New year...new fears

Over the past few weeks we have had a huge problem getting Noah to handle his nightly feeding at his normal rate. We have had to significantly reduce the rate on his feeding pump to the point that he was not finishing all of it at night. We were also noticing at night while he was in a deep sleep that the alarm on his pulse ox machine would go off. His heart rate was jumping to 195.....then it would drop as low as 85. I called Abby, Dr. Swoboda's nurse on Monday and she gave me some possible explanations and solutions. He could be fighting a bug, his stomach may not be emptying as quickly all of the sudden and the list of possibilities goes on. So we dropped the rate down even lower. Tuesday night I quickly discovered the problem. After Lane gave him his bath, I had him on the changing table dressing him and I noticed he kept digging in his ear with his finger. Sure enough when I looked, I saw a very small amount of drainage. So a double ear infection plus four new teeth have been the culprit to our problem. I am thankful we got it figured out and now he is back up to his normal rate at night.

Yesterday, we finally got Noah's wheelchair and AFO's. We were unable to meet with the vendor for the stander again. We are scheduled for that on January 17th.


We took him out and about in his wheelchair for the very first time. As we sat in the waiting room, we watched Noah as he wheeled himself about. I was so excited to see him explore and at the same time it broke my heart a little more. These mixed emotions are so draining..... Will it ever be ok?? Probably not.....After we finished we went to a few stores, it was somewhat hard having strangers stare and ask so many questions...

While I was on the phone with Abby I also asked her about Noah's regression...I asked if maybe it was the added weight that was making it harder for him or if he is just getting worse. Lane and I have noticed he tips over more often while sitting and he has a much harder time pulling himself around. She said that they would like to see him at their next available appointment. So, we will see Dr. Swoboda on January 31st instead of the original scheduled appointment in March. Oh goody....There are a few drugs that have worked in SMA kids that have increased their strength. The risk may be worse than the benefit (everyone reacts a bit differently) but this is something we will discuss and decide at that visit. We will continue our fight......