Brrr..

We finally got our first snowstorm! Only about six inches so nothing too bad. Some parts of the state got over a foot plus they are having blizzard conditions. My favorite kind of storm! I know all of you in California are jealous that you did not schedule a visit to MN now!
So a few updates since the last post. I know that I said last time that the urine tests all came back negative. Never mind that info. Genetic doc called today and she just received word from Mayo clinic that one level in the urine was elevated. I guess this comes with a slug of potential metabolic concerns. The doctor at mayo suggested that we retest to see if it is elevated again and then we will see what is next. I am a bit bummed about all of this testing we are doing again. I was hoping that this Christmas we would be passed this phase, perhaps next year. I could say no to all of it, but sometimes we feel that Oliver is really in pain, and if this testing can figure out why then we will do it. I would tell you the compound that is elevated but it is long and I forgot =) Like I said, I will worry more if it is elevated again. I am amazed at all of the different places they send these labs. California, Boston, Chicago, Mayo, Oliver has been studied many different places!
GI (tummy) doctor was last Friday. He said to continue as we are doing. He was a bit concerned about the fact that Oliver has been starting to vomit again, especially since he had lung issues last May. If he does get severe Pneumonia we will have to change his feeding tube to go lower into the intestines or perhaps a surgery. When Oliver vomits, he does not really know to cough it up and instead sucks it right back into his lungs. This could lead to severe problems. So far we have heard him gasping every time and run in his room and roll him over to help the little buddy. We sleep light, but don't worry, we do get our rest. As much as any parent of young ones I guess!
Last bit of fantastic news(sarcasm added here), Oliver was again denied by the state for nursing care. I am waiting on some calls to figure out exactly why. I know that when our fantastic (sarcasm again) Governor made budget cuts last year he cut a lot from where this money comes from. Yet, we have two new athletic stadiums, priorities. I am going to fight this until I get a good reason of the denial. I will camp out in front of Pawlenty's office door if I have to, not that he is ever in his office, or the state for that matter. It is very frustrating at times. We have run into people who feel that individuals with disabilities get too many services. Sure there are people who take advantage of the system, but every parent that I have talked to has to jump through the many hoops to get help for their child, often getting rejected. If you ever run into these people, set them all straight for us! Perhaps in a more tactful way that I often feel like doing!
John returns home tomorrow night (Thursday), very late. He did not bring a coat or his hoodie. I do believe they will all be in shock when they feel our below zero temps! John has not been able to write much, but I know that he had a great time and is ready to get home. Myself and the kids are really ready! Oliver gets angry with me every night that daddy does not get him up for the middle of the night feed. John sits and watches ESPN with him for a while, I feed him and put him back to bed. It is easy to see which parent he likes better in the middle of the night!
I hope you are all staying warm! We stayed in our pajama's all day today and watched the blowing snow out the window. Good day, would have been perfect if all four of us were together. Tomorrow!!