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.