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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Happy New Year!

Hey there! I have been a little lackadaisical in the blogging department as of late, haven’t done it all year, in fact. ;) Sorry about that! We are all doing pretty well at the moment, especially K (knock on wood). In fact, she is doing so well that she got PERFECT ATTENDANCE this last grading period. I still find it entirely unbelievable,  but it happened! See?

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It is a little less convincing with her legal name whited out, but seriously, IT HAPPENED! Pretty amazing. She has cried every 9 weeks since Pre-K at awards when she failed to get one of these and I always told her that it wasn’t a big deal and that she probably wouldn’t ever get one, but that was okay…but man, she proved me wrong! I love it when she does that.

What else? Oh! We flew to the North Pole again this year and she was interviewed by two local news stations. She LOVED that, maybe even more than the North Pole itself. You can watch her brush with fame here: http://www.click2houston.com/news/group-of-kids-take-special-flight-to-north-pole/-/1735978/23374338/-/smpi55/-/index.html

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We had a wonderful Christmas season, I hope all of you did as well. Our trouble-making elf, Twinkle, was back this year and he might deserve a whole post to himself whenever I get around to it. We enjoyed celebrating Advent this year for the first time and taking time each week to read the Bible and pray together and light the candles. K claimed the pink one, of course, which fit her perfectly as it represents JOY!

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It hasn’t all been smooth sailing, K has had some respiratory gunk here and there, we’ve had mega-trouble with her medical supplies (which is all sorted now!), and there have been some new challenges for her in school this year, but overall things are going very well and we have some very exciting things coming up in the next couple of months! One of those things is participating in our local Energy for Life walk benefiting mitochondrial disease. K is in the #3 spot for fundraising and has met her original goal over 10 times now! This is her fundraising page: http://www.energyforlifewalk.org/houston/katiehebert, and if you’d like to contribute, we’d really appreciate it. The money definitely goes to a good cause!

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Top 5!

In no particular order…

1. Last week, for the first time since starting occupational therapy at 17 months, K’s OT mentioned her possibly graduating in the next few months. Whoa! Her sweet OT was a little teary-eyed at the prospect, too. K has been her patient since she started there and I can’t quite imagine not seeing Ms. Becky every Friday (though, the plan will be to replace OT with PT since that is a bigger need right now)! But I’m glad K is making good progress with her fine motor work! Graduating from therapy isn’t like graduating from other things…kids often have to restart when the milestones from their peers increase…but it hasn’t even been mentioned until now! Pretty cool.

2. K sat through a movie with me at the theater without needing 6,749 reminders about theater behavior. Another, whoa moment! K feels a compulsion to repeat lines during a movie (especially funny lines), so I spend most of the movie reminding her not to do that and not have a loud running commentary about the movie and to pick my lap or her seat and just SIT.STILL.FOR.A.MINUTE. But after my initial reminder to not repeat lines, I didn’t have to tell her anything else. We just watched the movie! I complimented her behavior after the movie and she said, “I guess I’ve matured since the last time we went to the movies!” Indeed!

3. K was matched with a runner through I Run For Michael. It is an organization that matches able-bodied runners to people or kids who cannot run for whatever reason and a symbiotic sort of encouragement/support network forms between the two. K’s runner is Kelly and she is so sweet! Today K is having a not-so-good day (gut slow down, low sats, high heart rate, joint pain, congestion) and Kelly posted this picture and an awesome little pep talk for our sock monkey-loving girl (and no, her name isn’t secret…I just prefer not to type it/make it easily searchable)!

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We are very excited to be part of this neat program! If you are a runner, or in need of a runner, follow this link and get signed up! There are a lot of runners queued up and waiting for someone to run for! Sign up and make their day!

4. Glow in the Dark J-extension! A month or two ago, Grant from AMT contacted me about getting us some adapters for K’s g-port so we could give meds without the use of an extension (HOORAY!) which I had complained about in one of my blog posts. I love AMT, because they are VERY patient-centered and really try hard to meet the needs of their users. He also sent us a new glow-in-the-dark J-extension…but K’s tummy has been working pretty well since then and we hadn’t needed to use it…until today! The cool factor definitely made us feel better about needing the J-port again and K was super excited to finally use it. I think it is a great idea. K says she likes that she will be able to easily unhook herself in the night when she needs to go potty…and of course, that it is so COOL!

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5. K is on Student Council! She is very excited to be a part of something and says it is a wonderful way to get ready for her presidential candidacy some day. Tomorrow is their first breakfast meeting. This was her application paragraph (she said she added in the last line to flatter the decision makers)…

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So yup, K seems to be getting sick and had a not-so-good day today, but there is always loads to be thankful for and excited about! :)

More about Mito

Mitochondrial Disease Awareness week is over, but at our house it is never really over and there are a few more things I wanted to share here that I posted about on Facebook last week.

Mitochondrial Disease is an INVISIBLE disease, which means you generally cannot tell anything is “wrong” with K from the outside. When you pass us in the grocery store or sit across a restaurant from us, K looks fine usually. If you spend a whole day with us, though, you’ll notice differences. Meds and checks for glucose and oxygen and tube feeds and oxygen are all part of her daily life, but maybe not a part the outside world sees at first (or second or fifteenth) glance.

While K looks good on the outside, this is some of what is going on inside of her:

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So while she LOOKS good every day, it takes a lot to keep her looking that good. To keep her looking that good, this is what our house looks like:

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There are medical supplies in every room except for K’s brother’s room. There is an IV pole and oxygen tanks in the living room; shelves in the pantry for formula and feeding supplies; cabinet in the kitchen for meds and supplements; an IV pole, pump, oximeter, and related supplies in her bedroom; compressor and more meds/supplies in the bathrooms; tank filler in the hall; drawer of miscellaneous supplies and meds in our room; dedicated storage shelves in the game room…and so on. This is what it takes to keep our K running!

Even with all we do to keep her running, we still have 3 types of days in K’s life and they look like this:

Type 1: This is a GOOD day.

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K feels really good, her body is maintaining pretty well (with all of the normal supports), and she can play and do many normal things. If the weather is not hot, she can play outside. Weather-permitting, we could go to the zoo or museum (though she would need to ride in her wheelchair to prevent exhaustion or a crash) or get together with friends or she could go to a baseball game with her mito pals and even run the bases!

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Type 2: This is a NOT-SO-GOOD day!

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A not-so-good day means extra interventions. K might need to be on oxygen and/or continuous feeds and/or hooked up to a Farrell bag to allow her stomach to drain all the time. She may need Zofran to control vomiting and other PRN meds or breathing treatments, too. She probably needs regular ketone and glucose checks. She might have a mild illness that causes all of this trouble or she may just be having a not-so-good day because she really enjoyed a good day the day before and is paying the price for the fun she had. A not-so-good day means she doesn’t have energy for playing or going out. She is probably on the couch or in bed and she feels crummy.

Type 3: This is a BAD day!

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A bad day means that we can no longer manage K’s issues at home and have to go to the hospital. Her glucose is too low, her ketones are too high, whatever the situation it is no longer something we can handle with our at home meds or her GJ tube. This summer a simple GI bug put us in the hospital for 4 days because her gut shut down on us and she needed IV fluids and medications. Then we came back home and had about 2 weeks more of not-so-good days until her systems came back online and she was close to her baseline again. We don’t like bad days (or their aftermath)!

Hopefully, between this post and the previous one, you understand a little bit more about what life with Mitochondrial Disease is like. It is beautiful and fun and messy and tough and hilarious and sad…and in that respect, it is like a LOT of other kinds of lives! We never know what is going on in what appears to be a “normal” life, so we should try to be as gentle and forgiving as possible with one another as often as we can. The kid who hops out of her wheelchair when she gets to the park probably isn’t doing it for attention…she is probably conserving her energy so she has the ability to enjoy herself at the park! The family who gets out of the car in the wheelchair parking spot, but doesn’t have anyone who looks “different” in their group may have an invisible illness that affects one or more of them. The 3 year old still drinking from a baby bottle might be doing so because it is the only thing standing between her and a feeding tube (and yes, her mom knows it is a losing battle and when you say, “Oooh, looks like it is time to get rid of that bottle, Mama!” it will twist up her insides like you would not believe). The mom who always seems to be running late may have had to prep a feeding bag at the last minute because the one in the backpack burst or had to clean up her 8 year old’s bathroom accident on the way out the door. You just never know.

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Kindness costs nothing, but means everything…especially when you are fighting an invisible battle. So think of K and her battle and be kind, as often as possible. It would make her so proud.

Life with Mito

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When K was born, she was seemingly healthy.

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With the exception of a couple of ER visits during her infancy, frequent illnesses, and slowness to reach milestones…we thought things were okay for most of her first year.

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By her first birthday, it was clear that more was going on. She was a slumpy, floppy baby still…not standing or walking, needing to be propped up to sit, not eating, losing weight, dealing with chronic constipation, and so forth. So we switched pediatricians because ours was not paying attention to what was happening to her.

Switching pediatricians was one of the best decisions that we’ve ever made for K, but it led to a very different sort of life for all of us. The kind of life filled with strange tests…

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And hospital stays…

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And labs…

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And surgeries and procedures…

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And therapies…

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And weird new things…

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And innumerable hours of our lives spent in clinics and waiting rooms…

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(sometimes you just HAVE to be fabulous…even at the hospital.)

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And equipment…

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And yes, sometimes it has been exhausting…

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seriously exhausting, which leads me to the reason for writing this post…

This week is Mitochondrial Disease Awareness week. *Mito is the disease that has changed our little world forever. Life will never go back to “normal” for us. It is a progressive disease and there is no cure. K will be sick, for as long as she is here with us…which of course we hope is FOREVER. K is fairly stable right now, but there are no guarantees with mito, no guesses about how the disease will progress or the path it will take. Mito means the cells in her body do not produce enough energy to power her organs, so they don’t work the way they should…and working without the right amount of power will cause more damage as time goes on. While there is currently no cure, we attempt to raise awareness so that people will better understand the disease, contribute to the fight against it, and perhaps one day that cure will come, for K and for all of her little friends who struggle with the same exhausting disease.

But K has taught us that with the right attitude, you can pull just about anything off…

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And when you are looking for it, there is always WAY more good than bad to be found, like smiles and laughter…

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02 16 13_7679_filtered_edited-1(especially when throwing firecrackers into the lake with dad.)

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She’s also taught us that anything can BECOME normal, if you give it a chance…

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And that sometimes being brave means being “the most scared girl on the planet, but she did it anyway”…even if you cry the whole way.

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She taught us that sock monkeys can make just about anything better…

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And that friends who truly get you are one of the best things in life…if you find one, you better hang on tight!

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ch 4-22-06 Nathan's birthday 127And if you’re VERY lucky, some friends will turn into family…

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So yes, mitochondrial disease will be a part of K’s life forever, but our hope is that we will all be too busy LIVING LIFE to spend too much time worrying about it…for as long as that is possible. But it would be wonderful if any of you would help us spread the word about mito this week (or any time of the year!)…although it occurs at roughly the same incidence as cancer, it is MUCH less well known. So tell somebody about it. One person even! Share this post…just a couple clicks is all it takes. Go to the UMDF website and learn more. Get involved. Volunteer to be a counselor at Mito Camp or donate a little bit to help a camper be able to attend. Donate some new or gently used toys or movies to Children’s Memorial Hermann Hospital…or whatever your local children’s hospital is. Pray! Everyone can do a little something…and everyone doing a little something turns into a BIG something! Help us change things for the better, for K and for the kiddos like her everywhere.

* As of the date of this post, K still technically falls in the “highly suspected” category of mito. It is incredibly difficult to diagnose (and is made even more difficult by the lack of knowledge and information about it, even in the medical community) and while her doctors agree that this is what is affecting her, we are still awaiting science to catch up and provide us with a genetic diagnosis. 

Motility Follow-Up

I’m a little behind here! Waaay back in June, before the perfect storm and all that came with it, K saw her motility specialist for the first time. Her ordered a sitz marker study, which we put off until the last possible minute because I did not think I was going to be able to get K to swallow those tiny plastic Os. However, she surprised me! I hid them in her baby food peas and while she caught me after a few bites, she agreed to keep eating them. YAY! So we started her x-rays that morning and returned on the 3rd and 5th days for more films at the same time of day. The last x-ray was done on a Monday and her follow-up appointment was on Tuesday. Perfect timing!

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The image above is K’s lower abdomen 5 days after ingesting the markers. They should be mostly, if not all, gone by the 5th day after ingestion. They are basically all present. Dr. C said, “Well, now we’ve confirmed she has a problem from above, as well as below.” Super!  :/ But it is a good thing in that we knew we needed to be more aggressive in her bowel regiment. Without films, it is mostly guessing and frustratingly enough, TOO MUCH laxative and NOT ENOUGH laxative produce very similar results, so it is blind guessing most of the time. Controlling someone else’s bowel function is more complicated than you might think! So we had to do a full clean-out at home which was really difficult. She ended up having a lot of pain, vomiting, and some glucose issues…I think the next clean-out may need to be handled inpatient so she can stay more stable. After that, we started 4 tsp of Miralax both in the morning and evening and a 5ml dose of Senna every night before bed. I *think* it is working, but it is hard to tell. And she is losing a lot of water along with her stool….so I don’t know if this will be the ideal long-term solution.

He was happy that the Periactin is having a good effect and that she is eating more by mouth. We discussed her hospitalization in June and he did say that the gut shut down may have been triggered by the GI virus, but he said that if it happens again, we may have to do some more digging.  I am hoping it does NOT happen again, though! He is putting off manometry testing for now, which is okay by me since it is sort of an unpleasant kind of test. He was pleased with how her GJ looks and that it is working for us as we had hoped it would. We follow up with him in December.

In other news, K had her repeat sleep study on the 30th, so hopefully I will have results from that to share soon and she sees Dr. K (her mito specialist) tomorrow. I have several things to discuss with her…the hospitalization, possible dysautonomia, K’s recent leg pain, and hopefully some guidance on the balance to strike between formula feeds/fluids/nutritional status and letting K eat by mouth (she has been having some glucose issues since starting back to school, among other things).

Letter to the Teacher: 2013 Edition

I write one of these letters for K’s new teacher every year so they know what they are getting into and then I pray they don’t run for the hills! ;) I try to be as open and honest as I can be about her strengths and weaknesses so there will be limited surprises as we move through the school year. 

Hi! My name is K! I’m so glad to be in your class this year! My mom helped me write this letter to tell you a little bit about me that might help our year go more smoothly.

I am a little slower than my friends and I get tired easily if we are walking a lot so I might need extra help. I use a wheelchair for long distances, so if we go on a field trip I will need it. Sometimes I fall down, because I’m not always steady on my feet, especially when I am distracted. I might have a difficult time keeping up with the class when we have a fire drill and I might need 1 on 1 help from a grown-up when that happens. The muscles in my hands get fatigued and weaken easily, so I have special modifications in this area. My doctors think I have a disease that causes me to be weaker than my friends and causes me to run out energy much quicker than they do, called mitochondrial disease. It may seem like I am being lazy at times, but my body just cannot always keep up. Even when I seem to be keeping up on the outside, sometimes my body is slowing down on the inside because it can’t keep up with all of the energy demands, so my mom and dad try to make sure I don’t burn too much energy on “outside” tasks so my body can use more energy for “inside” tasks and keep me feeling better. I look like a healthy kid most days, but my body has to work much harder than others to keep me functioning in basic ways. If I get very run down or tired, I may need to rest in the nurse’s office or have my glucose checked. Nurse H is very familiar with my medical needs and can help you make decisions about how best to care for me at school. I get tired much quicker when I’m even a little bit sick and there may be times I need to sit out of PE during the year. If I ever complain of being dizzy or wobbly or say my legs aren’t working, I need to see the nurse right away.

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I have a g-button and a special feeding backpack that give me all the things I need to be strong and healthy. I am taking a new medication that helps me feel hungry and learn to eat more appropriately and my mom is not sure how this will affect me at school. I will have some emergency snacks in the clinic, but hopefully I will eat something at breakfast and lunch and feel okay otherwise. I also need Nurse H to check my glucose every day before lunch to be sure my body is getting enough of what it needs. There are times when my tummy just doesn’t work right and I vomit even when I’m not sick. The nurse knows how to help me and will call my mom if she thinks I may need to go home, but many times I finish the school day even if my tummy is acting funny. If I say I feel too full or like I might throw up, send me to the nurse quickly and she can help me feel better by venting my tummy. If my g-button comes out, I need to see the nurse immediately!

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I get migraine headaches and if I ever complain of head or eye pains, or changes to my vision, send me to the nurse immediately for medication, even if it doesn’t seem to be keeping me from participating. It is important I get my medicine at the beginning, so they do not get much worse. I also am very light sensitive at times, so I may not tolerate being outdoors then.

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I have asthma and if you notice me coughing a lot or coughing so hard that I gag/vomit, I need to be given 4 puffs from my Albuterol inhaler with my yellow spacer mask. I have some other breathing problems and I wear oxygen at nighttime. There will be days when I need to use oxygen at school because my oxygen levels are not where they need to be on their own, either due to the heat or illnesses. Nurse H will monitor me and get me set up if it is needed.

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My lips and tongue have gotten VERY big a few times and my doctors aren’t sure why this happens,  if you notice my lips swelling, or if I say, “My tongue hurts.” it means I’m having an allergic reaction. Take me to the nurse immediately. I need to have 2 teaspoons of Benadryl per my g-button. If I have trouble breathing or stop breathing, I need to be given my EpiPen Jr. Call my mom immediately if I have signs of an allergic reaction.

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Like the rest of my GI tract, my intestines don’t work quite right and I have to take medicines to help them function, because of this, sometimes I have small bathroom accidents. Nurse H will have supplies to handle this if it is an issue. When I go see her before lunch, she will remind me to try to use the bathroom to help prevent accidents. Rarely, I may need to wear pull-ups when I am having more trouble with this, but I don’t want my friends to know! I am on new medications that are helping this problem more, so I hope we won’t have to worry about it much this year! If I have an emergency, the code word I use is “PLATYPI”.

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I get sick easier than most of my friends and illnesses hit me harder and take me longer to recover from (sometimes sending me to the hospital) so it is important that my friends remember to wash their hands often and cover their coughs and sneezes.

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I am very sensitive to heat and cannot be outside for very long in the heat of the summer months. While it is so hot out (above 90 degrees), I cannot do recess or outdoor activities in PE and I will need a quiet indoor activity while my class is outside. During the hottest part of the year, there is a good chance I will need to sit out of PE even when we are doing indoor activities because the heat causes my oxygen levels to drop. Sometimes being out in the heat causes me to run a fever, even if I’m not sick. It also makes my stomach have a harder time working properly and can make me feel badly in other ways, too. Sometimes if I play too hard even when the temperature is nice, it might make my stomach feel sick.  It doesn’t always happen immediately, but my tummy gets very slow when it is too tired and it makes me feel bad.

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I can’t hear with my left ear. I used to wear a hearing aid, but my hearing got worse and it stopped helping. Because I don’t hear as well without it, make sure you speak clearly to me. If you are helping me do something, stay on my right side. It is hard for me to filter out background noises and I might have a harder time focusing, especially if the room is noisy. This is another reason it helps me to have written instructions. My audiologist wants me to use an FM system in the classroom this year, so we will trial it to see if it is helpful in the classroom setting.

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I have sensory issues and some sounds, smells, tastes, sensations, sights, and especially  textures that do not bother people can be extremely offensive to me. If I resist touching something, do not try to persuade me because I may vomit. I am very smart about managing my triggers and will avoid them as much as I can, but it is important for you to know why I may be so resistant to “normal” stimuli so you don’t think I am just being difficult.

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I am an excellent reader. I learn very well from written word, especially because I don’t always hear verbal words or instructions as well. It helps me a lot when my reading skills are used in class to help me keep up with what is happening in the class. Sometimes I get distracted or forget what I am supposed to be doing, so my other teachers have provided written instructions for classroom tasks and schedules and it helps me stay on task.

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I wear glasses to help me see clearly. I am nearsighted, so my glasses help me to see things that are farther away. I like to be very close to what I am looking at usually, because my eyes work best when I am up close.

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I’m a little different than my classmates and while I am VERY social and intelligent, I sometimes have trouble connecting with peers on their level and seem to connect better with adults. I don’t pick up on subtle social cues and have some things in common with people who have high-functioning autism, but this is also because of my underlying disease. I might need a little help interpreting and navigating certain situations and judging what is appropriate and inappropriate because my mom says that I was born without a filter! I am extremely honest, funny, joyful, trusting, and friendly because of this, but I am also sometimes too honest or can’t resist oversharing.

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I know it sounds like I have a lot of things going on, but most school days go really well for me! My mom keeps in close contact with the nurse on a daily basis and lets her know what things are likely to be an issue and how I am functioning overall. I think EVERY day is the best day ever and I’m so excited to be in third grade this year.  I love learning and I know I will have lots of fun in your class! My mom is always available if you have concerns or questions, big or small!

Your new student,

K

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