Our Vida Loca

The last update was a highlight of the craziness that has been our life the last month or so. Joshua has had a lot of tests and a number of doctors appointments and I recently had clinic as well.

At this point there isn't much that they can do for me at clinic. I haven't been sleeping well because of waking up in pain and being unable to move. There have been days where I can not stay awake and haven't been coherent until 2:30p or 3p in the afternoon. We are trying some new drugs to help me sleep better at night (which also helps everyone else sleep better at night). I am on oxygen during the day which has helped increase my energy level and they are going to do an over night pulse oxs test to see if I am getting enough oxygen at night. At this point it's just about trying to make me comfortable and allow Bob to get some sleep. The radiation has not made a significant reduction in my excess saliva so I will likely be going back for radiation on the other side of my mouth as well. I can no longer drive my wheelchair on my own down our block or in the stores. I also need help putting my hand and arm on my wheel chair controls about 70% of the time so I have lost quite a bit of independence.

On to better news...Joshua has been diagnosed with Hirschsprung's disease. That in and of itself is not good news but he has a mild case which will be able to be fixed with one surgery and will not require him to use a colostomy bag (see below for link to more info). He also attended his first swallow clinic at Phoenix Children's Hospital (PCH)last week. His clinic is very similar to mine but obviously addresses his intestinal and feeding issues. He saw a speech therapist and occupational therapist team then the GI doctor and nutritionist met with us and finally they had a Pulminologist on the team meet with him as well. Prior to this clinic Joshua had an x-ray and we met with his ENT who is recommending Joshua's adenoids be removed because they are blocking 83% of his nasal passage way and could be creating his constant runny nose (which may be the cause of his respiratory issues). After meeting with the doctor at the swallow clinic we decided to switch to an ENT within the PCH network that way when Joshua has surgery they can hopefully due it all at once rather than having him have to go under multiple times. Although this sounds like a lot and has been a lot it is the first time we have actually felt hope that he will make real progress when it comes to his eating and digestive issues. After he has completed all the necessary surgeries (again hoping it will all taken care of at one time) then they will schedule him for the swallow clinic which will be three days a week for six weeks, etc. They don't want to start him in the clinic until all his internal issues are resolved so that he can be successful and they can then focus on his feeding issues.

Quick Tana update... she has been busy with her last semester of school and tennis season is underway. Tana has decided that she is going to attend ASU Honors college. She has to select a major and if she is anything like her mother it will change at least four more times but for now she listed it as Civil Engineering. She is still trying to decide whether she wants to live at home or not for the first semester.

Hirschsprungs Disease