Thursday, May 28, 2015
Due to circumstances beyond our control, Anna's scheduled jaw reconstruction surgery for June 1st will need to be rescheduled to a later date. And due to the surgeon's schedule and my schedule, it will probably have to wait until early August. I should be hearing from the scheduler either tomorrow or Monday to receive a date.
Over the past week, Anna developed a cold---a nasty virus, similar to what her brother had the previous week. We continued to evaluate her symptoms, hoping that they would all go away in seven days. I also called the surgeon's office on Tuesday to let them know what was going on, and continued to pray for guidance, wisdom, and a definite answer (and not a decision we would be second-guessing later on).
Today we got that definite answer. Anna now has a raging ear infection. (The doctor asked, "Have you ever had an ear infection?" And as we were responding with a 'no,' he exclaimed (as he examined Anna's inner ear), "Well you've got one now, and wow, is it bulging!" By that time (mid-morning) we had already heard that the surgeon thought it best not to proceed with Anna's surgery, given her cold symptoms that I had called about on Tuesday. When we talked about Anna's cancelled surgery with the family doctor, he agreed that there's no way Anna should have surgery now or in the near future. She also has a sinus infection. Anethesia would be difficult and risky with her sinuses being so inflamed.
It's been a tough day. Even though we knew that there was a chance that surgery would be postponed, this is a mental and emotional adjustment for Anna---especially on a day when she has two infections and is feeling just miserable.
The GOOD news is that we saw her ophthalmologist, and her eyes are basically clear. (Such a relief, since Anna has been off Methotrexate for about three weeks now, and cannot resume until she feels significantly better, as per the pediatric rheumatologist.) She's been having increased jaw stiffness and pain, and I let her pediatric rheumatologist know that, as well. Anna is on antibiotics for the next five days.
This change of schedule means that Anna can now take her finals during finals week, and she may very well be able to attend graduation to see her friends receive their diplomas. (She is a junior, and has one more year of school left, but she has many friends who are seniors.)
Sunday, May 24, 2015
We have had many appointments since I last posted on this blog. I've been remembering that one of my main purposes for keeping this blog is for other parents of JA children and teens---providing a glimpse of our lives so that you can have hope for your future, as well, and know that even when challenges come, they do not have to overwhelm you. It's time to update this blog!
Anna will have jaw reconstruction surgery one week from tomorrow: June 1st. The whole process of getting to this point and coming up with the date seemed like a whirlwind at the time. Between our schedule and the surgeon's schedule, plus some upcoming changes in our medical insurance (changing carriers as of July 1st, which for surgeries or other procedures, means days or weeks of jumping through hoops for pre-authorizations), I was praying fervently for guidance and peace and God's direction in scheduling the surgery. When we met with the doctors at the Lancaster Cleft Palate Clinic in April, and we all "laid our cards on the table" as far as scheduling, everything suddenly fell into place for June 1st. This (as in feeling like we're being carried along in a good draft instead of bucking a headwind in our journey) continues to happen as we get all of the other pieces into place. As I pray about complicated situations and details fall into place with an overwhelming sense of peace, I have learned to take that as confirmation that we are going in the right direction.
Since establishing a surgery date, Anna has had several appointments, including a 2+ hour appointment at the Lancaster Cleft Palate Clinic, to get molds done and x-rays taken, and a particular kind of wire inserted through the brackets on her teeth---the wire has little loops between the teeth, which will be necessary for the surgical process, so I understand. I love that the people at Lancaster Cleft Palate Clinic explain a lot of "whys" as they do things. They take all of those molds (one of the most dreaded things for Anna) because the plastic surgeon practices the surgery on the molds before Anna will have the surgery done. (I love that!!! That comforts me---no one will show up to the OR and start cutting into Anna's jaw and say, "Hmmm---wonder what we should do now?!") We had to have a few more x-rays taken before they let us go, because they needed to be just right, with Anna's mouth in just the right position, so that the surgeon can use them to measure and calculate adjustments which will be made.
There was one measuring instrument that really had me thinking. I should have taken a picture of the contraption, because later when I tried to describe the thing to the "Bing" search engine to see if I could find an image, I failed! I knew Anna wouldn't want a photo of them taking the measurements (the procedure of taking this measurement was not attractive, but very necessary). It's difficult to describe---a contraption of metal and plastic pieces. A wax piece went in Anna's mouth as a reference to her bite (as she stood up straight with her back and head against a wall). A plastic piece rested on the bridge of her nose. Two metal rods with earpieces on the ends went into her ears. The orthodontist was explaining why they use this (as he was dictating several measurements to his assistant). He said that since the plastic surgeon is going to be cutting and moving Anna's jaw, he will need a point of reference on Anna's head---and they use the ears and the bridge of the nose, because even as they move the jaw, the bridge of her nose and the position of her ears will not change. They will know how far and where to move her jaw in relation to the location of her ears and the bridge of her nose.
I love analogies, and I see one here---an analogy for life. Life is full of chaos and change. It's just how life is. In the midst of chaos and change---in order to make sense of life and get ourselves through the storms that come, we need a point of reference---a "north pole"---an anchor. Know what I mean? I am SO thankful that we have this, as we know our Creator---we belong to him because of Jesus. And He has given us the Holy Spirit and His Word so that we can walk in truth and know comfort and peace. Do you have a point of reference in the midst of chaos and change?
The past two months have not been without reflection and processing a lot of information and our feelings about it. When we sat in the exam room of the plastic surgeon and the resident was explaining exactly what they are planning to do (using one of the molds of Anna's teeth as a visual), the information seemed a little daunting. When I think about "option 3" and tell people about it, I cringe, and they cringe. When we met with the PA for Anesthesiology, he looked over Anna's health history, asked questions, and commented, "This is serious stuff, here." So, yes. This will not be a walk in the park. Yes---there have been thoughts and emotions to sort through (sometimes it seems like it's been more that way for me than Anna---she seems almost eager to have this done). Anna is also taking a break from medications until mid-June, so in the back of my mind, that's a concern, but there's no going back now---just moving forward. If her joints or eyes flare in the next few weeks, we'll take that and deal with it. What else is there to do?
I've been meditating on a recent quote from Beth Moore, which seems appropriate for the coming week or two:
"Trust God for your current life circumstances and believe that He has called you this day to be courageous." - Beth Moore
So we'll gather up our courage and thank you all for your prayers for us.