It's official, summer vacation is over. Lucy was the first to wake up Monday morning reminding us all that it was the first day of school, silly girl you didn't need to wake up so early. Halfway through the day she asked me if the kids were at camp. I told her no, the kids were at school, to which she said, "I gonna tend(pretend) they at camp, kay mama." She misses them so much.
My mama called me while Lucy and I ventured out to the store for yet more school supplies and socks that actually fit Megan's and Jack's ever growing feet. Since all they ever wear are flip flops and Crocs how was I to know that they didn't have any socks that fit them? She asked me if my day was quieter as Lucy was literally yelling at me to keep pushing her wheelchair so that we could find an orange folder that Megan, and apparently Lucy too, needed for school. I had to laugh, quieter is a relative term. Yes, it was quieter in that I only had one person, not four, talking/demanding to me continuously! Lucy's school/therapy services are all home based due to her fragile medical status, but one orange folder for her and apparently a pink pair of scissors just had to be had according to Lucy. Don't worry Dr. R we'll be very careful with those scissors around her lines.
I am one of those mama's who usually does not look forward to the kids going back to school, I love having all of my kiddos home. However, this year I am feeling slightly different about the start of school. Our daily life revolves around our kids, but in particular Lucy's daily care and med schedule. Our summer was anything but relaxed, and our daily routines kept us all going. Lucy gets easily overwhelmed with too much activity and with four kids in our house, activity abounds. Afternoons had to be quiet in order for our energy deficient child to get her much needed afternoon siesta, so many a summer day was filled with extra curricular camps, outings, and play dates for the three non nappers in our house. This meant that I had to coordinate a driving/nursing schedule that rivals any international airports flight schedule. The kids had a blast this summer and that is really what matters. I too enjoyed as many moments of it as possible, but will admit that I had to do more some days than I ever thought I could.
On the first day of school it was back to business as usual, minus some tears from Lucy because she missed "her kids". Laundry, breakfast served, lunches packed, dishes, showers, hair do's, backpacks packed, more laundry, meds, meds, and more meds infused, diapers changed, sheets changed, urinary catheters changed, my clothes changed, an e-mail drafted to Dr. R about the possibility that Lucy has C-diff again, phone calls to the Department of Human Services made over and over starting at exactly 8 AM and finally ending at 11:42 AM when I was connected with a real live human being to inquire about the status of Lucy's medical assistance (oh don't even get me started, let's just say that PA changed one of the requirements for renewal this year that I didn't know about..grrrr), did Lucy's weekly lab draws and dropped them off at FedEx...ALL of this was done before noon on Monday, I kid you not! Afterwards we were on our way to run a few errands and then quickly(who am I kidding, it takes me about an hour to do this) come home to change TPN in an effort have Lucy in bed by 2:00pm, much later than that she turns into a pumpkin with low blood sugar. Like any good mama Lucy and I also baked the kids some cookies for an after school treat on Monday. Confession, I bake them cookies because I love my kids, but also because if you are going to get any "real" information out of them about the first day of school you need leverage especially if one of your kiddos happens to be a sixth grade boy(gosh, when did that happen?)!
Mom, Paul wants me to call him at 4 o'clock.
Why, what for?
Just to talk.
But you don't like to talk on the phone, and neither does Paul.
Yeah, I know.
SO, why are you going to do it?
Cause everyone else in sixth grade is doing it, so we figured we had better start too. I mean mom, don't you think we need to start somewhere?
Ummm...NO, not really!
Jack, you know the bridge scenario...
MOM, it's just the phone!
I'm not sure I am ready for all of this...
The cookies worked, I learned more about the first day of school than I ever thought I would, sibling rivalry helped too. For every one comment about so and so's first day, two followed about the other persons day, and so on and so forth. Emergency cards have all been updated, you know since emergencies are our speciality, with new contact information as our dear friends the Puff's are moving to Hong Kong at the end of the week and as such a new emergency contact needed to be established. Our hearts are torn, we are so excited for our friends great adventures, but we are so so sad to see them go...really, I'm not sure how we are going to live without them.
Lucy's weekly therapy schedule is back in full swing after having a few weeks off this summer for illness then summer vacation. She is choosing to call therapy school this year as she is craving to be just like the big kids, "Mama, I call my therapies cool(school), kay! School is not really in Lucy's future, but we talk to her about all of her wishes and desires like they will happen someday. It is difficult living with a the knowledge she has a disease that is progressive and degenerative, as much as we choose to look at the positives in her life, we grieve for her and all of the "typical" milestones that most children have to look forward to in their lifetime. Grief is a part of daily life when you have a kiddo like ours, but try not to let it get us down.
I am working on an eleventh hour post about the upcoming UMDF DelVal Energy for Life Walkathon coming up on September 8th, 2012!! Yeah, I am way behind in doing anything for this, I know! To all of you who know and love us and have already set aside the morning of the 8th to be with us, we love you and thank you from the bottom of our hearts for your love and support. We are looking forward to the event. And for those of you who are waiting on more information, stay tuned.
Thursday, August 30, 2012
Monday, August 6, 2012
I wanted to quickly write an update to let you know that we are home, tired, and relieved to be all together under one roof. Everything went as expected today. We were even able to have the surgeon take a tissue sample for a biopsy that is being sent to another hospital for further testing. Lucy's new line flows like a river. She is experiencing a little discomfort from all of the days events, but we have enough meds at home to help her with any pain. We are finishing up a course of antibiotics that runs every six hours, which means that sleep is going to be challenge for the next few days. Speaking of sleep, I'm going to bed. Thanks for all of your thoughts and prayers, we could never do this alone!
Saturday, August 4, 2012
Yesterday it hit us...the seventh day melt down, that's what we refer to what happens to our family with every admission at around the one week mark. After seven days we are all feeling the effects of being separated, stressed, off our schedules... We're all tired, lonely, scared, stressed, bored, worried, craving home cooking, craving normalcy, and in need of a healthy dose of family time. Usually after a week we have an idea of how and where things are going, it helps us to mentally prepare for what lies ahead. The number one question our kids have with each and every admission..."When are Mommy and Lucy coming home?"
Thanks as always for your thoughts and prayers, love and support!
We have an OR time slot for 9:00AM Monday morning, and if all goes well we hope to all be sleeping under the same roof Monday night.
Thursday, August 2, 2012
Wednesday, August 1, 2012
After three days of growing time, Lucy's blood cultures from Saturday are positive for growth, really. Typically when you are presenting as sick as Lucy is you would expect that blood cultures would be positive for growth within the the first 24 hours or at the very longest 48 hours, typically. Lucy is anything but typical and once again she has proven everybody wrong. Not sure what the plan is going to be just yet, but now we have a direction and something to treat.