Black-Tie Optional

Tidbits and points of interest from Wed until Sunday...

Wed AM: Oliver woke up with a rash on his arms and legs. We were puzzled about the rash and it set off my mom-of-a-kid-with-TSC alarm big time. Every medical thing that happens is now viewed through the lens of TSC- so it adds another layer of complexity when these little surprises show up. So, we photoed the rash and emailed the neurologist immediately. My fear was this rash was a (potentially very dangerous) reaction to his new, increased dose of medication. The new med has worked so well that the idea of trying a 4th med made me flustered. The neuro felt that since the seizures were controlled well and Oliver wasn't a zombie we should really try and avoid taking him off the med- we agreed. Was the rash related to a virus, some kind of environmental irritant, the medication, who knows...so, on the neuro's orders we waited it out until the next day. Just to throw in an added layer of stress we were supposed to leave Oliver with friends for the weekend to attend a family wedding. So I had 48 hours to get this resolved or my toddler would be crashing the black-tie affair which was not the plan (and you know I have a plan). Suddenly, it all feels uncertain, which is a new, enduring theme in our life! Will I ever adjust?

Thursday AM: Rash was worse so we decided to go to the pediatrician to get a formal diagnosis and be assured Oliver wasn't having a serious reaction to the med. The ped diagnosed him with hives, a double ear infection and wheezing. At least we got our money's worth! The ped couldn't tell us what caused the hives but suggested that, if we give him Benadryl and the rash doesn't get better, it might be a med reaction and to come back in. So we got the Bendaryl, the anti-biotic and we waited.

Friday 8 AM:Rash isn't worse but, it also isn't significantly better. As requested, I called the ped, left a message and gave him the AM update. I think at the office visit he saw me for what I was (a woman in a desperate need of a break) so he had a nurse call me back and say "Since the rash isn't worse you should definitely go away for the weekend....you need it!"AMEN! That resposnse was the answer to my prayer. I just wanted to feel at peace about leaving Oliver- it has been a traumatizing 2 months. The other 2 times we been away from him overnight, have been rather carefree but, this is all so new, and I needed real, professional permission to go. That phone call was what I had been praying for, a big, bright, shining green light to GO.

Friday 12:45 pm: We get Oliver to sleep at Grace and Ryan's house. I am so serious when I say that they earned some extra jewels in their crowns in heaven for doing this for us. Oliver had to take 4 different meds, 3 times a day and get his rash tended too as well. I have put a picture oftheir son Samuel and Oliver playing together. They were so sweet and positive about keeping Oliver that it really helped us relax. We look forward to returning the favor for them sometime soon.

Friday 1:30 pm: As we drove to Southern Pines the city dissolved into the country and literallyand figuratively we exhaled. You can imagine the country air whipping through the car, BrandiCarlile singing on the stereo (check her out on i-tunes if you aren't familiar), bare feet on the dash, holding my hubby's hand- it was lovely :)

Friday 4:00 pm: Check into hotel and get the most amazing "Welcome Bag" I've ever seen! I was rather partial to the bottle of Chardonnay and bag of Southern Cheese Straws- is there a more yummy duo those two items?

Friday 7:00 Rehearsal Dinner- the perfect southern evening -pig-pickin and peach cobbler under the stars.

Friday 12:30 AM! - Fire alarm goes off in hotel. Was it a fire, oh no, just a fire alarm whose battery was dead, isn't that convenient? Really, Homewood Suites?

Saturday 3pm: Andrew's cousin Carter (a radiology fellow at The Mayo Clinic) spent over 1 hour looking through Oliver's MRI and CT scans with us. It was truly priceless to get this time and attention from such a highly trained and extremely intelligent doctor. He was so patient as he tried to explain rather complex concepts to us. We were mostly encouraged but, weren't thrilled to know that Oliver has some very small SENs where the SEGAs (those are the big scary tumors) could grow. It doesn't mean all the much, just that there is activity in that area and we would rather there be nothing there. We'll talk to our expert in Boston about these small areas and the best way to monitor them for growth. The bottom line is Carter is an answer to prayer and gave us power to advocate and ask questions we would have never known to ask without his help.

Saturday 6:00 pm- Sarah & Jason's wedding- it was exquisite. A true, world-class experience. I was so happy I got to be a guest! There wasn't one single detail that was overlooked. It was a blissful night free of cheerios, runny noses, and toddler melt-downs :) Maybe I can post some pics of the wedding- this is the only one we took- we were having too much fun!

Sunday 3pm: When we went to pick-up Oliver I was so excited to see that precious face. He was being so sweet I thought I would eat him right up! He was charming and we had a blast playing and hugging. As we are canoodling and enjoying our little family time we noticed Oliver had a reddish looking left eye. So here we are again...in the diagnosis conundrum. Is it pink eye, a medication reaction, allergies...etc.??? The good news is since he's been on anti-biotics since Thur., if it is pink-eye, he isn't contagious and it should help him get better. If it is something else time will tell. So we wait and pray that tomorrow we could have a day of 100% health for Oliver. These things keep taking me by surprise...aaarrggghhh...1 week of "normalish" would be very timely.

Psalm 18:28-29

You, O Lord, keep my lamp burning, my God turns darkness into light. With your help I can advance against a troop, with my God I can scale a wall.