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.