It has been a busy end of the week. We had so much fun with my family, it is always sad to see them go.

A few things to report:

1, I got a call on Frid. morning from Children's saying that they had Avery on a list for manometry testing (probes are placed along the gi tract to test how he moves food). First of all we had no idea he was on the list so I was thrown for a loop. This requires Avery to go to the OR and have the probes placed through his feeding tube. Then next day they start hooking him up to testing in which they try formula at a high rate and different medicines to see how his system reacts to them. This will be REALLY tough on him b/c he cannot even tolerate meds. without vomitting let alone feeding at 100cc/hr. So this means that he will vomit like crazy. So the downside is that it will be a really tough test on him. Buuuttt, it may yeild some very useful information. Like will he have the ability to get off the TPN (IV nutrition) and is it even worth it to keep torturing with feeding his gut. He is scheduled Feb. 24th for inpatient. So I am not 100% sold on doing it but Rick and I discussed it at length and think it may be worth it. But Rick will have to be with me during the test b/c it will be horrible to see Avery suffer all day by myself.


Isaiah continues to have a real tough time with retching. He is now doing it almost daily and has very few days that he feels good all day. This is a MAJOR issue and we really need to get to the bottom of things. I am not sure what the cause of it is but he needs to be worked up.

Also labs were done on the boys in the summer and would you believe noone ever called back with the results. So why do they bother even doing testing if they never follow-up. I am so beyond frustrated with the system. I just feel that healthcare has gone so far down the tubes. You have to be a constant advocate for you kids and family and it is exhausting. Anyway, I ask the nurse from the pallative team to look up the labs. and one of Isaiah's was through the roof (norms being below 200 and Isaiah was 1700). OMG. I am fuming. This is an acid that your body cannot break down and Avery also had this show up high last yr. So in my research I found a specific type of mitochondrial disease that has this high methlymalonic acid level. So I emailed the neurologist and she now wants to test the boys for this.

Doesn't it sound like I should be getting paid as a dr. b/c that is what I feel like most of the time.

So needless to say, we alot going on as always. I am hoping that I get alot of things straightened out before my trip. Fingers crossed.