Carissa Faith Shuffler: 5/22 update

Many of you will not be able to fully appreciate the analogy I am about to share if you are not in the same industry that I am in, homebuilding. Sometimes you see something in your child's life and just know more about them that you thought you could at this point. There have been points like that in Colton's life, our 13 year old , and has already occured with Luke who is just 19 months old. Today I was thinking about Carissa. She jumped out ahead of schedule but has really been significantly behind schedule since then and she has been thousands of dollars over budget (we are fortunate to have great insurance so there is minimal effect to us directly). Then it hit me! Carissa is going to be a land developer! My apologies to those of you in that industry...but you know the truth when you hear it. :-)

Carissa needed a platelet transfusion today which is a little disappointing because it reaffirms that the NAIT diagnosis was not a true diagnosis, or at least it is not a complete diagnosis. The good thing is that this is the first transfusion she has had to have in a while, over two weeks. The possibility of her needing a red blood cell transfusion exists but they are trying to see if she can go without and let her try to get her rbc count up on her own. It seems there is a time in each newborn's life where there red blood cell count drops so that it triggers their body, specifically the bone marrow, to start producing the rbc's. They are trying to let that naturally occur in Carissa but their vampiric ways of taking draws might make her have to have some help with rbc's, which will cause her body to hold off on full production, which will make her go down again, which will...do y'all feel like we are on the crazy traffic circle in Waco? I love the Elite Cafe but not enough to get on that circle with people who either are on it for the first time or are on it for the 1000th time and still don't know how to use it.

It was one of the few frustrating days we have had with dealing with the TCH staff. They were supposed to inform us of the transfusion decision but only called one number. When I called in a little later the nurse told me she was on break and never even mentioned that they had tried to contact us earlier. Most of the nurses could have manuals written about them for their incredible people skills and customer service skills. We had the "before" column today. It was not a willing slight, just not a strong suite of today's nurse. It unfortunately happened on a day when things were not as rosey with Carissa. The picture above was taken by Pamela after we had learned that they only tried to contact us on one phone number when all of our numbers are listed clearly on their paperwork. I would talk nicely and sing to Carissa but was not in the mood to deal with adult humanity at that point. I was, however, helpful enough to teach them why you have multiple numbers written onto the spaces for the multiple phone numbers. When that was followed up with Carissa spitting up about 1/2 of her bottle as a result of being jostled and made to cry while two nurses tried to get an IV in for the transfusion within 5 minutes of her eating I was kind enough to teach another class titled "You wouldn't let her go in swimming right after eating, so maybe shaking her and making her cry isn't a great idea either." Realizing I had for only about the second time in the 6 1/2 week challenge broken my goal of being the best family that they could possibly deal with, I spent part of the next few minutes apologizing and trying to convince the staff that Carissa's dad is not pure evil incarnate. I've asked y'all repeatedly to make sure God gets the glory in Carissa's story and that can't happen with me telling it if they think I'm on the oppositional side of God.

Please thank God for Carissa's progress and for that clearly being seen in how her breathing has improved/matured remarkably in the last 10 days.

Please continue to pray that Carissa's entire circulation and blood systems will also mature and she will be able to produce and regulate all the necessary blood components.

Please pray for the doctors and staff to make correct decisions on the tricky balance of treating symptoms, allowing for Carissa to grow into some things, and probing for one or more correct diagnoses.