Caden continues to do well at home. He is gaining weight. YEAH!!! He last weighed in at 7lbs 7ozs on 1-12-05. That was a 6oz gain in one week. Caden is now getting mostly Mom’s milk. We initially started him on Mom’s milk at 100% strength back on 1-8-04. Caden was really fussy the next day and continued to be fussy until we went back to a formula. We talked to Caden’s pediatrician. She told us that we should have eased him off of the formula instead of going cold turkey. I guess we got too excited about freeing up freezer space. We have since worked Caden up to about 75% Mom’s milk and 25% formula. We should get him up to 100% Mom’s milk by the end of this coming weekend. Well, it will be fortified with a teaspoon of powdered formula per 3oz of Mom’s milk. He seems to be tolerating the slow transition just fine.
We have continued to “try” to move towards normal everyday life. I am now getting up and going to work like a normal human. Sherry is trying her best to get through the days alone with these guys. Riley is wonderful on most days and other days he shows stereotypical 27 month old colors. These are the days when Sherry is greatly relieved to see me come through the door. Caden is still fairly high maintenance. Caden is still not swallowing anything as far as we can tell. This means that he gets gagged on his own secretions after a while if he is not suctioned out. This does not sound like too big of a deal, but you just don’t realize how much you swallow without thinking about the process. Anyway, this makes for a pretty busy day of just making sure Caden’s airway is kept clear of liquids from secretions and reflux. Even though he does not swallow, he does still reflux or spit up as most folks call it. The short of the story is that Sherry is having a tough time on some days. It is hard to explain the complexity of it. I stayed home on Saturday with Caden while Sherry, Grandma, and Grandpa went to the park with Riley to play in the snow. Yes…We had snow in Charleston, SC this past weekend. Well, it was man-made for an annual winter festival that is put on for kids to experience snow in a town that almost never sees enough snow in a year to make a snowball out of. This was not Riley’s first experience with snow since he a Sherry went to Colorado with me last April. Anyway, my experience alone with Caden all day gave me appreciation for how much different Caden’s needs are compared to Riley’s at that same age a little over two years ago.
We continue to pray for Caden to get the ability to swallow just a little bit. This small task will bring so much peace to our home. Caden will be able to rest without becoming uncomfortable due to the gagging and the suction required to clear him up. No one should have to endure what he has to go through. I wish I knew what to do for him. There is very little research on dysphasia in infants. Most kids grow out of the problem before data can be gathered on their condition and how to treat it. I hope and pray that the same holds true for Caden. Please join us in praying for Caden to get is complete swallow reflexes. Your prayers are answered. I have shared only a few of the stories of answered prayers and miracles that we have witnessed first hand in recent months.
I hope you don’t take the previous paragraph to be too gloomy. Caden is doing better today than he has even done. There are a lot of times when you would not have a clue that this little boy had been through open heart surgery or had any of these digestive problems. He has a way of captivating your attention and making you forget about anything but the joy that he spreads through his smile and gestures. He is a wonderful little boy. A pastor at church asked me on Sunday where I got this little boy and where he could get one. I told him that God gave me Caden and all he had to do was pray and ask God to give him one. 😉
I will try to get an update out a little more often. I have been asked to continue the updates and pictures. I have posted a few pictures. I hope you enjoy them.