Monday, March 24, 2008

Happy Easter!

Happy Easter Monday! It is spring and the weather is so nice here! We had a fabulous Easter Sunday, Samuel's first. One day last week I was holding Samuel and we were talking, as we often do. It was the perfect time to tell him about this special time of year and how we celebrate Easter and what it means to us: Our Savior is NOT dead! Samuel was just as excited as I was, laughing and enjoying my story. It's such an honor to share such good news with him. I'm happy to have that responsibility.

Even though Easter was like a spring-time story, Kevin and my spirits were a bit dampened when noticed Samuel was not his usual self. He fell asleep during song service and was very lethargic all day; not normal for him. In the evening he started getting fussy and I noticed he felt warm. After I took his temperature, I was shocked to see it was 101.5! We had a doctor's visit scheduled for this morning so I decided to give him some Tylenol and wait until the morning. Samuel is so smart! He learned that if you go to the doctor with a fever, you can't get any shots. I told him not to get any ideas, he still has to get them eventually. But there is some concern as Samuel does have a cough and his throat is irritated. So instead of getting his Synagis shot (vaccine for RSV), he got some antibiotics and increased breathing treatments. And lots of TLC from his momma! Even though we know he isn't 100%, as long as his fever is under control, he is in very good spirits. I told Kevin if this is his "I'm grumpy and sick" mood, then I can handle it. Other news from the doc: weight is up still (even more) and that impressed the P.A.

Every time we go out, I am reminded of how a baby changes EVERYTHING! I'm happy to do it but there is no such thing as "running out" for a minute any more. This weekend Samuel and I attended a bridal shower for a friend from church. I was a little frustrated because we were late but that is the story of our lives now. Late to everything. But this shower was exciting as I got to share a little about Samuel and his story with some ladies I met there. Each time I tell it, I'm reminded of how awesome the hand of God is in his young life. And although it can bring back painful memories of the day we got the news, sharing his story, I believe, is just the beginning of the miracles he will witness in his life. I'm so excited that even though Samuel is so young, he is still a tool to uplift the faith of those he meets. I pray he continues to be fully used in this way until God's plan for him enters the next chapter.

Thanks for checking in. And, of course, we STILL believe!

Tuesday, March 18, 2008

We've been busy!

Thanks for checking in at SamIAm. As usual, Samuel is doing just wonderful. Tuesday, Mar 11, Samuel had his four-month appointment with the pediatrician. He had to get 4 shots! Luckily, his doctor has one of the best nurses when it comes to giving shots and Samuel didn't realize he was supposed to be crying until the third poke. He cried for about 20 seconds then decided it wasn't worth it any longer. I was so impressed. He is getting so big! He weighs 16 pounds, 6 ounces, in the 75th percentile. He is 25.5 inches long, also in the 75th percentile. His head is 17.75 inches around, and that is off the charts, in the 100+ percentile range. The doctor says it's all those brains!

Samuel has been growing and changing so much! He can sit with some support so he has been spending a good amount of his play time in his exer-saucer. About 2 weeks ago I realized that he was sitting so well and thought I'd give it a try. At first he was overwhelmed by all the toys and colors but quickly jumped in and now loves to play. He has also learned to pull on the toys that hang from his car seat handle. When pulled, one of the toys vibrates as it goes back up, shaking the rattles in it. On the way to church the other day he looked at the toy, pulled it and put the foot of it right in his mouth. Thankfully, he doesn't have teeth yet or it would have pulled them out! Speaking of teeth, none yet, but it won't be long. He is a regular drool making machine.

On Friday, March 14, Samuel was supposed to have an infant pulmonary function test (PFT). His pulmonologist has been wanting to get this done for a little while. This is to gather some baseline results to monitor his disease and evaluate his response to treatment. Alas, Samuel did not want this test done on Friday and because I'm constantly amazed at how frequently Samuel gets his way, we are going to wait. He was hungry and tired, but not tired enough. Just when he was hooked up to the machines, he would wake up in distress and the doctor, nurse, and respiratory therapist would have to back-track to get him back to sleep and calmed down enough to try the whole process again. While the day was stress filled, it wasn't an entirely wasted trip. We were able to spend some time with another pulmonologist at Phoenix Children's Hospital and discuss a study they are going to start in the next few month. When we meet with Samuel's regular CF doctor on Thursday, March 20, we will talk about his possible participation in the study.

Thank you all for your continued support of Team Samuel and the Cystic Fibrosis Foundation. I am happy to report that I have met my personal goal for our Great Strides walk. This is all because you all made it happen! While this is exciting for me, we still have a little further to go before our team meets it's goal. Thanks to all who participated in the "Dough Raiser" at NYPD Pizza on March 17. With our determination and creativity, I'm certain that we will exceed our team goal. In the mean time, let me just say thank you to those who have generously supported this cause. It may surprise you how little government funding CF research receives. I promise to do all I can so that "lack of funding" is never a reason a cure can't be found! And, of course, until then, funding will continue to improve treatments for Samuel and all those whose lives are changed by this disease.

We STILL believe!

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