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!

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!

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!

A Visual Guide to KayTar

(Click to enlarge)

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.

April leftovers, Photos and Fun

April Leftovers, BubTar.

Science Fair:
BubTar went to District Science Fair again this year, one of six kids from his school! He received a silver medal for his project, The Great Steak Experiment!

Celebratory milkshake!

Tennis:
BubTar started tennis lessons this month. The school district offers a program where elementary kids go to the local high schools and learn a little tennis from the coaches and students, probably with the hope they will want to join the program when they get to high school. Oliver! was at this campus and BubTar's student instructor was in the play with him AND remembered him. He loved that. He isn't a very sporty kid, but so far, he likes tennis.

Author:
BubTar wrote his first book! It is fan-fiction entitled, The Star Wars Hunger Games. :) It was such a great experience for him. He would come home after school and write every day! His teacher was so supportive of his efforts and would allow him to read it in class as he made progress. Once he finished, she even made a cover for him and had a copy bound, which he donated to the class library. Now he is working on his second book, BRAINS!!!, about zombies and his WHOLE class is writing books now! He's pleased to be the trendsetter for a change.

Pill-Swallowing:
BubTar is rarely sick, but he got sick last week and we realized exactly how much of a hassle it is that he cannot swallow pills when he threw up in the sink TWICE when trying to take liquid meds. Sooo we decided to do some skill-building and practice the art of pill swallowing. I bought mini-Chiclets and TicTacs and had him practice swallowing those. He got the Chiclets pretty quickly, but struggled a little with the TicTacs. By the second day, he was able to swallow the TicTacs after a few tries and the day after that, he was swallowing them first try! He was so proud! :)

April Leftovers, KayTar Business.

Well-check:
KayTar's well-check was way back on the 13th and it went well! Her gross motor strength is up from last year, but she has dropped percentiles in weight. Her height is 47.75 inches (45%), her weight is 47.5 pounds (30%), and her BMI is 14.75 (20%). The pediatrician said that if she hits the 15% for BMI, we'll have to start maximizing calories, but for now she is fine. Her BP was 90/60. No concerns or abnormalities that aren't already accounted for!

GI Check-up:
KayTar's GI check-up was on the 19th. It was such a nice change to get to discuss how well she is doing since the formula change...before we were discussing disease progression and how much she was struggling! She said we probably will never know why she stopped tolerating Pediasure or why the Elecare Jr. is working so well for her...but we'll take it! We need to recheck KayTar's LFTs because they were slightly elevated in 3 sets of labs in a row, but got put on the back-burner while her GI tract was having so much trouble. After she sees Genetics next week, we'll have the labs drawn to minimize pokes!

ARD Meeting:
KayTar's ARD meeting went well, as always. Sometimes I feel like the only parent who doesn't dread these and somewhat enjoys them! Someone always has a fun KayTar story to tell and there is always a lot of discussion of how SMART and FUNNY she is...and what parent doesn't like to hear that? Mostly things will be staying the same for her, her will still be mainstreamed and she still qualifies for services under her OHI, AI, and SI labels. She will still get speech therapy for articulation for the same number of hours. She will still get health services from the nurse. She will still get preferential seating due to her left-sided hearing loss. The main changes come in the form of modifications. KayTar has struggled a bit this year, mostly in math, due to her ocular muscle weakness, fatigue, and fine motor weakness. She knows her math facts (which her teacher confirms), but has failed timed tests on more than one occasion. Also, even though her writing process is great she often does not get full credit on writing assignments because of her fine motor issues. Next year, she will get shortened assignments, she will be instructed to use a half-sheet to cover excess information, she will only be graded on completed work during timed assignments, she will not be graded on mechanics of writing just the content, she might use a word processor if needed, and she will get a written copy of what is on the board for her to reference more easily. I *think* that is most of the modifications that are new for next year.

One Decade.

Ten years ago today, after 40 weeks and 5 days of pregnancy and 14 hours of labor, this little guy came along and a couple of married teenagers into parents and made us a family! Looking at him now, I can hardly believe he was EVER that small...but looking at his baby-self, it seems like the years went by in a blink! He has grown to be such an intelligent, handsome, funny, sharp-dressing, unique character and I'm thankful for him every day! It has been a wonderful decade and I can't wait to see what the next one holds for him!

THIS MANY!

He had a great birthday weekend, I think. It started on Thursday with dinner out at the restaurant with my parents and opening gifts from them. On Saturday, we took him and a friend out to a pizza buffet and let them sit on their own. After dinner, we sang "Happy Birthday" and let him open presents, we were all too stuffed to tackle the cake at that point! Then we went to see Hunger Games again and also let them sit on their own. BubTar was so funny, when the movie was over, he was back by our side in a flash! It was his first time sitting apart from us and I think he was concerned about getting lost in the foot traffic. When we got home, the boys built K'Nex Robots and watched Real Steel into the wee hours of the morning. We got McDonald's for breakfast and the boys continued to build things and play Star Wars games on the Wii. We didn't do a big party this year, because he's getting to the age where he doesn't care about having a big family gathering and he preferred to have a sleepover instead. After his friend went home, he wasn't feeling great so he opted to skip tennis and rest before going to dinner at his grandparents' house that night for dinner of his choosing, fajitas and Boston Cream Pie. It was nice to have a low key, spread out kind of celebration for him this year. I still cannot believe he is TEN. It just does not seem like it has been a decade since I first held that sweet little baby boy in my arms! Happy birthday, BubTar! We love you soooo much!

This is my very favorite birthday memory of him. He was 4 and he wore this tuxedo to Chuck E. Cheese for his party...and he wrote this little ditty. He could NOT be more adorable. 

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MRI today!

Last month, KayTar had a really strange day. It was a Saturday and we were just hanging out at home, having a relaxing kind of day, and KayTar kept saying, "Am I dreaming? Is this a dream??" in a very serious way. She was almost to the point of being a little panicky about it. The first few times, I didn't really pay much attention, but as it continued, it definitely caught my full attention. She was having real difficulty knowing if the world was real or if she was suddenly in a dream, in fact, she even went upstairs to check and see if her room was still there! It happened maybe a dozen or so times through the day.

We talked about the feeling she was experiencing. I asked if she was feeling floaty or light-headed (thinking it might be migraine/aura activity) and she said no. I described deja vu and she said it was not that either. She tried to draw me a picture, it showed her with a thought bubble that said, "Am I dreaming?" and at the top in capital letters, she wrote "NOT DEJA VU!" It wasn't elucidating, but it showed how much she was trying to communicate this feeling to me.

I called her neurologist/headache specialist on the following Monday and the nurse called me back and said not to to worry about it if is was an isolated day, but if it happened again, to call them back. It could be a migraine phenomenon or a simple partial seizure. Simple partial seizures are not the "normal" kind of seizure and the main difference is that the person experiencing them stays conscious for the seizure. If KayTar is having these, it is probably either a sensory seizure or psychic seizure, based on her description (click for more information)  A couple of weeks later, it happened to her at lunch at school. Again, it was short-lived and she came out of it on her own, but I still called the neurologist to let her know. She didn't call me back, but the following day I got a call from central scheduling about a new MRI. So that is what we are doing today and why we are doing it, and they will also be getting images of her brain stem for the pulmonologist. If the MRI comes back normal or KayTar-normal, then the pediatrician will be ordering a new EEG...and if it isn't normal, I'm sure there is a set of testing awaiting us behind that door, too.

The pediatrician wrote an order for half-normal saline and D5 to be run during KayTar's MRI, so hopefully we can avoid those labile glucose levels she has experienced after the past two sedations...and I'll be sure to tell everyone NO LR! Fingers crossed for a smooth day today!

***

I intended to post this before we left this morning, but my browser locked up on me before I could! We are now home from the MRI and it went swimmingly! Everyone listened to my requests/the pediatrician's orders, she was giving D5 1/2NS  as requested, put to sleep with propofol in her IV instead of through the inhalant mask (which she HATES), and it went really well. She had the same nurse anesthetist as her last surgery (when recovery didn't go so well) and she remembered her (and the rainbow IV arm she requested) and it made me feel much better to have her in familiar hands! She woke up wonderfully and her glucose has been GREAT and STABLE! I'm so happy!

She wore her sock monkey hat to the hospital (which she got loads of compliments on from doctors, nurses, the valet guy, and random people in elevators!) and on the drive in she told me, "If they forget to take off my hat, they will get pictures of my monkey's brain and the report will just say 'Stuffing.'" It cracked me up!

She brought Mrs. Chicks with her, a pink gorilla who shares an affectionate nickname with KayTar's school nurse (which is who gave her the gorilla), because she wanted to feel like she was close to her while she was in the hospital. Mrs. Chicks got an MRI, an IV, and she got to go back to the scan with KayTar...I didn't even get to do that! Thank goodness for loving gorillas who take good care of her when I can't be there. ;)

Gorilla MRI

Pokes for everyone!

Recovering nicely. :)

And my favorite picture of the day...

My very favorite monkey! ♥

All in all, it was an extremely smooth procedure and I'm so pleased that the new protocol worked well for her!