Taking a Break

I won't be blogging for awhile - working on the new house. We're having everything shut off tomorrow and won't reinstate Internet for a month or so. For those family members who check in on William, I'll be sure to call if there is anything noteworthy - otherwise, it's business as usual! His new braces should be up and running at the end of this week, so read up in July if you want to see how he's done with them!

"Unless the LORD had been my help, my soul had almost dwelt in silence." Psalm 94:17

Another Test Down

The swallow study came back normal. It was quite interesting to watch. Sarah set up the video so she would be able to include some of it in his film, but she didn't get to stay in there with us to watch because of the radiation. It was kind of neat to see the food going down his throat on x-ray.


We bought a house! We are working on it this month and planning on moving in by June 1st.
Sarah is working fast and furious to complete her movie by the June 1st deadline! We'll see...
William's long leg braces came in, but there is a major problem with them and we have to send them back in. I don't know how long it will be before those are up and running.
Other than that, it's life as usual: therapies, school, doctors. I think we'll take a few weeks off school. The girls have been working hard...they deserve a break!

"Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls." Matthew 11:29

What do you do with 100 hours?

William got his vest on January 16th of this year, just 3 and 1/2 months ago. At the suggestion of the respiratory therapist, we began his sessions with "two 20 minute sessions daily or four 20 minute sessions if ill," but at the request of his pulmonologist, we have been doing "four 30 minute sessions daily or four 40-48 minutes sessions if ill." As you might suppose, this takes up a great deal of his time. It has proven to be very beneficial, but not as perfect as we had hoped. He is now waiting for another machine to assist the Vest, called the "Cough Assist." It will be used in conjunction with the all of the equipment he already has. We are praying that all of these things together will keep his lungs clear. We realize how important airway clearance is for his future health.

Last night he hit a milestone: 100 hours!

"The Spirit of God hath made me, and the breath of the Almighty hath given me life." Job 33:4

Time

Monday was a crazy, all-day-long, kind of day that started off frenzied. I forgot William's glasses and because we were scheduled to leave one appointment and head directly to the next all day I knew I wouldn't have any time later on to go get them. I left him at therapy with Sarah and Abby and took all the other children back home with me. While I was gone he initiated a stand on his own. They all thought he was going to take off walking, but he didn't. It got me to thinking how precious and how valuable time is. It's so deceptive, though. It lures us into complacency with its promises that it will always exist, that another day will always follow like the previous one. Then one day we awake to find our babies grown...the diapers are gone, pacifiers have vanished, and the sweet baby voice has disappeared. When did it happen? In all of the business of life, what are the "lasts" that I am missing? I look at my "older" children and they are so mature and nearly grown. When did that happen? Can I remember the last time Sarah pulled on my shirt to ask me to carry her, or Abby crawled up into my lap for me to rock her, or Sydnee saying, "Me wuv oooo," or Sherrod snuggling up next to me with her blanket tucked under her arm and sucking on her thumb. All of these things are gone and have been for some time. So what things are my youngest 5 doing that will be their lasts? Will I mark or remember them? It makes me a little sad to think of...

This week has been crazier than usual, maybe because we're trying to get back in the swing of things following William's illness. He is still rattly, but able to work on all the therapies again. Here's a little of what we've been doing:

After PT, then AVT, we headed out to William's mapping session. He did a great job with conditioned response! Very exciting! He also got his very own, brand new, Nucleus 5 processors! Yea!

Then we headed to see Dr. Domek for Sherrod's HA1C testing. All of the children over 2 got their blood drawn for yearly family antibody testing. This was William's first time and he did great! Didn't cry a bit!

The next day at PT we did EMPI placing for the scoliosis. William wasn't super excited to have to hold still, but he did alright.

Calvin, my little 4-and-1/2-month-old baby, is already sitting alone. Unbelievable!


The little girls working on school


A little relaxation


On Wednesday we had a follow up appointment at the orthotist's for William's HKAFO fitting. This is the Hip-Knee-Ankle-Foot-Orthosis that I am referring to as the long leg braces.

During another spell of waiting, Selah came to me and said, "Mommy, can we go to the P-R-A-K?" This is a 4-year-old's spelling of "park." Not bad.

PT and OMST as usual.

Sarah is still working hard on her movie. Script is coming along, but there is no way she will make it before the early bird deadline of May 1. She is still hoping to make it by the actual deadline of June 1. Next week we close on our house and William's long leg braces should be in!

On a different note, I received this very sweet gift this week from my sister-in-law, Lisa.

The face of the watch is a family, with the parents and children all holding hands in the shape of a heart. The back is engraved with, "The love of a family is life's greatest blessing."

As Mother's Day fast approaches, I'm reminded that children are our proof of a fruitful life, the reward of an effective life, the evidence of effective service. My children are my "stephanosa," my crown and reward. My heart yearns for them and desires not to miss a single moment of their growth and successes.

"So teach us to number our days, that we may apply our hearts unto wisdom." Psalm 90:12

TA-DA!!!

One of William's 3-year-old birthday pictures - special thanks to Liesa and Laci (PTs), and to Kimberly at JCP Portrait Studio, who always does such a great job taking all of the children's pictures!

Okay, a few explanations...several weeks ago I told William's PTs that my goal for him was that he would be standing independently by his birthday, at least long enough for me to get a picture. As you can see, we succeeded! I am so excited! He is holding a stand for about 45 seconds at a time! If you're wondering what's on his foot, it is a temporary foot lift that we happened to be trying at the time of his pictures to see if it would help with the length difference. And, last but not least, no, his pants aren't too short...they're long shorts!

Here are his other photos:

Isn't he just so precious?

"Doth not He see my ways, and count all my steps?" Job 31:4