Aaron woke up shortly after me Easter morning. I was super excited for his egg hunt. I said "Aaron guess who came overnight. The Easter bunny!" I asked if he was excited. He said yes. I asked if he was ready to see his Easter basket and find the eggs. He said "No Mommy, I am going back to sleep for awhile." What?!?!
I had to go to work and the sitter came to be with Aaron. I told her to do the egg hunt with Aaron. She asked if he was ready to see what the Easter bunny brought. He said "No. I will wait for mommy to come back from work." What?!?!
I wish I had this child's will power. Finally in the afternoon, he opened an egg next to him in bed. There was a little dog in it. Suddenly, he decided he must find all of his eggs. He did wait until I got back from work to look in his basket.
Here is a pre-Easter egg hunt we did two weeks ago.
This past week was overall pretty good. Aaron's sores look as though they may be healing. The dressings use to get soiled and fall off several times a days. They are no longer falling off. Dr. Davies thinks the sores look like they may be less deep than before. He still bleeds from his wounds and soils his clothes in blood at least once a day. Overall, I think he might be getting better which is huge!!!
Aaron's cataract surgery also went well. Aaron could not see anything unless it was about an inch from his face before. The high steroids over the years caused severe clouding of the lenses. He had surgery in his right eye and now he can see much better. We decorated his room and he can see the decorations. We are also able to start doing his sight words again. Aaron wanted to learn about the surgery. After watching two videos on cataract surgery, he explained to the ophthalmologist exactly what he had done to Aaron's eye. The ophthalmologist was pretty impressed.
The not so good... Aaron's line broke at midnight Friday night. He had a new line put in a couple of months ago and it has been terrible from day one. Neither lumen flushes or draws very well at all. The nurse was flushing the line and we heard a pop. My heart stopped for a minute. A broken line is not good. It can be repaired one time and then he will have to have surgery for a whole new line again. Thankfully, at 2am, the line was repaired.
The best part of the week is Aaron. He has had endless energy. I took him to the museum again Saturday. His favorite part of the train display was closed for renovations. He was forced to look at new things. At first, he was not happy. Then he asked to get out of the stroller and began exploring and walked for about forty five minutes up and down steep ramps. We then went back to the hospital. He did not want to get in bed. Rather, he insisted on standing up to eat his dinner and must have stood for another hour.
He has energy that I haven't seen in years. He had an NG tube put in a few weeks ago. The doctors wanted to give him peptamen jr formula. I said no. He drinks Boost Breeze (juice version of Boost) all day long. I didn't see how more artificially derived substances would help. I worked with the nutritionist to find a formula derived from actual food. We found Compleat containing chicken, peas, carrots, tomatoes, and cranberry juice. Prior to this his diet consisted of garlic bread, lactaid milk, boost breeze, and cupcakes and four bites a meal was a considered a success. He gets Comlpeat four times a day.
The last few months have been rough. Aaron has been in and out of the hospital too many times to count. Three blood infections. Two surgeries and a new central line. Many, many fevers. And sores that ooze and bleed and cause a great deal of anxiety and pain. The sores are scary. Either they will heal or they won't. If they don't heal, the outcome is not good. Right now the sores are stable (which means they are bad but not worse). We went on a pass today to the museum and I looked down at Aaron and his shirt is soaked in blood and dripping blood. The slightest touch can cause a new tear and bleeding.
When we got back to the hospital, Aaron did not want to get in bed. He walked all around the room. He was moving pictures around on his wall. Then he turned on Pandora and started dancing. He had his doggies dancing. I told him I had to wash his bloody clothes. He insisted on coming with me and refused to let me carry him at all. The walk from the room to the laundry is outside the unit and a good lenghthed walk. Then he walked the whole way back. He even teased me and purposely went the wrong way. After we got back to the room, he engaged in a full on conversation with the PCA. Anyone who knows Aaron knows that a scream and "go away" is about the best you get from him. Not today. He told the PCA all about his sister, each of his dogs, how he has an appetite from walking and on and on. I am having flash backs to when he was two and ran a mile a day saying "I can't stop! I can't stop!"
Aaron's little body is so broken and worn yet he perseveres like no other. He speaks his mind wether you like it or not and is stubborn as hell. God made this child strong. Just when I started to lose hope, Aaron renewed my strength.
