Friday, August 22, 2008

Be inspired!

Samuel has been a real character lately. He has a really cheesy grin that he likes to give and it is so funny and cute. I haven't been able to snap a photo of it yet because he won't hold that pose but I'm sure I'll get it sometime soon.

Lately we've been having to put at least 2 binkies in his crib with him. Somehow he throws one overboard and needs the other for backup. But sometimes he will have both. And when he does the show begins. He will lay in his bed, binky #1 in mouth, and hold the other one in front of him. He sees binky #2 in hand, spit binky #1 out and insert binky #2. Then he'll pick up binky #1, spit out #2, and insert #1. The process repeats until he gets bored and falls asleep or we laugh too hard and he gets distracted.

The other evening he was having a snack in the floor and finally decided to share with Lucy. He is such a good sharer but Lucy needs help with her sharing. When he realized he wasn't getting his snack back he wasn't happy at all. He has since shared his stuff with her from the comfort of his high chair (I think he likes to see her jump up and get it from his hand) but hasn't been too upset by it.

While Kevin was gone to Show Low one evening, he missed some of Samuel entertaining himself. Luckily, I was able to capture THAT on video and share with him and all of you. The hard part is deciding which video to post as he did this for quite a while.

video

Has anyone else been inspired by the Olympics? I have. Seeing people set a goal and work every day to achieve that goal is inspiring to me. What have I been inspired to do? Besides stay up late watching, well, gee, I can't quite say. I've done some extra crunches lately and made an extra effort to trim some money on groceries. Now that I think about it, I think that last one is more of a necessity than anything else. I guess the thought that people who raise their kids and go to school and work just like you and me can achieve some level of superhumaness (that is a word created in our junior high class and I think it is appropriate here). They can live right down the street from us and for 2 weeks every 4 years their name is on our lips like they are super stars. And they are, I don't want to take anything from them. But thinking about it, greatness isn't difficult to achieve. Whatever you wish to achieve, just set your mind and never never never give up and you will be a superhuman champion in your own right. Good luck and God speed!

Friday, August 15, 2008

Samuel's IPL

Happy Friday! Today was Samuel's IPL (Infant Pulmonary Lab) and it finally happened! It wasn't as bad as I had expected. I had told my mom "the beatings will commence at 1:00". But there were no beatings. I woke Samuel up at 7 this morning and gave him a bottle before he couldn't have any more milk. We played until about 10:20, when we went to the grocery store. I figured getting him out of the house and doing something would be less painful. He fell asleep on the way to and from the grocery store, which, luckily, is only about 2 miles away. He TRIED to go to sleep on the way to PCH, which is about 20 miles away, but Kevin and I did everything we could think of to keep him awake: rolled the windows up and down, honked the horn, sang action songs, and even did the cold wet washcloth to the face, neck, arms and legs.

If you have ever said to your child something like "One day you will WANT to go to sleep and I won't let you!" well, today was that day for me. Samuel has been fighting sleep for the past few days and today the roles were reversed. While it was funny some of the time, it wasn't a party. In the end, I felt cruel. I felt like a terrible mommy.

While at the store, he was really starting to get sleepy. I've never seen him act the way he did there. He actually laid his head down on the shopping cart and closed his eyes! Every fellow shopper commented on how sleepy he looked. However, the store employee must have thought I was crazy when I was crying in the baby food aisle. She said to me, "Boy, somebody looks sleepy!" and I replied, through my tears, "I know and I'm having a real problem with it." Surely she was thinking "sheesh, lady! just let him go to sleep!" but thankfully kept her crazy mom comments to herself.

After the morning, Samuel finally got to get some rest at 1:30. To make sure he was sleeping soundly, the doctor gave him some medicine to make him relaxed and sleepy. He was out cold at 1:35 and the test started at 1:40. It lasted for about an hour and we got results soon after it was complete.

For the results to make sense, you should know there are 4 parts to the test. The first 2 are done under "normal" circumstances i.e. no meds. The last 2 parts are after some albuterol is administered. The bad news is that his lung capacity is a little below normal. The good news is that after meds, it's excellent. While compiling the results the doctor asked if there was a history of asthma in our family. It turns out, Samuel's test results, according to this physician, are more consistant with someone who has asthma, not cystic fibrosis. I thought that was interesting and a blessing of sorts.

We left PCH with a very sleepy boy, who hasn't fought sleep once yet today, and a prescription for some med I can't remember. It's a steriod. We made sure to ask if it would get Samuel kicked out of the Olympics for doping. The nurse said it wouldn't. You can never be too careful about those things!

Thanks for checking in. Have a wonderful weekend!

Thursday, August 14, 2008

Vote for US!

No, I'm not running for office. But my mom and I made* some great grab bags for a contest. The more votes we get, the better our chances for some fantastic prizes! So vote early, vote often.

Pictures are below. Vote here.

Thanks!


*I may have helped my mom a little. Not that she isn't capable of doing something so wonderfully fantastic, I was just trying to be a good daughter since she has other things going on in her life. I love you mom!

Too many doctors!

It's Thursday at the time of this posting and Samuel is scheduled for his 2nd attempt for a pulmonary function test tomorrow. If you are a faithful follower, you may remember we attempted this back in the spring with no luck. Samuel wouldn't fall into a deep enough sleep for us to begin the test. We have a few tricks up our sleeve for tomorrow, such as awake at 5:30 and no naps. BUT for a fun-loving boy who doesn't like naps anyway, this could perhaps be the best day of his life. This test is to provide us with a starting point. It will give us some baseline results for comparison in a few months and years.

We know Samuel likes paper at the doctors office. Well, he likes just about any paper. This is just a cute video taken at the pediatrician's office...before the 2 pokes.

video


I got an e-mail yesterday. The subject was "culture results". It might as well have said "We need to talk". You know the feeling. You know you are supposed to read it and eventually face the music but are a little scared of what it might say. Well, after reading a few other e-mails, I worked up the nerve to open and read this:

Hi Erica and Kevin,

Just wanted to let you know that Samuel’s culture just grew a “scant” amount of Staph aureus. It is the normal staph that is on our skin, etc. Not the resistant kind. He has grown this in the past. No change in treatment.

That wasn't so bad. I was relieved to say the least. One more culture that we don't have to worry about! Thank you Jesus!

Now on to the fun stuff. Look what Samuel can do now! Just who is teaching him all these moves? Once he is standing up, and while Lucy is barking you can hear Samuel purr. He rolls his tongue all the time. Even when screaming, he rolls his tongue. I'm glad I got it on camera.

video

I've also been asked to give more more more pictures. So here we go:

Samuel, nosy Samuel, as his fate walks through the door: the girls who gives the "pokes".


Posing, I promise. Big muscles!

Thursday, August 7, 2008

Update on Samuel


We took Samuel to PCH today for a follow up visit. He is 28.25 inches long and weighs in at 19 pounds, 9 ounces, just at the 50th percentile. This is a slight problem as the CF team would like to keep his weight up around the 75th percentile. To help pack the pounds back on, we are going to increase his calorie intake by making his milk more concentrate. It's usually 20 calories per ounce; we will make it 24 calories per ounce. Part of the issue is Samuel is sometimes too busy playing to eat so I am going to try to feed him more frequently throughout the day.

Samuel has also been having a problem sitting still long enough for a breathing treatment. It wasn't a problem when he slept most of the time because we could hold a mask to his face for 10 minutes with no problem. Those days are no longer. We are going to use a MDI, or inhaler, along with a spacer to give him the inhaled medicines. This will take much less time than before. He just needs to have the mask to his face for about 1 minute total and should be much more "doable" than before.

Like the last visit, he enjoyed playing with the paper on the table, but was really interested in the cords on the wall. He was too little to understand he was sitting on the back of a hippo but we all agreed one day he will think that is so cool.

The hypertonic saline study has been put on the back burner again for reasons I am not sure of. We were going to wait until Samuel began participating in the study to try to complete his pulmonary function test (PFT a.k.a. IPL) again. However, since we don't know when that will be, we need to do the PFT soon. We will attempt to do this again in about a month, I would guess. We have to go visit everyone in Maryland and Virginia first!

Samuel will go back to PCH in 2 months, which I am sure will feel like 2 weeks. Just think, in 2 months, we will be preparing for his 1 year birthday! But before birthdays and PCH, we go visit his pediatrition on Monday for a well-baby check. Well-baby = shots. Throat cultures at one place, shots at the other...poor little guy. :(

Thanks for checking in. Stay tuned for more updates later.

Wednesday, August 6, 2008

It's been 2 months

Already! It seems like we were just at PCH yesterday. But we are going again tomorrow, Thursday. Samuel is doing OK and this is just a follow up visit as we have to check in every 2 months. I'm not anticipating any problems except for his throat culture. I'm sure he's going to have some bugs in there. We'll see what he grows this time.

I will post again tomorrow with a summary of the visit. And hopefully something newsworthy will happen between now and then.

Have a wonderful day!