Monday, June 30, 2008

Hypertonic Saline Study

Forgot to mention it: The hypertonic saline study will be up and running by August, probably sooner. Samuel will be participating and will have his IPL (Infant Pulmonary Laboratory) or pulmonary function test at that time.

Click on the words to learn more about the hypertonic saline study or infant PFTs.

New house rules, bananas, and true confessions

We have a new rule in our house: if you use the last diaper in the basket, it's your job to replace them. Think like toilet paper. I should have known better than to risk it BUT we haven't experienced the "fountain of youth" in a, many moons ago! ha-ha-ha :) So when I was changing Samuel's diaper and a reached in the basket to find it empty, I SHOULD have covered him with something...anything... before running into his closet for another package of Kirkland diapers (insert shameless plug for Costco diapers. Why haven't I trusted the Kirkland brand sooner? They are the only way to go!). BUT, alas, I didn't cover him up and when I turned around he was shooting right into the laundry basket full of clean clothes! Clean AND folded clothes. What didn't make it in the laundry basket of clean clothes went down the side of the changing table and onto the carpet. I promise, he's working on his aim already. We need to keep working on that.

It was really quiet in the house a few nights ago. Upon investigating, this is what I found.

We have been getting ready for a group birthday party which was tonight. We hosted a birthday party for Kevin, and 2 other friends of ours. All of them have a birthday within a week of each other. It was so nice to get my house cleaned up (yes, I guess I needed a really good reason), my new blinds hung, and cook for a large group. The party was great and I highly recommend the American Idol game for Wii. SO entertaining! Eli and Pastor Tim, be glad I don't have my camera to upload the video. But remember I have it and I'm not afraid to use it. :)

The other day I was sitting in the floor with Samuel, eating a banana, and Samuel seemed very interested. Kevin was home and was able to get some video of Samuel sharing my banana. Looks like Lucy wants to share too!

And look who's trying to get around! Of course, he only face plants for the things he isn't supposed to mom's phone and banana peels.

Today's confession: I'm addicted to Jon & Kate Plus 8. TLC has been playing this frequently. In fact, I believe there was a J & K + 8 marathon this weekend. What's so great about it? Here is where the confession comes in. It is a bit scary to admit that I think, if I were in her shoes (2 sets of multiples under age 7, or however old they are now) I would be very much like her. She is, how do we say this, she maintains control of her home. I have been having my own Jon & Kate Plus 8 marathon lately thanks to DVR. Samuel and I both enjoy this show. The times when I think my life is crazy and how do we get everything done I think, "Kate can take care of her family, make breakfast lunch and dinner for 10 people every day, sweep and MOP her kitchen floor 3 times a day (yes, DAY) do however many loads of laundry, get 9 people bathed, brushed, and dressed, etc." And what did I do today? Well, I've gotten us up and dressed and we are going to the grocery store and dinner may be a little late. Then I realize Kate doesn't have to watch 3 episodes of her own show to get her "fix". In fact, who knows when she got to sit in front of the TV and watch anything with her kids? There is some argument over the tone Kate takes with her husband, but I have my own opinion. I remember this is a reality TV show and these are real people, humans, in fact. And TLC, as honorable as they are, have a job to create a TV show people like me will want to watch. So they probably record this family for, we'll say, 12 hours a day, sometimes dividing themselves as the family separates. And then they edit what they have for a 1/2 hour show. I'm am pretty sure they take the worst of Kate and edit it to make it addicting for people like me to chuckle, shake our heads, and thank God we don't have 8 young kids.

So now that the blinds are hung, the party is over and the Jon & Kate Plus 8 marathon is over, we can start packing for our cross-country trip! Samuel is going to Grandma and Grandpa's! And he is going to see great-Grams and great-Gramps! We can't wait, although we can wait for the 4+ hour plane ride. Samuel doesn't like to sit still, especially on my lap, for that long. And he is so good he only likes to fall asleep in his crib, not my arms. yippy fun yay-rah. This plane ride is gonna be a blast.

By the way: Don't be afraid to leave me a comment. I'd love to know who is reading this.

Friday, June 20, 2008

Just breathe

Samuel is starting to get used to his breathing treatments. We like to do them after he goes to sleep so he won't fight as much but this time he even held the mask to help! There actually is a smile under all that.

It's been so hot here lately but we still try to get out early in the morning for a walk around the neighborhood. That will be so much easier now that we have a new (to us) Jeep jogging stroller! It has a steering wheel complete with gear shift, music button and horn that Samuel was incessantly beeping during our walk this morning. I guess I wasn't going fast enough. Or Lucy wasn't getting out of the way fast enough. One or the other.

We are also getting the house ready for a birthday party for Kevin and some other friends of ours. What am I doing blogging when there are blinds to hang and walls to paint and rooms to clean? I better get busy! I have one week to get ready.

THEN right after that it's East Coast time! Samuel's grandparents need their grandson "fix" so he and his very personal assistant/handler (that would be me, his mother) will be heading out there for a visit. We can't wait!

Friday, June 13, 2008

Update on Samuel

Samuel had a follow-up visit at Phoenix Children's Hospital today and is doing quite well. He is 27.5 inches long, right at the 50th percentile, and 18.5 pounds, around the 50th percentile as well. Dr. O'Hagan, his pulmonologist, said everything is great. His lungs were clear and growth is fine. Like every other visit, he had to have a throat swab. While he didn't cry, he's not sure about it and thinks he might not like it so much the next time.

We are increasing his enzymes to 3 per feeding and increasing salt to 1/8th teaspoon twice a day. And we get to go back in 2 months.

We still don't know much about the hypertonic saline study Samuel is supposed to participate in. It's not up and running yet. We were waiting to retry his infant pulmonary function test (PFT) to be part of the study since he would have to get one before the study begins. But if it doesn't start soon then we will just have to take the chance of having to do it twice. Poor little guy! We didn't have any success the last time because he kept waking up before the test could begin. Turns out he doesn't really like people putting stuff on his face while he tries to sleep.

The best part of the visit? The paper, of course!

After the visit, we came home and had to have an emergency bath. He enjoys playing in the water. And sitting in the kitchen sink.

Thanks for checking in.

Monday, June 9, 2008

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!

Monday, June 2, 2008

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!

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