Sunday, May 25, 2008

Sorry for not posting in a few days. There really isn't a whole lot to tell. Aidan is doing okay. He's been pretty irritable today. The past few days he's done well. The dietitian came out on Thursday and we pretty much got off on a bad note. She didn't seem all that supportive of me creating a blenderized diet for Aidan. Her excuse being that he wouldn't get enough nutrients from a combination of babyfood and other foods. She also said it would be a lot of work. I know it's a lot of work. I ended up showing her the jars of babyfood and the formula that I had worked out. I spent a lot of time reading and trying to balance the stuff out. I also showed her Aidan's liquid multi-vitamin (IntraKids). It has everything that Aidan might not get enough of from his food.

The formula that he is currently on is causing him a lot of problems. The dietitian suggested a different formula that we will talk to the doctor about getting him started on instead of what he is on. I'm not completely opposed to using formula. It is a convenience, but it makes me feel lazy to just open a can and pour it into his tube. I don't know. The past week has definitely taken a toll on me personally. I'm exhausted. There is so much stuff that needs to be done and I don't have the time or the energy to get it all done let alone anything that I WANT to do.

Aidan has an appointment with the pulmonologist on Tuesday, so hopefully we'll find out something about the bronchioscope or the passy-muir valve.

Hope everyone has a fun and SAFE Memorial Day. Please, if you are going to be near water, keep your children safe. Too many children drown this time of year. I hate to think of anyone else going through this hell.

Please continue to say prayers for Aidan and for Allison. I have been emailing her grandmother and they had to reset her arm because she dislocated it. She is storming that badly. Pray that her doctors are able to find the right medicine to help control her storms and that they find a way to get her hyperbaric treatments.

I also ask that you pray we get in some golf tournament registrations. We were hoping to put the proceeds of it toward getting Aidan's hyperbaric chamber. With gas at $4 a gallon now, driving to and from Charlotte every day is taking it's toll on us and our van. This is our only vehicle, so I would hate for anything to happen to it. Also pray that Russell hears something about these jobs that he has interviewed for. We have been hoping and praying to hear back about one in particular, but the people doing the hiring are out of the country on a job.

Thanks everyone!


Anonymous said...

Has anybody signed up for the golf tournament?

The Tuba Geek said...

Haven't received anything yet, but that doesn't mean much. From what I have been told, most people don't register until the last 2 weeks before registration closes. I have been told of several interested individuals, so I am not terribly concerned ... yet.

Anonymous said...

I continue pray for you all and think of you daily. I cannot fathom the pain, grief and total nightmare you must be in. My son was diagnosed with a chromosomal disorder at age 2 ( that affects his learning, growth and devlopment in many ways, but in most ways he lives a very normal life, as do we.) And that diagnosis(nothing compared to yours) rocked my world and nearly sent me over the edge. So I can't even imagine what you are going through. I am with you in prayer and thoughts every sngle day, even though I don't know you. I don't know how you will cope, adjust, and get through this, but I have faith that you will.