Monday, May 21, 2012

My husband is awesome.

Saturday was our 11th wedding anniversary. We had no real plans...or so I thought! Last year we went to Vegas and I figured we would just do something simple this year and that was okay by me. My parents called me last week to ask if they could take the kids out to their country house on Saturday night, because they've been wanting to give taking KayTar out there a try. I told them I needed to check with Josh and if he was okay with it, it would be perfect since it was our anniversary anyway. My mom said, "Oh, it is? That's right. I forgot!" Josh said he was okay with it, so I knew we at least had a sitter if we wanted to have dinner or see a movie. We had also talked about having brunch on Sunday, but the plans were all a little vague and I thought we would just play it by ear. The boys went to scout graduation on Saturday morning and I worked on getting the kids packed up...packing up KayTar for even ONE night is quite a chore.

After the kids got picked up, Josh said, "Okay, now it is your turn. Pack an overnight bag and wear something that will keep you cool and comfortable." I was totally surprised! In fact, most of my clothes were in the washer and I had to wait for them to finish drying before we could pack and go. I had an idea of where we might be going based on what he told me, but wasn't 100% sure. While I waited on my clothes to finish up, Josh was outside trying to finish the big dog run he had bought earlier in the week. He had been working on it every spare minute since he got it (I did find it odd that he seemed so obsessed with getting it done) and it still wasn't quite done. Now it made since...we needed that kennel so we could go out of town for the night! Dobby cannot be trusted in the yard, he'll escape every time. We put the dog run on the cement so he can't dig out. It was *almost* done, the only part left was wrapping the chain link at the bottom. There wasn't time, so we just pushed stuff around the edges and hoped for the best! We headed out and Josh drove a little bit differently than he usually does to try and throw me off, but I was pretty sure where we were going...and I was right! We went out to Kemah and pulled into a B&B (which I didn't predict). It was right on the water and about a block away from the Boardwalk!

Out our window
After checking in, we headed over to the Boardwalk and spent the afternoon riding rides. It was SO fun. I miss Astroworld so much, but the Boardwalk is a passable substitute. We rode everything (except the little kid rides) and headed back to the B&B for an hour to cool off and exchange keys (there was a mix up) before heading out to dinner at RED Hibachi and Sushi. It was delicious! Josh ordered an appetizer of tempura battered jalapenos stuffed with crab and cream cheese (yum!) and we split the lobster, scallops, and shrimp dish. It was more than enough food, I was stuffed! After dinner, we went back out and rode rides again. SO FUN! We haven't spent a day doing something like this in many, many years. It was perfect.

We went to the top of that and dropped. FUN!

We headed back to the B&B around 11:30 when some of the rides started to close. When we got back to our room, he pulled out a bottle of our favorite wine, the glasses from our wedding (way back when we were too young to drink), and chocolate and butterscotch covered strawberries that he had made the night before. My sister-in-law had texted me to see if I wanted to go out on Friday and I didn't think anything of it, but turns out Josh was sneakily getting me out of the house. He said he had the wine in the fridge for days and I hadn't noticed it! It was a perfect end to a perfect day! I honestly could not have thought of/asked for a better day than he planned for us. I'm still SO impressed by all of his planning and secret-keeping (from him AND everyone else who knew!). I am a very, very lucky girl.
To 11 years and many, many more...

11 years ago, Josh and I were a couple of crazy teenagers getting married. I was wearing blue Nikes under my wedding dress, we were too young to drink at the reception, and we really had NO idea what life held for us...but we knew that whatever it was, we wanted to walk through it together. Best decision ever!

Monday, May 14, 2012

Still sick...

BubTar is still sick. Or sick again. But I'm leaning towards still sick. He ran fever Sunday-Friday, seemed okay on Saturday and during the day on Sunday and then last night/early this morning, he spiked a fever again. 103.7. He has been so lethargic today, I don't think he's been awake for more than 30 minutes all day. The pediatrician wanted to see him again today, so I brought him in, but the exam wasn't all that elucidating. His exam was unimpressive; eyes, ears, throat, lungs, abdomen...all clear. He has some swollen lymph nodes, but that is all. She did a mono spot (which was negative) and a CBC (normal WBC (6.2) with a left shift (17% bands, I think). She decided to treat with zithromax, because secondary bacterial infection is most likely, even though the source isn't very obvious. I don't think he has ever been sick like this, so I'm a little worried. He took his first 2 antibiotic pills today and I'm REALLY hoping it makes a difference by tomorrow. He's not eating or drinking well because he is so sleepy and he's spilling some ketones in his urine...if he keeps sleeping like this and not drinking, he might end up needing IV fluids. The pediatrician wants an update tomorrow and if he isn't BETTER by Wednesday, we're going to have to do more aggressive digging to figure this out. Hopefully he will turn a corner tonight and feel a bit better by morning!

Friday, May 11, 2012

Week in Review

BubTar came home from a weekend in the country on Sunday and promptly spiked a fever! The next day he stayed with my mom so I could take one of my finals and when I picked him up, he told me his thumb was swollen. When we got home, his other thumb was swollen. An hour later, he went into the bathroom and called me, "Mom...I think you should look at this."

Yikes! Look familiar? Kind of like this? Or this? Not quite as impressive and he didn't have any other systemic involvement (like KayTar's vomiting), but similar! Since he had been in the country over the weekend, I checked him for ticks/bites, but all I found was a torso covered in hives! Benadryl helped the swelling come down pretty quick, but we still don't know what caused it. If it happens again, he'll have to have allergy testing...we're not supposed to have to do this stuff with him! He's been absent from school all week, with adenovirus and the high fever that comes with it, and KayTar said, "I guess God decided to change it up!" He finally seems to be feeling better today, no fever yet and he's back to arguing for sport! Joy. ;)

KayTar saw a new geneticist yesterday, Dr. N, and she was very warm and friendly...odd for a geneticist! She thinks that the most likely suspect for KayTar is mitochondrial disease and ordered nuclear mitome testing. It sequences all 448 nuclear genes that are involved in mitochondrial function. There are two sets of DNA involved in mitochondrial function, the mitochondrial DNA which is inherited from the mother and the nuclear DNA which is inherited from both parents. She has already had her mitochondrial DNA sequenced, with no abnormalities found. If she does have mitochondrial disease, her mutation is most likely in the nuclear DNA because there is not a familiar history of her condition. The test costs $17,000. YEAH. $17K. Sooo, we are hoping insurance agrees to cover it. We don't pay a co-pay on labs, so I hope that will apply here as well, because SEVENTEEN THOUSAND DOLLARS cannot be found in our couch cushions. If this test comes back clear, then she wants to order exome sequencing next. That is sequencing of all of the exons in her genome. Exons are the active parts of DNA, which code for proteins...85% of active, disease-causing mutations are found in that portion of DNA. Then there is also whole genome sequencing, which sequencing EVERY gene in EVERY part of DNA. Fingers crossed that we find something before that! We also had blood drawn to recheck her LFTs to see if they are still elevated.

Speaking of mitochondrial disease, last night I went out for dinner with a local mito moms group and it was so nice! I mean, it was nice once I got there...the drive out was a little stressful. My GPS insisted on me taking a road that I could not take (EZ Tag only and I don't have EZ Tag! Now I'm expecting a ticket/invoice because I exited onto that road without knowing!) and it would not give me an alternate route, no matter how many times I asked. I made a dozen frantic calls to Josh and he magically got me there in one piece. What a wonderful bonding experience THAT was. Haha! The dinner itself was well worth the stressful drive. It was just nice to be with people who understood this life and had so many things in common. When I talk to most people, I feel like I should use a translator, so many conditions and tests and specialists to explain to people...but all these ladies already knew all of that! It was refreshing and relaxing. I'm definitely looking forward to doing it again next month...but I won't be trusting my GPS with the directions!

In other news, the semester is over. I survived! The kids survived! Josh survived! :) He is GRADUATING tomorrow, magna cum laude! I'm SO proud of him. It hasn't been easy to get through school with a job and a family and a KayTar, but he has done it! He's the first in his family to get his bachelor's degree. I can't wait to see him walk across the stage tomorrow. SO PROUD! Hopefully, that will be me a year from now!

Thursday, May 10, 2012

A Visual Guide to KayTar

(Click to enlarge)

Tuesday, May 01, 2012

Good news!

Last night I talked to the neurologist's nurse who told me that KayTar's MRI was improved relative to her prior scans. I couldn't ask her for more information because she was just quoting the doctor and did not actually have the report in front of her. So I sent an email to the pediatrician asking her to look at the full report for me and tell me exactly what "improved relative to prior scans" means. She called me today, because the report was so impressive she wanted to read it to me! Basically, it was an almost totally normal brain scan. The report said that there was "near complete resolution of the lesions". As in...almost completely gone! It was shocking and wonderful news and I could hear the pediatrician smiling through the phone! We don't know why her scan improved so much or what that means...we just know that it DID improve, a lot. KayTar is still KayTar and she still has a confusing and complicated medical picture, but it is SO good to know, from the black and white of a radiologist's report, that something big has gotten better.