Medical Organization for K

Managing life with a medical kid is a constant work in progress. Things are always changing and shifting and what works right now, might not always. In spite of that, here are a couple of things that we have found to be helpful in keeping life a little bit more organized.

1. CareSync.

It is a free multi-platform app that allows you to create health profiles for multiple family members and keep track of things like appointments (including places to write questions for upcoming appointments and summaries for completed appointments), providers (and contact info), health conditions, active/inactive medications, allergies, height/weight and all other vitals, and it has the ability to scan/upload documents into the app (like the paper reports we get after each specialist visit) and fax documents (like med lists) from the app. VERY handy! You can also use it to set daily medication reminders or health related daily tasks. Prior to discovering this app, I was keeping lists of most of these things in Google Docs, but it was fragmented and I had to share each individual document with Josh and if anything ever happened to me, he’d have to go searching for all that information to compile it. This way, even though Josh doesn’t usually need to access her medical information, it is all easily available to him in the event that he does need to. I keep profiles for the rest of us, too, though they are not NEARLY so detailed. It helps to be able to look up what meds Josh is on, if we are away from home and he needs the information. I will admit that I don’t keep this app nearly as up to date as I keep the everyday use calendars and should probably schedule a time once a month to add information and make changes as needed, but it is way more comprehensive and updated than the Google Docs system was. It is a great alternative to a paper-based medical binder, which we’ve tried in several different incarnations over the years and just couldn’t really stick with. They also have a paid option, in which they gather and import ALL your medical records and set everything up or you…but the free version is thorough enough for us!

2. Daily Triage Sheets.

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Although K has been pretty stable health-wise, she has had an increase of symptoms (such as pain) in recent months. It was becoming difficult to keep track of what complaints she had and how often they were occurring, so we implemented a new checklist system for her. We either have her fill it out before bed or in the morning (for the previous day) and it works well. This one is specific to her presentation and symptomology, but it was pretty simple to set up. I can also make notes of tweaks we make to her routine (like increasing fluids or starting/stopping a medication or supplement) on a day to day basis. We’ve only been doing this for a few months, but it has made us more aware of what is going on with her on a regular basis. A lot of times, she wouldn’t mention things until they had been going on for a long while and then say something like, “My legs hurt.” out of the blue and when we asked her more about it, she’d say, “Oh, they hurt every day. I didn’t tell you?” I think it is handy for kids who are old enough to be self-reporters and gives us a better picture of how she feels every day.

There you have it…2 little things that help us keep Life with K a little bit more organized! :)

Organization and such…

One thing that life with K has taught me is that I have to be organized…to some extent. My default nature is to procrastinate until the last minute and then make a mad dash to the finish line, but you just can’t live like that with a K around! It takes planning. So over the years, we have become a much more organized family. Since it is the start of a new year and people tend to like to implement new organizational strategies right around now, I thought I would share a few easy things that work well for us.

1. Monthly Desk Calendar.

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This is the first stop for all appointments or hypothetical plans. I also keep notes here about when things like payments for field trips or activities are due. It cost $0, because I used the free printable found here. Yay, cheap and easy! I keep all 12 months stacked up on my desk so I can easily place appointments as they are made, regardless of how far in the future. In years past, I’ve used a regular planner, but I realized I was only using the monthly pages and not the weekly/daily sections, so it was a big waste!

2. Kitchen Calendar:

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On the first day of the month, I take my desk calendar for that month and the following month and copy them down onto the huge dry erase calendar in the kitchen. Current month goes on the main calendar and the following month goes on the sidebar. Everyone has an assigned color for their activities/appointments, so we don’t have to waste space with names next to everything. As new things pop up during the month, they go on both the desk calendar and the kitchen calendar. Ideally, it means that anyone can go look at the calendar and know when we are free or busy (but in reality, they usually still ask me first instead of looking…it is a work in progress!).

3. Cozi:

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Until recently, I was keeping my virtual calendar in Google Calendars and it was working fine, but I decided to give Cozi (also free) a try and was glad I did. Though Google Calendars are shareable, but we never found that it was a good solution for us, so the virtual calendar was really just for me. I can set up the calendar in Cozi much like the kitchen calendar (with assigned colors and all), which I really like. There was some of this customization available with Google Calendars, but only in desktop mode. Unfortunately, on my phone everything was a single color. So now, if I’m at the clinic making a follow up visit for K, I can make that appointment under her color right from the app. Yay! I like to know who is doing what at a glance. At the beginning of the month, I check to make sure everything from the desk calendar has made it onto the virtual calendar (and vice versa, since I do make some appointments on the go). Since switching to Cozi, Josh looks at it more often (and much more easily) which is great, but I think the best part is the shared grocery lists in the app. As soon as we notice we are out of something (or are almost out of something), one of us just adds it to the list in Cozi. No more “What did you say were were out of the other day?” “I can’t remember!” and then we get home from the store and realize we are missing milk or toilet paper or some other much needed thing. It is great! The other very handy thing is that if one of us is at the store, the other can add things to the list while he/she is shopping…like “Ice cream for your pregnant wife”, if the need suddenly arises! Not that this exact thing has happened recently. Nope! ;) Incessant text messages during store trips have been dramatically reduced. I also really like that there is a desktop control panel, as well as apps for iOS and Android and they all have the same functionality, since we are mixed bunch as far as electronics go. There is also a To Do List, which has been helping me keep track of mostly K-related things like upcoming specialist appointments and procedures that need to be taken care of (especially those that need to happen before the baby arrives), or for making notes about refilling prescriptions and such. For a free app, it has been super helpful!

So there are three easy ways we stay organized with everyone going different directions (and a K to keep track of) that almost anyone can use and benefit from…and they are mostly free! If I’m feeling super crazy, maybe I’ll come back another day and go over some of the more K-specific organizational tools I use for managing medical stuff and homeschool life.

Christmas Letter 2014

Dear family and friends,

Since last year I made/ordered cards and wrote/printed our Christmas letter and neither ever made it into the mail, I decided to simplify life this year and handle this virtually instead so maybe it would actually make its way to you all! 2014 has been a good year that has brought some big shifts to our little household (like a baby on the way and homeschooling for K), but much is still the same around here. Josh is still working at the bank and volunteering at Boy Scouts with Nathan, and his new hobby is gaming (40k, Magic, RPGs, for those of you who understand such things!). My year has been a lot different, since I started growing a new human in July and homeschooling K in August! Early pregnancy is never very pleasant for me, so I spent several months not feeling very well, but I still think this has been the easiest pregnancy of the three! All of that has finally passed and I’m feeling much better these days! We are all looking forward to this little boy or girl’s arrival in late March/early April! As for homeschooling, I’ve always been one to say I could NEVER do it, but it has been so easy and enjoyable to have K home and learning here. She has always been one who loves learning, so it isn’t a struggle to motivate her to get through her material. She makes it easy for me! Overall, we’ve had a wonderful year and been able to spend much of it doing fun things and making great memories with people we love!

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N is 12 years old and in the 7th grade at a new school in a new district this year. He is still active in Boy Scouts and plays saxophone in the symphonic band and he stays after school most days to play Magic with his friends. He also keeps busy with a lot of the same types of games that Josh enjoys. Between school and scouts, he’s developed a really great group of friends. This year, he also went on his first solo camping trip with Scouts (without Josh) and has done so a few times now! He has grown up so much this year, it is almost unbelievable. He’s definitely going to be taller than me soon (maybe before the new year arrives, it is getting close)! He is also growing a ‘stache and a few days ago his younger cousin noted that “his voice had lost that squeaky quality [she] loved so much”. 2015 will bring a TEENAGER to our house! He is still doing very well in school, though this year brought a few bumps as he adjusted to the new level of freedom and responsibility at his new campus. He’s such a great kid and watching him grow up is a wonderful gift!

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K has had a pretty big year! She was on the news twice; one little blip from her North Pole visit last year and then again to talk about mitochondrial disease and Ladybug Day with our friend and author, Carole Amber! Speaking of Ladybug Day, that was probably the biggest and best event of her year and you can read more about it here. It was an amazing blessing that we will never forget! K said that it made her feel like the President of the United States! She also participated in the Houston Energy for Life Walk for the first time, too. (If you are local and would like to join us for this important event this year, mark February 7th on your calendars!) She graduated from occupational therapy this year and restarted physical therapy. She also got to attend sleepaway church camp for several days this summer! It was a big undertaking and I had to attend as her keeper, but we both enjoyed it so much! It definitely felt like a victory to participate in something so BIG and NORMAL, and she experienced some really special moments we will always cherish. Our church staff was so helpful in getting K around camp and making sure we had what we needed. It was wonderful. She learned some karate this summer and took musical theater and vocal performance classes this fall! A big factor in our decision to homeschool her was to give her the ability to have a life beyond the classroom; regular school was so draining for her that she was unable to participate in any other activities and while school is VERY important to us, we didn’t want it to be the sum total of her life. Homeschooling has allowed her the freedom to try new things and participate in some neat activities! It has also allowed her to delve a little deeper into the things that are interesting to her and made school work a bit more fulfilling, I think. You can read more about our homeschooling adventures here. While her overall level of health has been good (with the exception of one really persistent respiratory infection that got ahold of her at the beginning of the school year), the past several months have brought on some new symptoms that we are trying to get a handle on, mostly pain in a variety of places; back, GI tract, hands, legs, feet. Homeschooling also allows us to get through her work and accommodate how she feels from day to day, which would not be so easy in a typical school environment. Her mitochondrial disease specialist is also referring her out to the NIH Undiagnosed Diseases Program, so we are hoping that she will be accepted and we might glean some new information about what her ultimate genetic diagnosis might be or how to most effectively manage her health. She also hit a major milestone this year! She has finally overcome her paralyzing fear of having blood drawn and has sat through two sets of labs without a whimper or tear. As much as I hate that this was even a hurdle she needed to jump in life, we are so proud of her and it really does make life much easier on her! Life with K is always a surprising and exciting adventure, every year brings new blessings and challenges and we are thankful that she is doing well overall and has gotten to enjoy so many wonderful BEST DAYS EVER again this year! So many special people have contributed to her amazing little life and we are SO thankful for each of you.

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We hope that each of you will have a very merry Christmas and a wonderfully blessed 2015 filled with many best days ever of your own!

Love,

Josh, Kyla, Nathan, Katie, and Little Duck

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Guess what?

Katie has some news she has been dying to share…

A video posted by Kyla Hebert (@kylah222) on

Yes! K is going to be a big sister at the end of March (or more likely, the beginning of April)! See?

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21 weeks!

I realized that although we are halfway to baby, I hadn’t mentioned it here at all. Oops!

We are all very excited, thankfully, but we weren’t sure how the kids would take the news…especially K who has been the baby for almost a decade now! We had to renovate a room for the baby, but before the kids knew I was pregnant, we let them think it would be a guest room. When we decided to tell them, we stuck a sign on the old crib that said, “ATTENTION: LONG TERM GUEST ARRIVING MARCH 2015.” with a cartoon of a baby, and below that “(Yes, we mean a baby. Congrats Big Bro and Sis!)”.This is how the kids reacted (and no, N did not really have any idea I was pregnant. He just really likes to pretend he’s in the know. ;) ) Their reactions are SO indicative of their personalities and I’m so glad we captured it on video. N is a total baby person and he is just as excited, underneath the complaints about diaper changing.

Everything is going well so far. Even though I was sick for several months (still not sure I’m totally past it yet), it has definitely been my easiest pregnancy. Maybe being off gluten has been helpful or maybe the Unisom and B6 is working fantastically, but whatever it was it made for a much less miserable first trimester (and on into the second…). A little miserable at times, but much less so! We decided not to find out gender this time (a first for us) and man, does that make some people crazy! It is pretty entertaining how strongly people react to our decision. The baby’s nickname is Little Duck and that is good enough for us for now! We had our ultrasound a few weeks ago and everything looks perfect! I think the baby is probably a boy and have since the beginning, but the pregnancy itself has really been much more like N’s than K’s. K is fervently hoping for a girl. N wants a boy (he’s very outnumbered by girls in the family). And Josh doesn’t really have an opinion one way or the other. I think we’ll all be thrilled with whoever this little person turns out to be! One benefit to waiting to find out is that whoever is “wrong” won’t have months to be disappointed about it, because they’ll just be so excited that it is our BABY and it is HERE!

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What else? Hmm. I’m seeing a midwife this time around and plan to deliver at the birth center instead of a hospital. My births have been without complication and I never get an epidural anyway, so it just feels like the most supportive environment for that kind of birth…not to mention the cost difference. It will be a new experience, though! We also plan on cloth diapering, so figuring all that out has been a fun learning experience, too. Even though we got rid of pretty much all of our baby stuff since K, we are pretty well stocked already at this point. Friends and family have been very generous with passing things on to us and we’ve had good luck with finding other items secondhand. It has been neat to watch God provide all the various things we need (and want even!)…down to funds for renovations and such! Here is a peek at the nursery (I’ll try to put up a post with reno pictures soon. Josh did such great work!), but of course, we still have decorating and such to do in there:

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Little Duck is a busy little baby, always wiggly, and is growing right on schedule and has a strong, easy to find heartbeat. He/she is a pushy baby, too! I was feeling him/her push around in there long before the actual kicks started and even though there is plenty of kicking happening nowadays (strong enough for Josh and the kids to feel now and for us to see from time to time), there is still a lot of pushing around into weird positions. I suspect he/she will love swaddling, so there is still some resistance in the world to push against! Hopefully the second half of the pregnancy will be just as “easy”…no preterm labor scares like with K! We are so excited to meet him or her this Spring…19 weeks to go!

So, how is homeschool going?

We are 8.5 weeks into our homeschooling adventure and it is going fantastically! Even though Josh and I both felt like this was the right thing for K, it was still a scary thing to pull her out of her beloved school and give this a shot with absolutely no frame of reference for how it would go, but it has been even better than we’d hoped.

We are using a curriculum called Exploring Countries and Cultures from My Father’s World for her the bulk of her subjects (Bible, Science, Geography, Art) and have pieced together the rest. She is doing 6th grade spelling and using Handwriting Without Tears to strengthen her handwriting skills (print this semester, but we may attempt cursive in the Spring). We added in an extra Apologia science course because we felt like the ECC science was too light for our science-loving girl. She is using Teaching Textbooks 4 for math, it is a curriculum that she does on the computer and it has been a great fit for her thus far. She still reads a lot, much of it for fun, but we also have a “book basket” with topics that enrich the subject areas we are covering in school that she spends time reading most days. She is working on creative writing with a book of prompts called “Unjornaling” (which we have been really pleased with!) and typing them up in blog form because she fatigues so easily from pencil to paper handwriting and we have to limit that a lot. She thinks having her own blog is awesome, even though it is private! As part of our main curriculum, we “travel” to a variety of countries throughout the year (she even has a passport and we exchange her money at the border) and learn about their geography, ecosystems, and culture. So far we have traveled through the US, Mexico, and are currently in Canada. While in Canada, she decided she wants to learn French, so she is working on that daily with DuoLingo! She uses websites like National Geographic, Time Magazine for Kids, SeTerra, Sumdog, and ABCya to practice and reinforce various skills. She loves that we get to paint, do fun stuff like practice geography with Nerf guns and a big map and frequent hands-on science projects, host a Canadian Thanksgiving, or wittle Inuit soap carvings (like today). The school portion of homeschooling has been great because K is a self-motivated learner and excels with reading, so it has not been a struggle to keep her engaged. Even with adding in additional subjects, she still finishes school somewhere between 10-11am most days. I feel like she is getting a very well-rounded educational experience with MUCH less time/energy expenditure (and less busy work!), which was one of our main goals.

With a good portion of her time and energy conserved, she has been able to start some extracurricular activities, too! This summer she did karate for a couple of months, but she decided that wasn’t for her for the long run, and she started theater this fall. She LOVES it! She also auditioned for a singing part in the Christmas show and got it, so now she goes to vocal rehearsal once a week and theater once a week. This is something she couldn’t have done with full time regular school on her plate. We are also part of a homeschool “support group” which is really just a big organization that sets up field trips, classes, and meet-ups that we can join in, if it works for us. Last week, we went to a board game group for kids with special needs they hold once a month and K loved it. Tomorrow, we are going to a local farm for a hayride, corn maze, and other fun stuff. They also host holiday parties for the group, so K won’t be missing out on any of that fun!

Now onto the health aspect of things! With K not being in school, we were hopeful we might miss out on the Back to School Crud, but no luck there! Maybe N brought it home, or maybe we picked it up when we were out and about, but K spent several weeks at the beginning of the year not feeling well with respiratory crud. She was not running a fever, but she was not doing well either. It finally took a pretty major shift in her respiratory meds, steroids, and hefty antibiotics to get her past it (and that created its own issues with her GI tract) to get her over it after about a month of illness. If she had been in regular school, I would have hated sending her to school every day in that state, because even though she was not clinically sick enough to justify absences, she was not healthy enough to exert herself like that. We barely made it through our little workload here some days! It was just another confirmation that we were making a good decision for her this year. She was able to continue learning and get plenty of rest and downtime, too!

Here are some pictures from our year so far!

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A New Adventure

Yesterday was the last day of school for the kids! While it was a JOY to delete my 5:30am alarm last night, yesterday was a little tougher to get through than most Last Days of School have been because it was not just The Last Day of School Before Summer Break, it was probably THE Last Day of School for K, at least for the foreseeable future. Next year, we plan on homeschooling her which is an exciting and fun thing, but man, do I LOVE the staff at the school campus she has attended for the past 5 years and I will fiercely miss seeing them daily. I didn’t really disclose our plans to many people (though it probably will not be a huge surprise as K, who cannot keep anything to herself ever, has been excitedly sharing our tentative plans for quite a while now) because I did not want yesterday to be a goodbye-filled day…my little heart could not have taken that! And I don’t plan on it being goodbye anyway, I just think those special relationships will just have to carry on in a different way from this point! You may be wondering WHY we are deciding to pull K from her last year of traditional elementary to homeschool, so let me explain…

1. Homeschool has always been in our future plans for K.

K is a great kid. She is smart. She is hilarious. She is friendly. She is also extremely trusting and innocent to the motives of other people and struggles with some aspects of social exchanges. K is a strange mixture of intellectually mature and socially immature, she knows and thinks and talks about things that are above the knowledge and interest level of most of her peers, but behaves in a way that is younger. She doesn’t always read other people’s cues appropriately and tends to get along better with grown-ups because they understand her and can also easily overlook her quirks. Kids are not as understanding. Setting her loose on a middle school campus where many of the kids are not so innocent or deserving of the kind of trust K gives so easily is not something we feel is a good option for her. While her brother has done great in middle school, we have known from the outset that this is not a good environment for K. It is too big and not nearly as closely supervised as her elementary campus. Everyone does NOT know everyone and the staff would not be able to look out for her the way they can at her current campus (it has been SUCH a blessing to have a staff that knows and cares for K). Okay, so that explains why we planned on homeschool starting in 5th grade, but what made us decide to start in 4th grade instead??

2. This year has been a difficult year for K, socially.

While the staff at K’s school is wonderful and caring and helpful, there has still been a lot of peer-to-peer unkindness directed at K this year. A lot. Stuff like backing away from her as she walked down the halls, making sure she had not checked out library books before they did (“Because we don’t want to touch it if YOU did!”), she lost a good friend when she gagged because of some spilled nacho cheese at lunch due to sensory issues, and even the kids that had been her friends in previous years started to distance themselves from her. My normally happy and sunshiny girl was frequently coming home with sad reports about how people were treating her and it was not a good thing. We really thought we had another year before the social divide between her and her peers reached this level, but we were wrong. She has been excluded and singled out in very pointed and not nice ways and while she maintained her happy demeanor, it was starting to wear on her. The staff was helpful, of course, but while you can ban certain negative behaviors you cannot mandate kindness…at least not in a lasting way. The teacher did have a big talk with the class after one incident (that K and I don’t really know about or WANT to know about) and K came home so happy about all her new friends! “Everyone is my friend again!” She just takes it at face value. YAY! Everyone is my friend! and misses the part about the meanness and the fact that the teacher had to force them into not being ugly towards her. I am thankful that her innocence protects her from the truth of it all and she has mostly maintained her awesome outlook on life, but Josh asked me, “Do you want to leave her in that environment until she gets it and she is no longer her happy self?” And the answer is no. We don’t. School is great, but it isn’t worth that risk especially when we can meet her educational and social needs in other ways. The more we pondered and prayed about homeschooling, the more benefits we saw…

3. Regular school is exhausting for K, homeschool will not have to be.

Obviously education is VERY important to us, but the traditional classroom model takes all of K’s energy. She gets up at 7am and goes to bed at 7:30pm to make that possible and by the time she is done with school and homework, she has nothing left for anything but lounging around the house until sleep time. At home, we will be able to work during K’s peak hours and cover more material in less time. She can sleep later, if needed, and if we have something to do one evening and bedtime is later than usual, we can work around that in our schedule the next day.  K has never been able to pursue any interests outside of school, because school takes up everything she has, but if we homeschool…

4. K will be able to explore enrichment opportunities for the first time ever.

Theater, music, art, maybe even sports! With less of her hours consumed by school (or conserving energy for school), she will be able to try out some fun extras and enjoy a more well-rounded life. School is great and education is super important, but it isn’t everything there is to life. K is in a pretty stable place, medically-speaking, and we want her to be able to enjoy this plateau and get the most she can out of it. Her disease is unpredictable and we don’t take the stable times for granted. There are so many great experiences to have that lie outside the walls of a traditional classroom! And even within the “classroom”, homeschooling will allow us to…

5. Create a different kind of Individualized Education Plan for K!

Like most kids, K has strengths and weaknesses in school. She started reading at 25 months and still reads at a much higher level than her peers, but she is not as strong in math. Homeschooling means that she can work on “grade-level” in math and at a higher level in reading. We can cut out busy work that is helpful for some kids but less so for K, we can exchange information orally to check comprehension when her hand muscles are too fatigued to write. We can use her natural interests to encourage her to work on the more difficult areas and approach subjects in an interactive manner that fits her personality and learning style more appropriately. We can go on field trips and take museum classes and all kind of new things! And can I just say that we will be happy to not have to worry about the STAAR test next year? The amount of anxiety that was created over that test (that she passed (math) and was commended for (reading)!) was a little insane this year. It isn’t why we are homeschooling, by any stretch, but it is a nice little perk.

So, there is just a handful of the reasons that we are planning to homeschool K in the fall. I told Josh that it probably seems strange to some people that we are pulling her out when she is finally doing so well by academic standards. She was dismissed from her IEP and switched to a 504 at the end of the year (meaning her disabilities are no longer affecting her academic work), she no longer requires speech or occupational or physical therapy, and she is the healthiest she has been in years (perfect attendance TWO 9-weeks this year, insanity!). But when we look at the larger picture like this, it kind of seems like the perfect time to take her on this new adventure and see where it leads! She may return to regular school at some point, and we will leave that door open for sure. One of the many things K has taught us is that the future is predictably unpredictable and while we may make plans for things to go one way, they often end up going in a completely different direction! Our goal is, as always, to meet K’s needs in the best way possible and for this season, homeschooling seems the right choice…but life changes quickly and we will continue to be ready and willing to adapt as needed. So, with our best laid plans in place, here we goooo!

If you are a teacher or staff member of K’s school and you are reading this, I cannot thank you enough for the years you have spent caring for my girl! Each of you have invested in her and supported her and loved her and made it possible for her to THRIVE in school and we have made so many wonderful memories with you all. On her first day of school there, drop off was so chaotic and I was so worried about my tiny, quirky, medically-complex kid that I drove away with tears in my eyes because I thought she was going to get lost in the shuffle and the thought of leaving her there was impossible, and yesterday as we drove away I had tears in my eyes because I know she was NEVER lost in the shuffle and the thought of leaving you all there and moving on to a new chapter is impossible. But I sincerely hope that we aren’t leaving you all there at all! Things are changing, but we hope that all of you will continue to be a part of K’s tribe for a very long time, in whatever new form that might take! Life with K is always an adventure, but the company sure has been a marvelous and unexpected gift from God! Thank you!

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The Story of K’s Tube

This week is Feeding Tube Awareness Week and the first suggested prompt was “Why does my child have a feeding tube?” and while I think everyone knows to some extent why K has a feeding tube at this point, it wasn’t so obvious back in 2008 when we were on the cusp of this decision. Back in 2008, she was not a kid with mitochondrial disease or a kid with ketotic hypoglycemia or a kid with gastroparesis or a kid dependent on multiple medical technologies every day of her life. She was a somewhat complex, medically-undiagnosed kid with a variety of symptoms and no real direction to head to figure them out (she was most of that other stuff, too, we just didn’t know it yet). She was developmentally delayed and had a feeding disorder. She was not potty trained and she still got 90% of her calories from a bottle. She was limited to the medications that came in suppository or transdermal forms because we could not get medicine (or much of anything) into her mouth. She ate some stage 2 baby food purees and drank a decent amount of Pediasure every day, until she got big enough that a decent amount of Pediasure no longer cut it.

In August of  2008, our pediatrician strongly suggested (not for the first time, but for the first “here is the number of a good surgeon” time) that K might benefit from a feeding tube. The first time was in January of 2008 and if I had know all of the positive changes it would bring, I would have said, “Sign me up!” in an instant, but I didn’t know then. In August of 2008 the facts were that K was losing weight, she hadn’t increased her base level intake in 2 years, and every time she got sick (which was often) we were stuck in a cycle of total refusal of food/drink, dehydration, and hospitalization for fluids. I have many pictures like this one, entitled “Things K Won’t Drink”:

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Regardless of these very valid reasons to get a feeding tube, it was a difficult decision. It seemed drastic to poke a hole in my kid who physically COULD eat by mouth (but usually wouldn’t, ahem). In January, it seemed straight up insane and by August of a very difficult year, it seemed much less insane but scary still. A semi-permanent hole in my beautiful child! But things deteriorated a bit further between August and September when we saw the surgeon and by then it seemed like the right decision for her, but it was still scary and to be honest, it felt like defeat. It is a main function of mothers to feed their babies and children, they are literally BUILT for it, and I couldn’t do it. I couldn’t get this kid to eat or drink enough and now they were going to put a little plastic shrine to my failures in her stomach for all to see.  Silly, maybe, but in the moment it seemed true and I think it is how a lot of people feel before their child gets a tube placed. Before her surgery in November of 2008, I took lots of pictures of her little unblemished belly, fully expecting to grieve over it…

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Funny story, K saw me pull this photo up and she thought it was her brother’s tummy because her tube was missing! :)

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But the tube came and I didn’t mourn. That little button was a miracle from day one! I’ll never forget the first night I was able to give her medication (liquid medicine! that itself was a miracle! oh, the possibilities!) and fluids while she SLEPT! It was like my whole body exhaled for the first time in years. I’ve often wished I could travel back in time and tell myself what a good decision we were making for her. I wish I could tell myself that as I sat in the appointment when it was first brought up, or when it was brought up a second time, or when I was sitting in the surgical consult, or as I sat in that hospital waiting room, worrying so much, or even in post-op when she woke up and sadly said, “I’m broken.” and it cracked my heart. Because it WAS the best decision we could have made for her. It made her so much healthier and more stable and changed her relationship with food in a positive (yet still totally oddball) way and that it was NOT a scary thing or big adjustment in the end. It was so much easier than every day that had come before and the agony over how many calories she had taken in and how much fluid (oh, the spreadsheets I have filed away! years of calorie counts!) and whether she had or would pee in any given 24 hour period. Not to mention the fact that she grew 4.5 inches and gained 6.5 pounds the first year she had the tube…all the growing she hadn’t been able to do and finally had the resources to do, and her development accelerated, too! Her debilitating neuro episodes also tapered off once she had her tube and her nutritional intake stabilized.  It was, and still is, an amazing, miraculous piece of plastic that does SO much for our girl every day. I’m so thankful for it and thankful that Past Josh and Past Kyla were smart enough and strong enough to make this decision for her so that we could all reap the rewards of it, especially K.

459089_10150621728075800_789696734_o I hope that if you are reading this and you are in that place of worry and uncertainty, this will show you that sometimes tubes are wonderful and necessary things that can drastically improve quality of life…and it is NOT defeat. It is just another way of doing what mamas are built to do, feed their kiddos, and that is a victory every time.

 

Ladybug Celebration Day!

Carole Amber is the author of the beautiful book, The Gift of the Ladybug, which she wrote to share her son TJ’s story and communicate the experience of discovering that you are parenting a different kind of child than you expected. Her son had mitochondrial disease like K, though he had a more specific form called Leigh’s Syndrome, which is more severe and takes kiddos much too soon. Her sweet boy passed away at 14 months of age, but he taught his mama so much about what is important in life and she has carried on his legacy in an amazingly beautiful way! This past week was Ladybug Celebration Week, an event meant to celebrate kids with critical illnesses and medical differences and honor TJ, and K was lucky enough to be chosen to be a part of this amazing week!

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Friday morning, I picked her up early from school and took her to the Ladybug Party that her mito clinic was hosting, where she got to be Queen Ladybug (though, she decided to let Carole be the Queen and she would just be a Princess). K, who does not seem to have a shy bone in her body, made fast friends with Carole and so began our wonderful weekend. The party was so cute and fun; crafts, activities, a special reading, and book signing. Paperback copies of The Gift of the Ladybug for all the kids were donated by the Monteverde Group and Highlights Magazine had donated items as well, so neat! The best part was seeing our sweet friends!

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I knew that K had been selected to go on a special ladybug adventure with Carole after the party and I even knew what it was, but I chose not to tell K because her reactions are so fun and I wanted Carole to have that pleasure and WOW. K sure did NOT disappoint when it came time to react! I will cherish that memory forever! See for yourselves:

After the party wrapped up, we headed over to the American Girl store (K was so excited Carole rode with us in our car. An author! In OUR car!!). They took us to the private party room which was decorated with such adorable ladybug stuff, and got K’s doll, Lily, all set up with her own chair and cup and plate set. K got to sit in a big pink throne! They were aware that she doesn’t eat typically and were so accommodating. They asked what she wanted to eat and she asked for bacon and mayo (Hellman’s preferably!) and they went to cook some up for her! Unfortunately, it did not pass her rigorous standard, but it was a very, very kind gesture and to be fair, our bacon at home doesn’t meet her quality control standards so the odds were not in their favor. She also ordered a pizza, which she did not eat, and some milk which I had to encourage her to drink some of so we didn’t get a dippy glucose in the midst of our fun! They also had an extensive gluten-free menu which Carole and I enjoyed. Each of the staff members were so kind and attentive, it was a great experience!

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While we were eating, a salon worker came in and let K pick a hairstyle out for Lily and then got to work on her, right there in the room with us. She also gave K some pointers on how to care for Lily’s curly hair. So fun!

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After eating and chatting for a while, we went to browse the store so K could pick a doll. She was leaning towards Isabelle from the start, but still wanted to check out the competition. While we were browsing, we passed by the car wash set which K has been mooning over for years now. Every time we get a catalog, she talks and talks about this thing. The day before, I had asked her brother “What are K’s favorite American Girl things? What does she talk about when she is looking at the catalog?” and he said, “That crazy car wash set! That’s all she ever talks about!” So of course, she said something like, “Oh, I wish I could have that.” while staring at it dreamily, but I reminded her that we were doll shopping and she let it go easily and we went on our way. After making the rounds, she finally settled on Isabelle. I think the pink highlights in her hair were the biggest selling point!

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We went back to the party room and they brought out an adorable cake for K, which she did not eat (sensing a theme?) but was so thrilled with anyway! We sang “Happy Ladybug Day to you!” instead of “Happy Birthday!” and then she made a wish. We all had a little dessert (K opted for vanilla ice cream, which she did eat a little of). Carole excused herself to go to the restroom and go get Isabelle and Coconut (a dog K had also picked out) from the register so we could get a picture of all of K’s fun goodies before we wrapped up our exciting afternoon. She was gone a while and at one point K said, “She has been in the ladies’ room a long time!  I hope she is okay!” She came back in and I started to excuse myself to go to the restroom, but she suggested I might want to wait a couple minutes and boy, was I glad I did! Shortly thereafter, they brought in THE CAR! What?! K’s eyes got huge, but she didn’t really say anything at first. She told me she thought it was just brought in for the picture. Then she asked, “Is it for ME?” The answer was “Yes!” and then she lost her mind! I wish I had gotten a video, but I do have very bouncy pictures of her joy and photos of her hugging both Carole and the car. And I’ll keep those memories in my heart forever, video or no! It was definitely WOW moment to cap off all the other WOW moments of her day! It was truly a day that was BEYOND words and meant so much to both of us. I told Carole that long after we are all dead and gone from this world, there will be a little crater in the earth right in that spot that says “Joy Exploded Here”. It was the BEST Best Day Ever that we have ever had! I don’t think there was any possible way to make it better. Carole is such a sweetheart and we enjoyed every minute with her!

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The following morning, we met Carole at our local NBC station so they could be interviewed about Ladybug Celebration Week and mitochondrial disease. Before the show, the anchor asked K what she wanted to talk about and she said, “I just want to raise awareness about mito!” What a kid! She really did a fantastic job, so mature and well-spoken! She was definitely much more composed than I would have been on live TV. She has been one of the anchorwomen on her school’s video announcements lately and I think all that camera time has paid off. You can click the following link to watch her segment and feel free to share it if you would like, let’s help her raise some awareness! K’s Live TV Debut

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I love this photo of my little anchorwoman checking out the real news room!

After we wrapped at the studio, we came home to rest just a little and then it was time to go to the Energy for Life walk! This was our first year to participate and it was a wonderful experience. We walked with K’s clinic team and it was great! If you donated to K’s fundraising efforts, we cannot thank you enough! It will go to a very good cause, trying to find a cure for our little ladybugs to make their short and sweet lives a bit longer! Thanks to all of you who walked with us, too, or even expressed interest in walking with us. Next year we will know a bit more about the process and hopefully get another fun group together! We got to see Carole again, much to our delight, and K accompanied her on stage while she read The Gift of the Ladybug to everyone.

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After the walk, it was time to say goodbye to our precious new friend. It is hard to believe that we had only known each other for less than 48 hours! She is such a kind and generous and fun person, we both SO enjoyed every minute we got to spend with her.  I know her TJ is SO proud of his mama and the beautiful life she is living and the way she honors him and shares him with the world. He must look at her and say, “That’s MY mama! And I taught her how to fly like that!” ♥

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As for me, I very much related to Luke 2:19 after this weekend, “And Mary treasured up all these things and pondered them in her heart…” I think it will take me a long time to finish pondering all of these treasures, but I sure am thankful to have them all stored up in my heart! Carole, thank you SO much for everything. What an incredible gift you have given to us!

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