"C" is for Crunched Cars, Counseling,Cleaning, and Calories

Well my car is finally fixed after being hit on the way to the hospital almost a month ago. I'll get to pick it up tomorrow.   The repair place said they would go after the other guys insurance for the $800 more they owe from what they quoted it would cost. Lesson of the day: big trucks crunch tiny corolla's with ease. Tiny corollas are expensive to fix.

Since posting a while back about needing to get back into counseling as a family and for K, I had several recommendations and leads. Unfortunately, finding one that takes our insurance and deals with our specific needs has been difficult. One of my graduated players moms got me hooked up with a lady who specializes in kids dealing with chronic/terminal/long term illness. Good news is she takes our insurance, bad news is her first available is end of August. But, I took it. I hear she's worth the wait. Praying she is a good fit.

We are enjoying summer and not having too much of a schedule. K doesn't last too long doing anything and really enjoys just being at home with his sis. I was able to get in a surprise movie outing after their dentist appointment the other day and it was fun being together and doing something out.

Still working on fattening K up. Food of choice right now: homemade Mac n cheese, hash browns, vanilla shakes. I make a pan about every other day of Mac n cheese, 2-3 vanilla shakes a day, and at least 1 maybe 2 pans of hash browns a day. At our 1 week post hospital visit K had gained 3.5 pounds on this diet. Hoping he keeps packing the pounds on! 

I have been spring cleaning and organizing. I stumbled upon a box of cards we got after K was diagnosed and some pics of when K was little. It was bittersweet going through all that. So many people we have lost touch with or aren't in our lives anymore. Looking through pics from the last 13 years gave me mixed emotions. Life is so different now.

 I have a huge task in front of me getting caught up on scrapbooking with all the old printed out photos. Hopefully I'll make some headway this summer. 

Volleyball camp next week and then countdown to Cali vacation to see my family begins! 

Here is to a healthy summer!

Off IV's

K is off IV's and summer can begin! Praying we don't have to do them again for a while!
Thanks for praying!

What is best, isn't always easy...

We had a Dr. C appointment today. Today, the whole family came. Normally, it is just K and I because of work schedules and such.
We saw Dr. C pretty timely, which was nice. Sometimes, we have to wait a while. He took a good long time with us and talked some thing through with us. K did a good job of speaking for himself and answering the millions of questions we go through each time regarding how he is feeling.
We got to the part where we were deciding whether or not we were done with IV's. His pft's were pretty low, 54-59% to be exact, so I didn't have too high of hopes. He wanted to go another week and asked K what he thought. Kaleb, being the diplomat that he is, said, how about until Saturday? Saturday is a good day. This literally made all of us, including Dr. C laugh out loud. Saturday it is.
So we are doing 5 more days (20 total) and going through Saturday night. I REALLY wanted to stop today. Really bad. But, that isn't what is best. So, Saturday it is. One of the IV's is on backorder. Yeah, Obamacare! So, we are switching to another one which is the closest to the one he has been on as we can get. The other IV had no problem refilling.
We are still researching and trying to find a counselor for K. The one we used left the state and so we are trying to find one that fits K and our family and can help with chronic/terminal/long term illness and all that entails. The problem is finding one that takes our insurance. I have another lead and I will be calling them tomorrow. The first 3 I have tried from recommendations didn't take either one of our insurances.
We brought up the whole 2 week in the hospital stay. Now that K is older and dealing with depression and adolescence and harder school work, I wanted to know if 2 weeks is a hard and fast rule. Dr. C said that in some circumstances, he will do 1 week at the hospital and 1 week or more at home on IV's. I want that option, I said! He chuckled. Basically, if K is doing well and there are no complications or tests to be run, we might be able to stay just one week. If he isn't doing well or turning around or we are having to test him for levels with certain IV's, or there is something wrong that we don't know what it is, then we will have to stay longer. That gave me a little hope. That was good enough for me. So, I am hoping, that in the very near future, our stays are shorter! There is at least hope for that! He still may not go back to school right away, but being home is so much better for morale, food, sleep, and healing.
Overall, it was a good appointment. He gained 3 1/2 pounds in 1 week which is huge. We have been on "mission gain weight" around here with shakes and anything else he will eat. I was happy that K has stepped into maturity and was able to answer pretty much all the questions without my help. He did a great job. He is growing up so fast! Non CF'ers may not get it, but this is a transition period. Up until now, I have done pretty much everything and answered all the questions, but now that he is older and able, the care is transitioning to him vs. me. It's weird, but good. Independence, responsibility, and ownership of his disease is all a good thing.
I was saddened by more IV's and his pft's as they seem to steadily be dropping but I am hoping that this is not his new baseline, but instead, we will see it go back up to the 60's soon.
I will de-access him Sunday and then our summer can begin! We see Dr. C again before we go to Cali at the end of June.
Thanks for praying!

Thank You

I appreciate the overwhelmingly positive support in response to my last blog. The words seemed to echo what a lot of CF people (parents) feel, but don't know how to put into words. 

It's not pretty, but sometimes, either is life.

Kaleb continues IV's and we see his doc Tuesday. One of the IV's is on back order so it won't be able to continue past our appointment, we will have to see what doc wants to do about the other. We will have gotten 14 days in at that point.

I got a few counselor recommendations from some trusted people for K and our family. We saw someone for a while but she moved, trying to find that right fit for our situation. 

I can't believe that another school year has gone by. I now have a 5th and 7th grader and that just makes me feel old.

Looking forward to being off IVs and then getting our summer started!

Please continue to pray and check back for updates!