One thing I have definitely had to learn over these past 5 months is RESPONSIBILITY. I know by having children, it is natural (for most parents) to develop this habit. However, I never thought I would have to make this my expertise. I have learned to use make myself use planners, calendars, alarms, etc. After I had Kannon, and eventually was able to walk again, one of the first things I did was find the hospital gift shop. I searched for the cutest journal and I bought it. If I remember right, it was about $20 or so...and it was right then that I learned responsibility wasn't cheap either. I used that journal to write down any questions or concerns that I had to ask the nurse practitioner in the NICU. She must have thought I was crazy because I didn't have that journal 15 minutes and I already had about 50 things written down. But she didn't think I was crazy. She actually thought the exact opposite. She loved it and encouraged me to keep writing everything down. By the way that nurse's name is embedded into my memory FOREVER. She was fantastic. She sat down with me and listened to everything I had written. She even took notes! The next day she came to Kannon's room and had all my questions answered, information printed off, medical records copied, upcoming dr's appointments scheduled, and anything else you could imagine. She was AMAZING at her job. Anyway, needless to say that after twelve doctors/therapists later I would be at a loss for words if it weren't for that $20 journal. Which brings me to my update on Kannon (this will be a LONG post, so feel free to take an intermission)...let's start from the beginning. Last week Kannon's pediatrician told my husband and I to start collecting diapers so she could run various stool tests to be sure nothing was going on that we were unaware of (since he was having blood in his diapers). So the Dr. told us to collect every poopy diaper from Friday all the way through the weekend, and to drop them off at the peds office on Monday. So after school I drove up there to drop them off. On tuesday afternoon, I received a phone call from the peds nurse saying that the diapers weren't good, and that they couldn't get enough stool to fill the specimens and do the tests. So she asked if I could come up there and she would give me the specimen cups (there are 8) and we would have fill them ourselves then bring them back to the office. So Zach, Kannon, and I all drive up there on Tuesday to pick up the cups and to get instructions on what to do with each one. While we are there, we think to ask the peds nurse a few questions that we had about Kannon. The first one I brought up was that we noticed that the left side of Kannon's chest was significantly higher than his right side & that the right side of his back was more prominent than the left. So I asked if that could possibly be scoliosis occurring (scoliosis is commonly seen in kids who have agenisis of the corpus callosum). As soon as I said that the nurse looked at me and said "Don't you have a orthopedic doctor's appointment coming up soon? I know Dr. Maschino wanted me to contact.....wait a second....oh no, Dr. Maschino told me to contact the orthopedic doctor. I am so sorry I forgot to do that. I am going to get fired...." I am not sure if she was kidding when she said she was going to get fired, but I told her that it was okay. They have been so good to Kannon, and I can see where things can get confusing at times. Anyway, she listened to our other concerns and she decided to go ahead and fit Kannon on the schedule for the day so someone could take a look at him. We waited about 30 minutes, which wasn't a bad wait at all for a last minute book in at the peds office! A nurse practitioner took a look at him and noticed the chest and back too. She said it is possible scoliosis/rotation of the spine. She also mentioned to get started on seeing an orthopedic Dr (again) and that there is a chance Kannon will have to have a body/back brace sort of thing to help correct the curve and rotation. Anyway, back to the specimen cups. We got them on Tuesday and here it is Thursday night and we still have yet to completely fill one. Zach and I have to trade off who gets that job. It is a messy and smelly one...and every time it about knocks Zach to the floor because he forgets to breathe through his mouth. It cracks me up...I guess once you are in the hospital for so long, and smell all sorts of gross things, then it becomes second nature to always breathe through your mouth.
So today was even more eventful than all that I mentioned above. Let me first start of by saying that when we found out that Kannon had his genetic disorder on July 26th, the doctor also mentioned a heart defect. I was confused and asked him what he was talking about (because this was the first I had heard about it). He said that he looked at Kannon's records from the day he was born and was curious to know if we got a follow up cardiology appointment for his PFO(patent foramen ovale) and possible persistent left SVC (superior vena cava). I told him that it was the first time anyone has mentioned it. He was surprised and so was I. Anyway, we have the first cardiologist appointment next week. SO today I began sorting through all of Kannon's hospital stuff, shot records, social security card, birth certificate, medical records, etc. just trying to keep his things all organized. It dawned on me that I had his medical records from when he was born and had all of his results from the tests. I thought I had better look over them JUST to be sure nothing else had been overlooked by any of the doctors. Sure enough...I get to the Neurology notes and I see that it says Kannon needed to have a follow up MRI to rule out an arachnoid cyst. WHAT?! Immediately, I am on the phone calling the neurologist's office. Of course, I had to be on hold for 15 minutes, so that made my blood boil even more...once the receptionist picked up, I told her everything and she left a note for the doctor. Two hours pass, and so I call the pediatrician to inform her of what I found, and even she agreed that a follow up MRI should have been done to rule out any cysts. The pediatrician told me she was faxing that part of the report to the neurologist with the part in question underlined. By that time it was past 5pm and so I have yet to hear anything...I hate to leave you with the infamous "to be continued...." line, but even I don't know how the end of this post is going to turn out. We will see tomorrow. Until then, I will be saying my prayers! Oh yeah, Kannon is 5 months old now!! Yay for him!