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