Happy New Year!

I usually set some resolutions for the New Year but I tend to fizzle in my commitments as the year progresses.  I want this this year to be different.  My life and the life and dynamic of my family has significantly changed within the past two months with our newest addition, Luke!  Reflecting on what I want this next year to look like for me, I came across a section in a book that reminds me of what’s most important:

“Clearly God places in the hands of parents…the responsibility for teaching their children to love God and obey His Word.  And as parents we have been specifically empowered by God to pass on His commandments from generation to generation.”

I’m going to try my hardest to stick with my wishes to exercise daily, read more, take my days a little slower to soak up all the beauty around me and  try to get more SLEEP…but I CANNOT fail in my responsibility as a mother whose #1 goal is to pass on the Faith to my kids.  My children could grow up to be very smart, athletic, rich, popular, etc…but if I have failed to instill in them the importance of faith and love of God and neighbor I have failed them in the biggest way possible.  I want to be able to stand in front of my Maker when my time comes and say that I did my best to point my children towards Heaven.

So of all the things on my wish list of things to work on, the most important for me is to not just be a good mother but a godly mother.

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Mikey’s Wish

[from Prader Willi Syndrome Awareness-Mikey’s 2012 Wish]
I asked our son Mikey. . .”What would you like for a New Years Wish, if you could have one for 2012?”

Mikey: ”For people to know what it feels like to have Prader Willi Syndrome. . .”

I asked him. . .”How would they know that?”

Mikey: “They could do some of the things that I feel every day, just for one day and maybe they would understand.”

I am asking everyone that “likes” this page to take the Prader Willi Challenge. Pick TWO things from the list that Mikey created and complete it for one day! That is all, ONE day. By doing this you would only be experiencing two things that a child feels with Prader Willi Syndrome. Not ½ of how they feel, not even ¼ of how they feel, just two things for ONE day. If you pledge to take this challenge please post what you have chosen to do and message me your address. We will send each and every person that pledges to take the challenge a personal gift from Mikey to support Prader Willi Syndrome awareness! Thank you for support all who have Prader Willi Syndrome and their families!
Please share this with all that you feel will support us!!

1. In the summer, turn up the heat and wear extra clothing or in the winter, wear very little clothing and turn the heat down.

2. Only eat ½ of your meal, breakfast , lunch or dinner and leave the table hungry.

3. Go to an office or school party with all the extra food and goodies before eating lunch and DO NOT EAT ANYTHING!

4. Put cookies, cupcakes, or other goodies that you like on the counter and be sure to walk by them every time you go in the room but you can NOT eat any!

5. When you are really hungry watch someone else eat something that you LOVE, knowing you cannot have it.

6. Do something out of the ordinary or different in public and look around to see someone stare, laugh or tease you because you are different.

7. Lock your cabinets or refrigerators and give someone else the key. Tell them to only let you eat when it is meal time or time for a snack. DO NOT eat in between meals.

8. Restrict your calories to only 1100 calories per day including all meals and snacks. Count all calories including drinks. ONLY eat 1100 calories!

9. Drink only sugar free, diet drinks or water do not drink liquids that contain calories.

10. Never go into the kitchen, pantry or cabinets unsupervised. Only enter the kitchen or dining room if someone else is with you and can be watching what you are doing.

Friday Video Frenzy!

We took several videos of Mary and Luke in the past few days.  Here they are for your pleasure.

Mary and Luke take a bath

Cooking with Mary and Momma

Luke wiggles his nose

Luke stands.  (Luke is a 15 month old with Prader-Willi Syndrome (upd) which means he has very low muscle tone.  A normal 15 month old walks by this age, but Luke’s condition makes him unable to even crawl at this age.  Standing is a big deal.)

A quick note about feeding pumps

Our Enteralite Infinity feeding pump by Moog (formerly a maker of fine synthesizers) went on the fritz. For several weeks, adjusting, poking, prodding, duct-taping, etc. took an average 30-45 minutes per feeding to ensure the bag and pump were properly aligned and calibrated to allow the feeding system to work as designed.

I finally called our med-tech company rep and complained. He brought over a pump called “Kangaroo Joey” and every feeding since has worked like clockwork. Pour the formula in the bag, thread tub through pump, hook tube to Luke, press start. Every time.

If you’re having problems with your enteralite infinity, I strongly suggest switching over to the Kangaroo Joey.

Back, finally!

Anyone who says “parenting is boring” is obviously doing it wrong.

To recap, Luke had an emergency room visit due to a high fever and aggravated cold.  We wanted to rule out pneumonia.  Doc said no pneumonia or flu, just a little bronchitis and an ear infection.  Prescribed z-max.

We planned to leave Monday to return home, but Mikki had a “severe” sinus headache and went to the urgent care facility to get her head checked, causing us to stay an extra night.  Tuesday, after we left for home, Mikki and I decided it would be good for me, Mary, and Luke to go to the urgent care after our return to check on our various colds/coughs.  At the doc’s office, we discovered Luke had a case of aspiration pneumonia created when he aspirated after vomiting as a side effect to his antibiotic for treating bronchitis and ear infection.  Great.  Antibiotics failed to clear up his ear infection and caused him to catch pneumonia.  Merry freakin’ Christmas.  Anyway, Luke got a shot and some antibiotics, then we followed up the next day with his pediatrician who gave him another shot and told us to continue Luke’s antibiotics.  He’s been much better.  Hasn’t had a fever at all, coughing has greatly decreased, no more wheezing.  Thank God we didn’t need a hospital stay.

In addition, the doctor diagnosed Mary with an ear infection and bronchitis, and me with bronchitis as well.  Today we’re all on antibiotics, feel better, and show almost no sign of sickness.  The video below is Mary 30 minutes after returning from the doctor with an ear infection.

She gave us no indication that her ears hurt.

Anyway, we had a great time with the family.  Karson (5, PWS UPD) finally got to hold Luke, and all members of the family fell in love with Luke.  Enjoy the pics.

  • Karson’s Mom, Mandy, with Luke

Luke and Karson (both PWS UPD)

We drove around town looking at Christmas lights. At one point, someone noticed Mary and Luke holding hands. The sweetness of my children!

 

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Happy Birthday to Me!

Well today is my 29th birthday!  If anyone were to ask me 5 years go if by 29 I thought I would have two adopted children who are only 4 months apart and one of which has special needs I wouldn’t have believed it.  As I look at my life and see God at work I am thankful for His action in my life.  If I had just done what I wanted, what was fun or convenient for ME I would have missed out on so many blessings.  I’m still learning that if I just step aside and let God take the lead, things beyond my wildest dreams or expectations happen.  His plan for my life has been more fulfilling than anything I could have dreamed up on my own…so indeed it is a good birthday!

 

Jingle Bells!

Yesterday was a little stressful.  To make a long story short, we found out Luke has an ear infection and bronchitis when he went on a  trip to the ER for fear of pneumonia. No pneumonia praise God!

So let’s reflect on happier times on the Sciba home.  The night before last we had some fun with Jingle Bells and reindeer ears!  Enjoy!

And Mary finally discovered that she can see herself on pictures taken from our camera so she was trying to see herself before I could get done with the picture!