New Normals

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Life has changed so much since Josie’s diagnoses (VSD, congestive heart failure, failure to thrive, and milk protein allergy…a diagnosis for every month of life so far)! It is definitely more complicated logistically (more on that later), but actually getting … Continue reading

Home!

We were released from the hospital on Friday and it is SO wonderful to be home. Josie is so different now, it is almost like one baby went into the hospital and another came out. Before she was hospitalized, she was nursing almost non-stop and everything else happened in these little 5-15 minute breaks where she either fell asleep briefly or was awake and happy and played with us for a bit…then back to nursing. I know everyone says they nurse their newborn non-stop, but seriously, there were many days when Josh came home and I told him that she was attached to me all day with a COLLECTIVE break time of 30 minutes for the whole day. She nursed A LOT. Everything else was much further down the list. Poor baby was working so incredibly hard to barely break even nutritionally that she COULDN’T do anything else. But somehow she was still so happy! In the hospital, we used a combination of timed feeds and the NG tube to teach her what a full belly was and transition her to a more “normal” feeding schedule and while we really chafed under the restrictions initially (feeding schedules, boo!), it has been really good for her overall and we allowed her to let her adjust it to her natural rhythms once she was over that initial hump. She eats roughly 3 ounces of fortified breastmilk every 2.5 hours during the day and then at night we set an alarm to give her a couple of “dream feeds” every 4 hours (earlier, if she stirs on her own), which she willingly takes. As a result, she now spends time playing before and after her bottles and lets us know when she wants to nap and sleeps for decent chunks of time! She has routines and preferences beyond “I’M STARVING, FEED ME!” Yay!

A lot of things have changed across the board. We went from nursing to pumping/bottles feeding with fortified breast milk with a couple of comfort nursings here and there (but we have to keep them short and limited because she has to work so hard at it and will get sweaty and fatigued). While I do miss nursing, I know this is what is best for her. We went from feeding on (constant) demand to a semi-scheduled feeding routine that we have to keep notes on. We went from cloth diapers to disposables (because with the formula fortification it requires an extra step to cleaning dirty diapers that I don’t currently have time for) that we are weighing for ins/outs. We went from nursing on and off all night to setting alarms to heat up milk and give bottles (oh my gosh, nursing is so much easier, especially in the middle of the night!). Her bottles are finicky so we have to watch the nipple alignment the whole time she is eating. We’ve also added in a strict medication schedule that we have alarms set for; 9am, 1pm, 5pm, 9pm; so between meds and night feeds we are waking up (REALLY waking up) three times a night now. YAWN! We’ll also be going to weight checks frequently; every couple of days at the birth center, once a week at the pediatrician, and once every two weeks at the cardiologist (where she’ll also be getting chest x-rays to keep an eye on her lungs and heart). It is very, very different, but it is what she needs so that’s what we’re doing!

Another thing that is different is that we now have to be very careful with Josie’s health and treat her like an immunosuppresed baby because her heart will not handle illness very well. We have to avoid crowded places and people who are or MIGHT be sick. So if you are sick or might be sick or have been around people who have been sick, PLEASE keep your distance. “I think it is just allergies.” is not sufficient in this case. We will likely be avoiding large gatherings (even family!) and places where there are kiddos, just because of the high rate of infection and snotty noses and slobbery hands. It won’t be easy, but again, it is what is best for Josie so it is what we will do! We have to keep this sweet baby healthy and growing so she’ll be ready for surgery when the time comes!

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Look who is three months old today!


PS: If you have any exclusive pumping tips, please share! It is going to be tricky pumping, feeding, and taking care of Josie when Josh goes back to work so maximum output in fewer pump sessions is our goal.

Josie’s Heart

Last Friday, Josie had her first visit with the pediatrician. Her first couple of check-ups were done by our midwives, first at our house and then at the birth center, so we didn’t need to the see the pediatrician until it was time for vaccinations. While at the appointment, the doctor heard a heart murmur. At first she said that it sounded innocent, but as she listened she decided to order an echocardiogram because Josie has also been having difficulty feeding and gaining weight. On Tuesday, Josh and I took her for her echo and Josie was so well-behaved for it, but after the test the tech told me, “If you don’t hear from your pediatrician in the next couple of hours, go ahead and call her.” I’ve been through a billion tests with K and NEVER been told that, so when we got in the car I told Josh I didn’t think the results were going to be good. We headed back towards home and stopped at Sonic to grab lunch and as soon as we pulled in, the pediatrician called and said we needed to go to the ER immediately and would most likely be admitted to cardiology. Josie has a large VSD (hole in her heart) with significant shunting (blood going the wrong direction, making her heart work way too hard). So we went by the house to grab a few things and headed to the hospital.

Once here, we were taken back pretty quickly and she had an EKG and chest x-ray done, and had labs drawn and IV placement was attempted. Cardiology came down and explained her heart defect, and that her heart is also enlarged and there was fluid on her lungs from the excessive work her heart had been doing (congestive heart failure). They went over the symptoms of her VSD: constantly feeding, falling asleep quickly when eating but not staying asleep very long before resuming feeding, sweating while feeding, fast breathing, difficulty growing and gaining appropriate weight. She had all of them, which we knew from Googling them after hearing about her murmur, so it wasn’t a complete surprise, but the symptoms also have totally innocent explanations, too. People say that newborns nurse a lot and not to pay attention to the interval between feeds. Babies get sleepy when eating. Sometimes babies get sweaty when nursing from the shared body heat. Babies breathe quicker than big people. She has had some latching difficulties from birth, so we thought the weight gain issues were due to poor milk transfer. But nope. She’s had a large hole in her heart all along, making it impossible for her to feed well enough to get full, thus the constant feeding. And the sweating. And the drowsiness. And the lack of actual naps. And the lack of weight gain. And the signs of inefficient milk transfer. It was like she was always running a marathon and trying to eat on top of that. So we are in the hospital now, trying to get her to gain weight. If she can start gaining weight, they are going to let us go home and let her continue to grow and get stronger for a couple of months before going in to close the hole surgically. If she can’t start gaining, they’ll have to repair it sooner. Right now she needs a feeding tube to get in her feeds (they let her eat for 15 minutes and whatever she hasn’t finished at that point goes in her NG tube), but they hope she will gain strength and be able to take them orally before we go home. They’ve given her meds to draw the fluid build-up out of her lungs and they are much better, but she is still struggling a lot with feeding. She isn’t supposed to nurse anymore for now because it takes more work than a bottle feed and they can’t track her calories and intake, so I’m pumping and they are fortifying my milk to make it more calories per ounce. We are SO thankful we found a bottle she can take recently, I can’t imagine trying to do all that trial and error while we are inpatient! She also likes her binky a lot more now, probably because she misses nursing, so we are thankful she’s accepting that substitute.

I know people are curious about why this wasn’t discovered earlier. In part, it may be due to the delayed initial pediatrician visit, but larger holes are quieter and more difficult to detect…and often these are missed even at pediatrician visits until 6 or 8 weeks of life. If she had been born in the hospital, maybe they would have caught it, but maybe not. She passed her screening test for congenital heart defects at birth because this type of hole does not effect oxygenation levels. I don’t know that it would have been caught had we done things differently, but we are still SO thankful for her gentle entrance into the world and the months we got to spend at home before diving into all of this and wouldn’t change any of it. The symptoms she’s had since birth could also have been attributed to other things, so the detection of the murmur and the echo were the keys to catching it and thankfully it was caught. Hopefully she will start showing some gains and we will get to go home again in a few days! People have also asked about the big kids. They are handling it well. N has been a big help and now he’s spending a week or so with his best friend, and K is with my mom and had VBS and a couple other things to distract her this week. It will be very nice when we are all home together again! We just need our little Jo to grow so that can happen.

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Year One

K and I finished her first year of homeschooling a few weeks ago and I think it was a success! Although her health was pretty good for the most part, she still had enough issues that it made me very thankful not to have to wake her up early and shoo her out the door when she wasn’t feeling her best. She had a nasty respiratory infection back in the fall, a lot of GI issues during the winter, and bouts of pain that seemed to come and go…but being out of school meant that she did not really acquire any contagious infections this year which was awesome! For her health, homeschooling was definitely a win!

 I feel like she learned a lot this year, too. The hardest parts were long division and two digit multiplication, but we survived! Otherwise, it was pretty smooth sailing. She is such a smart kid and strong reader, so that really made most of school very easy for her. It also made it possible for her to continue working when I was busy with Josephine at the end of the year.

I do wish we had been able to do more out of the house/social activities this year, like museum classes and field trips, but with me being pregnant (nausea and vomiting in the fall/due in the spring), it was hard to sign up for much! She is such a social kid that I know she would love interacting with a wider world of people, so hopefully next year we will be able to do a bit more in that arena. We did a few things this year; farm field trip, the Nutcracker, Valentine’s Party with other homeschooling friends, but there are so many available opportunities for her to explore!

I interviewed K about her year and these were her answers:

Favorite Continent(s): Asia and Australia

Favorite Ecosystem: Tundra

Favorite Subject: Reading

Biggest Challenge: Math/2 digit multiplication

Favorite Part of Science: Order Lepidoptera in Flying Creatures

Favorite Part of Bible: Windows on the World (a study of differen cultures/religions)

Favorite Part of Math: Nothing/Addition, if forced to pick something

Favorite Part of Geography: Pretend travels

Favorite Part of Art: Designing a house

Favorite Part of LA/Spelling: Adjectives

What are you looking forward to next year: Art and Egypt/the pyramids

This year our main curriculum was geography centered, next year it will be focused on early history, up to the Greeks. We are going to keep using Teaching Textbooks for math and Apologia for extra science (she picked Chemistry and Physics, eek!), but I think we may try something new for LA. Overall, I’m really pleased with how our year went, even though my pregnancy and Josephine’s arrival complicated things just a bit, and we are looking forward to next year…after we enjoy a nice long lazy summer!

Josie’s Birth Story

Josie is two weeks old now, so I figure it is about time to post her birth story. It has been on my to do list, but getting sufficient time where I am not holding or nursing this sweet little baby girl has made it a challenge…but I definitely wouldn’t trade this out for more free time! Since this is a birth story, don’t keep reading if you don’t want to know birth details. ;)

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First, I’m going to backtrack a bit. On Wednesday the 8th, I went for a biophysical profile ultrasound and had a follow up visit with the midwife. Everything looked great, but we found out that if I didn’t have the baby by the following Tuesday, we’d have to get transferred over to OB care which we REALLY didn’t want. We weren’t planning on having my membranes stripped, but since we were in a time crunch we went ahead and had that done at my appointment. It gave me some contractions here and there and eventually they settled into a regular pattern and I was up part of the night that night timing them, but they eventually tapered off. The same thing happened the following night, but again, they tapered off. Then on Friday morning, my water broke! That was a new experience, didn’t happen with either of the other kiddos. This started a second clock, because they really don’t like you to go more than 48 hours without delivering once your water has broken. Josh came home early that day and we spent the day trying to encourage things to move along with walking and clary sage oil, but Friday was a pretty calm day. The midwife came and checked on me and Little Duck that evening and we were both doing great! Once night hit, I started having some regular contractions and we were up all night timing them, but again, they tapered off around 4am and we slept for a couple of hours. The midwife gave us the morning to try to get things moving along again, but it just wasn’t quite happening so we went in to have a Cook catheter placed to help me efface and dilate. Josh got to be the assistant and fill the balloons. He was a good nurse. Basically, the catheter puts pressure on both sides of the cervix and irritates the uterus into contracting and comes out once you hit 6cm. It didn’t take too long for contractions to pick up and by 4pm we were timing them again. We went back to the birth center at 8:30 to have the catheter checked, but it was still snugly in there so they advised us to go walking when we got back home. I was having some pretty strong contractions, so we only made it a few houses down the block (with lots of stopping to wait out contractions) before we headed back home. It seemed like a bad idea to be loitering in front of people’s houses in the dark and I couldn’t make it more than a few steps before I had to stop again. I went to the bathroom when we got back and BOOM! the catheter was out. We let the midwife know and she said we were fine to keep laboring at home until we felt like things were getting close to delivery. So, that’s what we did! We were both pretty tired from the lack of sleep the previous nights and I was unable to lay down at all that day because the contractions were extremely painful if I did, so I mostly hung out on the birth ball which was the most comfortable place to be…but we noticed things would slow down a little if I sat too long, so Josh would watch the clock and remind me to stand and walk every 4-5 minutes if a contraction hadn’t started up. Around 10 or 10:30, I went ahead and took a shower to be ready for when we went in and pretty soon after, I started feeling a little queasy with some of the contractions so we texted the midwife and decided to go in around 11:30 or so.

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When we got to the birth center, everything was all calm and ready for us and we basically just continued to labor independently (on the birth ball at first and then in the tub) with our midwife quietly supervising until I hit transition and then both midwives came to help. This labor was definitely the easiest/most pleasant out of the three, even though I had pain medication with the other two and none this time around. The contractions were definitely strong, but I never felt like they were out of control or unbearable…intense, yes! But being free to move through them in a way that relieved a bit of that rather than being stuck in a bed made a huge difference and Josh was great at reminding me to relax and breathe through the rough ones towards the end. Being able to stay at home so long and do what we wanted (which was mainly watch The Office) was wonderful, too. Then there was transition, which is always so much “fun”, and I was extremely nauseated and started throwing up. It was a glamorous time…contractions, vomiting…so many wonderful things happening at once! However, the nausea subsided once I started pushing. Usually pushing is a super quick process for me…a few pushes and we’re done! But this time, it didn’t happen like that. I thought it might be because I was in the water, so we moved to the bed in a kneeling position, but things still didn’t move forward as quickly as I wanted and MAN, was I exhausted and therefore fighting with a little case of the “I can’t.”s, so I asked to lay down and after some more pushing in a side-lying position…she was here! Josh said I probably pushed for 45 minutes, but it felt longer than that in the moment. She was born with her right hand out first ahead of her head and that is what made things more challenging in that stage. She also had the cord wrapped around her neck twice, but they were so great at pacing me through the pushing once she was emerging and just quickly and easily unwound it. They said it was probably a good thing since my water had broken, it kept it from prolapsing (coming out before her) and causing more problems. The pacing also helped her get her without causing any tearing or that sort of thing. Yay! Once she her hand, head, and shoulders were out, I was able reach down and grab her and pull her up to my chest and it was a perfect moment. They had Josh look to see gender and SURPRISE! She was a girl. I said, “Katie was RIGHT!!” And that is how we met our Josephine.

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She was so quiet and alert and definitely interested in nursing, and we just relaxed together while she stayed connected to the placenta for a good hour or so…such a sweet time! I wish the other kids’ births had been as calm and gentle as Josie’s was, we didn’t get to enjoy such moments at the hospital! Josh cut the cord, after sufficient time had passed and it was done pulsing. The midwife brought me a snack (it was the best orange I’ve ever eaten, LOL!) and some water somewhere in there, too. After a while, they weighed and measured her (7 pounds 1 ounce, 20 inches) and cleaned her up a little and Josh got to hold and rock her a bit. She was born at 2:45am and they let us go home around 6am. It was wonderful! The whole experience was perfect and if we ever have another baby, we will DEFINITELY go this route again. It was so different than an OB managed pregnancy/birth…so calm and laid back and NORMAL. Even surprising things, like my water breaking and the delay before labor started and her hand and the cord, were handled so calmly and efficiently. I feel like medically-managed pregnancies and deliveries are treated like crises until proven otherwise, and this was the opposite of that. It was obviously hard work, labor/birth always is no matter how you do it, but it was a fantastic experience and I would not change any of it! We are so thankful for all the midwives at Bay Area Birth Center for taking care of us throughout the pregnancy, and especially appreciative of Stephanie and Jackie who helped us bring our precious girl into the world! We will always remember it fondly.

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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!