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

HOME

William was able to come home from the hospital Monday evening.

sick days:

He is doing well, active and playful, but still has significant wheezing and rattling in his chest. CF test came back negative, so that's a plus! We still have a few other tests to complete in the next few weeks.

feeling better:

Thanks for all of the prayers and concern for our little William. He's such a great little guy! I am thankful that he is held, safe and secure, in the Lord's hands and that there is nothing that happens that is not only in His control, but in His purpose and plan. Though I am surprised and caught unaware when things like this happen, He never is.

"Many, O LORD my God, are thy wonderful works which thou hast done, and thy thoughts which are to usward: they cannot be reckoned up in order unto thee: if I would declare and speak of them, they are more than can be numbered." Psalm 40:5

Update

William is looking very well! I only have a sec to update so I'll just give the low-down.

To look at him, you can't even tell he is sick. However, his lungs sound gross and his x-ray looks terrible! The doctor and the nurse were both very surprised when they saw the x-ray. It is hard to believe it is that bad when you see this happy-go-lucky child. The respiratory therapist was amazed at how good natured he is and how he just takes it all in. Anyway, here's what we know:
Cardiac size is normal. Both lungs are hyperinflated. Pneumonia appears in the right mid lobe, along with what appears to be old pneumonia scarring throughout. Opacity (dark spot) in the right lobe which they believe represents chronic atelectasis. The crude explanation of this is that it is a blockage in the bronchioles which prevents air from getting down to the alveoli, which causes the alveoli to collapse. He also has a chronic post obstructive change.
William is responding well to treatment. I believe the IV fluids are a great benefit to him right now. He is also on an antibiotic and steriod through IV and another antibiotic orally. Unfortunately the two conditions do not respond to the same types of antibiotics. They will remove the IV around 2am and begin the 2nd antibiotic orally. If he continues to thrive off of the IV, they will possibly let him come home tomorrow. They are also going to try to run the sweat chloride test tomorrow instead of Tuesday. We will have some other testing later on if that comes back negative. Apparently there are a few issues that could result in these types of symptoms. So I guess the testing is back on...

"This is what the LORD says— your Redeemer, the Holy One of Israel: 'I am the LORD your God, who teaches you what is best for you, who directs you in the way you should go.'" Isaiah 48:17

Admitted

They decided to admit him as he has a pretty serious pneumonia (again). Fortunately, I think we caught it very early. He just had an x-ray on Tuesday and there was no pneumonia. The x-ray tonight (last night - I don't know anymore) showed a significant, yucky case. We'll see what tomorrow holds.

ER

Unfortunately, the breathing issues did not stop with the Vest like I had hoped. William is panting and his ribs are pulling in when he breathes. Michael has him at the ER now so we are just waiting to see what happens. Appreciate the prayers.

Patience is a Virtue

Take a good, hard look at this face. This is the face of a real trooper. Tuesday morning started off like most: we completed all of our morning tasks preparing William for PT and we were off. We met with one of his PTs and an orthotist to discuss some different bracing options. Together they determined that we would need an x-ray of William's hips before we proceeded with more bracing. Then we headed to the pulmonologist, without lunch, for our 11:30am appointment. I'll just say that after spending 3 and 1/2 hours there, grabbing a very late lunch, then waiting another 1 and 1/2 hours for the lab/x-rays, William was a much happier camper than I was. Anyway, we did learn some valuable information.

William's lungs are much worse off than even I suspected. We have now changed some treatments as follows:

Old therapy

Well days - VEST 2x daily, 20 minutes each

Sick days - VEST 4x daily, 20 minutes each and nebulize each time

New therapy

Well days - VEST 4x daily, 30 minutes each and nebulize each time (before breakfast, before lunch, before dinner, before bed)

Sick days - VEST 6-8x daily, 30 minutes each and nebulize each time, possibly with a second medication in the nebulizer each time (medications can't be combined in the nebulizer, so this will be additional nebulizing time) and a third oral medication

It was stressed that we must protect his lungs. There are several things to start with, some of them we are already doing, but some that we will have to incorporate.

Since we were already doing the lung x-rays, we called the doctor to go ahead and complete the hip x-rays as well. I tried to take a picture of one of them, but it is through the door and you can see the backyard in the back. I think it is still clear enough to see that there is a definite issue. I don't know much about that yet, but should be learning more in the days to come.

As frustrated as I can get sometimes, here is what it takes to make my sweet little boy happy:

Simply waltzing with Mommy while singing, "I could have danced all night..." He loves it! It reminds me of how Jesus told His disciples that whoever did not receive the kingdom as a child would not enter in. He wasn't saying that we had to come to know Him when we where children, but that when we come to Him it must be with a pure heart, trusting and loving, just as a little child trusts and loves his parents faithfully. I pray that God will take my heart of stone and make it as trusting and pure as that of my little boy's.

"Verily I say unto you, Whosoever shall not receive the kingdom of God as a little child, he shall not enter therein." Mark 10:15

Miscellaneous

We've been kind of busy for awhile (isn't everybody?), so I haven't been able to post everything that's been going on. Here are some fun pictures, though, without the entire story to go along...

visiting Pappaw

Having fun on the exercise bike

Another lost processor found - this time stuck in the car seat

Does this dog look happy to you?

SWEET, SWEET, SWEET!

"Light is sown for the righteous, and gladness for the upright in heart." Psalm 97:11

William is 3!

I can't believe my little boy is 3 already! Wasn't it only a few weeks ago that I was holding this precious baby in my arms? He looked so much like Calvin does now! Time can be so deceptive. As each day passes it lures us into thinking that we have so much of it left, but as I stop to realize how quickly these 3 years have passed, I know that time is fleeting. It is a bittersweet knowledge, as I am thankful and happy to see each new growth come, yet saddened at the sweet little things that are gone forever...

It is busy as usual in our household these days. William has been sick for the last few weeks with sinus drainage and ear infections. I believe (dare I say it) that he is starting to get better. Of course the movie is in full swing. Sarah and Sydnee have new glasses. We are working on some new bracing for William. We are undecided on which route we will take as of yet, but I am excited to see what is in store for him. I will try to update as I have time, but be forewarned...I have a very good feeling about it!

"And my tongue shall speak of thy righteousness and of thy praise all the day long." Psalm 35:28