On Feb. 29 we headed to Iowa City for a long day of appointments for Jack. I took the day off work and Jack had to miss his usual Wednesday morning therapy and afternoon preschool. On the agenda:
1. Skull x-rays and appointment with pediatric neurosurgeon Dr. Menezes
2. Eye appointment with pediatric ophthalmologist Dr. Olson
3. Botox appointment in orthopedics with Liz, nurse practitioner
We arrived in Iowa City on time and headed straight up to pedo x-ray. Jack did so well. He makes me very proud when listens to the technician even though I know he is scared. He laid down on the big table, followed all the instructions and was such a brave boy! After the radiographs were made we headed down for a standard 45 minute wait for Dr. Menezes. Chris and I go to these appointments like we are going into battle. IPAD, check; snacks, check; water cups, check; books, check; toys cars and other special small toys, check; suckers for emergency meltdowns, check!! Savvy is usually so good and doesn’t even look up when someone walks into the exam room, she is usually engrossed in whatever we have given her to play with. Dr. Menezes was very pleased to see the progress and growth Jack has made in one year. His skull x-rays are showing some definite growth of the bony islands that remain from the replacement of his bone flap. He showed them to us and it made me feel so hopeful that someday his sweet head will be healed completely! Of course Jack will still require bone grafting in the future, but Dr. Menezes is hopeful it will be a single stage surgery and not require a second phase of rib grafting. He feels strongly that we should continue to wait to see how much more bony growth Jack can accomplish on his own. He doesn’t give us an age, and when I asked for an estimate, he gave me a kind smile, and a response of, “Lets wait and see Mom.” I am assuming that the age 5 or 6 he used to tell us for surgery has now been changed to an age of 7 or 8. It relieves me to think that we will not have to worry about our little preschooler having surgery. If Jack has to have surgery at all I would much rather him have it done when he is 8 vs. 5. Dr. Menezes commented on how wonderful it is that Jack’s facial features have remained symmetrical despite the lack of bone in that area of his skull. He said that the helmet use is very important to maintain facial symmetry.
After we finished in neurosurg we went to ophthalmology and were seen pretty quickly. Dr. Olson was sick so Jack was seen by his colleague, a Dr. he has seen once before. The doctor said that Jack’s eye measurements are stabilizing which means that he is getting closer to surgery. They want to wait until his measurements have been pretty stable over the course of a year so that they have a better chance at success with surgery. Now that Jack is a little bit older, they can test his vision with shapes and pictures. He does such a great job, sitting still, looking at the pictures and lights, and oinking pigs, and responding to their questions. His vision is very good in his right eye, and good in his left eye but not quite as strong. Overall, they say his vision is quite good. The doctors say his retinas look completely normal, no scarring at all from the retinal hemorrhaging which really surprised me. The doctor said if they didn’t know his history they would never be able to tell that he had retinal hemorrhaging. His left retina suffered much more bleeding so they think that may have to do with his slight decreased vision in the left eye. The surgery would be to better align his pupils. Jack has amblyopia (lazy eye) of his left eye due to the fact that when his left eye was so clouded by the bleeding, light could not reach the retina to form an image, so Jack’s right eye took over as his dominant eye. The doctor explained it would be a same day surgery, one that is considered routine for many children. He said Jack would not have post operative pain, just an itching sensation in his eye. They may decide to operate on both if that would give a better esthetic result, or they may operate just on his left eye. He said it is something that would be decided closer to the date of the surgery. I am trying not to worry about it…but whenever I think of Jack going through surgery, I just feel my stomach turn into nervous knots. I ask God to help me trust in the doctors and have faith that the result will be worth the worry and stress, to improve Jack’s quality of life and repair the damage she did that day to his perfect brown eyes.
We left ophthalmology and felt happy that things were going so well. Liz worked us in even sooner that our scheduled appointment. Jack has had botox one other time in his right bicep. The result was good, it just didn’t last as long as we hoped. It helps relax some of the tone in his right arm so he can extend his arm farther and more easily place his hand on his bike handlebar or reach the water to wash his hands. Without the botox it is a real challenge for Jack to overcome the tone of his bicep to extend his arm at the elbow. Jack knew he was going to get some medicine in his arm. He asked me several times, “Mom it hurt my arm a lot? Mom, it hurt my arm for a long time?” I felt terrible that my little boy knew that he was going to feel pain, more pain that other kids don’t have to endure. I reassured him that it would hurt a little, and be over very quickly. He was so brave. When the nurse and nurse practitioner came in with that little tray with the syringe and band-aids he just sat and stared. The first poke he just closed his eyes and squeezed my hand tight, the second poke his face just crumpled and he began to sob. I couldn’t help it…I usually try to be so tough so that Jack can model my behavior, but I cried with him. We recovered quickly, Jack a little faster than I did. Jack picked out his prize, a fabulous noisemaker that gave us all a headache on the way home, and he got two suckers, “one for my sister!” he said. Sure enough, he did give Savvy her sucker as soon as we joined Dad and Savannah in the waiting room. He proudly showed off his band-aids and told Daddy how brave he was. We scheduled follow up appointments and left UIHC feeling very relieved the day was over, and grateful to have not been given bad news.
We stopped at the Coral Ridge Mall for our favorite quick dinner, Chick-Fil-A and a carousel ride. We were hungry and tired. It was wonderful to end our day with happy kids riding on the carousel. Savannah fell asleep right away on the car ride home, and Jack was very good, content to finally get his turn with the IPAD since Savvy had it all day. Chris and I were able to have some nice quiet time to talk and process all the information we had been given. We said prayers of thanks to God for all his blessings and for saving our son in the first place. It was a good day and we were very proud of our little guy.
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