Morning Date With My Guy

After labs this morning at the hospital here in Virginia, we had a fun Starbucks date along with monster truck bus; shockingly enough, it was our first Starbucks date despite my Starbucks addiction! Last week's visit at CHOP was great and everything has been pretty stable since his blood infection last month, but the doctors wanted to do one set of labs this week at home in VA just to make sure things continue to stay stable (they are still closely monitoring his white blood cell count). If all goes well after our visit next week at CHOP, we will be able to go to once a month visits! I'll be doing the happy dance all the way back to Virginia after getting that news!!!

Disclaimer: I should note that in between labs and our Starbucks visit, we stopped at Bed, Bath & Beyond so I could re-stock up on Starbucks k cups.  Clearly, I have an issue. And now you know my secret :)

So...What's New?!

Not a whole lot...which is pretty great!  Things have been pretty status quo in our house for the past couple of weeks after being discharged from the hospital after Stephen's blood infection and finishing the IV antibiotics at home.  We had a typical check-up last week at CHOP and all of Stephen's bloodwork came back great.  There were still signs that he was recovering from an infection (things having to do with bone marrow and all sorts of complicated scientific-medical jargon), but his doctor's weren't concerned about it.  His prograf level was a tiny bit low, so they went up slightly (from 2.0 ml to 2.2 ml) on that, but that was the only change they made to his medications.  We're still at the every-other-week point with transplant clinic, so we'll be heading back to CHOP early next week to see the docs on Tuesday.  Staying at the Gift of Life House, although very nice, was getting to be a bit difficult for me to handle on my own, so we've been driving the 2 hours on Monday afternoons to my parent's house in York, PA, getting a good night's sleep, and then driving the 2-2.5 hours to Philadelphia on Tuesday mornings.  It's a very early morning, considering we have to leave the house by 6 am, but it's nice to see my parent's, have a nice dinner, sleep well, and of course Stephen LOVES to play with Mimi and Poppi.  Occasionally, my Mom is able to go with us, so we go back to York after his appointment, but this week, we'll head back to Virginia after his appointment is over.  It's been A LOT of driving this Summer back and forth to Philly, but I don't regret it for one moment!

So...what else is new?  Well....I'm still working on getting Stephen into preschool.  It's been a serious thorn in my side and has been hanging over my head for weeks.  It's one of those things I think about every day when I'm in the shower or standing in the bathroom brushing my teeth.  There has to be a way to solve this problem, because I know Stephen isn't the only kid going to preschool with a feeding tube; but, neither myself or anyone else has been able to resolve it.  The issue still is how to get Stephen fed while at school.  He's enrolled and scheduled to go to a private preschool two full days a week; Tuesday and Thursday, but there needs to be someone to do his breakfast and lunch tube feeds at school.  As I've mentioned previously, because of Stephen's unique insurance issues (being a pediatric patient that's Medicare primary), I haven't been able to find a nursing agency and the agencies I have talked to, have also said that they likely wouldn't be able to find a nurse to staff this type of job because the hours are so small.  So....I'm now at the point that if I really want him to go to preschool, I'm going to have to hire someone myself. I really don't want to do that since I'm already paying much $$$ for preschool, but I don't really have an other option.  I'm going to be at work, Bill will be at work, and it's impossible to think that one of us would be able to drive to school each time and feed him.  Plus, I really don't want to interrupt his day. I posted a message on Stephen's Facebook page asking for any ideas, so I'll do the same here.  If you have any thoughts or ideas or have found yourself in this predicament, please email me or comment below!!  So far, none of the social workers, case workers, or nurses have been able to help. So in the meantime, I'm still working only one day a week while Bill's Mom watches Stephen, and I'm doing the best I can at making sure he's interacting with other kids...although kinda, sorta, failing at it (having serious Mommy guilt...but that's a whole separate post!).

And in the meantime, Stephen's progressing by leaps and bounds!!!  It's truly remarkable!!  He's now counting up to twelve, saying his ABCs, speaking in almost complete sentences (some of the time), and just being a total sponge when it comes to everything!!  He makes me laugh out loud all the time by the funny stuff that comes out of his mouth and his physical abilities have just skyrocketed!!  He's just a little machine constantly running and dancing and jumping around.  His newest thing is taking walks around the neighborhood.  Usually in the afternoon after his nap, we'll take a long walk (well, for him a run) up and down the walking path in front of our house or do laps around our neighborhood.  I'm really not joking when I say this kid ran at least a mile the other day!  And lucky for Mabel, she gets to come along too :)  Our other favorite activities continue to be going to the library where we plays on the computer and then we look for truck and race car books, running up and down "the hill" aka our ramp out front, and playing the yard.  As long as Stephen gets play outside, he's the happiest kid on the planet!  Can you tell I'm one proud Momma!!!!

I've taken a boat-load of pictures lately, so here are some of my favorites.  And on another exciting note....Stephen's kidney donor, Kristin and her husband Matt, are coming to visit us for the weekend!  Yippee!!

 

 

 

Finally got Stephen to wear his feeding pump backpack.  It's the first time he's EVER put it on.

Happy October!!!

  

Weekend in Pictures

All three of us are recovering from colds and the sniffles, but we managed to have a great weekend either doing nothing but watching TV or enjoying the Bluemont Fair in Bluemont, VA. And best of all, Stephen had his last home infusion of IV antibiotics on Saturday morning and then a nurse came to the house and pulled out his PICC line. We were shocked to see how long the line was (it went the whole way from his upper left arm to his heart!), but Stephen barely flinched when he pulled it out. Glad to have that behind us and hopefully will never have to do it again. Tomorrow, we have a visit to the transplant clinic at CHOP to catch them up on everything that's happened in the past two weeks and hopefully have good lab work.

HOME!!!

WE ARE HOME!!!!

More details to come about the plan for home infusion antibiotics, more doctor appointments and all that happened the past couple of days. Right now it's time to unpack, unwind, and play :)

Out of Surgery

Stephen is out of surgery and snoozing in recovery. His procedure went well to remove the port and the PICC line was placed in his upper left arm and working great! Per the usual, he handled it all like a champ! 

Surgery Tomorrow

Sorry should have posted earlier but the day got away from us! Stephen's surgery to remove his port and put in a PICC line is tomorrow at 8 am. It should be a short and simple procedure but it's always nerve wracking taking your baby into the OR and I never look forward to leaving him in someone else's hands. Although I feel super confident that Dr. Kim, the surgeon, will do everything perfectly! He's never let us down before!

Hospital Life

Here's an overview of a day in the life of a little boy stuck inside a hospital:

Zooming cars and trucks where ever he can

Watching cranes and construction workers (aka Bob the Builder) build a new tower at the hospital 

Getting to spend a little time outside

Greeting everyone in the hallway

And finally feeling better!