Sunday, December 20, 2009

Hoping for Better News in 2010 . . . .

. . . because appointments to the ophthalmologist these past several months (since August, I believe) have not been encouraging. (The one bright spot about the frequency of those visits, though, is that the ophthalmologist hired a new receptionist and she is so sweet and personable, and treats us like family instead of some of the former receptionists who acted as if we were strangers every time we went--even when we were going every two weeks!)

ANYway . . . back to the report. Anna's eyes still are no better. In fact, the left eye is worse than it was a month ago. Last month, it had 1+ inflammation (on a scale of 0-4), and this month, the level of inflammation is at 2+. The right eye continues to have a trace--after being totally clear for many months before stopping two immune suppressant medications and starting on the biologic, Humira. [Sigh]

So what do we do now? We're increasing the frequency of the Humira injections. I'll give it every ten days instead of every two weeks. (I had just put the next sticker on the calendar, so I'll have to change that.) We get her eyes checked in three weeks.

As for the TMJs---we don't know how successful the cortisone injections were, and we won't truly know without an MRI. The plan is to have an MRI done in about six months, and if there is still evidence (or evidence once again) of active disease, we would have the injections done again.

Merry Christmas to all! I can say that in all sincerity, despite all the issues of life we face. A favorite songwriter, Steven Curtis Chapman, has a Christmas song that talks about "Our God is With Us--Immanuel . . . and we will never face life alone, now that God has made Himself known as Father and friend, with us to the end, Immanuel" (Makes me want to listen to that again, soon!) I truly believe that, and I believe that ALL things work together for good to those who love Him . . ."

Saturday, December 12, 2009

In Anna's Words . . . . to family and friends . . .

Yesterday Anna had bilateral injections (cortisone) to both TMJs. I know that so many people were praying for and thinking of Anna yesterday, and I know those thoughts and prayers helped Anna to be so calm all afternoon, even when the Hospital Admissions people weren't exactly sure where to send us, and even though we got lost on the second floor corridor of the medical center and none of the very nice people we encountered really knew where we were supposed to go (even though we had a map with our destination circled). And then the patient transport person initially couldn't find us to take us down to the ground floor . . . (Anna got to see almost all of a Hallmark Christmas movie on television while we were waiting--cute little tv's in the Pre-Op rooms.) All's well that ends well.

Once we finally returned home, Anna wanted to send out an e-mail to the family members and friends I correspond with on a weekly basis. When I read her e-mail, I thought that many of you might like to hear from Anna, as well:

Hello all,
I thank you all for your prayers and thoughts. I'm fine right now. Nothing went wrong. I feel normal and full of energy. Mom made spaghetti for dinner and that really helped!!! I was really hungry during and afterwards. The docs. and nurses were very nice and great. Though my mouth will be sore for a day or two. And I have to be careful about what i eat. Thank you one and all very much again for your love and support.

---Anna Zeigler

Sunday, December 06, 2009

New Developments Since My Last Post

The past six weeks, besides being super busy, have also brought many new developments with Anna. She had an MRI on October 30th, to see if she may have arthritis in her jaw joints. The results came back, indicating past disease on the left and definite active disease on the right. We had a choice between waiting for a bit to see if the addition of Humira would take care of the active disease or scheduling an injection in the right jaw joint, where the active arthritis is present. We have doctor's appointments (both ophthalmologist and rheumatologist) scheduled on December 18th, so we decided to wait until then to make a decision about the injection. However, since that time, Anna started telling me about different things going on with her jaw. There is no pain for her, but her jaw has been doing some "weird" things according to Anna. Like, when she chews, it shifts to the side sometimes. So after a few e-mails back and forth between the rheumatologist and his staff, they worked to get a jaw injection scheduled sooner rather than later. I will call the radiologist's office tomorrow morning to confirm an appointment on Friday (December 11th) for an injection.

There's too much going on in life to really sit down and figure out how I feel about all of this. For right now, I feel "in my bones" that this is what needs to be done, and there are many times in life where you do what needs to be done regardless of your feelings about it all. I do, however, feel that in some small way, the jaw involvement is a confirmation of the "Humira step" being the right direction (I really did second guess that decision for at least a week!). The results of the MRI mean that the Methotrexate and Cyclosporine (and then Cellcept) were not enough to control the inflammation in Anna's body.

But now I need feedback from those who have experience with the jaw injections. Anna will be going on an all-day outing the day following the injection. I will not be there. (She's going to be with the church youth group and my friend--and youth leader--, Nancy.) For those of you who have "been there, done that" with your kids. What should I expect? Soft foods for 24-48 hours? I have absolutely NO experience with cortisone injections. I'm not afraid of them for Anna---just wondering what our expectations should be. I can ask tomorrow when I call to confirm the appointment, but I think the advice and feedback from veteran moms adds a valuable perspective. Thanks in advance for your insight!

(The pictures at the left are from Anna's "Turkey Trot" at the school in November. Her brother, Joel (an experienced long distance runner), came along to cheer on (yell at!--in a good way) all of the runners, and a friend took two pictures of Anna and Joel together.