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!

Great Strides with Great Strides

Hello, Samuel's uncle here! This is my first time posting to this web site! We hope you're enjoying keeping up with the big guy!

As you may have seen from Erica's post the other day, she has formed Team Samuel to walk in the Great Strides walk on Saturday, April 26, 2008. The Great Strides walk will raise money for the Cystic Fibrosis Foundation, which will go towards research and development of a cure for CF, and to improve treatment methods for CF patients.

As of the time of this posting, Team Samuel is at 70% of the $1,500 goal! We would love to be able to not only reach that goal, but to exceed that goal in a HUGE way. You can make that happen! Please donate to Team Samuel! It's quick, easy, and above all, will help Samuel and others like him!

Click Here to Donate to Team Samuel
Also, ask others to consider making a donation as well. There are lots of good folks out there who would love to give to a great charity, they just need to know what to do. Tell them about Samuel, and how they can directly impact the treatment of the big guy. I'm sure they'll do it, all you have to do is ask!

Great Strides and sleeping

Thanks for checking in at SamIAm. Samuel is doing just wonderful. We have a follow up appointment on Wednesday the 30th at Phoenix Children's so we will get an official weight then, but our best guess is about 13 pounds, 8 ounces. His face is so round and he has more chins than I can count. It's really bad when he gets milk stuck in the folds of his chins. It's so hard to get dry so it stinks before too long. BUT he still smells like a new baby. I love to hold him and just sniff his head. He is so easy to love! Unless it's 3:00-6:00 am!

While Samuel has been sleeping mostly through the night, the other night he was awake about every 20 minutes. Kevin was sleeping soundly, I was not as I was up and down all night tending to Samuel. Apparently, one time Kevin did wake up and was laughing at me the next morning for my comment. I didn't say anything mean to him, although I often want to wake him to tell him it's his turn. He thought it was funny that of all the things he thought I should have been saying, like "I'm so sleepy", I said "I just got warm!" The evenings here have been very chilly (for Arizona) and I hadn't been able to get warm that night. When my feet finally thawed, Samuel needed my attention. And I DID still want to sleep (who wouldn't?) but I knew that getting out of bed would mean getting cold again. No fun!

I admit it, I'm so proud of Samuel. He will be 3 months old on Wednesday and is really filling out his clothes. He is so alert, laughing, and holding his head up on his own. Just yesterday he was laying on the couch, watching me fold laundry and rolled over to his side. I'm not sure if it's because it was slightly downhill, but I was very surprised! He also enjoys watching sports with his dad. Friday, while I was finishing my housecleaning, he sat in his swing and watched some Baby Einstein. Samuel is also really enjoying "Old Blue". Old Blue is a cross between a blankie and a stuffed animal. He likes playing with it because it rattles and the edges are satin. Also, he has taken a deep interest in his thumbs. Sucking his thumbs. Usually, one at a time, but he has been known to stick them both in his mouth. The pediatrician said to replace his thumb(s) with a pacifier because, in a year, we can take that away. I'll have to ask the doctor what to do when he spits the binky out and puts the thumb, or thumbs, in.

Before I sign off, please let me appeal to you to support our Great Strides team, Team Samuel. I have formed a team to walk on April 26th in Tempe, AZ, and set our team goal at $3,000. I KNOW there are so many people that support Samuel. With your help, I would love to be able to exceed my goal this first year we are walking. To learn more about Great Strides, donate to the team, or sign up to walk with us that day, visit www.cff.org/great_strides/ericakelley. This is not just for Samuel but for every child and family just like ours who has to deal with CF every day. This supports research to not only find a cure, but, until then, improve treatments. Thanks for your support of Team Samuel and the CF Foundation.

Check back next week for an official weight update!

Believe

Before I get onto all the sappy stuff, here is a quick status on Samuel: He has grown 2 inches and gained so much weight! He has rolls now! As of December 26, he weighs 11 pounds, 3.9 ounces. The doctor at PCH said his weight gain is "phenomenal". We are doing breathing treatments once or twice a day along with some chest physical therapy, also called CPT. He doesn't mind the treatments so much right now, which is the purpose. While he doesn't NEED them, it won't hurt anything and will get us all in the routine if he ever does need them. Aside from the CF concerns, Samuel is doing excellent! He's starting to sleep longer hours, a welcome relief for me and Kevin. We aren't looking forward to next week as he is getting shots on Monday and Friday. First, his general immunizations and then his second RSV vaccine. 5 pokes total. Again, I'm not excited about it.

During this Christmas season, it has been refreshing to remember how good God has been to us this past year. We have been so blessed, it seems like something else is working in our favor every time we turn around. While I have never had to worry so much about where my next meal is coming from, I'm experiencing how God is a provider on a different level. Since that first day at Phoenix Children's when it seemed the world was crumbling out from under me, God was providing. It seems that this condition can cause a financial strain, as most can, and I have decided to stay home to take care of Samuel instead of exposing him to all the grime that is inevitable with most day care operations. We are enrolled in a program called CareFirst, offered by the drug company that gives us Samuel's digestive enzymes through his second birthday. These are essential for him. We've also received a hospital grade air purifier, and his air compressor was for a nominal fee. There are countless ways we have been blessed through the generosity of others and for that, I will forever be thankful.

I don't know how many there are, but there are people all over that have been praying for Samuel and our family. Even if I didn't know because we were told, I would still know because there has been some unexplainable peace and strength I've been experiencing. There is absolutely no way I could get through the day on my own. Thank you for your prayers for our family. And thanks be to God for His grace and mercy that is truly new with each morning.

This year at church and in our family we have a theme: Believe. We've never had a family theme before but this year it was called for. Mark 9:23 says "If thou canst believe, all things are possible to him that believeth." Since the day we received Samuel's diagnosis, we have believed that God is capable of a complete healing. I know He is able. And I DO believe. But in the very next verse, Mark 9:24, the father of the sick child responds to Jesus saying, "Lord, I believe; help my unbelief." Just his statement tells me there was still a shred of doubt. Oh, how I can relate to that man! I would love nothing more than for Samuel to be healed and not be plagued by the problems of cystic fibrosis. That being said, if God should choose NOT to heal Samuel, that is OK. It's OK with me because I know, no matter what, Samuel will be used to God's glory. He is a miracle ANYWAY! And he's not named Samuel (meaning "asked of God") by accident. I don't think God would have given him to us if there wasn't a divine plan for his life. Just him being here, he is a miracle. I don't know how and I don't know when but someday, somehow, Samuel will be used by God and to His glory. I just can't wait to see how it's going to happen!

Awesome video from Samuel's dedication

Adam Olson at StationOne Productions is the man. He made a really cool video from Samuel's baby dedication, then was nice enough to send it over so we can include it here on Samuel's web site! If you would like to watch it, simply click on the link below:

Thanks so much, Adam! Great work!
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Wow, our friend Adam Olson at StationOne Productions doesn't quit! He made a top-quality screensaver, consisting of photos from Samuel's baby dedication, which you can download and use on your computer.

I'm guessing this is for Windows computers only. To install this screensaver, first download the following Zip file (click to download):



Next, unzip the downloaded file, which will contain two files. Save those two files to your Windows directory. In the control panel, under display properties, update the screen saver to this one, which will be named something like "SamuelKelleyScreensaver".

Again, thanks Adam for a job well done.

• Screen Saver