3/11 - Happy 4 Month Birthday Leo!

It is hard to believe that our little guy has been with us for 4 months now. I wish I could give him a proper birthday but today his presents are G-tube buttons (little Mickey Mouse cloth covers that go under his G-tube) and a special hat (Thanks Stovers!) that will help Leo stay off the flat spot on his head. On top of that, I am holding him and giving him as much love as I possibly can today. Leo, I hope you know how much all of us love you. Happy birthday buddy!

Today was very busy between DSCC (Department of Specialized Child Care) visiting our home, another interview with a home nursing agency, and trach training at the hospital. All three went well. The agent from DSCC was extremely nice and the conversation went very well. I can't imaging having her job. We have some concerns about finding home nurses so we asked her what her thoughts are on the topic and she started her answer with "I've only known you for about 20 minutes but you seem very nice and from my perspective, you will be 'very desirable' by home nurses". She gave some other examples of less desirable situations that she works with and all I can say is it takes a very special person to do her job. We ended the conversation with showing her Leo's room where she checked the electric to see if it was grounded and the size of the room. We thought the walk through of the house would be much more invasive so we rushed to get every bedroom put backed together, checked all smoke detectors, installed fire extinguishers, and cleaned the entire house clean.

One of the very few things I didn't like about the conversation is the feeling that our lives and are home will now be 'state run'. I can't think of a better way to describe it than that term. Our home will continuously be observed and reporting to several agencies. Even simple things could get us a visit from DCFS (Department of Child and Family Services). An example is that we can never leave Leo alone with anyone who is not trained and documented on an approved list. Even if we wanted to take Sammie to the park or run to the grocery store, things where we are only minutes away, still violates the rule. Even our friends and family who are certified nurses can't be with Leo unless they are on the 'official' list.

The interview with the home nursing agency also went well. While this nurse wasn't as polished in terms of delivering a marketing campaign, she had very good things to say and was very genuine in her answers to our questions. Kate and I plan on making a decision tonight so that they agency can start the hiring process to find us nurses. If you know anyone nurse who is looking for a job, let us know.

Now that we know that we can have unlimited number of trained trach people without impacting our nursing hours, Uncle Dave joined Helen and me for trach training today at the hospital. Grandma Helen was a little reluctant on doing some of the things on Leo since she has never seen them done before but Uncle Dave jumped right in and changed his trach ties and cleaned his stoma (opening in his neck). I can understand Helen's hesitance, it is very scary for anyone who has never done trach care. Blood and needles are NOT my favorite but somehow I have built the courage to over come those fears. Don't worry Helen, you soon will too. But, that doesn't stop me from avoiding the situations if I can. For example, last week Kate and I had to have blood drawn for genetic testing and being a gentleman, I let her go first. Well, the nurse had to stick Kate several times, not something I think I could have tolerated. Since it took Kate's nurse so long, I got another nurse to draw my blood and she was done before I even knew she had started.

At the hospital we continue to referee the disagreements between doctors on Leo's care plan. Over the past week, we have had different Intensivists (attending doctors) who have had a variety of perspectives on the plan to wean Leo from the vent. One would say 4 hour trials, another 6 hour trials. Others would say he would stay on the vent no matter what. We finally had enough. In the next couple of days, we will be having a meeting between all the doctors where a game plan would be established and followed by all who oversee Leo's care. Kate and I understand the desire for a slow, minimally risky plan but we are pushing for an aggressive plan. Hopefully in the next couple of days we have more to update later in the week on this topic.

Sammie continue to amaze us every day. Below is a picture of her helping me paint a book shelf for her room (Yes, Kate already gave me the lecture about letting Sammie paint without anything covering her clothes). She said two things that amazed me in the past week. First, I had several friends help me move stuff around the house and when we were moving things up stairs, she would repeatedly say "be careful...". The second and more hilarious thing was last night I was trying to reprogram the remote for the tv in our bedroom. In order to do so, I had to keep turning the TV off to make sure the new code would work. I did this about 7 or 8 times while Sammie was watching the Disney channel. All of the sudden, Sammie said to me "this TV is driving me nuts!". Leo, Sammie is going to teach you so much when you get home.

Here is Leo's 4 month picture! (I'll try to get a better picture when he wakes up :)