Happy New Year!!!!!!!!!!!!!!

Well-A hiatus is a bit of an understatement. I have started a post-probably about 20 times in the last several months-and it just doesn't get finished! So,

Happy Halloween

Happy Thanksgiving

Merry Christmas

Happy New Year

And everything else that I have failed to recognize!

I recently stumbled across our VERY FIRST Christmas letter and realized that we haven't written one since our first year of marriage....ummm that's embarrassing! So here we go with our Christmas Letter February milestone update.

Our little baby girl is hardly a baby any more. Does time fly faster with the more kids you have or something? I feel like every time I turn around she is doing something new and it blows me away!

She is 9 months now, she crawls, pulls herself up and scoots along the couch and stands independently in the middle of the floor. I 100% believe that she has been motivated to be mobile because of her older siblings that are CONSTANTLY loving on her. 

She has 4 teeth, 2 bottom teeth and 2 snaggle eye teeth. I have never seen that before, but she is still the cutest vampire baby ever! She brought us so much joy in a year that was filled with some overwhelming difficulties!

She is the happiest little thing and we have been SO grateful for her irreplaceable addition to our family.

Our 'Number 2' was pretty displaced this last year. Between mom at school and doc appointments for pregnancy, dad in school and working, Indie and all of her doctor visits, tests and surgeries and the birth of his little sister-he spent lots of time with babysitters and we endured his 'Terrible Two's' with some additional....learning opportunities. He pretty much didn't sleep through the night the whole year but with the magic of the newest member of our family-'Hoot the sleeping Owl' and a bunk bed, we have seen HUGE improvement and are excited to have a couple more hours of sleep at night!

He LOVES football, and any and all sports, he has amazing dance moves-and I mean it-for a 2 and a half year old he's got the beat and is extremely flexible!! haha. He also talks really well and I love the things that he says as he learns and notices new things. The other day he took my face in his hands and was looking deep into my eyes, he then very sweetly said,  'Mommy, You have snowflakes in your eyes'-I don't know entirely what it meant but it was the most romantic thing a boy has ever told me. 

Today we were dancing together and I was chasing him backwards, bouncing towards him and he stuck his hand out and said, with his adorable little lisp 'Stop mommy, you are hurting my feelings'. I hope that he tells all girls with bouncing bottoms that they are hurting his feelings. It totally cracked me up!

He has started the new year off right by potty training himself. It's been a miracle and we are SO glad to be out of diapers! He LITERALLY took his diaper off and went potty himself one night and has been going strong ever since. He of course had some accidents here and there, but I MEAN here and there! It's been great. No sticker charts or m&m's for this kid, just a strong dislike for sitting in his own excrement! Yahoo!!!

Indie's 2015 was pretty rough but she is my hero. She doesn't pretend to enjoy the tests or needles or doctor visits, but she is smiling as soon as it is over and back to her old self in no time. We had SO MANY tests last year. She is on medications that we are hoping have an end in sight, but no news yet. The NIH (a research hospital) wants to do some new tests on her and Kyle as they share a genetic defect they think might be connected to the infections ability to persist. She is not a sickly child at all. It is amazing to see how well she responds to everything and we count our blessings that our lifestyle has not had to change drastically! She is in preschool and enjoys it, most of the time. Her speech has improved dramatically and she is very spirited. It has been fun explaining things to her and hear her spout off completely logical explanations to other people. She is SO friendly and has no problem talking to anyone! She also believes that she can speak Spanish and Thai, like some of her closest friends. I hope that she continues to appreciate other cultures and getting to know others. Those opportunities have been a huge blessing in my personal life!

                                           

      Kyle is a hard-working-hottie as usual. His first year as an MPA graduate has brought some unknown challenges and many blessings. He has learned so much as a rural community consultant and found a renewed passion for serving others. We found out this year that he has the same genetic issues that Indie has and will be tested by the NIH as well. Since Indie's immune system issues are genetic, we will be watching our other children closely to see what the future brings. Kyle brings a calmness to the madness and we feel like it is a blessing that he is able to go with Indie and do the same tests as her (She finds comfort in seeing she is not the only one). 

Hopefully, with Kyle's help as well, they will be able to find something out that will help others in the future as well as understand and figure out some things that can help Indie. He really is a champion and we couldn't have made it out of this year without him! 

As for me, Kyle continues to support and encourage me to get my degree. He promised my dad before we were married that he'd make sure that I graduated with my degree and he is upholding his promise! I continue to take 1 or 2 classes each term at BYU and I am FINALLY considered a Junior. Hallelujah! I'm starting to feel like the old fogie on campus, my study group consists of all 18-19 year olds-but ce la vie! I'm glad to be progressing, and as funny as it sounds, it is a break for me to go to school and think about other things. My in-laws and friends have been indispensable as they've helped watch the kids so that I can pursue this passion of mine. Besides that, I have let so many trivial little things go this year and have enjoyed being a stay at home mother on a WHOLE NEW LEVEL. It took me 3 babies to get passed the difficulties of parenthood and legitimately enjoy every moment.  I genuinely appreciate all the time we have together, I LOVE watching my kids get older and learn new things. Being a parent is the most exhausting and exhilarating thing I've ever done.

   

SO that was a very condensed version, but that was our year. We are excited to see what waits in store for us this coming year. Much love to everyone.

Chapter Six: A Year!

Well, It has been a summer jam packed with tons of stuff! Now here we are, middle of September and I’m feeling overwhelmed with things to remember! For example, my 2 year old just pulled his diaper off and went potty on the “big ‘oy potty” (twice) out of his own free will. That is a Fall miracle if we’ve ever had one! However, he is back in diapers this evening because the excitement wore off and (call me crazy) I do NOT want to start that battle just yet!

Before our Canada trip we had a load of tests done for Indie -to give us some peace of mind. It was really a nice month and a half break of no appointments. We kind of got used to giving her the medicine and just living a normal life!  My mom came back with us and it was nice to have her help to adjust back into life with the kids but we also had fun! As a family, we participated in a world wide scavenger hunt that was based around doing service projects and promoting healthy living in a fun way! We had a BLAST!!!!! We also met up with LOTS of friends from Singapore and family that my mom hasn't seen in a long time. It was a really great month and a half!

(Now lets take a second to reminisce about the time we had....aww...we miss the cousins!)

  

Alright-back to business! 

Indie had an ultra sound which was just a regular check up and to our dismay, they found that the bacteria has not grown, but has changed shape which means it’s still a live bacteria. Our meeting with the surgeon was not a happy meeting. He said that we will continue to try alternatives but he believes that it will ultimately result in removing her spleen. Not great news. On top of that, our 2-year-old son has a swollen lymph node in his neck (he's had it since he was 3 months old). The surgeon is confident that his lymph node will also need to be surgically removed to test that it isn’t the same bacteria that Indie has.

Funny how the initial feelings all come flooding back. (I’m pretty sure they will continue to come back every so often).

I felt like things were looking up and it was all over, now it’s starting from the beginning with another child and Indie isn’t making progress? (Insert muffled scream sound here).  We then had our infectious disease specialist call for an immediate meeting that the secretary couldn’t tell us about over the phone. It’s hard not to work yourself up just a little bit when you have a week to think about all the possibilities! In the week before the appointment our 2 year old had had night sweats so bad his fingers were pruney and had thrown up twice-which are the first signs of this bacteria. So that wasn’t good.

It just so happened that the day we were scheduled to go in was Indie’s FIRST DAY OF PRESCHOOL. (Which by the way she didn’t make it to because her appointment went longer than expected and her brother puked in the car during the commute, so we called it a wash. Poor thing had to wait an extra 4 days to start-but we did get a couple rounds of "first day" pictures!).

  

The doctor was sweet and luckily the news wasn’t too intense, they just wanted us in right away for a check up. Indie’s medicine was not working the way they wanted so they doubled the dose. It’s a lot for a little girl to take. The dose is for a much larger kid, but we think it's better than the alternatives. We will do all the blood work again this month to see if the new dose is working.  She also said that Our son’s lymph node appears inflamed but shouldn't be anything to worry about right now. We will give it some time to see if it goes away. The 'waiting' part is hard for me. Obviously I don’t want him to have surgery and I don’t want to go through this all again with another child-but he has had this lump for 2 years-under the current symptoms and circumstances (and the high likelihood of there being a genetic connection), I'd really like to know what it is! 

This is where I have the hardest time. Leaving everything to the research and waiting to see if more symptoms follow. Oy, oy, oy. It is tough waiting for something to happen.

After starting the new dose of meds, Indie had some rough days. Throwing up, ugly upset tummy sorts of things but they have pretty much stopped now. It is hard to know if it is related to medicine or if it is just because she is susceptible to colds and other little bugs. The residue on her teeth continues to creep in but her dentist is awesome and scrapes them clean regularly. Her tongue has turned an orangy-deep redish color but those are the most noticeable changes. She has definitely been more grumpy lately. It is kind of embarrassing for me (I know all kids have their days, but it's hard when your kid is having a LOT of 'days' and you're not really sure why!). Aside of that, she is still an active little thing. By all accounts it still seems totally abnormal for her to be reacting so well! 

 

     

So here we are. A year since we first noticed the lump - Just before her third birthday. The future was really uncertain for a while but we find ourselves getting used to the waiting rooms, appointments, navigating pharmacies and insurance claims, a new and improved diet, knowing doctors on a first name basis, and having a routine treat at the hospital cafeteria. (She really likes the gourmet gummy bears!.....As does her mommy!) Here we are going to celebrate her 4^th Birthday soon. Looking back, life was totally altered for us, a whirlwind that brought a whole new dimension to our lives. 

We are so grateful to have 3 beautiful kids that get along and love each other. It has been a huge blessing for us to have their unique personalities in our home and blending as well as they do. Our sweet baby has brought such a calm to our family. Although there was a lot going on when she arrived, she couldn't have come at a more perfect time! Even though there are still stressful days, there is an underlying peace that keeps us hopeful that progress is on the horizon and this is just a season for our family.

Chapter 5: The Bright Side

We have finally made the long 36 hour trek to Canada to enjoy a summer holiday with family, away from reality! However, it was a busy month for us as we prepared to leave and get all of Indie's tests done before we left. We were asked by a research group called the NIH if they could test Indie's blood for research that they are doing on her particular disorder. They do extensive testing on her blood and DNA, and it would potentially help us have clearer answers-so it was a great opportunity. On the other side, however, we didn't want to add any more stress for her that we could avoid. After lots of consideration, we decided to do it. Since we were first introduced to Indie's condition and all of it's uncertainty, Kyle and I felt strongly that through the research and testing she would be able to help others in the future. This was an opportunity for her to do so (it was obviously to help us reach some conclusions as well). 

Early in June I started to notice Indie's teeth changing color and I wasn't able to get them clean no matter how hard I brushed. I know it's just a cosmetic thing but I was concerned as to whether or not it was related to her medicine. I contacted our dentist and prior to our visit, he had done some research on her condition and medicines (can I get a 'WAHOO' for proactive medical professionals?) He found that one of the medicines that she is taking can change the consistency and color of your saliva. How random is that? Essentially what it did to Indie was make her spit 'harder' and a different color. Essentially it tainted her teeth.  Indie was a trooper as he used all of his noisy tools and scrubbed her teeth like crazy! Owen also was also a good support to his sister-and watching cartoons next to her was an added bonus! Our sweet dentist offered to clean her teeth free of charge every couple months so that her teeth don't completely change color. We are not sure if it will do anything to her big teeth that are not in yet, but hopefully if there are any changes, they will be cosmetic as well and fairly painless to fix. Appointment 1 -Down! 

 Thank goodness for siblings and Netflix!

The next thing we had to do was test Indie's blood to make sure that the medicine was working. Since the last ultrasound indicated the bacteria had grown, we needed to find out if her medicine worked at all. The test required a blood draw before taking the medicine and then another one a couple hours after she took it. She also needed a blood draw for a DNA test and then another one for the NIH. They also required blood from Kyle and I so they could see if this is something hereditary that the other kids could have. We hoped to take all the needed blood all at once (with the exception of the compulsory draw after taking her medicine).

Insurance wouldn't cover the DNA sequencing so we had to do that later at a different hospital and they couldn't give her an IV (to eliminate extra pricks), because the amount of blood needed could collapse her veins-so we had to do separate draws. Booooooo.

I was dreading the process but we had some introductions at the hospital that brought things into perspective. When we walked into the lab there was a young mom with her (roughly) 12 year old daughter. The daughter had no hair, a port in her chest, and bandages on her arms. They both looked pretty haggard but were friendly as we walked in. Expressing good wishes for Indie's upcoming tests before they left. Kyle took Indie into the small room while I waited just outside with the baby. Indie told the nurses to 'please don't hurt me' as they had to brace her. I hate this part. When Indie gets blood drawn, Kyle sits in the chair and holds her facing his chest. Her arm goes under his arm and he braces it while a nurse holds it steady and the other nurse draws the blood. While she was screaming 'mommy help me' another mother walked into the small waiting area. She could tell I was about to burst into tears and told me that she hates this too. She has a 4 year old daughter who had a heart transplant and has had to get her blood drawn 3 times a week for the past 6 months with plenty more to come. She was so calm. I felt an instant connection-as I have before as I have been at Primary's. The parents who take their kids there, have an instant camaraderie as they are all unsure of the future and trying their best to hold it together for their kids. Seeing the more immediate and dire circumstances that surround us always makes me feel thankful that we have only the trials we do, yet sorry for those who carry such difficult burdens. 

After they drew Indie's blood, she showed me her owie, but was soon smiling. She really is so lucky that her tests are minimal compared to others that we have met and I'm so grateful that we have the specialists we need to help us progress in her healing. 

After the first poke-she's still smiling!

My sweet aunt made dinner for us while we waited for the medicine to kick in and then we headed back for her next poke. We are grateful for the family that has been so supportive as we've been doing these tests. The next round of poking was not as glorious for Indie-she now recognized the lab room and was not very happy to be back. She did better this time, though. I think she may have just accepted it was coming. Her sobs were mingled with silence as I listened, I thought she must have passed out but Kyle said that she just stopped crying (with some help from a movie).  She never ceases to amaze me with her emotional strength in the midst of all of this. Appointment 2 and 3-Down!

 After her 2nd draw-dancing outside the hospital doors-probably glad we were out of there!

The next morning we left at 6am to a different hospital for the DNA sequencing blood draws. 

Luckily we had Grandma Slaughter with us to help because with all three kids it was a LONG morning of miscommunication, missing paperwork and tears! Indie got her blood drawn again - I am sure you can imagine the emotions that were associated with this draw since she had done it 3 times in the last 12 hours. I'll spare you the details of the very arduous process to get all the work done-but all in all we didn't get home until the afternoon. It was less than enjoyable. In any case, Indie was quite impressed that Kyle and I also got our blood taken and wanted to have Grandma and her little brother do it also. She actually sat with Kyle while he got it done and was quite mesmerized by it all and I think that helped calm her a bit. Despite her curiosity while Kyle had his blood drawn, I don't see her becoming a nurse in the future (Kyle feels she is likely to become one)! 

Our family photo sporting our matching arm bands! (We only got home after noon, so don't mind the sleepy faces!)

Now that that was done, we were able to focus on our trip with one last appointment to come. I pushed for another ultrasound so that we could leave with some peace of mind-knowing if the bacteria is still spreading or if it is staying the same. Luckily for me, my doctor agreed and ordered the ultrasound. Despite Indie's reluctance to go to back to the hospital her and her little sister went and since Finding Nemo was on in the office-all seemed to be okay! 

Indie waiting for the ultrasound watching Finding Nemo.       After the ultrasound, smiling like a pro! 

The next day we got a call from our pediatrician. They told us that the results from the ultrasound came in and the bacteria in her spleen is SHRINKING! Oh my goodness, after all of the time and testing, it was a HUGE relief. We can assume then that the medicine is working-we'll still hear back about that-but it's definitely looking positive! 

I can't even explain our excitement, besides writing in bold font!!  WE WERE SOOOOO EXCITED!

Sharing her excitement with her little sister:)

We obviously have to still wait for the DNA sequencing information-that will tell us specifically what is wrong with her immune system so that we can (hopefully) correct that and potentially avoid problems in the future, (and pending those results) test our other two babies and find out if they have the same immuno-deficiency. Hopefully they don't, but knowing now will help prevent problems in the future. As of now, we need to continue the medicine for the rest of the 18 month period and will continue to have tests to ensure that she isn't having any negative side effects. In the next couple weeks we have appointments with the eye doctor, surgeon, a CT scan to verify the status of any and all swollen lymph nodes in her chest, the dentist and the infectious disease specialist. 

Happy to have a month without any hospital visits!

We recognize how much worse things could be, and are thankful to God, our doctors, for a little girl with a great attitude, for a brother and sister who care and are understanding, and to be able to say things appear to be headed in the right direction. Thank you for all your support and love. We feel extremely hopeful and despite the tests still yet to come, the future is looking much brighter. 

The Long Awaited Update

Well, it has been a while since we have written an update on Indie and thought it was time. To be perfectly honest it has been pretty quiet as we’ve waited to see the medicine is working in her little body. During this little hiatus, I finished another semester at BYU, Kyle graduated with his Masters in Public Administration and we had our third baby, a precious little girl. It's been a busy couple of months to say the least! 

 

We have been incredibly impressed and blessed with the positive way she has reacted so far. Over the last month and a half we have been watching her and keeping track of any changes we have noticed. There really hasn’t been anything that was noticeably different. Since starting the medicine she isn’t as tired as she was and she definitely hasn’t been physically ill. The biggest and most consistent change is that she has to go to go the bathroom regularly and it seems to still bother her a little bit to go, but she is SO good about going and is positive about it all so that’s good.

We switched pediatricians and it has been a huge relief for us. Our primary pediatrician was perfectly nice but not as hands on and involved in helping keep track of her treatment. Maybe my expectations were high, but we really wanted a doctor to help us keep track of, navigate, and make sense of everything that is happening.

 ANYWAYS- I went to the new Pediatrician and told him what I needed, and what my concerns were and he offered so much insight in the 15 minutes we talked that we were converted! He assigned us a medical liaison (of sorts). Essentially she calls the hospital for us and makes the appointments and keeps the notes and everything from all the specialists in one place. He also set up a contact list where he is informed any time a specialists updates their notes on Indie and then the liaison calls us and fills us in on anything that is new or new tests that are required. It has been a huge help to us as we don’t have to play as much phone tag with Doctors.

This change for us has made a HUGE difference in how we function day to day and has been a big weight off our shoulders.

As far as her diagnosis goes- She had her first follow up ultrasound this last Thursday. The hope was that the bacteria was either the same, or had shrunk a bit and we would be able to take her off of one of the medicines she is on. However, they found that the bacterial infection in her spleen has grown. This isn’t really good news but we are hoping that the growth happened before she started the medicine and that further tests will show it is no longer moving. Her positive reaction to the medicine would hopefully indicate the latter! I’ll be honest though. It was a blow. I guess since they have consistently been saying how amazing she is doing, I was expecting everything to be fine. When they called and said that it had grown, I wasn’t expecting it at all and all those feelings from her initial testing came rushing back. (Perhaps my postnatal emotions had something to do with those feelings) In any case, it wasn’t what we wanted to hear.

We hope to have her reevaluated at the end of June, so we can make sure things are headed the right direction before the kids and I go to Canada. Our new and fabulous pediatrician supports it 100%. Hopefully, we will be able to see a positive difference.  If it continues to grow, the next step is removing her spleen in September. We are hoping that it doesn’t come to that.

Overall, Indie is really doing amazing. It is hard to believe that there is such an invasive bacteria in her body when you look at her. She is vivacious, full of life, and is amazingly resilient. Besides disliking needles and the hospital, she is very positive and we are positive that the future is bright and this will be sorted out. We've been making the most of our time and her new little sister provides a lot of loving distraction! 

We have recently been given clearance to start some testing on her DNA sequencing to find out what type of immunodeficiency she has; it will be a blessing to understand better, and come to know what treatment options exist for the underlying issue.  We don’t want her to get sick, because the test results can be skewed slightly if she is sick (swollen lymphnodes for regular sickness can look like the bacteria is spreading), but at the moment she is able to do pretty much anything outside of getting really dirty or muddy, or playing where it is really dusty.

The biggest thing for her to avoid is potting soil, dirt, dust, and sand. We are also advised to keep her away from animals (they tend to carry this bacteria) and avoid going outside when it is windy or when the inversion is bad. Things have seemed to take on more of a long-term pace and we feel we can work with where we are at. 

On another note, (for those who may not be familiar with children’s hospitals and care) Whenever a child visits overnight or has any type of testing that may be stressful for them, they get a toy. Indie has been at the receiving end of these gifts several times and it has not only made the trip more bearable but her small little owl is one of her treasured little buddies. She tells him what she is going through and pretends he has to get all the same tests done and that ‘it’ll be ok’. It has been really therapeutic for her.

SO, with that being said, We decided to donate the beanie babies that I have collected in grade school. I have been holding onto them because they have been somewhat of a connection with my dad and I felt bad selling them or anything- so they’ve sat in a box for the last, almost 15 years! We had about 80 that we took in (some we still have-crazy I know). It was a perfect way to part with them, I am glad they will be able to give the same comfort to some children that Indie’s owl has given to her. It was also good for her to part with them. She didn’t really want to but it was good for her to go through that. If you want to donate, I strongly encourage you to! If you visit any hospital’s website they have a list of things that they need and you can see specific things that you may be able to donate besides stuffed toys!

Thanks so much for the letters, stickers, notes of encouragement and all other support. We feel it an appreciate it.