Weekend Retreat

Our Lady's Retreat Center in Stevenson, Washington
Views from the back deck: the gorge, the Bridge of the Gods, and surrounding mountains

A shrine of the Virgin Mother on the propertyA weather vane I found on the 20 acre property
The confirmation teens during the Friday night scavenger huntElla & me on our walk around the property on Saturday afternoon Our bedroom
I work part-time as a Pastoral Assistant for a local Catholic parish. Part of my job is teaching confirmation classes for teens. Every year I plan a weekend retreat for those teens that begins Friday evening and ends on Sunday with mass. This year we went to a beautiful retreat center not too far from where I live and had a wonderful weekend growing in our love for Christ. Because we have such an understanding, kind priest at our parish, I am able to not only bring Ella to work with me during the week, but she was also able to attend this weekend retreat with me as well.

There were eight other adult volunteers there, four teens who have already been confirmed who volunteered to help, and twenty teens who will confirmed in June which made for a very full house. With the spacious living arrangements, though, it really didn't seem like that many people at all. The teens listened to witness talks, participated in a scavenger hunt, went to reconciliation, and played card games and got to know each other better in their free time. We enjoyed delicious food all weekend prepared by a husband/wife team who always kept our bellies full.

It was so nice to get away and relax a bit for a couple of days, but I did miss my two guys so much! When I got home on Sunday afternoon I covered Nicholas and Jeff with kisses, spent lots of time playing with Nicholas, and even snuck in a quick nap. It was a great weekend...now time to get un-packed!

Practice Power Chair

On Monday Nicholas got a most wonderful Valentine's Day gift...a practice power chair! Nicholas has been practicing in a power chair since he was one-year-old but we had not been able to get a wheelchair in our home until this week. It's a Permobil chair with a fiber optic driving device which is very easy for Nicholas to navigate. It has been much more motivating for him to use his chair here at home than up at Shriners. He is practicing driving mostly in our living/dining room area because when he tried to visit his bedroom we realized how tight our hallway is when he smashed into the wall heater. We are hoping this rain will go away very soon so Nicholas can get some practice in outside. We live in the ideal neighborhood for him to practice driving-very little traffic during the day and wide open streets. We are hoping to order his very very own power chair close to his third birthday which is coming up in May.
Go, go, little buddy!

Ella is 5 Months-Old

Today our little love is five months-old! She's growing and changing so much on a daily basis. Sometimes when I go into her room when she wakes up in the morning, I am so amazed at how much she has grown overnight! Here are the stats on our five month-old baby girl:

• She is wearing 6-9 month size clothes
• She sat up on her own for several seconds today before she toppled over
• She giggles like crazy when she gets undressed
• She is very ticklish
• She loves to grab mommy & daddy's faces
• She is a social butterfly and loves when people hold her
• She rolls all over the place
• She loves to eat breast milk & rice cereal
• She LOVES her big brother and gives him "puppy lick" kisses
• She could jump in her Jolly Jumper all day long if we let her
• She loves to ride in the car
• She sleeps through the night, usually 8-10 hours & can put herself to sleep
• She squeals quite loudly-often
  

We feel so blessed to be parents to such a wonderful little girl!

Be Mine

Every February we celebrate Valentine's Day by giving flowers, candy and cards to those we love. We do this in honor of Saint Valentine. You may be wondering, "Who is St. Valentine"? Time to brush up on your Valentine's history!

Legend has it that Valentine was a priest who served during third century Rome. There was an Emperor at that time by the name of Claudius II. Emperor Claudius II decided that single men made better soldiers than those that were married. With this thought in mind he outlawed marriage for young men in hopes of building a stronger military base. Supposedly, Valentine, decided this decree just wasn't fair and chose to marry young couples secretly. When Emperor Claudius II found out about Valentine's actions he had him put to death.

Another legend has it that Valentine was an imprisoned man who fell in love with his jailer's daughter. Before he was put to death he sent the first 'valentine' himself when he wrote her a letter and signed it 'Your Valentine', words still used on cards today.

Perhaps we'll never know the true identity and story behind the man named St. Valentine, but this much is for sure...February has been the month to celebrate love for a long time, dating clear back to the Middle Ages. In fact, Valentines ranks second only to Christmas in number of greeting cards sent.

Another valentine gentleman you may be wondering about is Cupid (Latin cupido, "desire"). In Roman mythology Cupid is the son of Venus, goddess of love. His counterpart in Greek mythology is Eros, god of love. Cupid is often said to be a mischievous boy who goes around wounding both gods and humans with his arrows, causing them to fall in love.

Happy St. Valentine's Day from our home to yours!

photgraph by Heather Purdin of Click Photography

Bathing Beauties

A couple of weeks ago I had a super busy day and wasn't able to give Nicholas and Ella individual baths like I normally do. I decided to see if both their bath seats would fit in the tub at the same time, and thankfully, they did! It was a tight squeeze but I managed to bathe them both before bed. They enjoyed taking to each other and Nicholas laughed when Ella splashed the water. As soon as Ella can sit up on her own, we plan to get her a baby bath chair so she can take baths with her brother and that way they can both have more room to play.

Thrive

Photographs by Heather Purdin of Click Photography

It's been quite awhile since I have posted an update about Nicholas and how he is doing, so without further ado...

It took a couple of months but we finally figured out a diet that works perfectly for Nicholas (and lots of other SMA kids) called the Amino Acid diet. When Nicholas was discharged from the hospital back in August 2010, he left with a new gastrointestinal tube and was on a formula called Nutren Jr. After a couple of months of him being on that formula with severe instestional issues which included vomiting, constipation, and diarrhea we consulted with Tara Liston who is another SMA mom. Tara told us about the Amino Acid diet and that it works really well for her daughter, Brynlee. We decided to give it a shot and after just four days we noticed a tremendous improvement in Nicholas's overall health. He started to feel better, look better, and the digestive issues ceased. So we owe a huge THANK YOU to Tara...our little boy is so much better because of your help and guidance! Also, Nicholas's nutritionist was happy to learn about the AA diet because she also works with another baby who has SMA and will be able to share it with that family when the baby is no longer nursing. Here's the breakdown of the AA diet that Nicholas is on:

• Morning: 200-250 mls of breastmilk + Culturelle (a probiotic) + 1 ml of Enfamil Poly Vi Sol (a vitamin)
• Afternoon: 200 mls of water mixed with Neocate Jr. (AA formula) + 4 oz. juiced food (celery, pears, kale, spinach) + banana, avocado, & sweet potato
• Night: 600 mls of water mixed with Neocate Jr. (AA formula)
• Between feedings his g tube is flushed with water and Miralax
• He continues to sip water orally and tastes foods on occasion

Nicholas is happy, joyful, and talks up a storm! He has many new words and calls for mommy or daddy when he needs something. During the day he will yell, "daaad!" and I have to remind him that daddy is at work. He loves playing and has better hand/finger strength since switching to his new diet. He spends time playing games in the iPad, loves to watch movies on his DVD player, loves to listen to mommy read him books, and loves to play with his cars and toy balls. One of his favorite things to do is roll a ball on the floor and ask mommy to fetch it for him. He could spend hours playing the "ball game" even when mommy is worn out from getting that ball off the floor!

In the last week or so he has been wanting to sit up more often which is a huge improvement for him. He had a cold that seemed to hang on for about six weeks and during that time he never wanted to sit, he could only tolerate laying down. Recently he has been sitting up in his Tumble form seat and his high chair, and he enjoys being propped up on pillows to watch movies or read books.

His stats have been consistently good...his heart rate is typically between 108-125 and his oxygen levels between 94-99. We continue to keep him hooked-up to his pulse/ox during the day, at night, and when he travels in the car. He probably doesn't need to be hooked up to it as much as he is, but it gives us peace of mind and he doesn't seem to mind it at all.

Next Monday Nicholas will receive a loner power chair that he will get to use at home for a couple of months. We are so excited that he will be able to explore his own environment! I am looking forward to him being able to come visit with me when I am cooking in the kitchen, check out what dad is doing in the garage, and pay a visit to his neighbor friends. This is such a huge thing for us because Nicholas has been practicing in a power chair since he was a year old and the vendor at Shriners kept telling us that he was not able to get a loaner power chair for Nicholas because of the special driving device Nicholas uses. It's a fiber optic device and apparently too much of liability to loan to us. We stopped going to Shriners back in December when Nicholas wasn't tolerating sitting in his upright car seat and I honestly think it was a blessing because his physical therapist through the ESD (who comes to our home) hooked us up with a vendor she uses and he is fabulous! We met with Derek mid January and he said it would not be a problem to get us a loner power chair with the fiber optic driving device...and lo and behold, the power chair will arrive on Monday, about a month after our initial meeting!

Another wonderful thing that happened recently is that Nicholas was approved for Medicaid. I don't know why we didn't apply for it sooner considering that we paid nearly $8,000 last year in medical expenses. Now Nicholas is double covered and we don't have to pay anything out-of-pocket. Ella is also automatically covered by Medicaid as Nicholas's sibling which is a complete bonus. I can think of so many ways our money will be better spent now that we won't have to shell out tons of cash for medical expenses!

Nicholas adores his baby sister and they are starting to form such a sweet bond. Sometimes I ask him to "baby-sit" her for me while I am making dinner or taking a quick shower. When I come back I will ask him how she was and he will say, "Good!" and then proceed with toddler babble which I imagine is him explaining what she was doing while I was away. He likes to watch what she does and cheers for her when she's in her Jolly Jumper or when she rolls over. The only thing he is not fond of is when she grabs his ears, hands, or feet and pulls. She is strong and sometimes she hurts him (and us for that matter). So we have to be careful where she is placed when she is next to him since she doesn't understand the word "gentle" yet. I kind of have a feeling that gentle might be her first word considering how often we say it to her. Ella squeals with delight when she sees her brother and likes to fly over to him and give him kisses-it makes her laugh. It is so wonderful to see these two siblings interacting with each other and I already love how Nicholas has taken on the big brother role with his little sister.

Overall, Nicholas is thriving in spite of his SMA, and that, my friends, is a wonderful thing.

Yum, Yum

Earlier this week Ella had her first taste of real food-rice cereal mixed with breast milk-and she loved it! She gobbled up the whole bowl and has eaten it everyday since. Today she tried some squash too and made lots of funny faces while eating it since it is definitely not a flavor she is used to. She's such a sweet little baby and a really good eater.

We are so blessed to have an easygoing, joyful, peaceful baby.

Good Job, Nicholas

Yesterday Nicholas created this beautiful picture with his occupational therapist, Ashlee. He got to peel and stick each letter of his name and then he used sparkly glitter glue pens to make water and swimming fish ("ish" as he calls them). Nicholas was very excited to show daddy his masterpiece when he got home from work and we have proudly displayed his artwork on our fridge.

I also snapped this photo of Nicholas yesterday. He hasn't really been wanting to sit up in his Tumble form chair for about 6 weeks now, but last night he felt like trying and he did great! He only lasted for about 15 minutes but we are so proud of him! He is such a joy in our lives.

Good job, little buddy!

Spicy Chicken Tortilla Soup

I had a request for this soup which I have mentioned a few times on our blog, so I thought I would post it here. Enjoy!

INGREDIENTS:

• 2 quarts water
• 8 skinless, boneless chicken breast halves
• 1/2 teaspoon salt
• 1 teaspoon ground black pepper
• 1 teaspoon garlic paper
• 2 tablespoons dried parsley
• 1 tablespoon onion power
• 5 cubes chicken bouillon
• 3 tablespoons olive oil
• 1 onion chopped
• 3 cloves garlic, chopped
• 1 (16 oz) jar chunky salsa
• 3 (14.5 oz) cans peeled and diced tomatoes
• 1 (10.5 oz) can condensed tomato soup
• 3 tablespoons chili powder
• 1 (15 oz) can whole kernel corn, drained
• 2 (16 oz) cans chili beans, undrained
• 1 (8 oz) container sour cream
• Optional: tortilla strips/chips & grated cheese for garnish

DIRECTIONS:

1. In a large pot over medium heat combine water, chicken, salt, pepper, garlic powder, parsley, onion powder and bouillon cubes. Bring to a boil, then reduce heat and simmer one hour or until chicken juices run clear. Remove chicken, reserve broth. Shred chicken.
2. In a large pot over medium heat cook onion and garlic in olive oil until slightly browned. Stir in salsa, diced tomatoes, tomato soup, chili powder, corn, chili beans, sour cream, shredded chicken, and five cups broth. Simmer 30 minutes.

Note: To save time, I often buy a roasted chicken from the supermarket and make the broth without the chicken. The total cook time then reduces to about 45 minutes.

Jeff's Golden Birthday

Last Saturday Jeff celebrated his 29th birthday on the 29th of January. We had his friends over for a poker party to celebrate his special day. We spent most of the day cleaning and re-organizing to fit in two large poker tables in our quaint living/dining room. I made lots of food for Jeff's special day: chicken tortilla soup, a big sub sandwich, tortellini pasta salad, a veggie tray, and artichoke dip. Some of our friends also brought cookies and rice krispy treats so there was plenty of food for everyone.


The birthday boy and his baby girl

We started the game around 7:00 p.m. and the last people didn't leave until 3:00 a.m.! It was so nice to see everyone and Jeff really enjoyed himself.


With it being cold and flu season we thought it was best for Nicholas to hang out in his room and watch some DVDs and he was perfectly content to watch some of his favorite movies with his stuffed puppy pal, Henry. Lots of our guests stopped in say hello to him which made him very happy.

Unfortunately, luck was not with Jeff on his birthday because he didn't end up winning the poker game, but he had a great time socializing with his friends after he lost all his chips.
In fact, Jeff and Kris started their own game of Scrabble on the iPad...

and played with Ella.

Jeff's very best friend Jordan, was in town from Australia and Jeff was so happy that he came by to help celebrate his birthday. Ella was just excited to taste his jacket :)

Happy birthday, honey! You are the light of my life and the joy of my heart. Cheers to the last year of your 20's!