Care for the Caregiver Retreat

Yesterday, CREDO (Navy chaplain org) offered a day retreat for those in the role of caregiver. It was 7 hours, and they provided childcare free! I honestly didn't care if it was the most boring 7 hours of my life-I knew I had to take advantage of it. Two of my favorite MOPS moms joined me. All of our kids are used to playing with each other, which made them all feel like they were just getting a really long play date! (By the way-these are 2 great friends. One brought me a strawberry cake Fri night just because I had such a hard week.)

It turned out not to be boring at all. We had 4 themed sessions that would introduce a topic, and then we went around the table answering discussion questions. Here were a few things that stuck with me:

1. Explanation of why to use "I" instead of "you" when answering a question-In our English language, we tend to use the word "you" when describing incidents. This allows us to disassociate from our feelings and experiences. Using "I" makes us take ownership and "reclaim" our story.
2. Stress Assessment-I took one of these a year ago and my numbers were off the charts. It was encouraging to take the assessment this time and score in the borderline high stress. And some of the things that added to my score occurred a few months ago and aren't happening any more. It's nice to be reminded that stress comes in waves, and it can decrease!!
3. "When I weave, I weave." We watched a video of a photographer from National Geographic, who walked us through what his process is in discovering the best shot. He was once assigned to photograph a weaver, and when he asked her what she thinks about while she's weaving, she said simply, "When I weave, I weave." I must practice that discipline of simplicity. When I'm with one of my children, I'm with them. When I listen to a friend, she has my full attention. When I'm driving, I'm ONLY driving!

The chaplain invited a friend of hers to visit with us during lunch. His name is Keith Barany, and he's a comedian who has done a bunch of stuff. He currently writes for Jimmy Kimmel, although it's not in his bio. He was funny, except for the one question I asked, "What's Jimmy Kimmel like?" Suddenly he had only one word, "Nice". It was awkward! But he had some good jokes, and I guess his emphasis is PG Comedy.

Leading up to Sat, the organizers were asking me all kinds of questions about Sam's illness. Her breathing treatments & chest PT are done in the morning and at night, but she has to take her enzymes before she eats (in other words, all day). At one point I thought they may not let me come, but they allowed me to go into the childcare room to administer her meds throughout the day. I couldn't help but think of the women not present because they care for children who have really difficult special needs. Those women can't go to something like this, and my heart breaks for them.

One cute thing that happened. When I went to the kid's room for the morning snack, the workers realized that Timothy and Samantha were siblings. Samantha had called Caedmon (Amber's son) "my brother". I think the workers really thought they were brother and sister for a while. Ironically, as they were telling me the story, Timothy said, "Caedmon is my brother, too". Sweet, sweet friends.

Wordless Wednesday & Special Exposure Wednesday

Want to post your own picture? Check out Wordless Wednesday and Special Exposure Wednesday.

Timothy's Birthday Party

As I was posting pics from Caedmon's party, I had this odd realization. I never posted pictures from Timothy's birthday party! It was almost 3 months ago, but I'm doing it anyway!


Deciding on what to do was quite a process for me. Timothy LOVES kids, but because of his sensory issues he gets overwhelmed by them a great deal. And I really wanted to go somewhere so that I didn't have to clean up after the party.

He had actually done well at a Chuck E. Cheese party earlier in the year (I know, shock!), but there were a few issues that made me decide against it. He had a really hard time with the giant animals that make noise. He found some Mario arcade game and watched it the entire time we were playing games. This is probably why he did okay-just blocked out all the other visual and auditory stimuli. And like I said, he just stood by the machine and watched others play-he's such a perfectionist that he has to observe something for a while to know that he can do it before joining in. He never played it once while we were there. I didn't want him tuning out everyone and everything at his own party. This game made him very unwilling to leave. And lastly, Samantha HATED it. She clung to me the whole time-Dan was gone, and it was awful.

For a while I was going to rent a bouncy thing and set it up at our playground w/in our military housing. But by early June it was hot here, and heat is a huge trigger for Timothy. Our playgrounds don't really have much shade, so I nixed that idea.

And then I was at McDs one day and saw a family having a birthday party, complete with presents and birthday cake. I remembered McDs birthdays were big when I was growing up. Turns out the McDs here don't "host" birthday parties, but the manager was quite willing for me to come and reserve tables, decorate, and she provided plates, napkins, forks, etc. I bought happy meals for all the kids, and they got to play on the playplace. Simple and fun.


It was NASCAR themed. Timothy doesn't have a "driver" or anything, but these 2 cars came with the cake.


Timothy actually got tons of presents. Here is his first $5 that is going to save for his Nintendo Wii.


The manager did give out frisbees...


And I did simple goodie bags (I printed the b-day cake on my computer and put each child's name on it).


The nicest part was had a few parents tell me THEY actually got to sit and have a conversation. There was plenty of room, and they didn't have to worry about where their kids were the whole time. It was nice!

Caedmon's Birthday Party

Who needs scheduled games when kids can find any way to entertain themselves!

The birthday boy decided to try this...


Which Maili thought was a great idea!


Timothy had to join in.


By the time Samantha joined the fun, Caedmon stepped it up a notch. Samantha decided to copy him.


My favorite part was that they thoroughly enjoyed posing each time so that I could get pictures of them. These children all play so well together, and it's very enjoyable to watch them do it!

Back from the Doctor

We were not admitted!!! Yippee!!! I want to do cartwheels!

Her O2 level was 98

Dr says her lungs "whistle a little bit, but she sounds pretty okay"

She told me her thoughts of how she would proceed, but paged Dr. W (Sam's dr). This is the normal procedure. He makes the decision whether he's there or not. Samantha is going back on an oral steroid for 7 days PLUS she will start a daily steroid along with her current treatments.

We will just add the third part onto what we do now morning and night:

Albuterol (through nebulizer)-about 15 minutes
Chest PT-about 10 minutes
**Pulmicort (through nebulizer)-hopefully only 5 minutes??

Both the albuterol and steroid can be given in an inhaler form, which would decrease the time from 20 minutes to about 20 breaths. Problem is Sam doesn't like the Aerochamber (mask) against her face, and it has to seal in order to work. She's been doing better lately playing with it, so I'm really hoping we can switch over. It would really cut down treatment time!!!

Living Worry Free

Our pastor is doing a sermon series on the Sermon on the Mount. It's been great! I'm typing up the sermon notes from yesterday so that Dan can see them. Hi honey! And I'm also writing this to be reminded not to worry! Samantha finished her steroid last Tues and her antibiotic on Fri. Sadly, her cough returned yesterday, and it sounds so painful. She's in good spirits, but we have an appt at noon today. I have a hard time thinking she won't be admitted, but I am reminding myself not to worry.

Matthew 6: 25-34

Jesus says there are 4 problems with worry:

Worry distracts me (v 25)
Worry devalues me (v 26)
Worry doesn't work (v 27)
Worry dishonors God (v 28-29)

The root of all worry is doubting God's goodness. Worry is practical atheism.

Remember to...
Live one day at a time (v 34)
Do one thing at a time (v 33)
Trust God all the time (v 31, 32)

Replace panic with promises!!! (He listed a bunch, but I don't have time to copy.) Here's a website he referenced: http://www.olivebranch.com/promises/promises.htm

Definition of worry: Assuming responsibility that God never meant for me to have. Opposite of worry is trust.

So, I'm headed to the dr. appt now, and I'm remembering the truth of God's word as I go!

Koko, the Gorilla

Each week a child in Timothy's class gets to take home a stuffed animal named Koko. Last Monday, Timothy's face was beaming as he ran to me with a giant green bag. In the bag was Koko, her pajamas and blanket, a book "Koko's Kitten", and instructions. Timothy was to take Koko on whatever adventures he was a part of this week, and either draw pictures or take photos and write a story. We had a great time this week with Koko

First, Koko got to try out the swings (For more works of art check out Magic Marker Monday).


Koko played on the computer.


She drank milk from a straw


Koko and Timothy beat Dan and me at Scooby Doo.


She went to AWANA with Timothy and learned that God created all the animals, even gorillas!


On Saturday Koko attended a soccer themed birthday party.


Where all the silly kids were putting cones on their heads-she had to be a part!

Koko had great adventures, but we learned a lot by having her home with us. There is a real gorilla named Koko who uses sign language to communicate! And she loves kittens and has had a few that she has treated like her own babies. It's really a sweet story, and you can learn more about Koko and her kittens here. There is even a page for kids!

1st School Field Trip!

Timothy had his first field trip in kindergarten yesterday. This was a "school wide" field trip to see the H2O exhibit at the Natural History Museum. I can't remember if I've mentioned his school is K-12. I think there are about 250 kids at the school, which is probably the equivalent of an elementary school going on a field trip, right? The staff has identified that Timothy gets overwhelmed by the "big kids" from 2 other events, so I was given the option to drive Timothy directly to the location of the field trip AND I was allowed to bring Samantha!

We got to the museum before the buses, so we took some pictures.

How great of a photographer is Timothy?

One part of the museum had multiple puppets, and I have some great pictures of T's classmates. I won't post them since I don't have parental permission, but here are my two...

Opinion of the exhibit: I thought it was okay. There just wasn't much to it, but what was there the kids enjoyed. Thankfully, we got to see everything the museum had to offer as well. I think the kids actually enjoyed those parts (like the puppets) more than the water exhibit. The best part of the exhibit was a 35 minute movie we got to watch. Wonderful video of sea life and all kinds of animals and plants. I couldn't believe how long our kindergartners were able to sit still and be quiet (Samantha fell asleep), but they did great!

Here is the entrance to the exhibit. You can see "WATER" in the top right and "AGUA" right above T's head. Ideas of the other languages?

T really liked running around in the "mist". Samantha not so much!

This blue is actually more realistic. My flash kept making everything look brighter than it was...


Lots of fun!

CF Talk

I know I missed my monthly "CF talk" on the 8th. I was going to talk about the quarterly appt, but since it was more eventful than I expected I talked about it early. I think I had had about all the CF I could take! Here are a few random thoughts, though:

1. "We may have to admit her"-those are scary words! With Sam having CF, we live with this odd mixture of reality and denial of the disease. We've always known she would eventually be admitted. CF "tune ups" are usually about 2 weeks long, but the ominous phrase had never been said to us. Somehow I think I will be just as shocked the first time she actually has to be admitted.

2. As you know, we went back to the hospital 2 days after our appt to get her O2 levels checked. They were up, but Sam's weight had gone down. She lost 1.5 lbs in 2 days!!!!! Weight is always a constant battle. We have been off the steroid for 3 days and finished the antibiotic yesterday, and she is gaining again.

3. Samantha has entered a new level of maturity in her illness. I don't know if it's just that she's getting older or if she "sensed" the urgency or concern during this particular sickness. She's starting to take ownership of her treatment. For example,

• If she asks for something to eat, I'll say, "After breathing treatment". We can't do chest PT after she eats, but they are combined in my mind (breathing treatment/chest PT) because we do them back to back. I just don't say the chest PT part. But she'll correct me every time, "Breathing treatment AND love pats (our phrase for chest PT)". Yes, Baby Girl, that's right.
• She has been a CHAMP at liquid meds. Prelone (her steroid) tastes awful, and she is drinking it all down like it's juice. More importantly, she is initiating requests for medicines. If I'm getting something for anyone, she comes and asks for "medicine". Or sometimes, instead of asking for food when she's hungry, she'll ask for enzymes. She knows she has to take them before she can eat anyway!

Next month: Video of breathing treatments and chest PT

San Diego Weather

As everyone knows San Diego doesn't really have drastic changes in the weather. I'm from Texas where we say, "If you don't like the weather, just stick around for a few hours-it will be different!" And even when I lived in the Philippines, half of the year was rainy, with a typhoon here and there to mix it up! Of course, people are willing to buy extremely overpriced homes (or were willing before this market) just to live in this climate.

It doesn't prevent San Diego from having weather issues. Last Oct, we had horrific fires that engulfed the outskirts of the city due to dryness and high winds (and a spark). So, please feel sorry for us...we have to take precautionary measures because the forecast today is a high of 86!!! You think I'm joking. Last night, we received an automated message from Timothy's principal warning us of the heat today: to bring kids in cool clothes, pack extra water bottles for them to keep at their desk, put sunscreen on them. They will have minimal outside activity today!

I know the logic-there is no A/C in the room (that's the norm here), and when the kids have hours of no relief it gets bad. Timothy is particularly affected by extreme temps, so I completely understand and appreciate the lengths they are going to. But I can't help but laugh at what qualifies as a weather incident in this city.

Random Things Meme

You all are going thinking, "Didn't we just see a Random Things Meme?" Well, I did one back in August, but I've been tagged again by Tara at My Life with Six Kids (6 boys, that is). I always want to give some linky love, and I can think of 7 new "random things". So here goes...

1. I workout-not only do I do cardio 3x a week, but I am now doing strength training.
2. It's the reason I'm never at home, and my google reader is up to 476 (again!)
3. I wasn't into stuffed animals as a girl. My daughter loves them!
4. Last night I tried to see which channels we would get if we got rid of cable, and we don't get PBS. Doesn't that seem odd?
5. In the near future, I'll be attending an all school field trip to see the Water, H20=Life Exhibit at the San Diego Natural History Museum, the San Diego Zoo, and Legoland. Future blog posts.
6. I've lived in San Diego 3 times: 1st time 18 months, 2nd time 14 months, and at the end of Oct, I will have lived here for 14 months again. All put together that's almost 4 years, which is the longest I've lived anywhere in the 17 years since I've been an adult!
7. I look forward to Timothy's homework!

Normally, I would tag 7 people, but since I've done this meme before, I just don't think it's right. Let us learn some new random things about you!

Thankful

Dan already emailed our friends and family, but I wanted to update those in the blogging world who I communicate with solely here! Sam's oxygen stats were up to 96 today, so instead of being admitted we were allowed to come home. I am thrilled with the results! Thank you to all of you for your prayers and concern. I have had multiple offers of people willing to pick Timothy up from school if Sam was admitted, and it's times like these that you learn what an amazing church family you have!

Honestly, this was terrifying to us. It was our first real CF scare, and the first time "hospital" has even been uttered by our doctor. We have been blessed in so many ways, and tonight I just praise the Eternal One. He is worthy to be praised.

Emotional Day

I have a few different things I want to blog, but I'm just not getting to it these days. Samantha and I are out of the house every morning, and then I use her nap time to get things done around here. Hopefully things will settle down in the next few days, and I will get to it. Today was an extremely painful day. Timothy was violent at school, and I'm at a loss to understand it all. We have a meeting scheduled Mon that will include 10 different people brainstorming a plan.

Even more painful today, Samantha was almost admitted to the hospital. Her oxygen levels are the lowest they have ever been. She was prescribed an antibiotic and a steroid, and if she shows no improvement in 2 days she'll be admitted. I'm confused. She has sounded worse before with better oxygen levels, so I'm feeling like my instincts are not very trustworthy.

Please pray for my children.