How Is She?

How is she?  That's the big question that everyone is asking!  I am so sorry that I have failed to update on a regular basis, but life gets crazy when school starts.  I am probably my busiest the first month and the last month of school.  We have been back in school since July 27th.  Macy is in 5th grade, and McKenna is in 1st grade.  They both have fabulous teachers this year, and we are excited about the school year!  Getting back into the swing of things has proven to be a little bit more of a challenge this year following surgery.  We are dealing with Macy's school restrictions, and home restrictions due to being on Coumadin.  We are busy with lab draws at Riley, and soccer for McKenna.  Insurance is driving us crazy by sending us bills that were incorrectly coded, therefore they are trying to charge us thousands of dollars.  I like to refer to our family as "The Crazies" instead of "The VanVleets".

So Macy's limitations at school have to do with PE class and recess.  She feels a little left out during both of those times, but we can't take our chances.  It's not like she is on a small dose of Coumadin, she is dosed at a therapeutic level, and her INR goal is to be between 2-3.  Most recently she was running 2.9. If her next INR is in range, they will allow us to go for 1 month until our next check.  We go back in October to see Dr. Superina.  We will have some labs and testing done at that appointment.  Originally they wanted her to stay on the Coumadin until November, but we are praying all tests are good and he allows us to stop in October.

Also when starting back to school, we noticed that Macy lost some weight.  It was about 2 lbs.  2lbs may not seem like much to most people, but when your 10 year old weighs 47 lbs, 2 lbs is a big deal.  This worried me, and has worried me for weeks now.  I can't seem to get her to gain any weight.  I honestly thought that this surgery would help, and I am praying that the body is still trying to figure out the changes.  I pray the weight will come! Please pray for that as well. Right when I saw the weight loss, and I decided to start packing her lunch.  This helps with eat time, as well as food choices that Macy enjoys. 

Two weeks ago we went to a visit with my "go to guy", Dr. Hainline (our metabolism doctor).  Her weight was a big concern for me.  Under the recommendation of our nutritionist, we have also made some changes concerning her diet.  She now gets 3 snacks, and 3 meals a day.  We often follow this plan in the summer, but when school rolls around, it is difficult to follow this plan.  Well, we don't have a choice now.  Macy gets a morning snack during class now, and we have been so blessed that her teacher is completely understanding and helpful with Macy's needs.  After school once she arrives back in my classroom, she stops by the staff fridge and grabs a fruit/veggie smoothie for her afternoon snack.  It has been an adjustment, but we are happy that we are making it work.

When seeing Dr. Hainline, he decided he wanted to run more labs on Macy.  He was not only checking some of his typical things, but he is also exploring the idea that Macy has a malabsorption issue going on.  We explored this idea a few years ago, but insurance wouldn't cover the drinks she needed.  From the pharmacy, her drinks were $230 per case (24 cans).  She was drinking 3 cans a day, so a case only lasts 8 days.  We were buying them at a discounted rate, but it was still costing us hundreds of dollars per month.  I felt like she was gaining weight on them, but we stopped when endocrinology suggested an alternative.  I am just waiting for him to want to start us on those again.  However, she had her labs done last Wednesday, and we haven't heard anything back about them yet.

I honestly don't know sometimes what to do with Macy, and I constantly worry that I am making the wrong choices for her.  I also sometimes feel that we have too many hands in the pot, and no one really knows her well enough to see her as a whole.  I can see her as a whole, but I have no medical training to brainstorm ideas about what she truly needs.  It's worrisome and frustrating all in one.

Anyway, we are doing pretty good.  We have one more weekend at the lake house, and then it truly starts to feel like fall.  I can't wait for fall!  We have a lot of fun stuff coming up in fall.  Our trip to Chicago will try to include some fun in the city, as well as a detour on the way home to Purdue University for a college football game.  My cousin is getting married in November in California.  Both girls are in the wedding, and beyond excited!  We will be spending an entire week there.  We can't wait to go to Harry Potter 'sWorld at Universal Studios, and Hollywood! Thanks for all your continued prayers!  We have a fellow Abernethy friend in Chicago now, recovering from her surgery, and one heading in October.  So please pray for these families as well.