Baby steps

Hi everyone

In the last couple weeks, Tommy has been making progress. He's been switched over to the home ventilator system - the LTV - and has been doing well on this vent. His CO2 levels haven't gone down as much as we had hoped, but they're at least holding steady. Tom has been gaining weight and tolerating his feedings very well. He's active and interactive with the nurses, physical therapists and (of course) his parents. He chomps on his pacifier and LOVES his mobile. (Looks like we'll be buying one for his crib at home just like the one he's got here in the Infant ICU...)

Tom's progress has impressed the docs so much that they've approved a transfer back to Memorial Hospital in South Bend. Our insurance company has also approved this - something very unusual in the world of private insurance. But considering the circumstances around Tom (3 brothers at home, the 3+ hour drive for his parents, and the others that need to get trach/vent training), they have agreed that the move back to South Bend is the best for all involved. Tom is scheduled to make the move on Wednesday; it was originally scheduled for Tuesday, but the folks at Memorial needed one more day to get things ready for Tom's arrival. Having him only 25 minutes from home should make life a bit easier for all of us. We don't know yet how long Tom will be at Memorial, but it is one baby step closer to home.

So I'll finish out our stay in Indy with Tom. Tim went home to enjoy the rest of the holiday weekend on Sunday afternoon. In the time he spent with Tom this weekend and last, Tim was able to accomplish a lot of training with Tom's trach. Tim attended a trach class, performed "trach care" (cleaning and changing the dressing around Tom's trach), and quite successfully completed 3 trach changes. One of those changes was a practice run on an "emergency trach change" where he performed a typically 2-man process by himself. What a pro. I've gotten much of the same training under my belt, but only 1 trach change so far. I guess I'm just not as brave as Tim is ... yet. I'm sure that will come in time...baby steps, right?...

At home we've had a continued string of wonderful helpers. Aunt Bonnie has been incredible and the boys have really taken to her. Last weekend "Aunt Jules" came to visit and help out. Then last week Aunt Rosie, cousin Amy and Grant hung out with the boys. We had to frisk Rosie before she left to make sure she wasn't trying to smuggle Henry, Joe or Sam out the door. :) This weekend Tim's parents are in town and with them is Uncle Tom. He's not only visiting the boys, but also Aunt Bonnie! There are no words to express our gratitude for their help - and the help of all those signed up to help in the coming weeks. We know we couldn't get thru this crazy time without you.

As we get closer to Tom's arrival at home, there are several things we need to implement at home and to consider for those that come to help - particularly those that will help out regularly with the boys. Among them are:

- Flu season: It will be particularly important for each visitor to be tuned in to his/her own health and exposure to those that are sick. Even a cold can turn into something much more serious for any of the boys - particularly Tom. If you're a regular helper, we'd like you to consider getting a flu shot.

- Inhaled irritants: Since Tom doesn't breathe through his nose or mouth, his air bypasses the natural filters built into our respiratory systems. We need to take extra steps to make sure particles and fumes in the air around Tommy are strictly limited. We will not be able to dust or vacuum when he's in the room. Aerosols are a big no-no; as are cleaners with chemical fumes and perfumes/colognes. Please refrain from wearing perfume or cologne when visiting.

As we learn more about what Tommy will need at home, we'll be sure to let everyone know. We'll want it to be as smooth a transition as possible - and we certainly appreciate your continued support to help make that happen. In the meantime, please enjoy the photos below... oh - and speaking of photos...

Alicia Gallegos, the journalist from the South Bend Tribune that interviewed us a few weeks after the boys were born, contacted me last week regarding a follow-up story. She and a photographer visited the house on Thursday to interview Tim before he came back to Indy. Then they came back on Friday to interview me. Alicia was hoping to get the story in the paper on Sunday, but weren't sure they had the resources over the weekend to set up the online slide show they hoped to incorporate. So watch for it online and in the paper on Monday. If for some reason the story doesn't make it into Monday's paper, I'll call Alicia on Tuesday to get the details and will let you know when the story will run.

Take care everyone - and thanks again for all your love and support. Please enjoy the photos below...

Love,
Kristin, Tim and the boys

This was taken a couple weeks ago when Papa Don and Uncle Mike came to visit Tommy before his trach surgery.


Shortly after Tom's trach surgery...Mr. No-neck...


The first day I got to hold Tommy since his g-tube surgery and after his trach surgery.


A couple shots of the fellas at home. Henry is in orange, Joe in blue and Sam in green. Too cute for words, eh? I'll have more cute photos of these 3 hooligans soon. (REMINDER to cousin Amy to send me those pics...)



Tommy last week with his physical therapist.


Mr. Sweetie Face


Daddy and Tommy - probably watching Sports Center...


Tommy loves his bouncy seat and mobile.


Mommy and Tommy