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!

Seating Clinic

Today was KayTar's first seating clinic appointment! She has needed mobility support for a long time, but until now we've been making due with regular strollers. The most recent stroller she has used is the Combi Strolee that has a weight limit of 55 pounds (which is why we bought it!). However, it is meant for a chubby toddler, not a long and lanky 7 year old, so it is NOT a great fit for her. Josh is looking forward to putting that thing on the curb!! Her need for mobility support, especially in community situations (the grocery store, mall, the Rodeo, the park, ect), is not going anywhere so it was time to finally take the plunge and look into getting a REAL chair for her. 

Initially, we were thinking of just getting her a larger medical stroller because I didn't think she would be self-propelling much with her fatigue issues. However, insurance only pays for a chair every 5 years or so, so this will have to last until she is TWELVE most likely. I couldn't quite imagine a twelve year old KayTar still in a stroller! I talked to a friend who has experience with her kids in a similar situation and she advised me to think about a regular, very lightweight wheelchair, because it had made a big difference for her daughter when going from stroller to wheelchair and she actually was capable of self-propelling for some distances. I talked to KayTar about it and showed her the two kinds of chairs and asked her what she would prefer and she was pretty stoked about being able to push herself! So we went into clinic today with that in mind.

It feels a little weird getting a chair for a kid who can walk, even though it IS medically-necessary. In fact, Josh said, "Can we get her a shirt that says 'METABOLIC MYOPATHY' on it so people don't think we're working the system when she hops out of her wheelchair to go run on the playground?" Haha! She just CAN'T keep using a toddler stroller (I don't know how we've made it work this long!), so this is just what comes next for her. I'm sure we get plenty of stink-eye now from strangers with our 7 year old crammed in a tiny stroller. In fact, there is a whole blog (which I refuse to link to) that consists of people posting pictures of kids that are too big for strollers that random people snap out in public! It isn't a totally uncommon thing for a mobile kid to need a chair for fatigue/stamina problems, but for the general public, it just isn't what you think of when you think of a person needing a wheelchair! I didn't know exactly what to expect from the seating clinic because of her semi-unique situation, but it was very simple and straightforward. I answered some informal questions about her condition, how we thought she would be utilizing the chair on a day to day basis, and what kind of chairs we had in mind. It was a pretty quick process, but I was glad I had done a little research beforehand, because it was quick and they expected me to have some knowledge about what we wanted going into the appointment. 

KayTar got to test-drive a wheelchair and she LOVED it! We could hardly get her out of it when it was time to go. She did great with it; driving, turning, stopping...it was neat! She declared it the BEST DAY EVER! After some discussion, we settled on the TiLite Aero X. I had been looking at the TiLite YR before the appointment, but the rep said that it is a very small, non-growable chair so it would not be the best choice for her. The OT recommended getting a swing-away front so she can use both her feet and arms to propel herself when she wants to, because a lot of kids are quicker/better at that duel propelling. Between those two recommendations and my request for a very lightweight chair, we settled on the Aero X. KayTar picked the color...hot pink, of course! And she wanted light-up front casters like the demo wheelchair had. She was so pleased and said, "Now people won't think I'm a baby in a stroller!" If all goes well, she should have her chair in about 2 months. I'm super excited because she is so excited!! 

You'll have to imagine the light-up casters for now.

Awesome moments.

Last night, I surprised KayTar with a special date for the two of us...Disney on Ice! I didn't tell her about any of it until after school, because I made her take an early bath since we would be out so late. She was SO excited, even though she didn't know where we were going. She begged me to tell her WHERE we were going, but not WHAT we were doing, so I did. Evidently she pays close attention to commercials because she said, "Are we going to Dare to Dream?!" I reminded her that she didn't want to know WHAT we were doing, so she didn't press me for answers.

As we got closer to the venue, I told her to start looking for clues (because there were signs all over the place that said Disney on Ice!)...but she missed the first sign. Then she missed the second. Then she missed the big flashing billboard! A little while later, she said, "Oh! I think I saw a clue!!" I asked her what it said and she said, "Oh...it was in curvy writing so I couldn't actually read it...but I think it was a clue!" She made note of little things, like the high percentage of girls in the parking lot and how many of them were dressed in princess clothes. We got all the way inside and through will call without her seeing any signs! After I picked up the tickets, I made her close her eyes and handed them to her. She gasped and said, "Oh! I knew it!!"

The show was good, she had a great time, but my favorite moment happened after the show as we were waiting for the elevator. A little girl who was 3 or 4 walked up to KayTar and said, "Why are you in a stroller?" KayTar answered, "Because I don't have as much energy as other people. And anyway, you shouldn't judge someone because of how they look, only by what's in their heart..." and she went on for a bit, giving examples from the show even. It was a passionate little speech and I was proud of her for speaking up for herself. The little girl listened, very quietly, and after all of this, she said, "What's judge mean?" It was SO funny! Here KayTar was, trying to seriously educate this little girl about how she shouldn't judge people...but it was a totally wasted effort since the kid didn't even know what judging was! Perfect comedic timing.

My second favorite moment was during intermission, when KayTar (as she is programmed to do) was talking too much and too personally to our neighbors. I said, "KayTar, mind your own business." but her deaf ear was facing me and there was a lot of ambient noise, so she replied, "Mind my own CHRISTMAS?!?" 

Life with KayTar...it is always entertaining!

BubTar and the Bunny

I usually don't write much about BubTar, since he is getting older and would probably cringe if he knew I was writing about him online, but I want to remember this story.


Yesterday, BubTar was browsing on Amazon and he noticed that there were two sock monkeys either in recent history or suggested items. These were the sock monkeys he and KayTar received from the Easter Bunny in their baskets. (It was an honest coincidence, because I know the Easter Bunny did not get them there, but it just so happened they were there.) BubTar said to Josh, "Hey Dad! Look at these monkeys...those are the same ones KayTar and I got for Easter!" Josh, thinking that BubTar is thinking that we ordered these monkeys, says, "Well, you know the Easter Bunny doesn't MAKE things, he does get them from somewhere...but I don't think he ordered them with our account or we'd notice...it just shows those things based on our browsing habits. I think it is a coincidence." BubTar said, "Whew! Because I was thinking, 'Man, the Easter Bunny is spying on our Internet searches...that's creepy.'" Here we are worrying that he is figuring certain things out and he's on a totally different tangent, worrying that the Easter Bunny is spying on our internet activity. Too funny!

Dr. K!

I guess we are going in alphabetical order this week! Yesterday was KayTar's follow-up with Dr. K, her mito/metabolic specialist. Honestly, it was kind of a waste of a morning, because Dr. K is waiting on KayTar's inaugural visit with Dr. N, her new geneticist before making additional recommendations before making her own recommendations. We were supposed to see Dr. N yesterday, too, but the appointment was rescheduled at the last minute because of a family emergency. Now we won't see her until May, so we will follow up with Dr. K in June, after that appointment and our next appointment with Dr. J. Make sense? I did get a bit of clarification on the myopathy thing from yesterday's appointment, basically it just means that she has something metabolic going on that does affect her muscles, which was seen on the muscle biopsy. Nothing more specific than that at this time. Even though we didn't really get anything else out of this particular visit (though the medical student did spend about 30 minutes examining KayTar, so I feel like we were at least donating time to the future of medicine!), it is always nice to see Dr. K and her clinic staff, because they just LOVE KayTar! They call her Little Miss Wa-BAM! because during her first visit, she lifted up her shirt and said, "Wa-BAM!" to show them her g-tube. So yesterday she Wa-BAM!ed everyone in the clinic to show them her new sock monkey TubieWhoobies. She loves the opportunity to put on a little show, so it is wonderful that they enjoy her personality so much! It was also SO nice to be seen without having insurance drama for the first time!!

After the appointment, it was time to have yesterday's labs drawn. KayTar started to get anxious and a little sad, so I made a deal with her that if she could stay calm and breathe normally during the labs, I'd get her ANOTHER sock monkey...even though yesterday's sock monkey was supposed to be a two-fer. She agreed and although she DID scream when she got stuck, she remembered the deal and did a pretty good job of calming herself and staying calm during the draws. It was important because on of the tests was a VBG and it is a more accurate measure of oxygenation and CO2 when the person is breathing appropriately when the test is done. I was SO impressed with the phlebotomist. She got KayTar in ONE stick (even though she couldn't use a tourniquet because of the VBG), which is a very rare thing, and she was so kind and chatty with KayTar during the whole process. We had to wait a while in the lab because a courier had to be called prior to the labs being drawn so she could take the VBG in immediately, and KayTar was feeling anxious and asked A LOT of questions about laboratory equipment to keep her mind off of the impending poke. The phlebotomist just kept answering her questions very kindly and patiently. She even gave KayTar a rainbow arm (and purple gloves), like she requested, and then we went and bought a rainbow monkey from the gift shop!

Hooray for Dr. J!

KayTar saw her new pulmonologist for the first time today. We've been WANTING to see this doctor for about 6 months, but had to wait for the kids' insurance plan to switch over. She has a reputation for being thorough and really good for kiddos like KayTar who don't always fit into the regular little boxes. Our main concerns were:

1. KayTar's weird halting/breath-holding breathing pattern. (Even BubTar tells her "KayTar, breathe!" when he hears her doing it. It isn't just something we see at home, her OT has asked us about it several times, because she does it frequently during therapy.) 

2. KayTar's possible desats that we've seen on pulse ox. I know that these little fingertip pulse oximeters are not great and it may be inaccurate desats, but I feel like it deserves some consideration.

3. KayTar's sleep study results which I felt were kind of brushed off by the other pulmonologist we saw. (I think his official advice was "Don't worry about it and stop checking the pulse ox.")

I was not disappointed today. She WAS very thorough, perhaps more thorough than I was expecting! As a side note, I guess that KayTar now carries a label of myopathy in her file, which I didn't realize until she said, "With her having a myopathy, it is important to take this seriously." Good to know! I guess we've moved from unspecified metabolic disorder to unspecified metabolic myopathy? Not a huge leap, but interesting!

She ordered x-rays of KayTar's chest and lateral neck today to be sure there are no structural abnormalities (in the heart, lungs, trachea, ect.) contributing to the weird breathing business (which she referred to as apneustic breathing), which we had done today after the appointment.

She ordered labs (VBG, basic metabolic panel, IgE, CBC w/diff, and a few tests for aspergillosis) which we will have drawn tomorrow since she has another specialist appointment tomorrow and they may want labs, too...we don't want two sticks when we could get it all done with one tomorrow! Some of the labs are just for ruling things out (aspergillosis) or general information. The VBG is to check her CO2 status, because she had some mild hypercapnia on her sleep study. If it comes back with elevated CO2 levels, then we may have to get an ABG (eeek!). I'm kind of hoping we can figure things out without taking that step.

She is also requesting that KayTar's neurologist adds brain stem imaging to her upcoming MRI (I haven't written about this yet, but I'll get to it soon) because that type of breathing can be caused by a lesion in the brain stem. I don't think she really thinks this is the problem, but again, she is thorough. She said that if this is the problem, usually they breathe this way all of the time and there are times that KayTar does not breathe in this pattern.

We follow up with her in 2 months and will move forward depending on what, if anything, is discovered in this first round of testing. She also wants a repeat sleep study in her sleep lab later this year, because they have redundant measures of CO2 levels which will paint a better picture of KayTar's actual levels during sleep and because the pulmonologist herself is who reviews the data that is collected. All in all, it was a good first appointment. I feel like our concerns were heard and are being taken seriously even though KayTar is somewhat in a gray area with these vague and unusual kind of respiratory symptoms.

Rainy day reading gear on the way in.

Princess Ladybug has a PFT.

Someone spotted a homeless sock monkey as we passed the gift shop and suckered me into it. ;)