2010

I am sitting in the waiting room while Michael is having surgery to have skin cancer removed. CNN is on the television and they are doing a "2010 Year in Review" that has been somewhat interesting. They've done the top 10 interesting stories, people, and now they are on the top 10 innovations. Two of these innovations were extremely interesting to me. #6, which really came in at #1 in my book, was that scientists have built and installed new lungs that work well in lab rats! What amazing technology! They are planning on using it for COPD and Cystic Fibrosis patients.
The other innovation that I found quite interesting came in at #3 on the list: bionic legs. These were long pieces of metal that fit around a persons leg and somehow hooked up to their body so that it sensed the nerve and would walk where the body wanted to walk. Right now they are using these for paraplegics. Still, amazing!
When I think of how far we've come over the last century, even the last decade, it has me in awe what God is allowing man to do. And I wonder, will we honor Him with these blessed technologies, or will we create our own "Tower of Babel"?

"O LORD, I know that the way of man is not in himself: it is not in man that walks to direct his steps." Jeremiah 10:23

- Posted from my iPhone

Illness

Praising God for the Vest, which has seen us through another cold, pneumonia and hospital free!

"LORD, thou wilt ordain peace for us: for thou also hast wrought all our works in us." Isaiah 26:12

- Posted from my iPhone

Intuition

William LOVES to visit my grandfather. Actually, all of my children do. And my grandfather loves for them to visit. At 86 years old, he thoroughly enjoys them. He gets down in the floor and wrestles with them, sits and listens to their stories, tells them stories of his younger days and my grandmother and me as a child, speaks to them in "Donald Duck." In short, the rest of the world does not exist when we are all together. What a wonderful gift.

Though he never shows favoritism, there is a special bond between Pappaw and William. Maybe it is because William was born in his house. Maybe it is because of William's special needs and all the extra time Pappaw has spent praying for him. I don't know, but it's definately there. William loves to romp with Pappaw. He asks about going to visit him every single day. Here is a normal day at Pappaw's house:

Get ready...

Get set...

GO!

Share some laughter together...

And then a kiss!

That's pretty much the routine! Last Monday, however, was quite a different story. When we arrived at Pappaw's, he was in his chair, resting. He had been in the ER the night before with extreme hypertension. William seemed to sense right away that something was different. Without me ever saying a word to him, he remained very quiet the entire time we were there, quite out of character for him. While a couple of the older girls took the two littlest boys out to the playroom, William chose to remain close to his Pappaw, quietly, hardly moving at all.

It really touched my heart to see this little 3 year old boy, sticking so closely to his great-grandfather and seeming to know that he needed quiet. Thank you, Lord, for these special moments.

"The glory of young men is their strength: and the beauty of old men is the gray head." Proverbs 20:29

Peace in the Storms

It has been a strange, melancholy sort of week. William is well, praise be to God. I am home from church today with other sick children, though.
Our week started off with my grandfather at the emergency room due to extremely high blood pressure. I had intended to post last Monday about that, but circumstances did not allow it. I will post some cute pictures in the next post.
We also had two friends in the hospital that same day delivering babies, less than 10 miles apart. The first baby was "born at rest" and we attended the funeral of little Athenasius on Thursday. The second baby practically delivered herself, but ended up in the NICU for awhile. However, sweet Tabitha was able to come home with her parents yesterday, all glory to God!
Another dear friend lies in a hospital bed, fighting for her life. They were able to remove the ventilator earlier this week and the doctors changed her chance of survival from 25% to 75%, I believe. Her 10 children are at home anxiously awaiting their mother's recovery.
I find myself seeking forgiveness for the thousands of tiny, special moments that God so graciously gives to me, yet I take for granted. All those moments that I find myself too busy to enjoy. It's had me reflecting on an old poem that my dear friend, Sonya, and I found at a craft show over 15 years ago called Wet Oatmeal Kisses. If you've never read it, it's certainly a "must read."

Wet Oatmeal Kisses

One of these days you'll explode and shout to all the kids, "Why don't you just grow up and act your age!" And they will...

Or, "You guys get outside and find something to do -- without hurting each other...And don't slam the door!" And they won't.

You'll straighten their bedrooms until it's all neat and tidy, toys displayed on the shelf, hangers in the closet, animals caged. You'll yell, "Now, I want it to STAY this way!" And it will...

You will prepare a perfect dinner with a salad that hasn't had all the olives picked out and a cake with no finger traces in the icing and you'll say, "Now this is a meal for company." And you will eat it alone...

You'll yell, "I want complete privacy on the phone. No screaming, Do you hear me?" And no one will answer.

No more plastic tablecloths stained. No more dandelion bouquets. No more iron-on patches. No more wet, knotted shoelaces, muddy boots or rubber bands for ponytails.

Imagine.... a lipstick with a point, no babysitters for New Years Eve, washing clothes only once a week, no PTA meetings or silly school plays where your child is a tree, no car pools, blaring stereos or forgotten lunch money.

No more presents made of library paste and toothpicks, no wet oatmeal kisses, no more tooth fairy, no more giggles in the dark, scraped knees to kiss or sticky fingers to clean.

Only a voice asking, "Why don't you grow up?" And the silence echoing: "I did."

- author unknown


For those of you who know me well, you know how much I loathe change. So I'll admit that when I heard a new rendition of my old favorite hymn, "It Is Well" at the funeral, my first reaction was...I'll be honest...disgust. But as I listened to the words, I began to appreciate them. Only the chorus changed and I think you, too, might like it...

"It is well, it is well
Through the storm I am held
It is well, it is well
God has won, Christ prevailed."

So, I can go so far as to say, don't replace the old hymn, but a new song is sometimes good, too.

Just some of my random thinking this week...

"God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea; Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof." Psalm 46:1-2

- Posted from my iPhone

Thankful

I realize I haven't been keeping up very well with William's blog and, for those of you who diligently check on his progress, I apologize. Thank you for the calls on his behalf.
As I sit to write this post, I am reflecting on how very much I have to be thankful for. Where do I possibly begin? Of course, there are the usual things...family, my sweet husband, our dear children, a warm house, plenty of food, my salvation, etc. All things that I truly am grateful for. But at this time of year, when everyone is focusing on thankfulness, I wonder, do many stop to think about WHO they are thankful to? Are we thankful to our boss for giving us a job? Are we thankful to ourselves for figuring out how to manage our finances in such a way to buy that great house? Are we thankful to random chance that we have health and happiness?
Let us not forget that it is God who ordains and directs all things and it is to Him alone that we should give our thanks. He gives and He takes away; all for a purpose much higher than ourselves and for His own glory. This year, though I am truly thankful to God for all of the aforementioned items, I am even more thankful for the hard times we've had. While that may sound weird, allow me to explain.
I am thankful for our insurance company, who denied the $15,000 payment of William's life-saving airway clearance vest as "investigational" because he does not have cystic fibrosis. Why? Because I found myself relying too heavily on them and not on God. I was beginning to place my trust in them to meet all of William's needs, forgetting the Creator who made him and loves him and meets every single one of his needs, even when I don't know they exist yet. I know that it is God who provides and trust that He will do so, even when man fails us and we don't see a way.
I am thankful that the School for the Blind refused to help us. Again, I was looking for guidance from a State run institution. The command to "render unto Caesar what is Caesar's, but unto God what is God's" could easily have been cast aside here, but for God's restraining hand of protection.
I am thankful, not for the abundance this year, but for the lack thereof; for in it God has increased my contentment and I am more joyful for it. I am thankful that the Holy Spirit has not left me to dwell in my sinful flesh, but moves on my heart with compassion and places within me a longing for Him, a trusting of Him, and a reliance on Him, not my own weak powers and not on what this world has to offer.
And, just so you can join in our thankfulness, here is a recent picture of our little man:






He is standing unassisted whenever he is asked to now AND he can hold it for at least 3 minutes! He is also taking up to 2 steps (while in control of his body). He made it up to 4 one day, but we've yet to repeat it. I know he will, though.
This last week he's been tracking things better with his eyes, his depth perception seems better as we play little games with him and he hits his target on the first try, which he never used to do, and he is using more and more words without prompting. It's a very exciting time in our household! Oh, and the best part of all? He's had 8 months with no hospital, no pneumonias, and no "scary" illness!

"Rejoice in the LORD, ye righteous; and give thanks at the remembrance of His holiness." Psalm 97:12

- Posted from my iPhone

Sweet Blessings

Life has been somewhat frustrating lately, to say the least. However, in the midst of these difficult times, God has blessed me with many precious, sweet moments like this:
Wallace has a beloved Teddy. He drags it everywhere and sleeps with it every night. William never really clung to anything that way until last April when the hospital gave him a stuffed "Woody" doll. I really don't know what made him fall in love with that particular item because he knows nothing of the whole "Toy Story" thing, but, nonetheless, it became his particular special item. One day last week, Wallace's special Teddy went missing. We looked everywhere for it. Finally Wallace announced that Ron (our Great Dane) had eaten his Teddy. While I doubted the truth of this (even though Ron eats everything else under the sun and nothing is sacred to him), there was a sufficient lack of evidence to prove the case. However, Wallace seemed convinced. So as bedtime approached, the face grew forlorn. As Michael and I gathered to sing and pray with the boys, Wallace asked again for his Teddy. Not having it, I asked William if he would be willing to let Wallace sleep with something from his bed. You see, William sleeps with a stuffed dog and a stuffed bear at the foot of his bed, but Woody has a special place right beside him. I figured that Wallace would be happy with William's bear for the night and we could continue the search for his the next day. Sounds reasonable, right? Well, as William was crawling over to his bed to get a toy for Wallace, Wallace said, "I want Woody." William didn't miss a beat. He picked up the beloved doll, crawled straight over to Wallace, handed it to him, and patted him on the back, as if to comfort him. Wallace promptly responded with, "Thank you, William," in his tiny, 2-year-old voice. Michael and I both teared up as we cuddled these two precious children, so unselfish, so considerate of the other, so sweet and tender. We often watch special moments where Wallace "takes care" of William, though he is the younger brother. He is very protective and conscientious of William.
Life is precious, life is special. Life is difficult, life is hard. We must take the time to recognize the meaningful things that happen on a daily basis. And this moment was a much needed reminder to Michael and me that "it's all good."

When my heart is overwhelmed; lead me to the rock that is higher than I. Psalm 61:2

- Posted from my iPhone

Good Things

This is a typical morning in our home: the boys are almost always the first of the children up and they are most often up within 10 minutes of one another. On this particular day Michael was also home and we got to enjoy the sunrise together. The picture of sweetness:



Does it get any better?

"Then I told them of the hand of my God which was good upon me...". Nehemiah 2:18

- Posted from my iPhone

Deaf-Blind

William is doing really well with his Loftstrand crutches. He has the strength and ability to use them, it's just building up the confidence and endurance. He'll get there...

On a different note, I was telling a friend that it's been hard to post lately. I've been thinking of the old "Thumper" saying, "If you can't say somethin' nice, then don't say nothin' at all." Honestly, it's been kind of hard to see the positives and I have been struggling. It seems like one thing has just piled on top of another between orthotics issues, dealing with insurance on the Vest and now therapies being maxed out, compression suit trouble, coming to grips with the term "blind," and remodeling. Whew! William finally got his evaluation at the School for the Blind...the one we've waited for since March. Quite frankly, it was depressing. I may give more details on it when I'm in a better state of mind, but the long and the short of it is this: William is a blind child. He will lose his eyesight completely and even with what residual eyesight he has now, it is not functional for the purposes of reading. He will never read print, but will go straight to Braille. I can't explain why this is so difficult for me to swallow. Finding out about his deafness was not difficult. It was just something we took in stride. To be hit with both is somewhat more difficult. I know God is in control and everything will be fine...God will turn my sorrow to joy. At the same time that I am grieving the things he will miss out on, I am so thankful that he is here with me. I realize things could be much worse. It is just hard to know he will always have to struggle for everything, that things will always be harder for him. But the truth of the matter is: hearing, sight, even our very breath are all gifts from the Lord that none of us are guaranteed, promised, or even entitled to. Praise the Lord for the 10 precious blessings He has given me and gives me life to enjoy them!

In searching, I found this verse quite interesting:

"Sorrow is better than laughter: for by the sadness of the countenance the heart is made better." Ecclesiastes 7:3

Aquatic Therapy

William also really enjoys Aquatic Therapy. Mike has been taking him and they have a great time together! It's so fun to watch him grow and change...this little boy used to be deathly afraid of water!

William is getting so much stronger and more confident. I truly believe he will walk unassisted one day!

"I will lift up my eyes to the hills, from whence comes my help. My help comes from the LORD, which made heaven and earth. He will not suffer thy foot to be moved: he that keeps thee will not slumber." Psalm 121:1-3

Hippo Therapy

William is really enjoying riding therapy. He talks about his horse all the time. Her name is Deseo, but they call her Dezi for short. He's always saying, "I ride Dezi."


He really likes for Sarah and Abby to be his sidewalkers, too!

"But they that wait upon the LORD3068 shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31

New things

There are lots of new things going on in William's life right now. Today I'll only post about his new canes (technically called "loftstrand crutches"). He's doing great with them, though he is not quite stable enough to use them unassisted all the time.

"And you shall teach them the statutes and the laws, and shall show them the way wherein they must walk, and the work that they must do." Genesis 18:20

- Posted from my iPhone

Catching Up

What a long couple of months it's been. Well, I don't know if long is the right word...it's gone by so quickly! Michael is recovering from a hernia surgery...slow going, he's on another 2 months light duty. William is recovered from a bout of strep throat that zapped his energy completely. Several days in a row he did not have the strength to even hold up his head. Fortunately, this was during a scheduled vacation from therapies so we weren't traveling during these long days, but it also wiped out any fun and work we had scheduled. I am so glad he is feeling better, though! Saturday was his first day back to walking in his walker, though he is still only doing it for short amounts of time.

We've had some fun, though. We put the "Bounce Round" up in our living room. It's just been too hot to go outside. The children have had a blast! William was afraid of it at first, but by the 3rd day he was ready to get in on the fun!

The children always have a great time visiting my grandfather. Now that we are so much closer to him, it's easy to pop over for dinner or just a short visit!

William graduated up to a "big boy" bed! He loves it! Wallace thinks it's time for him to have one, too! Probably in the next week or so...the only reason we haven't moved him up already is because it nearly breaks my heart to watch them leave behind "all things baby."

We travel so much that we are often in public places looking for areas where we can do a vest therapy session. This picture is one of William's favorite places to do vest therapy. It's after PT and OMST in a spare room they have. He has the best time with that peanut ball! As you can see, he gets even more PT during his session and initiates his own stands! Fun, fun! Speaking of therapy, semi-good news on the Vest - I talked to our representative at Hill-Rom. They are working with us through the appeal process. They said it's not all that uncommon for insurance to deny on the first go around. We'll see what happens...

We're also looking into a couple of other therapies for William. There is a neat aquatic center here that offers water therapy for handicapped children. With William's new Nucleus 5 processors, this is actually a possibility for him now. Also, we live fairly close to a theraputic riding center, so we are applying for HippoTherapy (horse riding). All of the research I've done on it says that it really helps with stability and control, gait, and balance - all of which William needs. I've read testimonials of other children who weren't walking, but started after just a few semesters of HippoTherapy. Their patient number is extremely limited and there is a waiting list, but they evaluate the need to determine placement. We'll see...

"Wilt thou trust him, because his strength is great? or wilt thou leave thy labor to him?" Job 39:11

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