I have been so very proud of you. We just finished taking your "vitamin bottle" which includes your milk, Vitamins A, D, E, and K, salt, and your Zantac. Your oldest sister was on Zantac as well, as so many babies are, but she quickly got off of it in about three months. You on other hand will probably make the transition from Zantac to Nexium ( or whatever is the most appropriate for you at the time) as you get older. From what the doctors have told us, since CF patients have to use so many nebulizers and inhalers on a daily basis, they tend to be very prone to acid reflux and so this type of medicine will just become one of those things that you will take every day for the rest of your life.
You are also doing very well taking your enzymes. We had tried for a short while doing a "dry run" where we just pour the capsules in your mouth, but you struggled with choking on the 'beads' so we decided to go back to the applesauce since you seemed to do so much better. I remember the first time I gave them to you at three weeks of age. It probably took a full 10 mins to get you to consume all of the ZenPep, but now at three months of age you are like an old pro; even taking them with a smile.
We have been very blessed to have so many people keep us in their thoughts and prayers. I would love to list individual names, but to be honest, since I will be making this blog public, I do not know the proper etiquette and I always felt bad about including someone in a conversation if they were not informed of it. So maybe if I just say thank you to HG, JS, and WJ, they will know one day that I am grateful to them for continually providing me support by answering questions, sending me emails and messages and even a little back to school gift basket.
When I started this blog, the only intention was to provide documentation for you so one day you could look back on our journey together. I can foresee you being in the hospital for an extended time and maybe these words will give you comfort when needed. I do not claim in any way shape of form to have all the answers or to even begin to understand this disease in its entirety. I was very surprised; however, when I went to our local bookstores and looked in the health/disease section to try to find books on cystic fibrosis that there was nothing on the shelf. To be honest, I was looking for "CF for Dummies". I did find a few books online, but even at that they were very limited. I do have to tell you a funny story about Arya. While we were out searching for books and searching the diseases alphabetically, Arya picked up a book and asked "What's this one mom?" I told her that it was for people who suffer from celiac disease. She grabbed it and said, "well we definitely need this one for daddy. Sometimes he just does not know how to act." It kind of reminds me of the time when we were trying to explain your heritage to your sisters and the fact the you are all part Indian and Arya spoke up because she was getting frustrated at Tara and said, " It's because daddy is 1/4 idiot!" (not Indian)
I have been in the process of trying to figure out how to make this blog public so that friends may keep up with what we are facing. I do not know if I will always make every post public ( I know that there will be quite of few things that I will keep for your eyes only) or how long I will keep it opened. It seems to be therapeutic for me; to put my thoughts down. Hopefully from comments, I may learn and be motivated to keep the blog going. So much I would like to type, but I hear you crying so I must go.........
Much Love Today, Tomorrow and Always,
Your Mother - Autumn
|You taking your very first enzymes at 3 weeks of age! (took about 10 mins)|