Catch Up

It's been a long time since I've updated. Things have been really busy the last couple weeks. Mostly just our regular busy schedule but with some news which I will try to catch you up on now.

We continue to increase the volume of blenderized food Caden is getting through his g-tube. At this point, he is getting more than 2/3 of his volume from real food. The only formula he gets is at night and we are slowing reducing that as we are able to give him more food during the day. He continues to thrive on real food! His gross and fine motor skills and his cognitive ability have all improved drastically! In addition, he feels better overall and is retching less. What a huge blessing for him and all of us.

We also followed up with Caden's gastroenterologist. This was the first time we had seen her since we started Caden on the blenderized diet. I hadn't talked to her or to her dietitian about it beforehand. I was really nervous about how they would respond. I thought they would be more pessimistic about it and try to discourage me from doing it. I was pleasantly surprised by their reaction. I think they realized we were serious about it and that we were concerned about making sure he was getting the proper nutrition. I was really happy they are willing to support us in this process.

We had a follow-up appointment with the neurologist on February 18. It was a good meeting and left me feeling very positive. In his observations and exam of Caden, he said he was quite optimistic in how Caden was progressing. When I pressed him to see if there was anything in particular that concerned him, he said there were a couple minor things but he wasn't going to tell me what they were. He said that the things he saw didn't add up to any particular problem so he said there was really no point in mentioning them because he thought they were going to “move toward normal.” I thought that was encouraging.

On February 19, we were finally able to get Caden's 1-year photos taken. We really wanted outdoor photos and originally had them scheduled for January 8 (the day before his birthday), but due to freezing cold, wet weather, we had to cancel them. So on the 19th, the weather cooperated and Greg and I were both available as well as our wonderful photographer! We got some of the most amazing photos that we will treasure forever! Here are a very few of them...














Then, on February 24, we had a home health nurse start working for us. She works 5 days/week, 8 hours/day and helps take care of Caden. I'm almost embarrassed to mention this because it seems a little over the top. I really don't need THAT much help but I am very happy to have some help. But, the way things work with the nursing care is that it is almost impossible to find nurses that want to work less than full time. So we either had to choose to have a full time nurse or not have one at all.

The nurse is a very sweet, caring person who loves children. She really seems to love Caden which I appreciate. It is just an adjustment for me to get used to having someone in my home ALL the time. I don't have a very big house! But the best part about having her here is that it allows me to get out with Kyler to do things. Caden is able to stay home and stay healthy. It also makes it easier to go to the store and run errands. These were things I had to wait to do until Greg was home from work. The nurse makes this so much easier! She comes to all his doctor and therapy appointments and is able to do his therapy “homework” with him more often than I had the time to do. It should really help him progress more quickly!

On February 26, we had a follow up appointment with Caden's pulmonologist. He didn't have too much to say but he said to discontinue all oxygen at night. For those that might not remember, we were given oxygen to use for Caden at night following his hospitalization in October for respiratory distress. The doctors wanted to make sure we had it at home for the rest of cold/flu season in order to keep him healthy. He was on a VERY low rate and was definitely not dependent on it but it did seem to help him breathe easier and he has remained very healthy. But in the last few weeks, Caden had started to fight us so hard when we put the nasal cannula on him, that we decided to stop. He has had so much negative touch in his life and we didn't want to continue contributing to that. So, the doctor telling us to discontinue was more of a formality.

Today, Caden had his next (and possibly last) Synagis shot of the season. This helps prevent him from getting the RSV virus. He has been getting these every month since November. They told me today they thought this would be the last shot. They do testing to see how prevalent it is in our community and if they don't find much, they stop doing the shots. For now they said to plan on not having another one. If that changes, they will call us and let us know. It would be great if he doesn't have to get anymore shots but I would rather him have the shot than have him get RSV. So we will see.

Tomorrow is a VERY big day for our family. March 6 is the 1-year anniversary of the day Caden was discharged from Lucile Packard Children's Hospital at Stanford. What an incredible day to celebrate! So, we have chosen this day to dedicate Caden to God at our church. I will post more details about it later.

For now, I think that catches me up. Sorry if this post was all over the place!