Well, Dr. Brackman gave Jeff the best birthday present today when he said, "I see no measurable growth in the tumor. See 'ya next year." 3 days of driving for 3 seconds?? You betcha!! What a 3 seconds it is!! He is not concerned about Camille's beeping. He said everyone has beeps. He explained to us that IF Jules has NF2 (and that is a big if because Brackman does not think he has it) then it is a spontaneous development because neither Jeff nor I, nor our parents, have NF2 as far as anyone knows. So if he has it, he has not inherited it (although he could pass it on to his own children). Therefore, if any of his siblings have it it would be the equivalent of the Universe pooping on us, which would be unlikely because we are such lovely people. However, Camille was disappointed so he looked in both of her ears very seriously. Then Jasper said he heard beeps so his ears were also carefully examined : ) BTW - thank you to AnneMarie Kane for lovingly providing Jules with reflexology every Tuesday, paying special attention to his brain and ears. Who is to say this is not keeping the tumor from growing? And he really enjoys his time with Ms. Kane because God (and AnneMarie) knows he doesn't get enough attention at home.
We were told to arrive at St. Vincents hospital this morning by 8:00, which meant we left the camper at 6:30 in anticipation of LA traffic. His MRI was supposed to be at 8:30. We arrived at 8:00 and the hospital said, "Jules who? Why are you here? Who has sent you? Do you come in peace?" and even though this has never happened to us before, I had been worried it might happen this time since we had the entire familia with us.......Luckily they generously obliged us before I had to break down and re-live the 3-day trip to get there. But instead of being at the hospital for 1 hour, we were there for about 4. Jules was a trooper. He hates getting the IV but all the techs tell him he has great veins (he is going to grow up thinking this is a positive physical attribute to list in a singles add). His hearing test confirmed that he is still deaf in his right ear - which always cracks me up because it is irreversible damage. His left ear was good but somewhat imparied WHEN "trash" noise is produced by the bad ear, which seems to be getting better or Jules is simply getting used to it.
Jules wore his new shoes today. But although I had managed to cover his toes, I failed to cover his ankles. He doesn't wear jeans much so I hadn't noticed that all of his are at least 4 inches too short : ) Between his pants and his brother's perpetual frantic hair, I realized that it is just hard to camoflauge homeschooled kids in public. When Dr. Brackman asked if we homeschooled I began to explain that I simply hadn't noticed Jules' pants were so short, plus he is super skinny and it is hard to find long enough pants......turns out he just noticed we were taking a vacation during the school year : )
After the immense relief of the visit we met my cousin, Reyn, and his wife, Marie, for lunch in Chinatown (1 word or 2?). We had a DELICIOUS lunch and the kids were famished and enjoyed every bite. Reyn is our knight in shining armour because he was making a rare visit to Texas when Jules was diagnosed with the tumor and said, "Hey, there's a place in LA where they treat more of those tumors than anywhere else...." and that has made all the difference in Jules' treatment and avoidance of surgery. The kids loved exploring Chinatown. Camille bought a present for Keziah and a piggy bank for herself. Jules added to his turtle collection with a little statue. Then we went to a Farmer's Market place that Jules always enjoys. The collection of people who visit there is just really interesting and Ellie was like, "Oh! I could live here!" We ate some sweets (cheesecake for Jeff's birthday - ice cream for the little ones) and walked around soaking up the atmosphere. Then we drove through Beverly Hills enjoying the colorful landscaping and greenery (and the mulit-million dollar mansions). No Paris Hilton sightings this time. We took a breathtaking drive up above the city on Mulholland Dr and then headed back to the hood to make dinner. Jeff cooked his own bday dinner of spaghetti with textured vegetable protein sauce - still appeasing the princess. BTW - she ALMOST broke her year-long streak of avoiding eating anything of consciousness when she saw the rows of smoked salmon at the market....but she didn't.
Camille has her Disney princesses shirt all laid out and ready to put on first thing in the morning. I have promised Juliana that I will force Ellie to pose with Cinderella. For some reason, this image causes her to become tickled.
The important part of the trip is over but we plan to keep posting so please keep commenting! We love coming back to the trailer to read what you've all said!! FUN! But if any of you are planning to continue correcting my spelling I will be forced to block you from the blog if I can figure out how. And I KNOW how to spell Feenux, Arizona. I was just tired. DUH.
Sardine Mama
sew glad too here the gud nuze.
ReplyDeleteso happy to hear the news... first thing i laughed at was the words "do you come in peace?..." i can only imagine what you looked liked walking thru those doors. have fun @ disney!
ReplyDeletealso... happy to see ellie in a pic & can't wait to see the princesses together soon!
ReplyDeleteI am so sad to hear that the boots are no longer adorning Jasper's feet. He has been wearing them since I have known your family. I guess we are now in the APB age (after pink boots)
ReplyDeleteGreat news about Jules (and Camille and Jasper, too) You were all on my mind a lot yesterday. Enjoy Disneyland.
Michele
Happy B-day mr. Jeff!
ReplyDeletei'm really happy to hear that everything is cool with Jules.
sound like a really exciting life with all the interesting trailer park people.
thanks ellie for being more cooperative now (love you:)
just the thought of ellie with a Disney princess is amusing to me (or as ms. carol put it, tickled.) hey, it's what friends do, and it's ellie's turn to please me (long story).
anywho, have fun in Disneyland and keep enjoying your trip.
-julihana
The boys made us scroll in on Jasper's new shoes in the pic of him getting his ears checked. We had to laugh when the next pic was Jules's new shoes. Glad things are working out so positively! Keep posting we love reading these in the morning.
ReplyDeletenicole, cody and austen =)
p.s. I keep finding unclaimed shorts and shirts..they may belong to Pavliska boys.
Glad to hear the appointments went well. Enjoy California!
ReplyDeleteLove,
Aunt Susie
What a great birthday present that was. Love to all.
ReplyDeleteRoxy and Wendy
Joyce asked me to tell you how happy she was over the MRI results..she wanted to tell you herself, but could not figure out how to comment..says she is electronically challenged.
ReplyDeleteDo they still have the Tiki House at Disney..remember ? Where the birdies sing and the flowers bloom
Never realized how much home schooling and my job in working from home have in common (my usual question is...what do you mean I can't wear a tshirt and my jeans with the hole in the knees?)
ReplyDeleteWonderful, wonderful news on Jules. Now GO HAVE FUN!
Love to you all,
Sarah
Yay for Jules!!!
ReplyDeleteI have just started reading and am loving the blogs (and Camille's taste in shoes!).
Can't wait to see the pics of you Ellie! I wonder if Sarah (from band) is reading this? I'll send it to her incase she forgot or didn't get the emails.
Much love and best wishes guys!!
-Hannah
I'm doing the happy dance after hearing about the thumbs up of Jules great news. Know ya'll are having way too much fun on your family adventure. Don't talk to any strange mice :-)
ReplyDeleteHugs,
Mrs.K
PS: Since I missed the day I can only say HAPPY UN-BIRTHDAY JEFF!!!