Updates and Changes

Andrew's appointments went well a few weeks ago.  We really had to work to get both appointments on the same day, so Sam ended up going with us; and we left very very early.  We had a hard time keeping his (Sam's) blood sugar in normal ranges as he would not eat breakfast - so unlike him!  He would not eat until after lunchtime.  But he finally straightened out and was a little bit droopy for the first half of the day. 

Andrew's pulmonologist is the best.  We saw him at a new location, and we found it pretty easily without a GPS.  I am probably the person who needs one the most, but the verbal directions from their office were great!  Dr.Black went over EVERYTHING with us.  He even told Andrew how to tolerate all of the antibiotics better and put things in his notes that other doctors probably thought but never shared.  Some of those things actually helped me feel better about "possibilities" lurking in the back of my thoughts.  Thinking hard on Andrew's illnesses can be helpful at times, but it can also wear me out.  Anyway, he was very happy with how he is; and he will check on him again in December right before Christmas.

Our next appointment was good.  At the immunologist.  Things seemed a little off kilter at the office, and we could not get labs due to the timing of the appointment (but they had changed it - not us!).  The doctor was kind and checked over everything (we took labs and office visit notes to both docs), and he knew what he was looking for.  The only bad thing I picked up on was that he no longer talks about when Andrew can maybe try going off the infusions.  He told me about a shot that was trying to get FDA approval.  I hate that he can possibly be tied to this for the rest of his life.  It's not just the drug or having to do it - but it's the cost hanging over his head.  Even though this is rare, insurance coverage can be horrible.  It is scary.  And all of the new stuff scares me because of trouble they have caused before.  Comments from an insurance employee like "He needs to get a new drug or a new insurance policy" are very scary to me.  It makes me mad, but I have been trying up until the next dose time to get meds so Andrew will not have seizures or something.  Fortunately, his drug company covers what insurance does not.  I know God has made this way for us to get him this one medicine.  And I should keep on trusting Him.  I just cannot help but worry what will happen if that help is no longer available.  I do not want him to die from pneumonia or a seizure because of an insurance company.  Those thoughts do lurk in the back of my mind too.  And I constantly have to pray about those worries.

The immunologist asked if I thought Andrew was better, worse, or about the same (like an eye doctor!).  I told him that he seems okay,  no worse, but I was concerned because of all of the respiratory infections he has had on the infusions.  I just now remembered that I do not have his latest numbers on his levels because they did not call me!  I will have to check on that on Monday!

Sam's endocrine appointment went well on Monday.  His a1c was up just a little bit, but we had already changed his Lantus dose (24 hour insulin) and ratios; and that has helped.  But he has had some low lows in the past few weeks, which is unlike him.  I hope he settles in well at school that starts on Monday.  It's scary to send him if I think he may be low.  He keeps going, so it's hard to catch.  And once he feels badly enough, he gets past the point of telling anyone.  That is just how bad it can make you feel.  I have already prayed that his teachers and others around him will be able to tune into how he does.

I think this is enough updates for one post!  I have more.  College, high school, and elementary school start this week.  I have been getting stuff ready for everyone and going to meetings, and not getting much accomplished at some of those meetings, etc.  I think I need to write a post about how parents feel and need to be treated sometimes!  I also had a big meeting about 911 calls that I probably should not share about.  But I can ask that people pray if I have to call 911 that I will get someone who will tune in and do their best to help me with whatever the situation is.

We appreciate those who pray for us.  We know the prayers are going up, and we can feel them.  And no matter how frustrated, scared, or even angry I get being a mother, I know God loves my children so much more than I ever could.  And I have to remind myself to keep that perspective when I walk through the difficult days.  No reason to make things harder, but I tend to!  Thanks!

P.S.  Andrew was 4th in The Bear out of over 800 runners!  And Will got 11th on his first trip up the mountain with a great time!!!