While having dinner last night with some special friends, it was kindly brought to my attention (wink wink) that I haven't blogged since February 27th….oopsy-daisy!! And I kinda sorta made a statement that I haven't really had much positive to say since someone has been a big stinker lately in the behavior department. It's a running joke in our house, but in reality, not a whole lot has been happening with the little guy (in the exciting department). He did get better from his fever, then he got a head cold, and a little GI bug, and then the cold settled into a cough. So we made a couple more trips to the pediatrician and one trip up to CHOP for his monthly transplant clinic a few weeks ago.
The trip to CHOP went ok, but his lab work was a little all over the place. His creatinine was up, his white blood cell count down, and some of his other electrolytes were also out of whack. But everyone thought it might have been attributed to the virus he was getting over and being a little dehydrated since he was having trouble keeping his tube feeds down. So, they didn't make any changes to his medications, but asked me to take him for some re-peat bloodwork at home. It took me a little longer to get him to the lab because he was still fighting some kind of bug and I wanted to make sure he was super hydrated when I took him for labs. So we finally just did that this past Friday and we'll hopefully get those results on Monday. I'm really hoping we get good numbers this time, because I fear if we don't, CHOP will ask us to bring him to the hospital for a "tweak" with an overnight stay. And I'm avoiding that like the plague!!!
But in all honestly, we have been dealing with some behavioral stuff lately. Most of it, I'd say 90% of it, falls within the typical "terrible 3's" category; but some of it does not. After talking with Stephen's pediatrician, we're pretty sure he's got a bit of post traumatic stress disorder (PTSD) stemming from all of the hospitalizations, procedures, surgeries and doctor visits he's endured. It now rears its ugly head when we go into a doctor's office or hospital, or for example this past week when I took him for his yearly bone-age study (hand/wrist X-ray). He panicked when I parked the car and when we walked into the office, but then calmed down while in the waiting room (thank you to Apple for inventing the iPad…it's a serious God send!). But freaked out when the x-ray technician came out to get us and he was dressed in scrubs. However, when we walked into the X-ray room and he saw the machine and the table….it was all over. I'm talking throwing punches, screaming, wailing, and just losing it. And he was fully aware that all it was was a picture of his hand…we even practiced slamming his hand down on the table like a hand print. But it didn't matter. He felt threatened and that was it. He's always had some form of this and always while hospitalized, but it's gotten exponentially worse over the past 1-2 months. And the same feeling he's having when it comes to medical-related things, is spilling over into normal life. Right now it's the bath tub, whereas just a few weeks ago, the bathtub was fun. Now, it's threatening and scary. Any time he feels threatened or scared or unsure, the panic and anxiety takes over. I know this isn't unusual for kids who have been through a lot medically, but we don't want him to feel scared in situations where there isn't anything to be scared of and we certainly don't want to do anything to make it worse. And hopefully by working through this now, it will help to make the transition to school easier down the road. So, I'm working with his doctors and the medical staff to come up with some sort of plan/resources for us.
So…that's what we've been up to!! :) Oh that, and trying to buy a house. We've finally, after months and months of looking and debating, have decided to purchase the home we've been renting for the past year. It’s nice to have finally made a decision and to start putting roots down and making our home really our own. We close at the end of next month and then our weekends will be filled with knocking out those home improvement projects!! Fun fun!!
|Goofing around at the Famous 4th Street Deli in Philly.|
|Working on wearing big boy undies. It's VERY slow going. Stephen will love me for this one when he's 16!! :)|
|Breakfast of champions!!|
|Best part of the day is when Daddy comes home and Stephen get's to pull his car into the driveway.|
|Stephen was sampling cupcakes last night after we got home from dinner. Thank you Cheryl and Kathy for a wonderful evening and for the delicious treats!! Mabel was clearly DYING to get her paws on them!!|