with his cousins Alex and Nate on Sunday. Jake has been a great addittion to our lives.
We really enjoyed having Jake at our house with his cousins Alex and Nate on Sunday. Jake has been a great addittion to our lives.
Tuesday, June 12, 2007 - 06:06 PM
AUNTIE JO-ANN
I CAN'T WAIT TO HOLD THIS LITTLE ANGEL. YOU GIRLS ARE DOING A GREAT JOB........
LOVE
AUNTIE JO-ANN
I CAN'T WAIT TO HOLD THIS LITTLE ANGEL. YOU GIRLS ARE DOING A GREAT JOB........
LOVE
AUNTIE JO-ANN
Wednesday, June 13, 2007 - 08:18 AM
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