Yesterday was the first of a string of weekly doctor appointments. It started with the eye doctor. I don't know if we have posted how much Shannon repeatedly expressed her "hatred" of the hospital, most all the doctors and most all the nurses. It was a topic that there was lots of preserveration on. She swore she would never return to that hospital and if the doctors wanted to see her, they would have to come here. So we had quite a bit of concern how all these doctor appointments were going to go. We had told Shannon that the eye doctor was at the Moran Eye Clinic. But when we got 1/2 mile away from the hospital we clarified that it was the Moran Eye Clinic but it was on the 3rd floor of Primary Childrens Hospital. We explained that she was on the 2nd floor and we wouldn't go there. When we promised that to her, she was willing to go. We were smart enough however, to go in the south end of the hospital which is opposite of where she went in and out of. So we made it to the eye appointment.
The eye doctor was pleased with how her eyes were looking. The cornea in her right eye, he said looked fantastic! The left eye did not have any signs of abrasions left although it did show signs of dryness. So we are to continue with the drops and ointment 4 times a day and taping the left eye shut every night in order to keep it very moist for the time being. We are to return in a month....the week after we have completed the first round of doctor visits!
Afte the appointment Udell asked Shannon if she wanted to see if Dr. Maloney was in his office. His office is on the 3rd floor but towards the other end of the building. She actually said yes! He wasn't in his office so we left him and note and thought we were leaving. But Shannon said, let's see if Dr. Walker is in. His office is on the 1st floor. So we started in that direction and Udell casually said, "do you want to just check and see if Whitney is working today?" To our great surprise, she said yes so long as we promised not to put her in one of "those rooms" again! We gladly promised that--we don't want to go back there either! So we went to the second floor right across from her old room and she (fortunately) found that Whitney was working. She gave her a big hug and talked to her for a few minutes. Several other nurses and therapists that knew her said hi and told her how good she looked and were so glad she had stopped by. Then we checked on Dr. Walker and of course, he wasn't in his office either. So we headed for home.
The drive up to Salt Lake and back is exhausting for Shannon. She slept most of the way up there and most of the way back. We wondered how in the world the insurance company could ever think that she could commute and have effective therapies at this stage of the game! Yes, we still have to fight with them. Some say that it is going to always be a weekly deal. I wonder if they have a clue what kind of stress they are adding to the family because they won't follow the medical doctors instructions for therapy??
The next part of the day was part of the bad news. We had a case conference where all the therapists and clinic coordinator get together with us and review the past goals and set new goals. Because we had to talk about Shannon's deficits, she couldn't deal with it. It wasn't handled by the coordinator as well as it could have been for Shannon didn't really understand what the purpose was for. She got pretty upset and mad. She really has not yet come to the point where she can accept her deficits. She still thinks she should be able to go rollerblading and go for a drive in the car. The rollerblading is a real big challenge because she says she can rollerblade better than she can walk. It's hard to see her get so upset and yet, we see the wisdom in the doctor saying no rollerblading. We see it when she goes to get in the car and dives in head first instead of getting in as we all do. We see it when she is walking, bends over to pull up her sock and falls over. We see it when she gets so tired so easily and needs more sleep. We see it in her impulsivity when she jumps out of her chair so fast that it nearly tips her over. We see it demands that people come visit at a certain time on a certain day. We see it when she hugs people too much and for too long. We see it when she gets angry over someone not being here when she thinks they should be. We see it when she is continuously scratching everywhere, especially on her head. We see it when she makes inappropriate comments in mixed company. We see it as she tries to manipulate us and we see it when she lies to us. We see it when she refuses to eat. And it all comes for the TBI. These things are not Shannon. These are all part of the symptoms of a TBI that is in the recovery process. Not one doctor, nurse, therapist, not anyone that has worked with people with TBIs have ever given us a timeline. The answer is always, "I don't know, it is different for every person." So I think that this is all part of the lesson that we are to learn; patience. What did we say in the beginning?? Miraculous doesn't mean instanteously. We continue to see miracles along the way and they help to sustain us when we remember to rely on them. Now that Shan is at home, many of the readers of this blog have lost interest and that's ok because ultimately, the blog is for our own history. But for those that are still with us, as Shannon says, "don't stop praying for me cause I still need it!"
We are finding that just because you are in the middle of a trial doesn't make you exempt from more trials. We have had some interesting challenges while Shannon was in the hospital like the boiler going out, the AC not working and needing to buy a new unit, the siding on the house blowing off, etc. Today we had an added challenge that is much more difficult than any of those. We got a call around 3 pm today that Annika, our 28 year old daughter with Rett Syndrome had fallen and they were taken her to the emergency room. So far we have 4 stitches in her chin, 5 stitches on the outside of her lip and 5-6 stitches on the inside of her mouth, one tooth completely broken out and the other front top tooth is shot. Her jaw is broken although not displaced and she has a bunch of abrasions. They took a CT scan, xray of her elbow, chest and consulted with an oral surgeon. They had to sedate her for the stitches because it was impossible to numb her mouth because of her disabilities. They gave her antibiotics through an IV and have left the IV in because we are to go to the oral surgeon tomorrow at noon without her having eaten anything for 8 hours. So it sounds like the surgeon may very well do something about the jaw and/or the teeth tomorrow. So as if you haven't already prayed for our family enough, we are asking for more prayers again.
I think I will take an aspirin and go to bed.