We're having fun, fun, fun!

There is finally rest for the weary! Samuel has slept the past 4 nights completely through the night. No getting up for middle of the night feedings. He goes to bed around 9:30 after a meal of milk and jar of baby food, some CPT, a breathing treatment and story. He wakes up between 6 and 6:30. Kevin and I love to hear him wake up because he will just lay in bed for about 10 minutes and jabber away. He is truly discovering his voice as well. Samuel is so much fun!

As of today, Monday the 9th, we have been at church every day, except one, for 10 days. VBS is this week and we have been helping transform the sanctuary into a space ship. Tonight was Samuel's first VBS service and he didn't know what to think. Kids were all over the place acting out songs. There is a laser light show on the ceiling and some spinning colored lights on the floor...he didn't know where to look first! But it was fun and he was very entertained even if he doesn't have a clue what it's all about.

On Saturday we were having a car wash and it was H-O-T hot. Poor Samuel was sweating so bad, his sweat had poured down his cheek by his ear. Even though I had tried to keep him cool and clean by wiping him with baby wipes, I knew he was going to be super-salty. (People with CF release more salt in their sweat than those without CF). By the time we got into some air conditioning, I could tell where the sweat had dried because there was so much salt on his skin. Time for some more wiping. About an hour later, one of his many girlfriends, Tia, gave him a kiss on his cheek. I told her to lick her lips and she thought I was crazy but finally did it. The look on her face was priceless. She turned up her nose and said "What IS that?" I explained about the salt thing and we all had a good laugh. And Samuel got more salt that day to try to make up for what he lost in his sweat. He also got a nice bath later that night. We had an impromtu photo shoot after that and came up with one of my most favorite pictures of him ever! Yes, that is his thumb.


We have also been having fun playing in Delaney's Jumparoo. Thanks Delaney for sharing your toys! This is a video from Friday afternoon. I'm just making funny noises with my mouth and Samuel is just hanging out. Samuel can get some air when he gets going on this thing!

June is Family

Yes, June is "family" month at NLBC (New Life Bible Church). Another reminder that I'm a mother and responsible for someone other than myself. Goodness! And what a responsibility it is! We were reminded this morning of what an honor and responsibility it is to raise our children as God would have us. Who knew teaching this little boy would be so much work? Undeniably, a 24-hour, 7-day a week job. But it's SO worth it!

I'm not exactly sure where the month of May went but I realized the other day that Samuel is now 7 months old! He's growing so fast and will be driving before too long. OK, maybe not driving, but I feel like I should start planning his first birthday party now in case it sneaks up on me, which is happening frequently.

In an effort to extend our family, Kevin and I have agreed to help with the junior high class at NLBC. We are extremely excited as we both have always had a special calling toward this group of young people. Call us crazy but we enjoy spending our spare time with some crazy teenagers. I guess you could say we just "adopted" about 15 more kids. We can't wait to get the ball rolling and get class started. So much to do!

Summer is here!

We are just about settled in to our new home! It has been a busy month moving and then a week later breaking in the house with Samuel's Gagaw and grand-dad Engle, Uncle Andy and Aunt Morgan and great-grandma and grandpa Engle coming to visit. We certainly had a houseful! It was very nice to spend time with everyone and share such a nice time on Mother's Day.

While everyone was visiting, Samuel got to go swimming for the first time. Even though the water was very cold, he seemed to enjoy getting his feet wet. Mommy didn't have the heart to get him totally wet and cold. Since then, I was able to find a big floaty crab for a boy his size and I think we will take advantage of that tomorrow. After that first "swim", my mom took me and Morgan to get pedicures. Of course, since the big boys were golfing Samuel had to come with the girls. He had the best time entertaining the ladies at the nail salon. I'm not sure who was having more fun there but I would almost guess it was the ladies. He would make his purring noises, rolling his Rs, and they would all do it back.

Samuel has also had his 6-month well-baby check up. His weight was 18 pounds (50% percentile), which has slowed down a bit since he was sick last month. He is 28 inches long (87% percentile) with a head circumference of 19 inches (97% percentile). A few months ago he was a short fat kid with a big head. Now he is the long skinny kid with a big head! He got some more shots, which he handles like a trooper. He cries for just a few seconds then is over it. This particular time was more fun than before because he was able to sit up better than ever and play with the tissue paper on the exam table. We kept having to move him up further on the table to the part that was covered with paper. By the time we left, there was no paper left for him to play with! He was having a blast.

He has also started developing his tastes. Samuel isn't too fond of vegetables, but will eat them. He prefers the sweeter foods like fruit. And as far as the prepared dinners go, he enjoys them for the most part. He does NOT like macaroni and cheese, surprisingly. I always thought every kid liked that! He still doesn't have any teeth although there are a few white specs where teeth should be coming in. I've given up looking for them and just know they will be there too soon.

It's been so fun getting to spend time with him. Everyday with him is a gift. He is really developing a personality and it is so much fun!

I'm a bad mother and other events

Happy Cystic Fibrosis Awareness Month!

So much for my efforts to keep this updated! We HAVE had a lot going on. We just signed for a new house, some friends got married, packing to move, Great Strides...April flew by! And Samuel just turned 6 months old.

Before you call child protective services, Samuel is fine and I've been assured these things happen all the time. Samuel was on the couch in his car seat and Kevin and I had wondered upstairs. About 2 seconds after I realized Samuel was downstairs by himself, I heard him screaming. On my way down the stairs, which seemed to be in slow motion, I realized Samuel wasn't where I had left him. He was laying on his tummy on the floor. He had fallen out of his seat and onto the floor. By the time I got him calmed down, I was a mess. Needless to say, we buckle him in all the time now, no matter what.

We also had an impromptu visit to Phoenix Children's urgent care clinic on Tuesday night. It's a great facility and I wish it didn't take a 102.9 fever to get us there. Samuel's fever spiked rather quickly the other day and unfortunately his pediatrician's office was closed when it happened. At this point, the doctor thinks it's a viral infection. The good news is his lungs and ears were clear and seemed fine. The bad news is, well, I know for sure that a 6 month old boy doesn't like to have a catheter and isn't too fond of getting blood drawn either. On the other hand, I know what it takes to get Kevin off the golf course before the round is finished. Sorry Kevin!

Samuel still doesn't have any teeth. I keep expecting him to open his mouth and show me two, but he will probably let me know about any teeth he has by biting me.

Great Strides was great on Saturday. Team Samuel exceeded its goal. At the time of this post, we have raised $5,415 for the CF Foundation. This far exceeded our goal of $3,000. If I had to, I think I could do that walk every weekend. It didn't take too long and was lots of fun. I wasn't expecting it to be as emotional as it was.

Never did I ever think I would participate in a walk like that for my son. Later that afternoon I had a few minutes to reflect on the morning and began to, well, honestly worry about Samuel and all he will face. As his mom, I want to protect him and keep him from harm and pain but now, looking ahead, I am not prepared to do that and I'm fearful of all he will face that just isn't fair for a boy like him! From time to time it's been easy to check back into a little pity party for him. So, last night, it was all too timely to be reminded of the peace God has for us. While we were having a Bible study at church, our friend leading it started with the scripture from John 14:27 (New International Version) "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." He could have read that and dismissed us because, even though I know in my heart I'm supposed to have His peace, who doesn't need to be reminded from time to time? It was at least the second time this week I just wanted to look to the heavens and say "OK, God. I get it." So, again, I'm doing this the hard way and worrying for things I can not change. And while we can't choose our lots, we can choose how we respond to what's been given to us. Hopefully I can make this easier on myself and listen the first time.

Samuel's YouTube debut

Welcome to our new blog page! I decided to try this out since I can easily post pictures here. First things first: Samuel. He is such a character! He is rolling over (no more laying him on the couch or the bed!) and trying so hard to move around. He is just getting ready to figure out how to push his legs but he still doesn't get anywhere. This, however, does not stop him from getting into things. Even when we are holding him he is so squirmy and looks for things to get into.

Today I had him on the kitchen counter in his Bumbo chair. I was standing in front of him and he managed to get to the canister of tea bags. Big deal, they are just tea bags, right? He took the lid off, pulled about 1/2 out and decided to see what was so great about tea and sucked on two of the bags. Like I said, I was watching all of this but he is still so inquisitive.

He is working on some teeth. None coming through yet, thankfully, but they are right there. Samuel is also starting to notice when he is left alone. The other morning I woke to him playing in his bed. He was just talking and being so nice. I decided to go brush my teeth before getting him up. Bad idea to him. He saw me walk by and quickly went from a happy baby to an angry baby. He does this when he is playing in his saucer too! I walked by him the other day and didn't pick him up or really even acknowledge him on the way by. This really hurt his feelings.

A few days ago he was laying on the guest bed and Kevin and I were just hanging out in the office. I decided it was a good time to try to get some video of Samuel. Good thing! In 4 minutes, he did just about all the cute things he's doing now: playing with his feet, sucking his thumb (so bad, I know!), sucking his toes, rolling his "R"s, just being a cute baby! You can check it out for yourself on YouTube. Just search "Samuel's Talents".

The Great Strides walk is in just a few days! I've been trying to get ready by walking more lately, which Samuel absolutely loves! What a treat he is in for when he walks with 500+ people on Saturday at Kiwanis park. I'm so pleased to say Team Samuel made it's goal! Thanks to ALL who donated so generously to support such a great cause. I am confident the CF Foundation spends all it's money frugally. They frequently remind us they operate on a dime, literally. Of every dollar donated, 90 cents goes toward research for a cure and drug development for treatment plans. If you haven't had the opportunity to donate and would like to, it's NOT too late! Go to cff.org/great_strides/ericakelley and you can do everything there.

Thanks again for checking in!

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!

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!