We met with the ENT (ear, nose, and throat) doctor today about Caden’s swallowing functionality. While everyone is pleased with the results of the recent barium swallow, they do not believe he has a functional problem swallowing. He is going through all of the motions correctly, but he seems to only be able to pass very little bits at a time by mouth. The answer from the therapists and the ENT doctor is to retreat his upper esophagus muscle with botox. The ENT went very conservative on the first dose given the fact that Caden was her youngest and most severe case in children ever. The bottom line is that we are moving forward with another botox treatment within the next month.
Praise God, the really good news is that Caden is able to sleep for upwards of 6 to 7 hours without needing suctioning at night now. This is allowing for Sherry to take care of Caden through the night whether I am on travel or not. It will still be rough for her when I travel because she has a very short list of people who can watch Caden and Riley to give her a break when I am not around. The sitter that she used for a good bit of the summer has gone back off to college for the fall as of this week. I am able to get into work at an earlier hour (like normal folks) and not have to work from home in the middle of the night or stay later in the evening. I travel last week and Caden was not quite sleeping through the night without suctioning, but At least Sherry had a little help with from the sitter before she left for college.
I think it is important to add a few notes on the swallowing thing. While Caden is swallowing, it is a very tedious process to get him to do so. It takes upwards of 20-25 minutes to get him to swallow less than a teaspoonful of food. We tie it into his normal feeding time, but we have to stay right with him to make sure he gets it down. It is a very tiring process.
In other news today, we had to take Riley in to the pediatrician. He all of a sudden started limping on his right leg and even falling to a crawl at times. He had played in his room for a little while out of Sherry’s sight but no sounds of falling or crying were ever heard. He just started limping and would not touch anything other than his toes to the floor. We have no clue what caused the limp, and Riley could only tell us where it hurt and not able to answer any of the how, when, where, or what hurt him. I met Sherry at the pediatrician and they were not able to find anything conclusive so they recommended he go for x-rays from the hip to the knee. Nothing came out of the x-rays either. We even asked if he might be faking it due to all the attention Caden is getting from doctors and they said that a two-year old does not fake it like that. I sat him down in the doctor’s office as we checked out and he immediately fell to his knees and started to crawl to the room where the video tape was playing. He did get up part of the way there and limped the remainder of the distance. I had to teach this evening, but Sherry said that he seemed better after some Motrin and rest. We were instructed to just watch him for other symptoms for now and give him some Motrin for pain.
What is it with us? Do we have a big welcome message written on our foreheads for stress? Sherry and I prayed together this morning as we try to do everyday. Today was particularly important because we had a friend request that we pray for their family. We did so and also prayed for our family. The prayers for our friends were answered in that they were able to get an MRI with no sedation today. The results were of the MRI were also pretty clear, but not what they expected for their child’s diagnosis. Many of you got the forwarded email prayer request, I want you to know that your prayers were answered today for our friends.
For us, for some strange reason we are not getting the peace from God that we are asking for in our home. I can not tell you how stressed I got when hearing from Sherry today that Riley was having problems walking. My immediate reaction was, “God, what next?” I am ready for some peace I tell you. I have already had one emotional meltdown in the past three days and I am not sure I will make it a week without another. My work trip last week was only for a few nights, but it was extremely stressful knowing that Sherry was having to run the entire night without me here to assist. At that point Caden was not making it though this night yet without needing suctioning. He ahs cut two new teeth in the past week and that has greatly increased his secretions. His not druling at all. It all goes back and then come back out his nose for some strange reason. That has caused more suctioning in the past week. I got back from my trip and within a few days Sherry and I both had a meltdown over the stress. We talked with some famiy members this weekend who asked how our relationship was holding up. It is holding up mainly because we are able to see that our stress is not with each other, but rather the stressful situations that our family ends up in as a result of our circumstances.
Please keep us in your prayers. With Caden’s lingering heart issues, next botox treatment, Riley’s leg, work stress, finances, and plain old exhaustion, I need a relief and so does Sherry. We don’t want much, just a personal assistant/receptionist to handle Caden’s appointments, a full-time maid, chef, nanny, and a line of qualified care givers for Caden would fix us right up. Oh, and a winning jackpot lottery ticket to pay for all of this. Heck, just the winning lottery ticket would take care of it since I could afford to just stay home and help take the load that Sherry has to endure solo. Maybe our name will pop up in the will of a long lost aunt or uncle who is loaded and thinks that we are the greatest thing since sliced bread. Seriously, please just keep us in our prayers. We don’t have the worst circumstances in the world, but it sure seems like it at moments. We know that we are blessed to have what we do and we are thankful to God for all of it including the odd circumstances that link us up to people that we might not ever meet otherwise.