I mentioned in the last blog that Scarlet had a week of procedures and appointments. Here she is on Monday for the 9 hour visit at Children's Hospital. She was having another kidney test called an Iothalamate. It requires fasting from solid foods and milk, all she could eat or drink were clear liquids and jello. She doesn't like Jello so even though she couldn't eat anything she still only ate maybe one container of Jello all day. It also required 4 finger pokes. The first one she had she fussed and cried a little and then she tilted her head and watched as they juiced her finger to fill the 2 vials ( it really wasn't a lot of blood, but it seems that way when they milk your finger forever). They couldn't draw from her port because the medicine was infusing there and they needed a separate blood source to get accurate results. It took a week and a half to get the results back and they are excellent! She had a GFR Kidney function rate of 58% last year and her kidney function is now at 86%, much better! The doctor said on the message that he couldn't explain the good results but that they are very happy she is improving so much.
Thanks for all the prayers!
We had appointments everyday following and each became more and more difficult. Scarlet had a bone marrow biopsy on Wednesday and I was 9 minutes late because we were coming from Lakewood and still had to check in and park, etc. They made us wait 2 hours with Scarlet fasting for a 15 minute procedure. I kept checking with the desk and they kept saying 20 more minutes and finally I asked the receptionist to get someone to come and talk to me and tell me what the heck was taking forever. The lady that came was a family rep and she told me this blah blah story about us being 9 minutes late and so we got bumped and had to wait. I kind of had a little melt-down because this was our 3rd day of driving back and forth from Lakewood to Seattle and being at the hospital all day. The day before we waited for 2 hours for the kidney doctor appt and Scarlet was a mess by the time we finally got to see her and then now we had to wait another 2 hours and she was fasting. So, I got emotional and told her that she couldn't use us being late by 9 minutes as a reason to bump us because last time I was an hour early (I got my times mixed up) and they still made us wait an extra hour. I told her that it wasn't right to make a little girl fast for so much longer than was really needed for a 15 minute procedure. I didn't win my case, but we did get in 30 minutes later...it could have been longer if I hadn't talked to her, I dunno. That was the first time I've ever lost it at an appointment. Anyway, the marrow results came back amazing! If you can remember the first draw they did last year came back with cancer-like cells, the second draw in December looked like there were still abnormal chromosomes but not cancerous and now there are NO abnormal chromosomes to be found. We are so blessed! I'm grateful everyday for how well she is doing.
So, after the long week of appts. we went to the Zoo and my mom paid for us to ride the camel.
That was pretty cool, except I was hanging on for dear life to Scarlet because I was afraid the camel may do something unpredictable and she fall on her head.
We also got to go to a Mariner's game on Father's day as part of Seattle Kid's day,the Gift of Immunity guild hosted it. We got lots of fun stuff, ate BBQ while the team warmed up, and best of all we were able to meet a family whose daughter had the same diagnoses as Scarlet and had her transplant only a month after her. Her name is Madison, and she is doing really well too. Her donor was a sibling, so that's the best you can get.
I told you it was a long week... :) This was actually before the week started...but I was getting ready for the long week.
My sweet little princess is doing so well. Thanks for all the prayers and thoughts over the past 2 years. Not a day ever goes by without us giving heartfelt thanks to our Father in Heaven for our little miracle.
My parent's, Micah and Anni along with the Anderson family were over for the 4th. This is actually the 5th, but we still had lots of food to cook up so the party continued.
One of the perks to living across the street from the church is that there is a giant parking lot perfect for lighting off "legal" fireworks. Not sure if that's really allowed or not, but it felt safer than the street or out tiny driveway. I had to put quotations around "legal" because there was a fire at the church this year from "illegal" fireworks. It was a group in the back of the church who were setting off some kind of mortars and it knocked over and set the bushes on fire which consequently set the people behind the churchs' tree on fire, getting all too close to their home. It was crazy how many people saw the thick smoke and drove from the street into the lot to watch the firefighters doing their job. It was the happenin' thing that night. Of course, we were already there, but I'm sure if I wasn't there then I would have at least gotten close enough to see what was happening. Anyway, fire was put out, girl and friends were caught, and the home was not affected by the fire...except for the tree and the churchs' bushes. Lesson learned: Don't kick over your mortars near bushes...or don't light illegal fireworks in the church parking lot.
Cousin Star and Scarlet have so much fun together. I thought this picture was really cute, the two of them trying to put on sunglasses at the same time.
Those kids had so much fun getting dirty together. When I gave Scarlet her bath that night chunks of sand were just coming out of her diaper area...kind of reminds me of Hawaii.
They are just too sweet. I really hope they get to stay close together growing up. I haven't even seen some of my cousins since I was 10 and I want my kids to know theirs. It's fun seeing those 2 play together. Star has such a spunky, fun personality; they play really well together.
