A tough day

Since Aaron had a long day we weren't able to get his morning run in. He had a full eye exam with dilation. Two hours later, we met with the doctor. She was excellent but only brought bad news. Aaron's eye surgery was not successful in correcting Aaron's lazy eye and he will unlikely ever have depth perception. The doctor said he won't be able to be a pilot like his daddy and grandfather. I remember my father telling me a story about how he was told he could never pilot an airplane due to his vision, but he went on to become an F4 pilot in the air force and a pilot for Southwest Airlines (the best airline in the industry). We believe Aaron will be able to do whatever his heart desires.

By this time, Aaron missed his nap and his lunch. He was miserable. We had a meeting with the BMT doctor to go over the consent forms and timeline. This was our chance to get any questions answered. Aaron threw his first full-blown tantrum the entire time. He kept screaming "I want to run." The meeting didn't go well but we believe we are aware of the risks and benefits of the transplant.

2nd Week of Testing

The second week just flew by. Monday we had more labs taken as well as stool and urine tests. Everything came back pretty good. He may have a virus in his stool called adenovirus. This is a very serious virus. However, the doctor assures us that it is found in almost everyone's stool and that they will follow it very closely.

Tuesday, Aaron had his biggest procedure yet. He was put under anesthesia. He had a bone marrow biopsy to check his bone marrow for any additional problems. He then had a bronchoscopy. The doctors looked at his anatomy and took samples of pulmonary fluid. They found a couple of nodules near his larynx. This explains the funny sounds he makes periodically. They were caused from when he was previously intubated.

Wednesday, Aaron had his infusion.

All the test results continue to be really good. Now we just wait to be admitted on December 20th.

All You Can Eat Chocolate Cake

Good news for Aaron. We met with the dietician today. We explained the issues we have had getting Aaron to eat. She said to let him eat whatever he wants. He can eat all the chocolate cake and cookies he wants. We need to keep him wanting to eat. During transplant, the patients often lose their desire to eat. After he recovers from the transplant, the dietician will work with us to get him back on a healthy eating plan.

Improv Show

There is ALWAYS something going on at the Ronald McDonald House. Unfortunately, we cannot attend most events because Aaron would be exposed to other people. We love that the theater is located downstairs with a view just outside our room. Tonight was an improv show by a couple of goofy guys. They would ask a 3 year old several questions and use her responses to make up a totally wacky skit. Again, I enjoyed it. Aaron just watched trains on my phone.

Clown visit

We were able to watch the clown show from upstairs. There is a theater downstairs. Aaron was more interested in watching trains on my phone than the clowns, but I enjoyed it!

The Rest of the First Week

The week has not let up any. In fact, I don't think I remember most of it. My goal is just to get Aaron to each appointment on time and I feel like we have succeeded!!!

Tuesday... Aaron had a PICC line placed. This allows blood samples to be taken without poking Aaron. He fussed a little bit, but got through it pretty well. We spent time with the home health nurse learning how to take care of the PICC line. We have to inject heparin twice a day to keep it from clogging or getting infected.

Wednesday... We had a visit from home health at 8:30am. We went to cardiology at 9:30am for an echocardiogram and EKG. These are usually done under sedation for this age group. However, they said Aaron is the easiest kid they have ever seen and decided he can handle it. He laid still the whole time watching Micky Mouse Clubhouse and didn't make a sound. Later, Aaron had more labs taken.

Thursday... Aaron had a CT scan of his whole body. Again, they were supposed to but him under anesthesia. Aaron sat still the whole time and did not have to be put under sedation. We are so proud of him.

Friday... Aaron had to do a 4 hour test of his kidneys called a GFR.

By the end of the week, most of the results came in and they told us that Aaron's results are the best they have ever seen in a pretransplant work up. Thank you Lord!!!

Christmas train

Aaron begs to go downstairs many times a day to see James (the train) go around the Christmas town train track.

Location:Erkenbrecher Ave,Cincinnati,United States