Thursday, October 24, 2013

Pumpkins...and other stuff

Let me tell you something...we have been up to lots of fun things lately!! Bill was out of town last weekend and I had to take Stephen to CHOP on Monday, so we spent the weekend in Pennsylvania hanging out and spending time with my parents and Stephen's cousins.  I've been dying to take Stephen to a pumpkin patch since he can actually run around and enjoy it this year and have fun, but the weather has been pretty crappy here in Northern Virginia on the weekends and I have a hard time dropping $15 a person just to get into a pumpkin patch!  Being from Pennsylvania, I think it's totally crazy what farms around here charge for stuff like this.  So, while we were up in PA, we took a trip to a really cool pumpkin patch with Mimi, Poppy, Aunt Jess, Norah, and Chloe and had a blast! 

Stephen also had his first hay ride and loved every minute of it!  I was a little worried he would panic and want to get off, but he really liked it! He's WAY into trucks, tractors, and cars right now went crazy when he saw the big, old, blue tractor!


It continues to amaze me each time we visit my sister and her girls how much Stephen LOVES his cousins!! He's still at the phase where he just wants to be around them all the time and play with them and do whatever it is they are doing. We went out to lunch afterwards, and all three kids just entertained each other and the girls, especially Norah, look out for him and help him so much.  I'm hoping that it continues for many years because it is just so darn cute! And I'm hopeful that when Stephen finally starts preschool, he'll feel that way about other kids at school too (especially with his eating and potty training).

On Monday we made the trek to CHOP with the hopes that it would be our last every two week visit.  Dr. B has told me the last time that as long as Stephen's labs were stable last week and this week, we could go to visits once a month.  Although the lab here in Virginia screwed up last week and only ran the one set of labs instead of two (the doctor has ordered a CBC and metabolic panel and the lab only ran a CBC), what they did get looked good.  So I was very anxious to get the results of Monday's visit!  And everything looked great!  His white blood cell count and ANC were stable (still a little low, but no lower than they were), his creatinine is still a stable 0.3, and his prograf level was perfect!  So we got the go ahead to skip a few weeks!!  Hallelujah!  The drives between Virginia and Philadelphia are really starting to kill me, so I'm so happy to skip a few weeks!

Oh and I learned that both my child AND my dog seem to have adverse reactions to drugs.  Our vet prescribed Mabel some doggie xanax because she has such bad anxiety, especially in the car, but wouldn't you know it, my dog has the 1 in a 1,000,000 occurrence of an adverse reaction to the drug and went C.R.A.Z.Y! She literally went crazy for about 8 hours, including the car ride. It was a super fun trip up to PA! 

But other than that, all is good! I'm still working on the whole preschool thing, but feeling optimistic about my chances of finding a nurse through  And Stephen is continuing to improve on his food eating skills.  His foods of choice are still chips and pretzels, but he's now added jelly beans, candy corn, Fritos, popcorn, and the occasional cookie to the mix.  But more importantly, he's willing to pickup and try some different foods including a pickled carrot last week while we were out to lunch with his cousins.  Hopefully the trend will continue and by the time Christmas rolls around, he'll be ready to chow down on my Holiday treats!

Tuesday, October 15, 2013

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 :)

Thursday, October 3, 2013

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!!!