Updates

It is hard to say that an infection of c. diff is a good thing, but in Chase's case I would have to call it a blessing. The treatment that he took to get rid of the infection helped him tremendously. While on the medication he ate well and had an amazing appetite. While his good appetite has diminished a bit now, the benefits from the medication to his intestines are still apparent. He seems to be very comfortable and we have hardly seen any blood in the last several weeks. He is also sleeping better, awake only every 3 hours at night and taking a good 3 to 4 hour nap every day.

Thankfully we were able to get some answers as to why he has so much trouble swallowing and why the act of eating is so uncomfortable for him. His OT has worked diligently with him since last summer to teach him that eating is ok. It took us months to get teach him to sit in the high chair and he has shown great progress in his willingness to eat, but his ability to swallow without gagging and to be comfortable while eating somewhat stalled.

The OT ordered a swallow study for Chase and the results showed why. His tongue only moves in the up and down motion which only allows him to pack foods flat in his mouth. He doesn't seem to know how to use his back teeth to grind food and only uses his teeth to bite down without any rotary motions. During the study, he aspirated the liquid and it is presumed with the way he swallows he aspirates the solids too. The doctor did say that Chase has learned to re-clear his airway for the most part, which is why he has not ended up with recurring respiratory infections. His diet has been regressed back to only mashed or aerated foods and liquids can only be through a straw.

It was very hard for me to see this study as I watched on x-ray image how difficult it is for his little body to try and do something that is so easy for most people. At the same time it was such a wonderful blessing.  It allowed me to completely understand what was happening...it all finally made sense! When we left after the procedure, I felt a great sense of empowerment to help Chase. Finally, we had a good solid answer to what was happening and ways to teach him to do better. I can easily compare this experience to my walk as a Christian. Before accepting Christ as my Lord, I had a hard time understanding this life on earth. But since accepting him everything makes sense. I am empowered as a Christian to follow the teachings of God's Holy Word and tell others about Jesus. God leaves no questions unanswered for this journey. His timing is perfect and His love is forever!

A couple of weeks ago, Chase had a speech evaluation and qualified for speech therapy. He has great understanding of what we are saying to him, he just has trouble vocalizing it back to us. They did do another hearing test which he passed - such a blessing! So, we are going to be doing some more signing with him and work on his overall oral motor skills. I am sure he is going to start talking soon and not stop. Then we will be wondering why we ever though we had to "teach" him to talk :).

He has continued to have his spells of dizziness, visual disturbances and watering eyes. His blood pressure has remained elevated as well. I mentioned in previous posts the need for him to start systemic steroid treatment for his colitis. We just didn't feel this was the best treatment plan without first treating his other symptoms as his colitis seems to be in some sort of remission for now. We contacted one of his doctors who agreed. This week he had a visit with his nephrologist, another kidney ultrasound and some more blood work. They really have no answers for us at this point, but we feel they are being very thorough and if there are answers, they will find them. We should know a little more at our follow-up appointment in 4 to 6 weeks.