CAUSE ME TO HEAR

Asthma Annie

2011-12-25T17:11:00.002-06:00

It has been a sad week in our home. William's little dog, Asthma Annie, was killed on Thursday, December 22, after running onto the highway. Many tears have been shed for her, as she was a much-loved friend and constant companion.
Just the day before, William's Pulmonologist had commented how well William's lungs were looking, perfectly healthy, not at all like the little boy he began seeing over 1 and 1/2 years ago. At that time he was sure that William would end up with a trache, as his lungs were so damaged and scarred from previous pneumonias that there was not really hope of such a successful turnaround! After all, 9 serious pneumonias before the 3rd birthday is nothing to be complacent about. I told him about Annie and he said not to discount it...he's been in practice too long and seen it too many times to not give it any merit. So, does a chihuahua REALLY take a child's asthma? I don't know. But I do know William has consistently gotten stronger and healthier in the last year and for that we give thanks to God!
William is beginning to understand that she won't be coming back. The first night was awful, as he had no realization of death. He called for her several times through the day, but was reminded of her death. At bedtime, the conversation went:
"I want Annie."
"Annie can't come. Remember, she got hit by the car and died?"
"Oh. When Annie's done being hurt, she come back to bed with me?"
And, of course, many tears with the knowledge that she can never come back.
The next night was better, with simply
"We buried Annie in the ground?"
"Yes."
"She can't come to me?"
"No, son."
More tears.
By last night, there were no tears. Just a simple, "I miss Annie."
Oh, my heart is hurting for my little boy, and the rest of my children! I realize there are much worse things that can happen. People are missing much, much more. We've even experienced greater loss in our own family. But watching my sweet children learn about death is a painful providence. It is also incredibly sweet. That might sound odd, but truly there is nothing sweeter than knowing the sorrow in a heart, while listening to tender prayers of thanksgiving for the gift of such a special dog. Hearing words of wisdom repeated from young lips makes this a very bittersweet occasion.
"The Lord gives and the Lord takes away..."
Thank You, LORD, for all of your precious gifts, no matter how insignificant they may seem to mere human eyes. And thank You for the life lessons that come in Your perfect time.
"...blessed be the name of the LORD!"

- Posted from my iPhone

MIA

2011-12-14T17:35:00.003-06:00

Well, I realize I've been MIA for awhile! So sorry! We've been unbelievably busy! Isn't that a lousy excuse, as everyone is busy? Anyway, Sarah was able to complete her film about William and we are all very excited! It's at the SAICFF right now being judged. By the way, if you want a copy, be sure to let her know. She's trying to calculate how many before she sends it off for production, which will only be done once, as it is so expensive.

The movie covers William's life in detail, from birth to finding out about his deafness and doing the cochlears, to lung issues, to blindness, to random things about our family. We are very proud of her work.

So much has gone on in William's life recently. I've been posting tidbits on Facebook, but I will have Sarah or Abby give a more detailed account here as soon as we are done with the school year (hoping to wrap things up next week).

"Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him, and He will make straight your paths. Be not wise in your own eyes; fear the LORD, and turn away from evil." - Proverbs 3:5-7

Parental Rights

2011-11-28T21:18:00.007-06:00

BREAKING: Farris defends major parental rights case (medical decisions) in Michigan

Dear HSLDA Members and Friends,

Who should make very difficult decisions for children? Parents or doctors?

In March of this year, 8-year-old Jacob Stieler was diagnosed with Ewing Sarcoma, a dangerous bone cancer. His parents took him to a highly-rated children’s oncology center in Grand Rapids, Michigan.

Jacob had surgery to remove the tumor, which was followed by several rounds of chemotherapy. The treatment was incredibly difficult, and Jacob’s mom, Erin, told me that when she looked her son in the eyes, she knew in her heart that he simply could not survive many more rounds of these drugs.
Erin and Ken, Jacob’s mom and dad, joined by hundreds of others, prayed for Jacob and his complete recovery.

After all of these rounds of chemotherapy were completed, there was a PET scan done to check on the status of the cancer. There was no evidence of cancer detected in Jacob’s body. Jacob’s family and friends rejoiced in his healing—praising God for this wonderful outcome.

But the doctors wanted to give Jacob several more rounds of chemotherapy and radiation, despite the clean PET scan. When asked why they wanted to keep giving Jacob these incredibly dangerous drugs, the doctors replied that this was “the standard of care” for his illness.

Jacob’s parents begged the doctors to make an individual diagnosis, rather than simply following unbending standards. But the doctors were steadfast. All children with this cancer needed multiple rounds of these drugs—regardless of PET scan results, the doctors contended.
Jacob’s parents did extensive study of the side effects of the five different chemotherapy drugs that the doctor wanted to administer. And they believed that the risk of the drugs was far greater than the risk of recurrent cancer, since Jacob had a clean PET scan. They said no to the doctors. No more chemotherapy treatment for now.

But the doctors would not take no for an answer. They called child protective services in Jacob’s county and asked the agency to file charges against the family for medical neglect.

After looking into the matter, both the local CPS agency and the local prosecuting attorney refused to file charges. They believed that the parents were making reasonable decisions for Jacob.

The doctors still would not take no for an answer. They called higher authorities in the state level CPS agency. The doctors had to make several calls before they finally found someone who would agree with them.

As a result of all of these calls, the local CPS agency was pressured into filing medical neglect charges against the parents.

The local prosecutor still refused to take a case against the family, so the state level CPS officials hired an independent private lawyer to serve as the prosecutor against Ken and Erin Stieler.
A jury trial is scheduled for early January to determine if the doctors will be given the authority to take over the medical decision-making for Jacob.

When I heard about this case - and checked out the facts - I knew that I could not sit on the sidelines and watch this family be overrun and parental rights be trashed by well-meaning but overzealous doctors.

I recently flew to Michigan and took the depositions of all three doctors who were scheduled to testify against the family.

Jacob's treating physician is the key.

I prepared for the depositions by obtaining copies of the official "package inserts" that the FDA requires all drug companies to give to physicians and patients. Undoubtedly, you have seen these inserts when you have picked up prescriptions for your children.

The inserts tell you several things:

Indicated uses—that is a list of the diseases for which there is evidence that the drug is a safe and effective treatment.
Warnings—these are strong cautions that indicate serious potential issues.
Side effects—these disclose all of the potential consequences that arise from taking the drug.
Approved for children—there is a specific disclaimer on many drugs that indicate whether the drugs have been proven to be safe and effective for children.

“Have all of these drugs been approved by the FDA as safe and effective for children?” I asked Jacob’s treating oncologist.

“Yes,” she replied, they have been FDA-approved for children.

According to the official package inserts that we were able to obtain, she is just flat wrong.

She wanted to continue to give Ifosfamide to Jacob.

The FDA disclosure for this drug says: “Pediatric Use: Safety and effectiveness in pediatric patients have not been established.”

The oncologist wanted to give Jacob a weeks’ worth of Etoposide.

The FDA disclosure says: “Pediatric Use: Safety and effectiveness in pediatric patients have not been established.”

The warning on the drug Doxorubicin says: “Pediatric patients are at increased risk for developing delayed cardiotoxicity.” This means that the drug can cause severe harm to a child’s heart—at even higher rates than it can in adults.

In fact, as it turned out, the treating doctor had never even seen, much less read, these official FDA-required package inserts. She did state that she had seen similar information from other sources.

Most of the drugs did not list Jacob’s form of cancer as an “indicated use.” This means that these drugs had not been tested and validated as safe and effective for this particular kind of cancer—even for adults, much less for children.

And then we get to the official warnings and side effects.

In addition to the strong warnings about “congestive heart failure” from Doxorubicin, other drugs the doctor wanted to give were known to have caused cancer—new forms of cancer—in patients being treated for an original cancer. Vincristine’s label is typical of these warnings: “Patients who received chemotherapy with vinchristine sulfate in combination with anticancer drugs known to be carcinogenic have developed second malignancies.” The warning labels say that sometimes these second cancers develop years after the treatment.

All five of the drugs that the doctors want to give Jacob are either known to cause other cancers or have not been fully tested.

Some of the other side effects for these drugs include:

Damage to the cranial motor nerves
Serious infections
Failure of boys to sexually mature
The inability to father children
Anorexia

It would take pages to recite all of the warnings and side effects.

Parental rights are increasingly being lost in the medical arena. I am beginning to wonder why physicians even bother asking for parental consent if they will just do an end run around the parents whenever it is convenient for them to do so.

This is not an easy case. It is not a case where a child has a current illness and the treatment is tested and proven to be safe and effective—those cases are easily resolved. The best evidence is that Jacob no longer has objective evidence of cancer. And not a single drug that the doctors want to give Jacob is FDA-approved for children for his kind of cancer.

This is a case where there must be a judgment call—a balancing of risks.

Who makes that call?

The doctor told me during the deposition that she thinks that she should make the call—for every child in this situation. And she would give the same answer every time, rather than making an individual judgment.

I can’t imagine a more clear case of the need for parental rights. This is a decision that requires the wisdom of God.

HSLDA was established to defend parental rights in the context of homeschooling. But the assault on parental rights comes to us on many fronts. This is why we have set up the Homeschool Freedom Fund to enable us to fight important cases for the broader principle of parental rights. Our regular membership fees do not stretch far enough to cover these kinds of cases. We truly need your help to be able to fight for the principles we all hold dear.

If you would like to stand with us in this critical battle for parental rights, I would ask you to send the very best gift you can to the Home School Foundation’s Homeschool Freedom Fund. All gifts to HSF are tax-deductible.

This trial is coming soon—we will send out email alerts if there is any change in the schedule.

Fighting a case of this magnitude is an expensive proposition. I hope you will be as generous as possible so that we may cover travel costs, local counsel, and deposition expenses—for this case and future cases where justice demands action to preserve freedom.

Our nation was founded upon the traditions of Western Civilization. This civilization was founded on the principles of the Word of God. God gives children to parents—not to the state, and not to doctors. In cases like this one, our legal system must remain steadfast in following the principle that God has delegated these kinds of decisions to parents, not to doctors, social workers, or courts.

Please pray for the Stieler family’s case and help as best you can. Thank you.

Sincerely,

Michael Farris

HSLDA Chairman

Introducing...

2011-08-08T12:10:00.001-05:00

Knox Nehemiah

"Influential, righteous man who is unyielding and brings comfort from God"

The Lord has blessed us once again and we are truly grateful! Precious Knox was born August 3 at 5:37pm and is definitely living up to both the "unyielding" and the "comforted by God" parts of his name! After a difficult labor and near C-section, our little breech boy was delivered at 8lbs, 15oz, 20 1/2". He is precious and William is enjoying being a big brother once again! He loves to hold Knox and is continually amazed that Knox came out of Mommy's tummy!
We are very thankful for all of you who stood with us in prayer during these last weeks and especially during those last difficult moments!

Psalm 72:3 "The mountains shall bring peace to the people, and the little hills, by righteousness."

- Posted from my iPhone

Cute

2011-05-20T20:58:00.001-05:00

William is ready for bed as Abby reads a "Billy and Blaze" story to him. I'm so thankful that he enjoys reading now. Blaze is his favorite. He can even tell some parts of the different stories and he knows what's coming next!
Notice the little dog tucked under his arm? That's Asthma Annie, a real chihuahua, who tolerates his affections very well!

"The hearing ear, and the seeing eye, the LORD hath made even both of them." Proverbs 20:12

- Posted from my iPhone

Happy Birthday, William!

2011-04-08T09:42:00.001-05:00

Today my sweet William is 4 years old! We are praising the Lord for this precious little boy, for life, and for a full year of no hospital stays, no pneumonias, no significant lung issues, and the trache avoided! We know that God has protected us from so much and He's been far better to us than we could ever begin to deserve and we humbly praise Him for it all!

Psalm 30:4 "Sing unto the LORD, O ye saints of His, and give thanks at the remembrance of His holiness."

- Posted from my iPhone

Good times

2011-03-27T09:31:00.001-05:00

Been having lots of fun around our house lately, even with all the school and remodeling!

All boys love the Lone Ranger, right?

- Posted from my iPhone

Long Day

2011-02-16T09:47:00.001-06:00

Yesterday was quite the long day. Amidst all the regular therapies, we saw William's eye doctor and found out what we really already knew. William's visual acuity is somewhere between 20/400 to 20/700 with best correction. Basically that just means he's legally blind. On the upside, his right eye seemed stable and maintained it's vision over the last 3 months. His left eye, however, was slightly worse. He is doing very well and compensates nicely. I am so thankful that we chose to have his implants when we did. I can't imagine him not being able to hear OR see. He really uses his sense of hearing and relies on it heavily. He uses either the sound of my voice or touch to find me. Again, very thankful for Cochlear Implants.

- Posted from my iPhone

Amusing

2011-02-01T18:53:00.001-06:00

Okay, it's been awhile. William has been healthy for a significant amount of time, praise the Lord! School has been keeping us pretty busy. I have 6 in school this year, a first for me and I'm teaching 2 of them how to read. I've also discovered that Elly has Dyslexia, which has been a new challenge, but I think we're starting to get it. At least we've had an entire week of school with no tears - that's got to be good, right?
In keeping with the idea of school, I was recently emailed this list of "Why teachers lose their minds." I'm only posting the funniest ones...hope you enjoy them!

- Posted from my iPhone

Baby Naomi

2011-01-20T16:34:00.001-06:00

To all prayer warriors:
Baby Naomi Nault is currently at OUMC, bleeding in her swollen belly. She's lost a lot of blood, doctors are stumped, and they've told the family to prepare for the worst. Please remember her in your prayers.

"But know that the Lord has set apart him that is godly for Himself: the Lord will hear when I call to Him."
Psalms 4:3

- Posted from my iPhone

2010

2010-12-30T12:34:00.000-06:00

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

2010-12-25T10:27:00.002-06:00

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

2010-12-20T05:47:00.001-06:00

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

2010-12-19T12:51:00.004-06:00

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

2010-11-29T22:59:00.002-06:00

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

2010-10-20T14:00:00.001-05:00

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

2010-10-05T14:41:00.001-05:00

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

2010-09-25T05:00:00.002-05:00

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

2010-09-24T16:31:00.003-05:00

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

2010-09-20T08:21:00.000-05:00

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

2010-09-13T12:53:00.003-05:00

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.

YouTube Video

"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

2010-08-03T12:08:00.006-05:00

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

2010-05-25T11:42:00.004-05:00

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

2010-05-11T12:16:00.004-05:00

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?

2010-05-01T10:34:00.004-05:00

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

2010-04-30T14:19:00.002-05:00

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!!!

2010-04-22T22:46:00.002-05:00

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

2010-04-21T09:06:00.004-05:00

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

2010-04-18T18:11:00.001-05:00

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

2010-04-18T02:37:00.002-05:00

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

2010-04-17T21:16:00.000-05:00

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

2010-04-15T14:33:00.003-05:00

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

2010-04-15T13:13:00.000-05:00

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!

2010-04-10T23:12:00.001-05:00

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

Whew!

2010-03-28T19:06:00.002-05:00

Well, we made it to Krissa's wedding yesterday. I didn't get very good pictures, but this is what I have...

Unfortunately, we had to leave before they made it to the reception. The natives were more than a little restless! Of course, the wedding was beautiful, but I have to say, Krissa had the absolute MOST amazing bridal portraits I have ever seen. And I can't say that all the credit goes to the photographer...she's a beautiful lady.

When we headed home we stopped by to visit my grandfather, which was right on the way. It was nice. We haven't had the opportunity to go see him since the end of January and I hate going that long between visits. I miss him...so do the children. You should see him play with the little ones - it is so much fun to watch! You'd never know he's 85. He just acts like it's the most natural thing in the world to wrestle around with a 5 year old (or 4, or almost 3, or 1)!

"We will not hide them from their children, showing to the generation to come the praises of the LORD, and his strength, and his wonderful works that he hath done." Psalm 78:4

Never Dull

2010-03-25T10:38:00.007-05:00

William reading, so sweet ----- The 3 Amigos

Okay, it's been rather busy around here lately, what with carting Sarah around to complete all of her interviews for the movie, maintaining William's therapy schedule, and preparing Michael, Sarah, Sydnee, and Sherrod for their trip to Georgia for the Father-Daughter Retreat hosted by Vision Forum Ministries. They left this morning, so it's just me, Abby, and the fabulous 5, 5-and-unders! I am thankful that Abby chose to stay home and help me, although I know Krissa's (William's AVT) wedding coming up this Saturday played a large part in her decision! Unfortunately I have a terrible head cold, along with ALL 5 of the younger children! This comes from playing in the park for one beautiful 78 degree day last week, followed by 4 inches of snowfall the next day (and sledding).

(Of course, Daddy always has to get in on the action!)

So, rather busy is turning into extremely busy. In a 6-day period I will driving (2 hours away) 4 times. Whew! Michael just called because, wouldn't you know it, they are having trouble with Sherrod's pump (she's insulin dependent and been on pump therapy for about 5 years). They were trying to give her a bolus, but it was telling them "no delivery." Although Sherrod is very good about managing her diabetes, testing, and changing out all of her own equipment, she doesn't know a lot about dealing with the problems yet. So, I nervously walked them through it on the phone, but we got it working. Yeah! It's always been hard for me to let her go far from me because of her diabetes. I can't believe she'll be 9 in 4 days!

I am very excited about tonight! The children and I will be going to a Cochlear focus group meeting. We'll get to discuss the new Nucleus 5 and what we think of it. I'm so glad William got to participate in that study! We don't have his processors in yet, but I am really looking forward to getting them in.

Michael and the girls get back on Monday, then Sarah has 3 more interviews to complete on Tuesday and one more here to wrap it all up. Then it's on to editing. Oh, and did I mention she's trying to write her first song to be the theme song? Nothing like a little ambition...

Here's a fun one:

Abby was building dominoes with the boys one day and Sarah, with blogging always in mind, was snapping pictures. I think William looks like a bobble-head doll in this picture! I love it!

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

Movie Title

2010-03-10T13:50:00.002-06:00

Thank you, everyone, for voting on William's movie title. Sarah asked that I shorten the days to vote, so we are also updating the poll. Please vote on your new favorite from the following:

* Cause Me to Hear
* Precious in His Sight
* Every Eye Shall See, Every Ear Shall Hear
* Walking with William
* Little Miracle

The results of the old polls are as follows:
POLL 1
William's Walk - 5%
William's Story - 9%
Cause Me to Hear - 51%
In His Image - 0%
No Mistakes - 8%
Every Eye Shall See, Every Ear Shall Hear - 25%
None of these - 2%

POLL 2
Walking with William - 50%
In William's Shoes - 17%
Little Miracle - 33%

The second poll is on adding a subtitle. For example, if Cause Me to Hear was chosen and a subtitle was added, it would read:

Cause Me to Hear: William's Story

Obviously if Walking with William is chosen, it would be weird to add the subtitle.

We really appreciate your help. Sarah is very excited about this project!

We Need Your Help

2010-03-04T21:32:00.003-06:00

My oldest daughter, Sarah, is directing a film about William to enter in the film festival this year (http://www.saicff.org/). I have added her email at the bottom of this post, asking for your help. She completed her first interview today and it went very well - thank you, Dr. Norman!

After filming, we went to play in a nearby park and had a lot of fun. As we were leaving, Sarah noticed William's processor was missing. Guess where we found it?

Needless to say, I try not to ever actually leave a place until I check his ears. With the new processors he always told me that one was off, but now that he's wearing the old ones again he doesn't seem to mind if one comes off (in fact, we're back to him pulling them off frequently - I don't know why). I'm sooooo ready for his new ones to come in.

"A cheerful heart is good medicine..." Proverbs 15:13a

From Sarah:

Hello, friends and family! As some of you already know, I am working on making a movie of William's story to enter in the film festival later this year. I would like your help. If you think of any questions for me to ask on camera, please forward them to me. They can be questions about his health, his daily life, his future, us other children, our family, positive questions, negative questions...ANYTHING you can think of. I haven't decided who all I am going to interview for sure yet, but they can be questions directed to doctors, Daddy and Mommy, therapists, us children, friends, whoever! Anything that you would find interesting. If there was ever a question you wanted to ask, now is the time to do it! Sometimes when you are living in the midst of something, you don't see or wonder things that other people might, so that's where you can all be very helpful to me.

Also, I'm trying to determine for sure what direction to take the movie, so please tell me what YOU would find interesting.

I am on a tight deadline, so the sooner you can email me (or blog comment) your questions, the more likely it will be that I can use them. I am interviewing one of his doctors tomorrow and two more next week, along with therapists. I'm not quite sure when I will do Daddy and Mommy's interview yet.

Thank you all so much for your help on this project. It is so important to me and I am excited to be doing it!

Sincerely,
Sarah

Another First

2010-03-02T21:35:00.003-06:00

William has made it through his first illness that Michael and I can remember where we haven't had to have him closely monitored by the doctor (or in the hospital). We are singing praises! We are thankful for the vest, as we truly believe that kept his lungs clear through this illness. We upped his vest treatments to 4x daily through the thick of it, then reduced to 3x daily as he got better. After each treatment he always had stuff coming up. We are now back down to his regular treatments, 2x daily, and he is all better! Again, we are thankful for the technology that God has given us.

"For he shall stand at the right hand of the poor, to save him from those that condemn his soul." Psalm 109:31

A Sister's Post

2010-02-24T15:57:00.002-06:00

As I write this post, William is cuddled up in my lap eating a graham cracker. It was on a day such as this that I came up with the idea of making a collage of some of my favorite pictures of William and a few of the things he deals with everyday with his different medical equipments. Now as I look at it, I'm reminded what a brave little guy he is.

"Seeing you have purified your souls in obeying the truth through the Spirit unto unfeigned love of the brethren, see that you love one another with a pure heart fervently." 1 Peter 1:22

posted by Sarah, William's eldest sister

New Friends

2010-02-22T16:21:00.004-06:00

It is so nice to watch William come out of his shell more and more all the time. We recently had dinner guests and he took right to Mr. P, after meeting him for the first time. I think hearing and the confidence he is gaining in himself through PT is really a great combination.

Here is a question to those of you with children with "special needs:" How important do you think it is for your child to learn to associate with other children "like themselves?"

I'll explain why I'm asking in a later post...

"A friend loves at all times..." Proverbs 17:17a

Accomplishment!

2010-02-15T14:58:00.005-06:00

As you can tell from the pictures, William stood by himself today at therapy! It was so shocking that I didn't even think to count off how long he stood unassisted. I didn't have my camera either, so I'm especially grateful to Liesa who happened to be walking by, grabbed her phone, took the pictures, and emailed them to me.

William has stood unassisted before, but always for very short spurts and without his knowledge. Once he's realized he's standing alone he has immediately sat down. Today was different in that he had an intentional stand alone and held it while we cheered for him! And he did it several times in a row!

He's had a lot of sensory input recently - it appears to be paying off. Laci has been using the compression suit on him and will be adding a new component to that next week. This is basically the same as the vest we tried before, except he wears shorts as well, which covers more of his body and gives more input. Liesa started him on electrical stimulation (E-Stim) last week and has ordered new orthotics. She also walks him on the treadmill at therapy, among other things. She had mentioned that she'd like to see him getting in at least 300 steps a day, so we bought him a pediatric treadmill. We count his steps to be sure that he gets in 150 in the morning and 150 in the evening, both after his E-Stim.

compression suit/treadmill

You may have noticed in the pictures that William does not have a processor on his left ear. The port went bad on the new Nucleus 5 so we sent it in for repair. He is refusing to wear the old Freedom! I spoke with his audiologist and after trying several things to make sure the Freedom is working correctly, I think the Nucleus sound is so much clearer that he doesn't like the distortion he gets from the Freedom! I'll be glad to get his own set in soon!

Standing on the promises of Christ my King,
Thro' eternal ages let His praises ring;
Glory in the highest, I will shout and sing,
Standing on the promises of God.

Standing on the promises that cannot fail,
When the howling storms of doubt and fear assail,
By the living Word of God I shall prevail,
Standing on the promises of God.

Standing on the promises of Christ the Lord,
Bound to Him eternally by love's strong cord,
Overcoming daily with the Spirit's sword,
Standing on the promises of God.

Standing on the promises I cannot fall,
List'ning every moment to the Spirit's call,
Resting in my Savior as my all in all,
Standing on the promises of God...

"He has given us His very great and precious promises." 2 Peter 1:4

AAADD

2010-02-10T14:35:00.006-06:00

Age Activated Attention Deficit Disorder

This is how it manifests:

I decide to water my garden.

As I turn on the hose in the driveway, I look over at my car and decide it needs washing.

As I start toward the garage, I notice mail on the porch table that I brought up from the mail box earlier. I decide to go through the mail before I wash the car.

I lay my car keys on the table, put the junk mail in the garbage can under the table, and notice that the can is full. So, I decide to put the bills back on the table and take out the garbage first.

But then I think, since I'm going to be near the mailbox when I take out the garbage anyway, I may as well pay the bills first. I take my check book off the table, and see that there is only one check left. My extra checks are in my desk in the study, so I go inside the house to my desk where I find the can of Coke I'd been drinking.

I'm going to look for my checks, but first I need to push the Coke aside so that I don't accidentally knock it over. The Coke is getting warm, and I decide to put it in the refrigerator to keep it cold. As I head toward the kitchen with the Coke, a vase of flowers on the counter catches my eye--they need water. I put the Coke on the counter and discover my reading glasses that I've been searching for all morning.

I decide I better put them back on my desk, but first I'm going to water the flowers. I set the glasses back down on the counter, fill a container with water and suddenly spot the TV remote. Someone left it on the kitchen table.

I realize that tonight when we go to watch TV, I'll be looking for the remote, but I won't remember that it's on the kitchen table, so I decide to put it back in the den where it belongs, but first I'll water the flowers. I pour some water in the flowers, but quite a bit of it spills on the floor. So, I set the remote back on the table, get some towels and wipe up the spill.

Then, I head down the hall trying to remember what I was planning to do.

At the end of the day:

the car isn't washed

the bills aren't paid

there is a warm can of Coke sitting on the counter

the flowers don't have enough water

there is still only 1 check in my check book

I can't find the remote

I can't find my glasses

and I don't remember what I did with the car keys

Then, when I try to figure out why nothing got done today, I'm really baffled because I know I was busy all day, and I'm really tired.

I realize this is a serious problem, and I'll try to get some help for it, but first I'll check my e-mail....Do me a favor. Forward this message to everyone you know, because I don't remember who I've sent it to.

Someone sent this email to Michael at work. We laughed so hard, we cried. It completely fits our life right now.

THURSDAY night we had company. About 30 minutes before our company was due to arrive, the toilet in the main bathroom started overflowing. We were thankful when they called to say they would be late. Just as we finished cleaning everything up, they arrived. Whew! Bullet dodged.

FRIDAY night we had just finished dinner when Sydnee went to get a game out of the closet (this was supposed to be Fantastic Family Friday). She screamed when her socked foot soaked up a bunch of water from the hallway. This led us to find that the bathroom had flooded into the living room, hallway, master bedroom and bathroom. We spent the evening pulling books from shelves, moving furniture, pulling carpet and padding, and using the Shop-vac.

SATURDAY morning the plumber showed up early. I took the children to get breakfast, since my dining room was filled with furniture and the table was covered in books. When I returned the plumber was gone. Turns out we had roots in our line. Since the plumber was gone we decided to follow through with our previously scheduled appointments (looking for a house), so we just picked Michael up and left.

Side note - I have all of William's CI "extras" packed in his little travel bag that always goes with us: extra batteries, extra processors, cords, car charger, not to mention eyeglass stuff, etc., etc.

Of course this day I left the house without his bag. Halfway through the day the batteries died on one of his processors. Wouldn't you know it? Not only did I not have fresh batteries to replace them, but I didn't have a case to put his processor in. I put it in my purse and we went on with the day with only one processor on and working.

As it turned out, we took much longer looking at houses than anticipated. Because Michael had a men's meeting with our church, we dropped him off at his office so he could ride with one of the other men and we headed out to grab dinner with friends (dining room table still a mess). We left early so we could get home, give William his vest treatment, and get the children in bed early and prepared for church the next morning. I would be staying up late to rearrange the dining room in some kind of manageable order for breakfast the next morning. This was a good plan, but not at all what happened.

Abby got William started on vest therapy. Our oldest son called and I talked with him while Sarah and Sherrod unloaded the van from our "day trip." By the time I got off the phone with Bryce everything was unloaded and people were settling in. I asked Sarah why she didn't replace the batteries and put William's processor back on. She said she didn't know where I had put the processor. I looked in my purse, where I distinctly remember putting it. No processor. Slight panic. Look in the diaper bag. No processor. More panic. I dumped the contents of both my purse and the diaper bag out onto a large box sitting in my dining room floor. No processor. Extreme panic. At this point I should probably point out that this processor doesn't technically belong to William yet. Because he is part of the test study, he is wearing their processors and will get his own when the study is over. I had no idea how insurance would look at this, especially with it being loss, not damage. I went out to the van to search. Called the places we had been to that day and asked them to search. Called friends and asked them to pray. Came in and searched the house again. The trash. Cut the lining in my purse and searched there. Searched the trash in the garage. Took Michael's floodlight outside, searched the van, driveway, and yard. Long story short: the children got in bed much later than planned, I searched instead of doing the other things I needed to do for Sunday preparation, Michael got home extremely late and we were both up a good deal of the night: searching, searching, searching.

SUNDAY: Fortunately, Michael found the processor in the light of morning. It was in the cup holder of the van, under a dry wipe. Not only had I emptied out the cup holders TWICE, but Michael had looked in them as well. We ended up missing church, although we made it for fellowship. My nerves were somewhat shot.

So the last few days have been spent looking for things I need in boxes. School, 2 different computer chargers, batteries, my desk scissors. I didn't realize how much I used my desk. Or my printer. Some things are easier to find than others. Some things are worth spending more effort looking for than others. The camera battery died and I opted not to even bother looking for the charger until all this stuff is put away. The good news is the carpet men just left, so at least that part is back to normal. Now I just have to get everything unpacked and back in order.

"Hold up my goings in thy paths, that my footsteps slip not." Psalm 17:5

Back in the Saddle

2010-01-25T22:15:00.003-06:00

We are getting back into the swing of things. Today was filled with therapy, doctors, and GOOD NEWS! I love good news!

I discussed my concerns with Liesa at PT today. The prognosis looks good. She worked on some muscle groups, performing some tests on him, and feels his weakness is not pathological. Basically that means that he should regain everything he's lost as he continues to heal from his illness. This was a big concern, since it seems he loses something major after a big illness (7mos pneumonia/RSV - hearing loss, 15 mos pneumonia - motor skill loss, 21 mos pneumonia - nystagmus and loss of eye sight...). The concern here is that whatever neurological condition he has might be degenerative and result in continued losses over time. Of course, we are praying this is not the case, but we won't really know until he makes it through some milestones. He has had several boughts of pneumonia with no apparent loss, but we just have to wait and see. It always makes me nervous. Anyway, PT was our first good news.

Booth testing went great today! William's threshholds are great, his hearing is perfect*, and his understanding is impressive. Even his speech is coming along!

The last visit was to William's CI surgeon. It also went very well. William's recent ear infection and drainage has completely cleared up and left no residual damage. Implants are exactly as they should be and our recheck appointments have now moved to YEARLY! Wooo-hooo!

All in all, a good day! Praise the Lord!

*just to clarify: when I say William has perfect hearing, this is only with his processors on. The cochlear implants did not heal his deafness, only make a way for him to receive sound since his cochlea does not work on its own. He is, and will always be, profoundly deaf, but is able to hear when he wears his processors. When he has them off, he gets absolutely no sound at all.

"Behold, I will do a new thing; now it shall spring forth; shall ye not know it? I will even make a way in the wilderness, and rivers in the desert." Isaiah 43:19

A Light Heart

2010-01-24T21:55:00.000-06:00

Okay, this post doesn't really have anything to do with William, except that I really needed some laughter after the long indoor stay. My sweet father-in-law sent me this link and it made me laugh soooooo hard, I wanted to share it. If you need a good laugh, take a look at this, but whatever you do, don't bungee jump naked!

http://www.youtube.com/watch?v=L1_W0LCHwK4

"A cheerful heart is good medicine, but a crushed spirit dries up the bones." Proverbs 17:22

A Word of Thanks

2010-01-23T13:54:00.001-06:00

"But my God shall supply all your need according to His riches in glory by Christ Jesus." Philippians 4:19

Michael and I wish to express our gratitude to those of you who have been so very helpful to us over the last 6 weeks. You have blessed us beyond words! It has been so humbling to have all the visitors (even with risk of infection), meals, calls, prayers, gifts, and help for our family. We have also received anonymous financial gifts that were extremely timely for us - those of you with children with special needs totally understand what I'm talking about! Whenever William has had a need arise, we've never had to put it off for wondering how to pay for it. God has always provided! And we trust that, whatever may come, He will continue to do so.

William is finally clear of all stidor sounds and wheezing! Praise be to God! He is up and around and playing again, which is comforting. However, we've noticed that he is still extremely weak and only plays for short spurts of time. He seems to have lost all skill gained over the last few months of PT and his limbs seem like jello again. Standing and walking are trying tasks that he doesn't even attempt. Even walking in his walker is complicated for him and he falls often. Crawling is his main mode of transportation, but even that has become difficult for him to manage, as his arms give way on him often and he hits his face on the floor. I am looking forward to PT tomorrow to see what his therapist thinks. Hopefully, it is just weakness from trying to recover from his 6-week bought of pneumonia and he will regain his strength quickly. We appreciate your continued prayers on his behalf.

As for me, I think I'm starting to get a little stir crazy. I'm ready for nice weather to be able to take the children out again. I'm hopeful that the Vest is going to help William with illness, but I'm not ready to test him out in the damp weather yet.

"Be not ye therefore like unto them: for your Father knoweth what things ye have need of, before ye ask Him." Matthew 6:8

"Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Hebrews 4:16

The Vest

2010-01-18T23:46:00.000-06:00

The Vest is wonderful technology! We are so excited to have it for William! In two full days of use his lungs have cleared amazingly! Everytime I've listened to his lungs I have been astonished at the difference! We are very encouraged by William's new equipment and hopeful that it could mean no more hospital trips!

William sits nicely for his treatments. When he is well he will have two 20 minute treatments daily, but when he is having trouble clearing his lungs (like now) he'll have treatments each time he nebulizes (right now it's every 4 hours, daytime). He likes to read or sing - I think he really likes to hear his own voice vibrate! Sometimes he'll sit and say, "AHHHHHHHHH.....," but when someone gets the camera out, he stops.

We did catch these two videos. In this one, Abby is nebulizing him while Sarah sings with him:

In this one, Selah is helping with the nebulizer while I read to him:

I love how he "roars" for the lion! He is really listening and processing things well and his speech is even coming along!

For the LORD gives wisdom: out of His mouth comes knowledge and understanding." Proverbs 2:6

Daddy's Tough Guy

2010-01-14T17:43:00.002-06:00

That's what his shirt says, and that's what he is! He's such a trooper!

AND HE'S HOME!!!

He's still got a long road ahead, but we are hopeful that we can manage his care here. Look for future posts with pictures of his new respiratory equipment!

"Sing unto the LORD, O ye saints of his, and give thanks at the remembrance of his holiness." Psalm 30:4

Slight Change

2010-01-13T11:09:00.002-06:00

I don't know if William will be coming home today or not. The doctor last night felt it was fine, but the doctor this morning wants to run a CT scan to get a better look at William's lungs before he decides whether to discharge him. I'll keep posting...

By the way, William is looking and sounding much better today!

"Ye that fear the LORD, trust in the LORD: He is their help and their shield." Psalm 115:11

Doing Better

2010-01-12T22:53:00.002-06:00

There is talk of William coming home tomorrow! He is not 100% and still sounds very raspy, but he is holding his oxygen well and they feel we can do everything at home that they are doing there, except the deep tube suctioning, which they think is a decreasing benefit.

I will be glad to have him home, but I am nervous, too. I had hoped he would be all better when we brought him home, or at least his lungs would sound clear. However, his doctor prescribed "The Vest" for him and the company will overnight it to us when William is discharged and a RT will come out to teach us how to use it shortly after we get it. Hopefully this will really help break everything up and keep his lungs clear. If you'd like to see how vest therapy works, here is a short demonstration video:

http://www.thevest.com/airway-clearance/

He has been finding ways to entertain himself, as he is now bored with his toys:

Building a mountain.....King of the hill

Calling Mommy...

"He delivers and rescues, and He works signs and wonders in heaven and in earth, who has delivered Daniel from the power of the lions." Daniel 6:27

Another Update

2010-01-11T23:57:00.006-06:00

Today is Sydnee's birthday, but, of course, was not spent like our normal "birthday" day. Today was more difficult. I'm too tired to blog about all the details, but they made some changes in William's treatment since he was doing so well yesterday and he regressed significantly. When I arrived he was droopy, non-communative, staring into space and had been for some time. His oxygen levels were in the high 80s so Michael was blowing the oxygen through the tube. His doctor listened to his lungs, which also sounded worse, and made some changes in his treatment. He was beginning to sit up, eat, drink, and talk a little before I left. He had even greater improvement by this evening and Sarah said he was playful and energetic!

Discussing treatments and future possibilities

Feeling a little better

Playing with Daddy

Playing with Sarah

Playing with Woody

'Night-'night, Woody!

Happy birthday, Sydnee!

"Let us hold fast the profession of our faith without wavering; (for He is faithful that promised." Hebrews 10:23

Taking Inventory

2010-01-10T23:29:00.004-06:00

I took medicine to Mike tonight and picked up Sarah. She had lots of new pictures and video for me to look at. This is one of my favorites. William does this all the time at home. He loves to line up his things and inventory them.

William is doing much better. He is actually strong enough to give a serious fight when he's being suctioned now. Also, they were able to remove the oxygen after he woke up from his nap and he's been holding his own. Sarah said that the RT (respiratory therapist) thought his lungs were sounding much better.

"Our soul waiteth for the LORD: He is our help and our shield." Psalm 33:20

Hospital Update #2

2010-01-10T19:04:00.001-06:00

I don't know who was happier when I arrived at the hospital today: William or me. Okay, it was definitely me, but he was pretty happy, too.
Although he has made great improvements from when he first arrived, he is still pretty weak. When he sits up, his body kind of sways like he's just too weak to have any stability. His eyes are droopy, but he managed a weak smile and a perky, "Hi," when I walked in.
His oxygen levels dropped and stayed at 87 for awhile, so they've been giving him oxygen for the last 3 1/2 hours. He's still not back up in the 90s, so they're keeping the oxygen going.
Everyone at the hospital has been so very sweet and attentive. It is comforting to have him at a hospital that specializes in children. We are confident that he is receiving the best care possible and that is a tremendous relief!
Sarah is taking lots of pictures and William is staying busy with all of his new toys. The volunteers at the hospital have brought him 2 toys each day he's been there. He really likes his new "Woody" doll (you can see him cuddling with it in the 2nd picture below)!

The difference of a day:

Drawing blood is "old hat" by now:

Hanging out with Daddy:

Necessary evil: suctioning

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

Hospital Update

2010-01-10T08:21:00.004-06:00

(picture from Thursday)

For the bloggers who didn't get my email, William was admitted to the hospital yesterday afternoon. They drew blood, took another x-ray, started an IV with fluids and 2 antibiotics, continued breathing treatments and intensive percussion treatments every 3 hours. His oxygen level was hanging out between 93-95 and they won't use an oxygen tent until it drops below 93. I think that's basically all the information from yesterday. Mike and Sarah were up at the hospital with him, as I stayed home with Calvin and the other children last night.
This morning Mike called to give me an update. William's blood work came back. He has metapneumovirus. I think it is possibly HPIV (Human Parainfluenza Virus) related, second to RSV (Respiratory Syncytial Virus). They changed one of the antibiotics from Rocephin to Cefepime, but kept everything else the same. Mike also said that his blood sugar was 220 and he's throwing keytones. What I don't know is if this is indicitive of Juvenile Diabetes coming on, or if it is a side effect of the virus. That was all the information I got and I wasn't able to ask questions because while we were on the phone, William's oxygen dropped to 81 and we got off quickly when a nurse came in.I am planning on taking Sarah back up to the hospital this morning and staying for a little while. I will be leaving Calvin here, so I will not be able to stay for long, but hopefully my questions will be answered.
Thank you all for the continued prayers, food, visits, and general assistance. Everyone has been so thoughtful and we are overwhelmed with love. I will post updates as I can.

"By this shall all men know that you are my disciples, if you have love one to another." John 13:35

The Multi Tasker

2010-01-08T22:20:00.000-06:00

I have found that William will let me use the percussors on him longer if I let him use them on me, too. Last night he did it while he was nebulizing. What a multi-tasker! The percussors are working great! I am surprised at the amount of stuff that has come up out of his lungs. Yuck!

This morning we got William up to get him ready for PT and OMST, but he wasn't acting like himself. Mike went ahead and took him because I really thought he was just tired and would perk up. He did well through therapies and for awhile after he got back home. He went down for a nap earlier than usual, though, and when he woke up he had a high fever. The rest of the afternoon was spent like this:

or on someone's lap. Poor guy. I thought he was getting better, but now I'm wondering. Can I just say, I don't like Fridays and illness. Is it just me, or do children always get worse after office hours?

"I will both lay me down in peace, and sleep: for thou, LORD, only makest me dwell in safety." Psalm 4:8

Percussors

2010-01-07T09:40:00.001-06:00

We found the percussors! Yeah! After spending several hours on the phone and emailing respiratory therapists off of an internet search, a very good friend of mine actually found them for me. Mike was able to pick them up last night and we've gotten started using them. William laughs at the rhythmic tapping, but he doesn't want to sit for it for the whole time. If I can at least get 5 minutes out of him, I'll be happy with that and try to work our way up.
Thank you so much for the prayers and the help. We had several emails and phone calls from friends who were looking around for us or who knew someone who might be able to help. We are so appreciative to all of you! And to Sheri, who not only found the percussors, but offered to go get them for us: you are dear to us - we love you!
Now, hopefully, we can get our little guy better!

"Now the God of hope fill you with all joy and peace in believing, that you may abound in hope, through the power of the Holy Spirit." Romans 15:13

Continuing with Pneumonia

2010-01-05T15:48:00.002-06:00

Alright, here's the latest: we did end up taking William in to the ER on the 30th, but they did not have to admit him. They gave him another round of antibiotics and another steroid. Yesterday we took him back to his doctor for a recheck. He put William on a 3rd round of antibiotics, continued the steroid, and added an inhaled steroid, along with his regular nebulizer treatments. The good news is that William is not getting worse. The bad news is that he's not getting better, either. We can't let him continue in this weakened condition. I'm always cautious about medications and the side effects they can have and I hate for him to be on antibiotics for so long, but there is also an increased risk of complications from not being able to breathe well for an extended period of time. Next Monday we go back to his doctor for another recheck. If he's not better he will have to be admitted for a more intensive treatment.

Thank you for the continued prayers. Another prayer request: we need a respiratory percussion mallet. His doctor wrote a prescription for one, but we haven't been able to find it. We've called all of the med supply stores in this area, but nobody carries one. I'm trying hospitals and supply stores throughout the state today. Prayerfully we will be able to find one and it will help to break up the junk in his lungs.

"The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower." Psalm 18:2

A Whole Year

2009-12-30T14:44:00.000-06:00

last year's hospital stay/yesterday's nap

Michael and I have been very excited that it's been a year since we've had any ER trips or hospital stays with William. Unfortunately, it looks like we might be headed that way with this round of pneumonia...

We appreciate your prayers on his behalf.

"Heal me, O LORD, and I shall be healed; save me, and I shall be saved: for thou art my praise." Jeremiah 17:14

The Good News...

2009-12-29T12:52:00.003-06:00

William is getting stronger and stronger through PT. Yesterday he stood by himself for a good minute, maybe 90 seconds!

After PT, we all went to AVT. While William was back with Krissa (and Mike and the rest of the children), Abby and I went into the sound booth with Dr. Kasulis and completed Calvin's ABR. His hearing is perfect! Praise be to God!

"I will make them hear my words, that they may learn to fear me all the days that they shall live upon the earth, and that they may teach their children." Deuteronomy 4:10b

And the Bad News...

2009-12-29T12:50:00.001-06:00

William has had a relapse. He seemed better for a day or two, but the wheezing and rattling in his chest never completely went away. Now he is worse again. We've started the steroid. Hopefully that will get him over the hump and allow him to get over the pneumonia completely.

"Have mercy upon me, O LORD; for I am weak: O LORD, heal me; for my bones are vexed." Psalm 6:2

Fixing Hair

2009-12-21T12:18:00.009-06:00

This morning as Michael and Sarah were getting ready to take William to PT, Selah decided she wanted to go, too. William patiently watched me brush her hair and put it up in a ponytail. When I was done, he crawled over to me, pointed to his head, and said, "Me?" I put him up on the counter, combed his hair, and put gel in it while he watched in the mirror and laughed! Then he wanted to go show Daddy as he pointed to his hair. Doesn't his hair look nice?

He had a lot of fun at PT. After walking on the treadmill, he got to play basketball!

Then he stood all by himself during his toning exercises!

Another great day at therapy!

"But let all those that put their trust in thee rejoice: let them ever shout for joy, because thou defendest them: let them also that love thy name be joyful in thee." Psalm 5:11

Nebulizing the Dog

2009-12-20T18:15:00.001-06:00

Today is Selah's 4th birthday. We had a good time opening presents and playing together this afternoon. When I was giving William his breathing treatment he was holding a stuffed dog that Sydnee bought for Selah and he said, "Dog turn." Abby snapped the picture as he was giving the dog a breathing treatment. So cute!

His vocabulary is really coming along. Today Michael ran to the store for me and called home while he was gone. William climbed up next to me as I was talking on the phone and said, "My turn," and of course I handed him the phone. Then Elly came over to us and William handed the phone to her and said, "Your turn." He gave her about 5 seconds before he said, "My turn."

Most toddlers go through the stage where they point at something and grunt, "Uh-uh-uh." We have found that baby sign language greatly reduces this, as it gives them an outlet for expressing their needs. However, since we are trying to only use spoken language with William we have been hearing the "Uh-uh-uh" often. I started off telling him, "Say _____." After he repeated what I wanted him to say, I would follow it with, "Good job, use your words." In the last few days I've dropped telling him what I want him to say and I just tell him to use his words. He doesn't always remember what he wants to say, but he is starting to more and more. If he doesn't remember, I'll just remind him, "Say 'help me,'" or whatever else he needs to say, then follow it with, "Good job, use your words." It's really exciting to see how it doesn't take a whole lot of repitition before he gets it!

"Now therefore go, and I will be with thy mouth, and teach thee what thou shalt say." Exodus 4:12

Seclusion

2009-12-19T12:21:00.000-06:00

Calvin is 11 days old and has hardly seen anyone but me. We brought him home last Wednesday and the children enjoyed him all afternoon, but that evening William came down with a cold and Wallace came down with croup. Because of our fears of Calvin catching something, I secluded myself with Calvin back in our bedroom. Wallace is doing better, but William has had a rough week. Twice we considered taking him in to the ER, but before I packed his things, Michael went in to pray over him and suddenly his breathing got much better. Thursday we took him to the doctor and learned for sure what we had already suspected: he has pneumonia again. His oxygen levels were low, but came up after a breathing treatment at the doctor's office. We go back early next week to check his levels again. Needless to say, we are not doing a lot of visiting. We've talked about getting a mask and teaching William to wear it in public places during cold season.
On a strange note: William has all of a sudden decided he does like his glasses. Michael took him in Friday for an adjustment, but the glasses seemed fine. I am looking forward to his eye exam to see if his eyes have changed for the better!

2 Kings 20:7 "I have heard thy prayer, I have seen thy tears: behold, I will heal thee."

Pediatric Treadmill

2009-12-10T20:40:00.000-06:00

I have had several emails asking what has been going on with William since I have not been blogging much lately. I'm sorry to be so behind, but I feel like I have been running nonstop for quite some time now. Between running William to all of his therapies, keeping up with school and the house, and simple exhaustion from 3rd trimester pregnancy, I know I let the blogging world fall behind. Instead of trying to catch everything up, I'll just give a small sample of where we are now.
Physical therapy is going very well. Liesa has started William on the pediatric treadmill since he is starting to control his legs so much better (instead of just flopping them out there and letting them land where they may). When he comes off the treadmill, he gets to walk around in the harness and play in the gym. He likes to kick the ball and chase after it.

Between the kinesio tape on his knees and his braces, he has much better control over his legs and does not hyper-extend like he used to. I think the biggest obstacle he faces right now is confidence. There are times Liesa or Laci have him standing all by himself and he doesn't even realize it. When he figures out that he has nothing holding him up, he sits down and generally will not repeat the exercise right away.

Liesa also has him working with the bar, which he does not really like. He doesn't mind it so much when she has both hands on it and it is stable, but when she only has one hand on (and less control) he gets frustrated quickly. Again with the security.
Other therapies are also going well, it's just that we spend the most time in PT. Auditory-Verbal therapy has been a little slow going lately because I have not been traveling that far for several weeks, due to late pregnancy. We've been using Skype, but William doesn't respond as well to Krissa over the computer. We have been really working with him at home though and his speech is really taking off. He repeats just about anything and his understanding is GREAT! He can follow just about any command we give him, no matter how many words we use in the sentence. He knows all of his therapists by name and says each of their names. In fact, the other day we were in the waiting room waiting for his PT appointment. Liesa came out a door down the hallway and we could not see her, but heard her voice. William's eyes got big and he sat up straight and looked at me and said, "Miss LEEEE-sa!" Very exciting stuff!
His jaw strength is also coming along well with Oral-Motor Sensory therapy. I've noticed that he has much better control over his tongue and is now using it to lick things off of his lips. The added benefit to having better tongue and jaw strength is that he is eating much better than he used to!
Low-Vision therapy hasn't really gotten off the ground and we are still pretty unsure of exactly what he can and can't see.
So that is the latest on William. I will try to stay more up-to-date! Thank you for your continued prayers on his behalf.

"Our soul waiteth for the LORD: He is our help and our shield." Psalm 33:20

William and Calvin

2009-12-09T18:06:00.008-06:00

William is a very happy boy today: he got to come up to the hospital to visit his baby brother, then bring him home!

He loves his baby brother! No matter who is holding him, William wants to sit next to them and watch Calvin. He constantly wants to be touching Calvin and is very gentle with him. It is so sweet to see!

Calvin Valor joined us December 8, 2009 at 10:45am. He weighed in at 8lbs, 15oz and is 20 1/2 inches long. Labor and delivery went very well, but his blood sugar dropped severely afterward, which earned him a long night in the NICU. Praise the Lord, he has done much better today and we were able to bring him home! The girls will post more about Calvin on their blog later tonight or tomorrow. Thanks for all the prayers on his behalf! We are extremely grateful to the LORD for His shelter and protection, mercy and grace, and the many blessings He has bestowed on our family.

"Behold, children are a heritage of the LORD: and the fruit of the womb is His reward." Psalm 127:3

Childbearing

2009-11-29T13:52:00.004-06:00

"Notwithstanding she shall be saved in childbearing, if they continue in faith and charity and holiness with sobriety." 1 Timothy 2:15

As we await the birth of our new little one, who has decided he doesn't care a thing for expected due dates and time schedules, I found myself pondering this verse this morning. Not being able to travel, I was unable to attend church this morning and my family opted to stay at home with me, "just in case." Everyone is hoping that our new baby will join us at any moment, but there is no sign of things to come.

So what is it that this verse means? Well, we know that it isn't talking about eternal salvation, for Scripture clearly teaches that salvation is by grace alone through faith alone (Romans 3:19, 20). We also know that this doesn't mean that women maintain their salvation by having babies because salvation is sustained forever (Romans 8:31-39). The Greek word used here could also mean "to rescue," "to preserve safe and unharmed," "to heal," or "to deliver from." Mothers have a unique intimacy and bond with their children. They spend great amounts of time together and they have a great influence on the lives of their children, thus giving them a unique responsibility and opportunity for rearing godly children.

I also think that children "rescue" us from ourselves in other ways. Many times I would have been tempted to veer into sin were it not for the little eyes watching me. Because of them, I am more cautious about what I do and say, more thoughtful of the results of my actions.

I find that I am also humbled by their thoughts and that I learn much from them. For example, my oldest daughter, Sarah, wrote letters to some of her pen pals just before Thanksgiving. A custom in our home when the children are young is for them to bring their letters to either Michael or me so we can proofread them for proper spelling and grammar. Even though Sarah and Abby have far outgrown the need for our help in this area, they still bring us their letters to read. As I was reading something that Sarah wrote in one of her letters, I was struck by the faith behind one her statements. She wrote about how she had been diligently praying for William, that he will not lose his eyesight, but that his eyes would be made whole. She wrote that she had been reading in the book of Daniel and remembered how God saved the 3 Hebrew children in the fiery furnace and prevented them from being burned and that God shut the lions' mouths when Daniel was in their den. She commented how amazing God is and that there is nothing He can't do and that if He could do that for them, she knew that He could heal William's eyesight.

This was humbling to me because it made me think how easy it is to get our focus off of God. It is so easy to listen to "experts" who give us a prognosis and just prepare for that fate. Of course I am still hoping and praying that William's eyesight will be healed, but which is stronger: my belief in the doctors' prognosis, or my faith that God will heal? Certainly we must still prepare for the worst. But I am also praying that my faith will be like that of my child's.

"Verily I say unto you, Whosoever shall not receive the kingdom of God as a little child shall in no wise enter therein." Mark 10:15, Luke 18:17

Congratulations, Krissa and Justin!

2009-11-27T11:21:00.002-06:00

Last weekend William's AVT, Krissa, got engaged! We are so excited for the both of them! Congratulations!

“Therefore shall a man leave his father and his mother, and shall cleave to his wife; and they shall be one flesh.” Genesis 2:24

“What therefore God hath joined together, let not man put asunder.” Mark 10:9

posted by Sarah

Progress

2009-11-09T21:48:00.004-06:00

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

The Pay Off

2009-10-26T14:53:00.000-05:00

Well, I cried in Auditory-Verbal therapy last week and I did it again this morning in Physical therapy! And, no, I don't think it's the pregnancy hormones! It is absolutely amazing to see the changes in our little boy. Things are really coming together for him. Last week in AVT, he was so expressionative with Krissa and willing to verbalize about everything! Such a change from our silent boy!
This morning in PT was similar with many good changes. First of all, William is pretty reserved and it generally takes him a bit to warm up to people. He actually treated Laci like she wasn't so bad today. And he worked hard for her: standing on his own without hyperextending his knees, standing up and sitting down on his own without using anything to pull up on, and maintaining a squatting position for several minutes. The change is remarkable! Last week, Liesa adjusted his orthotics, making several cuts and changes. He has actually enjoyed wearing them since. I am very excited to see the upcoming changes! It makes all the trips completely worthwhile!

"...and it shall come to pass, when he crieth unto me, that I will hear; for I am gracious." Exodus 22:27b

Therapy Daze

2009-10-25T23:52:00.001-05:00

A look at William's "daze of therapy":

Auditory-Verbal therapy

Physical therapy

Low-Vision therapy

Oral Motor Sensory therapy

Physical therapy

Physical therapy

Occupational therapy

Working on therapy at home:

We have finally worked out a schedule that helps us to balance our time at home with our time at therapy and our new system is working well. We are getting so much accomplished! Yes, I'm still tired, but I really think after the baby is born a lot of that will subside. I'm very excited about all the good that is being done for William and for the other children as well. They are doing a great job staying on task! They are really recognizing the value of ordering their time and "numbering their days."

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

Hearing 1 Year!

2009-10-08T14:34:00.005-05:00

William has been hearing for 1 year today! There are so many new things he is doing and, truly, I will eventually post video of some of his cute sayings when all of the sickness subsides. For now, we put together this video of some of his trials and triumphs over the last year. Be sure to let us know what you think.

I posted the video in the sidebar under "1 Year Hearing." However, if you would prefer to watch it with captions to the song, click on this link:

http://www.overstream.net/view.php?oid=amu8i7s9lza3

"I will praise thee; for I am fearfully and wonderfully made: marvelous are thy works; and that my soul knoweth right well." Psalm 139:14

The Season is Upon Us

2009-10-06T16:16:00.003-05:00

Our little guy is very ill right now. His breathing is labored and he is still pretty lethargic. We upped his breathing treatments and today has actually been a bit better. I think we are starting to see some improvements, but we still covet your prayers. Thank you.

"Is any sick among you? Let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord." James 5:14

Cochlear's Nucleus 5

2009-10-01T22:41:00.008-05:00

No, I haven't disappeared from the blogging world. With all of our new therapies, I've just been too busy to post lately. I'll update more on all of that at a later time, but for now I have some exciting news: William got his new processors today! He is part of a test study for Cochlear's new Nucleus 5 which, by the way, is absolutely amazing!

The headpiece is so thin and lightweight that he is able to wear it without all of the Babyworn accessories (i.e., cords and clips worn on his shoulders). And he loves it! I love it, too! Especially the remote control! I can control everything from the remote without ever having to take the processor off his ear - volume, program, alarms, troubleshooting, and SO much more!

William also really likes the remote control! Hmmm, I'll have to keep it put away!

And, possibly one of the best features: with it's IP44 protection rating (the only one in the industry, by the way) we don't even have to worry about water so much! So tonight he took his first bath...

...with sound, that is! And of course, sharks are MUCH more interesting when you can hear the tail fin flapping! Very exciting!

"O clap your hands, all ye people; shout unto God with the voice of praise." Psalm 47:1

Birthday Thoughts

2009-09-10T14:09:00.001-05:00

Last week I celebrated another birthday. Since my OB kindly tells me I am an "older pregnant woman," I'll leave age to your imagination. I haven't been feeling very well lately, so the children were a little disappointed on my birthday. I didn't even feel like eating dinner, much less cake. However, we did have a wonderful dinner and cake a day or two after my birthday, which was very nice.
I have so many things to be thankful for. I am thankful for my wonderful children and that God is continuing to bless us. I am thankful for a husband who is a faithful companion, hard worker, righteous servant of the LORD...my best friend. I am thankful for his leadership in our home, for his unselfish love for me and our children, and for a united vision for our family. I am thankful for children (yes, teenagers, too) who love the LORD and desire to walk with Him, who are a blessing in the home, and love their parents. I am thankful for the opportunity to teach and train my children, to spend time with them, to talk with them when they "sit in the house, when they walk by the way, when they lie down, and when they rise up." I am thankful for each day that God gives me with my children. I am thankful that our children are healthy and happy and for the peace God has given with the unanswered questions surrounding William. I am thankful that he is thriving, learning, hearing, listening, and now talking! What blessings!
Though this is William's blog, today I share some favorite pictures of the rest of my precious family. Praise be to God!

"O give thanks to the LORD of lords: for His mercy endureth forever." Psalm 136:3

Random Summer Pics

2009-09-10T12:19:00.004-05:00

William is an awesome vet!

Good listening!

Frogs are good for listening therapy, but in real life...not so much!

I love this picture because it was when he first started really listening. I said, "Night, night, Biscuit," and William did the sign for "shhhh...night, night." Very exciting!

Melancholy Moment

2009-08-27T21:41:00.004-05:00

I know this picture may be a little "off" because it is actually a picture of a picture. Strange, I know, but I wanted to share this sweet gift that a dear friend of mine sent to me just before we left for Mayo. It is a picture frame that says, "We are surrounded by miracles." The picture inside is of William several days after his CI surgery. Michael and I were removing his bandages while he was sleeping (great idea, Daddy).
I post this because it is nice to remember the miracles all around us. Michael and I have 9 beautiful miracles walking the earth, soon there will be 10. The gift of life is a wondrous miracle. The gift of eternal life is the ultimate miracle.
I am somewhat melancholy today, therefore I am sitting here reminding myself of all the things I am thankful for. I have been reading on the web, which has put me in this somewhat disheartened mood. Two things I've been reading about lately: 1) deaf people against CIs for anyone, and 2) a deaf-mute boy badly beaten up at school by 10 others. My post would be far too long to tell all that my heart holds at this time, but it is broken for this poor soul. I can't imagine my precious William having to face such a cruel world. How can even the most grievous of souls have absolutely no compassion? What thoughts must have been going through that poor boy's head? In what condition is his precious heart? Does he know that he is loved and cherished and important? Does he know that God has a purpose for his life? My heart is aching for this dear boy.
And for those against CIs, I understand the point that there is nothing "wrong" with a deaf person. I agree wholeheartedly. I cannot, however, agree with the idea that parents want to "force" a deaf child into a hearing world for their own comfort or convenience. Loving parents want to offer their children all of the best opportunities and joys. God has given man this wonderful ability to give sound in a silent world. Praise the LORD for His goodness! I am thankful to be able to give William this gift, this ability to hear all the beauty that God has created for him. And he has the added benefit of being able to turn it all off whenever he wants. Biologically we have changed nothing. He is still deaf and he is still wonderfully made.

"As Thou hast given Him power over all flesh, that He should give eternal life to as many as Thou hast given Him." John 17:2

Giving and Receiving

2009-08-20T13:47:00.005-05:00

"I have showed you all things, how that so laboring ye ought to support the weak, and to remember the words of the Lord Jesus, how He said, 'It is more blessed to give than to receive.'" Acts 20:35

We love to give. I think God put it in our nature as another way to take care of His people. It always feels good to know that you have been His instrument in helping someone in need. Also, we know from Scripture that God intends for us to be generous and willing to share what He has blessed us with. We see in Acts 2 that Christians had all things in common, sold their possessions, and distributed to all, as they had need. (Keep in mind, this was a voluntary act of love, not a socialist government control.) Then they continued daily in one accord, breaking bread together with gladness and singleness of heart, praising God and having favor with all people. Because of this giving, loving attitude, God was pleased to add to the church daily.

We also see in 1 John 3 that if we have worldy goods and see a brother in need, but turn our compassion away from him that the love of God does not dwell in us. Therefore I believe when God's love dwells in us, so does a love for giving. Giving is an easy, enjoyable thing to do.

What can be hard sometimes is being on the receiving end. How do we receive gifts when we know and realize that people are loving us and making large sacrifices because of that love. Even though we are very appreciative, it can be hard to receive the gift. It is definitely humbling! I say this because we have recently been on the receiving end of many gifts on William's behalf. We are definitely appreciative and overwhelmed with humility. Family members have been very generous to us, as well as individual friends. But I think what has touched me most is our church family. Now, I must tell you something about our church. We do not attend a large congregation. We attend a small gathering of 8 families - large families that love children. We do not collect a "tithe," but all giving decisions are made by the head of each home. We do believe in giving, but since we do not have debt and there is no need of a storehouse, each family gives at their own discretion. Now, I mentioned long ago that we rent a van to go on vacation. We've had many issues with our 1998 van and do not trust it on a long trip. This is a pretty sizeable expense. Our dear church family decided they did not want us to have to worry about this expense on our trip to Mayo, but wanted us to be free to focus on William and his needs. They collectively put in to rent our van for us, in full. This was a sacrifice of love. We have families that have been without AC this summer, vehicle trouble, water line troubles, appliance troubles, some that are self-employed in the midst of hard economic times, etc., yet they lovingly sacrificed to be able to give abundantly for William. What better exemplifies the love of Christ than dying to ourselves?

I tell this story for two reasons. One, to express our deep gratitude and love for the members of our church, and two, to appeal to each of you that if you do not already have one, find a church body to be a part of. If you are looking, keep in mind that church is not a place to go to hear a message that will make you "feel good." It should be a place where the whole truth of the Bible is preached, where change is brought about in our lives as we draw nearer to God, where we are loved in spite of our faults, and also held accountable to each other and challenging each other to live for the glory of God. May you be blessed to be part of the church of God.

"So we, being many, are one body in Christ, and every one members one of another." Romans 12:5

MAYO

2009-08-19T00:47:00.001-05:00

Mayo truly is a beautiful place. I know I won't do it justice, but here are some pictures we took while we were there:

Mayo/Gonda Building - Lobby

atrium garden

Someone was almost always singing here or playing music. This lady played "Amazing Grace" on the clarinet. Most of the time we heard someone at the piano they were playing hymns. We heard things like "How Great Thou Art," "Great is Thy Faithfulness," "Be Thou My Vision," "O For a Thousand Tongues to Sing," just to name a few. It was very calming.

The Subway

What they call the subway is what we would call a concourse. Except this one is remarkable! It is an underground tunnel that leads to several different buildings and hotels. Within the tunnel hallways are shops with clothing, jewelry, toys, etc., places to eat, pharmacies and medical supplies, etc.

Floor 16 - Pediatrics

The children's floor is less than 2 years old. It is amazing how they have everything set up.

Pediatric Lobby

One of the 4 corridors leading to rooms (Forest, Woodland, Wetlands, Grasslands)

Physical Therapy room

" Every man's work shall be made manifest: for the day shall declare it, because it shall be revealed by fire; and the fire shall try every man's work of what sort it is." 1 Corinthians 3:13

Finished at Mayo

2009-08-16T01:06:00.003-05:00

After a long week we have finished our appointments at Mayo. We feel that we've come away with some valuable information. We learned that his iron level is well within normal range and his iron stores are bordering on normal. Of course, we also learned that his vision is decreasing more rapidly than first thought. Among the many other things we learned, the most valuable part of the trip was probably physical therapy.

The therapist had him in a new walker that will have him rely on his legs more and quit using his arms and upper body as a brace. We have to get it ordered and pick it up when we get home, which could take 2-4 weeks. He will also be getting leg braces ordered.

She also had him using a compression vest, which is helpful to children with ataxia. The short, easy explanation is that it supports their upper body muscles so they don't have to concentrate on two major areas at once and it frees them up to focus on lower body muscles.

She showed me some great, easy strengthening exercises that we can do at home on the exercise ball. Our biggest challenge when we get home will be finding a facility that can do pediatric PT and OT, that has extensive knowledge with equipment and can use it with him properly.

After the hematology consult and blood pressure test we saw Dr. Brands again. He felt like we are doing all the right things with our doctors at home and, should we decide to pursue testing, we should pursue the neurological and genetic sides from home. He also felt that if nothing comes from those two areas and we decide to press on, we should return to Mayo to pursue mitochondrial issues. We are still in the discussing and deciding stages. We'll see...

And now we're off for some sight seeing. I'll post some great pictures of Mayo when we get home.

"For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me." Psalm 31:3

William at the Waterpark

2009-08-14T00:02:00.001-05:00

One of the many great things about the hotel we are staying in is the waterpark. The children are having such a great time! We've taken at least a little time each day to swim, though some days have been so busy they've only gotten half an hour. However, Wednesday was our short day. We were free all day after lunch, so we stayed at the waterpark all day and into the evening. We got in bed pretty late, but I think the children all agree it was well worth it!

William has so much fun in the water! He loved the "big" waterslide in the adult pool and he had fun in the kiddie pool on the "little" slide, too! And, as you can see, he had a great time playing water basketball with Michael! He loved making the ball go in the net and we all loved watching him be so proud of himself!

I'm thankful that this trip hasn't been all testing, but we've been able to enjoy the time with our children, too!

"Let the heavens be glad, and let the earth rejoice: and let men say among the nations, The LORD reigneth." I Chronicles 16:31

Life at Mayo

2009-08-13T23:18:00.001-05:00

Dr. Driscoll (Physical Medicine and Rehabilitation) and Dr. Lindor (Genetics)

More labs

It's been incredibly busy here at Mayo. William has had some very early mornings, fasting, but he's done great! I think he is starting to tire of the the whole routine, though. When we walked into Mayo this morning, he started crying. He did calm down and was able to complete his round of appointments today.
Basically, we've learned nothing so far. Just lots of consultations, history, examining, and testing. Dr. Kotagal, the neurologist, has some specific testing he wants to run, but it can't be done until next week. We are checking with our neurologist at home to try to run this battery of tests there instead of staying 5 more nights for one day of testing. He also really wants an MRI done and when we told him that could not be done without removing the CI magnets from his head, he insisted there is a way. He is checking with a colleague to find out how to do it, but I called William's surgeon back home who advised us NOT to try an MRI without removing the magnets first. It is just too risky. He said to give the neurologist his cell number if he persists.
Tomorrow is our last round of appointments. We should find out the majority of the test results. We see PT first thing. Dr. Driscoll prescribed some braces for William that we will have to get when we get home. She also wanted us to see PT tomorrow to explore the possibility of a different walker. She gave us some very specific instructions for PT and OT to start as soon as we can find therapists capable of her instructions.
We may not have a diagnosis when we leave, but I feel that we do have some valuable information and direction that will help William. Now we just need to find the kind of therapy at home that he needs.

"Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD." Psalm 27:14

Quick Update

2009-08-11T13:15:00.009-05:00

Dr. Brands - Pediatric consultation

Time is flying by already! There has been so much to do, but it seems to be going well for the most part. Yesterday we had our consult and discussed everything that has happened over the past year and a half and where to do from here. Dr. Brands is not interested in doing any surgery on William to remove the titanium from his implants and agreed that that would be best left to his CI surgeon if an MRI is necessary.
They gave us our schedule for the week. William had a great time in the wide hallways running his walker around.

This morning he had another EEG done. Everything went great! He went to sleep as desired and did not have to be sedated. Thank you all for the prayers!
(Elly,Wallace, and me waiting for William to come out of the EEG with Michael)

After the EEG we went to the Pediatric Ophthalmology department. After the initial visit, they dilated his eyes and he had a great time playing in the waiting room while waiting for the dilation to kick in.

Dr. Mohney examined William and was very concerned about his progressive vision loss. It is even worse now than it was 2 months ago. Dr. Mohney called in a retinal specialist and they examined William together, then discussed some of the many diseases that could be a cause.

William's eyes seem to be the biggest concern right now. They were in agreement that it is highly unusual for a child to deteriorate as rapidly as we are seeing with William. The vision in his right eye has dropped from -3.50 to -5.00 in just 3 more months. The left eye only had a -.50 change, but is still dropping.

Every doctor we've seen has asked us about an MRI. Dr. Edwards felt like INAD is still a huge possibility, even with the blood test, which he shrugged off as "unstable."

We were able to make it back to the hotel for a brief crockpot lunch. Now we are off for a full afternoon of appointments. I'll update more later.

Prayer for tomorrow: more fasting beginning 7:00pm tonight, water only in the morning, labs at 8:00am.

"The LORD will perfect that which concerneth me: thy mercy, O LORD, endureth forever: forsake not the works of thine own hands." Psalm 138:8

The Examination

2009-08-07T12:06:00.001-05:00

We leave for Mayo tomorrow for a week of testing on our little William. The RPGR test has not come in yet and will not be in until the end of the month. One doctor is still convinced that this is what William has, even though my retina is healthy. I won't post a lengthy explanation, but it has something to do with me not being a carrier and William having a new mutation.

The possibility of needing to do an MRI upon our return is increasingly high. If nothing is found at Mayo that seems to be our only recourse.

We are so thankful for the many well wishes and prayers on our behalf. William continues to steal our hearts away moment by moment. He is funny and charming and sweet and tender. We are hopefuly that there will be answers for him at Mayo.

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

Roller Coaster Emotions

2009-07-24T11:48:00.005-05:00

We found out yesterday that we DO NOT have INAD ruled out and William is still a strong candidate for it, as his symptoms are clearly indicitive of such a disease. We received the report in the mail and it said that the PLA2G6 mutation was negative in the blood stream, but this neither confirms or denies the evidence of INAD. I spoke with his doctor who confirmed that this just means the test cannot exclude the diagnosis because there are several ways that INAD presents and that particular method of testing only tests for one of them. The recommendation is to have a retinal exam and a T2-weighted MRI to look for optic atrophy and cerebellar atrophy, which are strong corroborative features of INAD. He has already had the retinal exam, which shows indications of INAD. Our next step will either have to be the MRI, which involves another surgery, or a nerve biopsy. I guess we will be discussing these things at Mayo and we are also staying in touch with the geneticist to see what direction to go.

I found all of this information out after coming home from completing my own ERG. William's geneticist recommended that I have it done because if he does have RPGR, which is an x-linked disease that I would carry and pass down to him, my retina would show signs of being a carrier. We were very excited after this test because my ERG was perfect and my retina showed absolutely no signs of carrying a retinitis pigmentosa related disease. That pretty much rules out the RPGR, even without receiving the results back from Manchester. Then we got home and received the report in the mail. It seems the last 18 months has been a constant roller coaster of emotions like this from the time he first developed RSV/Pneumonia, to finding out that he is deaf, to surgery, to realizing there is much more to find out.

The ERG was strange. They put electrodes on my forehead, earlobe, and in my eyes. The ones they put in my eyes were hard little gold-plated contacts with protrusions.

Then they flashed different colored bright lights into my eyes to examine my retina and see how long it took for my cells to regenerate. This is obviously an over-simplification of the whole process, but you get the idea. It did not hurt, but it was uncomfortable. I got sick at the end, but I think that had more to do with being so uncomfortable AND pregnant.

Thanks for checking on William and keeping him in your prayers. We remain constantly concerned for our dear little boy.

"In my distress I called upon the LORD, and cried to my God: and he did hear my voice out of his temple, and my cry did enter into his ears." 2 Samuel 22:7

INAD NEGATIVE!!!

2009-07-17T00:41:00.002-05:00

We received the results of the INAD testing today - negative! Great news! Thank you all for the prayers! Now we can breathe a little easier while we are waiting another 3 weeks for the RPGR test results and Mayo.

"O LORD, be gracious unto us; we have waited for thee: be thou their arm every morning, our salvation also in the time of trouble." Isaiah 33:2

My Hands are Full

2009-07-11T23:22:00.000-05:00

We went swimming on Friday and had a great time. William loves the water. However, I chose not to try to waterproof his processor on this particular day for several reasons. First and foremost, MY HANDS WERE FULL!

Our grandchildren are staying with us for just over a week, so I now have 6 children in the house that are 4 and under. I just felt it was too much to try to keep up with such an expensive piece of equipment and so many little ones at the same time. At any given time I had at least 3 and usually 4 little ones that I was holding on to or giving dolphin rides to (that's what Hayden is doing in the picture above). It was so much fun!

You know, there have been many times when I've been out somewhere that someone will say to me, "Boy, you've got your hands full!" I always say, "No, not yet." I've always taken it as kind of a derogatory remark, like it was overwhelming or too much to keep up with or just too much period. But as I was looking back on the pictures of the day with my 13yo daughter, I was laughing at myself in all the pictures because my hands were literally always full! And as I was thinking about how much I love it being that way, I decided to change my attitude about that remark. My new answer is going to be, "I certainly do and praise the LORD!"

"Lo, children are a heritage of the LORD: and the fruit of the womb is His reward. As arrows are in the hand of a mighty man; so are children of the youth. Happy is the man that hath his quiver full of them: they shall not be ashamed, but they shall speak with the enemies in the gate." Psalm 127:3-5

Fireworks

2009-07-05T23:30:00.000-05:00

We had a great time with the children last night. They always enjoy fireworks. William even liked them, right up until one made a loud bang! Then he was done and ready to go in, along with Selah, who prefers watching from indoors.

"Blessed is the nation whose God is the LORD; and the people whom He hath chosen for His own inheritance." Psalm 33:12

Change of Plans

2009-07-03T01:42:00.000-05:00

William playing on Mommy's computer

Sickness abounds in our home right now. Seems it usually hits with holiday fun! Elly has been sick since Tuesday, William since yesterday, and Wallace since last night. We chose not to drive for speech therapy today, but we did Skype (teletherapy) instead.
I decided to let William play on my computer (something I never do) before we met with Krissa, in hopes that it would warm him up to therapy. Fortunately, he woke up this morning with no fever (the other symptom, however, has been in full force all day - I won't gross you out with the details, but suffice it to say, I'm doing laundry like crazy).
He had a great time playing on my computer. He pushed nearly every button on the keyboard and I even let him touch the screen a couple of times (I know, I know). It was nice to watch him enjoying himself, especially since he's been so miserable since yesterday.

Therapy started out really great. He listened and even responded with some sounds.

About half way through, the fever kicked back in. You could definitely tell that William was done with therapy. I think, all in all, he did better this time than the last time. Maybe it will get even better. We're going to try it again on Monday.

Because of all the sickness all of our weekend plans have changed. Though I'm so tired that it doesn't make much of a difference to me, I feel bad for the children. They are troopers, though! Not one complaint. We have the most amazing, sweet children! They are just concerned about the babies. I really appreciate their thoughtfulness and unselfishness. We'll have to try to go play in the water after the little ones are better.

We found out yesterday that our grandchildren are coming to stay with us for a week! Very exciting! They are being relocated again soon (military), so they'll get to come for a visit before they move again. I'll be sure to post some pictures.
By the way, I have poison ivy. And it keeps spreading. Yuck! Why is it I get this stuff only when I'm pregnant?

"For a day in thy courts is better than a thousand. I had rather be a doorkeeper in the house of my God, than to dwell in the tents of wickedness." Psalm 84:10

Testing the Waters

2009-06-29T17:13:00.006-05:00

Update: I forgot to disclose a method for testing in the last post. For those of you interested in whether this way of waterproofing a cochlear processor really works and if you're hesitant (like me) to put such an expensive piece of equipment under water to be the guinea pig, here is one of the simple tests I used.

Take a Lok Sak, place a small piece of bread, seal it up, and place it in a bowl of water. Set a timer. I chose bread because I thought I would easily be able to tell if it took on any water. Find something to use as a paperweight (I used a jar of buttons) that will push the Sak to the bottom. Set the timer for as long as you want to wait - you will not see ANY water anywhere on the inside of the Sak!

My 10yo daughter was very excited that the bread was completely dry when she took it out of the Sak and ate it!

I have tried the Sak out using food, money, AA batteries, and Kleenex, just to name a few. I've never found any water inside! Best of all, it worked with the processor!

"Deal with thy servant according unto thy mercy, and teach me thy statutes." Psalm 119:124

Swimming with a Cochlear Implant

2009-06-29T13:18:00.015-05:00

William LOVES water! A lot of children do. As the parent of a very young CI user, it is hard to determine how to balance out this love of water, giving them time to play "normally," and yet not hinder their listening skills or speech development. I am very happy to say we have found a solution that works well for our family!
We watched the video on YouTube posted by "alexswims."
http://www.youtube.com/watch?v=jYTg7dmsrpo
Very interesting! His parents really put a lot of thought and effort into finding a way for him to be able to hear and swim at the same time. It probably took them a lot of time (and money) to experiment with different things until they found something that worked. They emphasized a couple of mistakes to avoid (like which type of battery to use and not to vacuum seal the bag). My guess is, they might have learned these things from trial and error. Anyway, we checked into buying a food saver V2490. We might still buy one, but at this time, that didn't make the most sense to us. The cheapest one we found had a starting bid of $55, plus shipping and handling, plus the cost of the roll. Total cost was around $95. This isn't bad, when you consider the cost of the processor itself, but we weren't sure if William would even wear this. When you're dealing with an 8-10 year old that can reason cognitively, that's one thing, but a 2 year old can be a whole different story. We chose a much cheaper route.
I ordered Lok Saks from http://www.loksak.com/. The small 5x4" size are $6.39 for a pack of 3. Add s/h and we ended up paying only $2.79 per sack. The sacks are reusable, so we have the sack we use, plus many backups (we ordered 9). I also ordered an adult size logo swim cap (it was the cheapest) from Swim Outlet. With s/h, my total was only $9.94. The best part is: it worked great!!! And William loved it! We did it a little differently than Alex's parents. Alex wore his entire processor under the swim cap, which would be more reasonable for diving to the bottom of the pool. We put William's magnet under the swim cap, but left the processor on the outside so we could see the blinking light.

Since he does not communicate to us all of the time that his processor is off or not working, this helped us to make sure that the magnet stayed in place during his play (which it did the entire time)!
William is as active as any other 2 year old and is always wild in the pool. His hair was wet, but the processor was completely dry when he was done! And he had a great time playing in the pool and on the slide!

We thought that this would be a temporary fix and we would switch to the Food Saver when he is older and wants to dive and swim under water for long periods of time, but the Lok Sak bags have passed submergence, thrash and pull tests conducted by the U.S. Navy Experimental Diving Unit Team and have been certified waterproof to 60 meters by Scuba Schools International, formerly NASDS. They work so well that I can see us continuing to use these bags even as he gets older. They are convenient and portable (I carry 2 extra ones in his extra battery bag, just in case we're near water sometime), they work incredibly well, and they are extremely cost effective! What a great combination!

This was so easy to do and stayed on so well, I'm thinking Cochlear should be able to come up with a waterproof unit or something soon. I remember when Bryce was little he used to have terrible ear infections, but he loved the water. We had some special (expensive) ear plugs made for him at the ENT and they came with an ear band that went around his head to help keep them in.
(sample pictures of the Ear Band It)
I'm sure Cochear could come up with something similar that would hold the magnets on and have a sealable bag sewn into it for the processors. All it takes is some parents writing or calling to let them know how much we want it (HINT, HINT, HINT).
Thanks to Alex's parents for the great idea (and the trial and error)! I'm so glad to not have to sacrifice one benefit for another!

"Teach me good judgment and knowledge: for I have believed thy commandments." Psalm 119:66

There Shall Be Showers of Blessing

2009-06-26T11:15:00.007-05:00

I love this hymn. I have been humming and singing it a lot lately. I feel the mercy drops, but I am crying out for the showers!

...

"There shall be showers of blessing," This is the promise of love;

There shall be seasons refreshing, Sent from the Saviour above.

Showers of blessing, Showers of blessing we need:

Mercy-drops round us are falling, But for the showers we plead.

"There shall be showers of blessing": Oh, that today they might fall,

Now as to God we're confessing, Now as on Jesus we call!

Showers of blessing, Showers of blessing we need:

Mercy-drops round us are falling, But for the showers we plead.

"And I will make them and the places round about my hill a blessing; and I will cause the shower to come down in his season; there shall be showers of blessing." Ezekiel 34:26

Delivered!

2009-06-24T08:55:00.005-05:00

This sweet, sweet boy gives GREAT hugs!

The RPGR package has been delivered to Manchester! It arrived 8 hours earlier than expected. Very exciting! Both packages have arrived and been signed for and now just need to be processed.

On another great note: Michael got home last night and found William's glasses, right on top of the white sack I had put them on and they had NOT gone into the trash! Yeah! And to continue the good news, when I called about the glasses this morning, they were able to pull the rush order in time and not charge us anything! Whew!

We did have a slight scare last night. After I got William out of the bath, his right ear was bright red and starting to swell. Of course, it immediately made us think of when he was in the hospital with the mastoid infection because that was how it started out. We took his processors off of his ears (but left the magnets on), I emailed his surgeon pictures and we decided to watch it, fully expecting to make another trip to the city today. When he woke up this morning the red was still there, but no swelling. We'll keep watching it, but for now it looks okay.

"Who hath wrought and done it, calling the generations from the beginning? I the LORD, the first, and with the last; I am He." Isaiah 41:4

Ready for Rest

2009-06-23T16:51:00.004-05:00

The blood work is done! The RPGR is headed for Manchester, England, due to arrive tomorrow and the INAD arrived in Portland, Oregon, this morning (5 hours earlier than expected). Hooray for FedEx tracking numbers!

We've had an extemely busy few days. Here's a brief recap:

Thursday - 5 hours driving, 1 hour speech therapy

Friday - 2 hours driving, 2 hours waiting for an appointment to examine my retina (for further information on how to test for William) that turned out to be unnecessary since I'm 4 months pregnant and the doctor wouldn't dilate until 6 months, 3 hours grocery and errands

Saturday - 2 1/2 hour trip into town for supplies I forgot to pick up on Friday, girls sewing, putting quilt together

Sunday - church, family visit, home to prepare for trip to city, 5 hours of driving

Monday - drive to city, labs for William, therapy, visit family, visit more family, go eat dinner = 7 hours in the van and home at 11:30pm

Tuesday - extremely tired, Wallace woke up at 6:30am, girls at 8:45, and William slept until 9, put his processors on him, went to put his glasses on and they weren't in his case, PANIC, we all looked around frantically for an hour, remembered Sarah giving them to me last night when he went to sleep in the van, I put them on a white sack because I was on the phone and couldn't reach his case at that moment, forgot about them, got home, Michael gathered trash in the dark at midnight, took trash to curb, trash men came at 7am

Needless to say, I am extremely frustrated with myself! I called to replace his eyeglasses. For another $250 that we didn't count on, they will be ready on Friday. She asked if I was sure I lost them and laughed when she saw he'd only had them A MONTH! Not greatly funny, if you ask me.

On another note, Wallace is walking. While this is, in and of itself, very exciting, it is also exhausting! Who ever heard of an 8 month old walking? I am reminding myself that I am very thankful that he is strong and healthy!

"The LORD is my strength and my shield; my heart trusts in Him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise Him." Psalm 28:7

Learning to Listen (and Talk)!

2009-06-20T11:12:00.011-05:00

I love this picture! It really captures the personality of my sweet little boy!
One thing William absolutely does not like is road noise. When we are in the car for more than half an hour, off come the processors! The glasses aren't far behind. Then he usually gets bored and goes to sleep or pulls the hair of his sister next to him, trying to get her to play!

Speech went well this week. Here, he is very patiently waiting and listening for Krissa's cue before letting the bird go down the slide. He did a great job! He loved making the bird go down the slide. It's always very tempting, when we leave therapy, to run out and buy the things he loves most, but I want him to be interested in the toys at therapy and I'm afraid he won't be if he plays with them all the time at home.

Several people have been asking how William's speech is coming along, so I thought I would list his words here. His speech is actually not as far along as I would like, but he is doing well. Even though he might not be talking fluently, he is definitely hearing, listening, and understanding A LOT! That is exciting!

His newest thing is eyes. He loves pointing to his eyes or my eyes whenever I mention eyes. When I ask him if he wants his eyeglasses on, he always puts his finger right between his eyes. When I tell him it's time to take them off, he takes them off and hands them to me. Last night he actually said, "EYE," for the first time. He was pointing to my eye and I said, "eye," then he pointed to his eye and he said, "eye." First times for words are always fun!

He also says: Dada, Mama, Ra-ra (Sarah), I love you, Amen, bite, bye-bye, hi, up, uh-oh, and no. Aside from these definite words, he has many sounds that he is making for things (like ahhh - airplane, rrrr - rooster, mmmmm -cow, etc.)! He's says, "Woof, woof, woof," whenever we're around a dog. He really tries to make a gallup sound for a horse, but hasn't quite gotten it down yet. He still does sign language for eat, drink, all done, sleep, I love you, and please. He will also use two words together when he sees Michael. He'll say, "Hi, Dada."
What is almost even more exciting, to me anyway, is that he understands so much. He gives us the "thumbs up" sign when we tell him "good job." Whenever we ask for a kiss, he will put his lips together, pucker up, hum, and put his face out for a kiss. I can tell him to take something to one of the girls or Daddy, and he does it, without hand gestures. When I tell him to come get his diaper changed, he comes and lays down in front of me. He will give me his cup when I ask him to, put things down on command, and put his toys away in the drawer when he's told. He will point to his eyes, nose, ears, head, and feet when asked. He also will put his leg out to put his pants on when I ask him to. He can distinguish songs: he hums along when I sing his bedtime song, claps when we sing "Arise and Sing," does spider movements for "Itsy Bitsy Spider," and he does all the movements to "Wheels on the Bus." One of the newest things he's doing that is incredible is: when I tell him to come back to the carpet when he crosses over to the tile, he turns around looks at me, thinks about it, then turns around and comes back to the carpet! Very exciting! Not only is he listening and hearing, but he is also obeying (or at least it's a beginning)!

"Observe and hear all these words which I command thee, that it may go well with thee, and with thy children after thee forever, when thou doest that which is good and right in the sight of the LORD thy God." Deuteronomy 12:28

Blood Work Monday

2009-06-19T06:11:00.007-05:00

I feel like we might actually be getting somewhere. There are several things in the works and I feel like we are at least doing something, not just sitting around waiting to see what will happen. Aside from Mayo, our pediatric Neurologist has been working with a couple of clinics to get some tests done ahead of time. A couple of our doctors have mentioned different diseases that fit William's symptoms: RPGR psuedo-Usher and Infantile Neuroaxonal Dystrophy.
We have wanted to test for these for quite some time, but there are issues. There are only 5 labs that test for RPGR, all oversees (and only one is English-speaking). The issue here is that one of our doctors has tried sending labs oversees before and never gotten a response. They were looking at sending us to Washington, D.C. to the National Eye Institute to run a research lab, but we can only go when the NEI is researching that particular disease, which could be in 5 years, who knows? Also, they don't accept outside blood draws, but have to draw the lab there.
INAD is a rare disease and not a lot of labs run the test for it either. There is a rare disease clinic at Oregon University. We thought we were going to have to go there for the draw as well, but it looks like everything is working out nicely. Dr. Norman has made contact with both labs, gotten specific instructions for drawing and sending, and we will go to her office on Monday to draw both labs. RPGR has a 6 week turn around time and INAD has a 3 week turn around time. I can wait for the results, I'll just be glad to have the tests in the works. What would be really great is if we could get both results back before we head to Mayo. We have many reasons to hope that both tests come back negative, but if either test is positive it will make the trip to Mayo unnecessary.

RPGR generally leaves patients completely blind within 10-12 years after their retina begins deterioration. INAD patients continue to get worse and have a life span of 5-10 years. Of course, we are still praying that both diseases come back negative and we need to look for a mitochondrial issue.

I have been wrestling with my own conscience, fighting fear and worry, and generally stressing out. But I have also been crying out to God for His mercy and grace in our lives. It is almost a daily struggle, but I am finally able to rest and feel at peace. I know that whatever happens, God is in control. He loves my little boy and has a purpose for his life because He created him. In fact, He knew William and his purpose and what He intended for him before He even created the world. And I know that I can trust Him. He WILL see us through, whatever happens. I am thankful that He blessed us with the sweet, precious gift of this little boy and I am thankful for each day we are given with him. I know that every second is a special gift of grace, love, and mercy, not to be taken for granted. While I wish that William did not have to go through these things, I pray that through all of this, God will get the glory due to Him. May His name be praised forevermore!

"According as He hath chosen us in Him before the foundation of the world, that we should be holy and without blame before Him in love." Ephesians 1:4

Mayo

2009-06-12T16:05:00.002-05:00

The difference of a day: we received a call today from Mayo. They had a cancellation and William has been bumped up to August. Every little bit helps - we're moving forward!

The alternator went out in our van, so we were unable to make the scheduled trip to the city for speech therapy. We used Skype instead. It was okay, as a backup, but not what I would consider best for William. I don't know if he was afraid of the computer talking or what, but he pretty much ignored Krissa altogether. Also, he did not want to sit there like he usually does for therapy. Hopefully he will get better as he gets older, but for now, it looks like the trips are necessary!

“And now, saith the LORD that formed me from the womb to be his servant, to bring Jacob again to him, Though Israel be not gathered, yet shall I be glorious in the eyes of the LORD, and my God shall be my strength.” Isaiah 49:5

3 More Months

2009-06-11T09:47:00.009-05:00

William's new found loves: hot wheel cars...

We will be going to Mayo in September. I know 3 months doesn't seem like much, but for us, it's been a year of waiting for appointments. I will be glad to get this appointment over with. We are so hopeful that we will be able to find a diagnosis. It would be nice if it's something that we can help him with.

...and playing in Pappaw's cabinet!

PS - I added two new slideshows in the sidebar - enjoy!

“Behold, the LORD's hand is not shortened, that it cannot save; neither his ear heavy, that it cannot hear.” Isaiah 59:1

Ups and Downs

2009-06-08T12:48:00.003-05:00

Even though the first day of the walker went very well, it seems to be a kind of roller coaster, with good days and bad days. The second day of using the walker did not go very well. He wanted in it, but didn't seem to have the strength to walk for long. Unfortunately, I ended up without a stroller, carrying William, and pushing the walker. Needless to say, I don't think I'll leave home again without at least ONE helper! I am glad it was a quick, unnecessary trip to Wal-Mart.

Saturday William had a great time in the walker, especially playing outside! He didn't really use it much yesterday. He really liked being able to get wherever he wanted outside, getting on and off of his self-push 4-wheeler by himself and going to see the dogs and cat whenever he wanted. It's nice for him to have some independence.

We are expecting to hear back from Mayo by tomorrow. I will be glad to know our schedule. We have been preparing dry foods (muffins, breads, cookies, etc.) to take with us - I hope the children won't eat it all before we leave! Our pediatrician is looking into another avenue of testing for us. Right now we have about 3 things to test for. I am unsure if we will test for these things before we leave for Mayo, or if we will be doing the testing there.

A little bad news: the Ronald McDonald House only allows one room per family, so even if they have room availability when we get there, we will have to get at least one hotel room someplace else. Also, we are entering peak season for summer camps and special events that are put on at Mayo, so the possibility of them even having one room looks doubtful. It looks like we'll be needing two hotel rooms after all.

Thank you all for the prayers and words of encouragement. Although I really want to find a diagnosis, I am also hoping it's not any of the current things they are wanting to test for. I am trying not to let my mind go into the future until we have an actual diagnosis.

"As thou knowest not what is the way of the spirit, nor how the bones do grow in the womb of her that is with child: even so thou knowest not the works of God who maketh all." Ecclesiastes 11:5

Walker

2009-06-05T08:49:00.005-05:00

William loves his new walker! He is doing a great job getting around with it! It is so much fun to watch him run all over the place! He gets this sweet look on his face and you can tell he's just so proud of himself! Last night we went for a walk around the block and he made it about halfway before he was too tired to continue. You can tell he really enjoys the independence!

"For the LORD God is a sun and shield: the LORD will give grace and glory: no good thing will He withhold from them that walk uprightly." Psalm 84:11

In the Works

2009-06-03T17:23:00.011-05:00

We may have our diagnosis on little William soon. The doctors are thinking he has a pseudo-Usher disease, known as a blind-deaf disease. Of course, we are hoping it's not that, but instead we're still hoping it is a mitochondrial issue. We are definitely moving forward, though. Yesterday we got all of our paper work faxed to the Pediatric Diagnostic Clinic at the Mayo Eugenio Litta Children's Hospital in Rochester, MN. The head of pediatrics is looking over everything and they will be calling us in 3-5 days with our appointment date. We were told they are now scheduling for September, but we are hoping that when they read William's information he might get moved up on the list. We'll see. One of his doctors is also checking into another possible avenue (The National Eye Institute in Washington, D.C.) for testing of this particular disease. I'm not sure which route we'll take if both things work out, but we may end up having to go to both places. The NEI will only test for the one disease and if it's not that we would be back at square one.
Tomorrow is a big day. We start driving to the city for therapy, ugh! Okay, I'm half-joking about the ugh! While I don't look forward to the drive, I do believe this is best for William. And our entire family would miss not seeing Krissa! We feel like she's become a part of our family. For an even better thought...tomorrow William gets his walker! We are very hopeful that it will help him gain strength and confidence for walking, hopefully on his own one day!
Here's an update on the 3 diseases that the Pediatric Neuro Ophthalmologist wanted to test for after getting the results of the ERG: they've already been tested for and he is negative for all three! We are very glad about that - none of them had a halfway good prognosis!

Some of you have been asking how you can pray for us, so here's what we need:

First, on the practical side, lodging. The Ronald McDonald house does not take reservations, but is set up on a first-come, first-served basis. Also, they only allow 5 people to a room. This means that for us to stay there, not only do they have to have 1 room open, but 2 adjoining rooms at the same time, or we will have to get 2 hotel rooms. Since we aren't sure about the length of our stay, which could range from 3-10 days, this makes things difficult to plan.

Second, strength for our little boy and for our family. William is doing well right now, Mommy is still kind of struggling. We are so thankful that we have the Lord to lean on - I don't know what we would do in other circumstances. How do you handle the uncertainty of the future when you don't know Who holds that future? As much as we love our little William, we find peace and comfort in knowing that he is in the hands of the One who loves him even more.

Third, wisdom in all of our decision making. Right now, especially with the decision on whether or not to drive our own van (which has given us trouble for quite some time) to MN, or rent one. Also, wisdom in deciding which hospital to go to first, or if we should pick one over the other, should that opportunity arise for both.

Last, and certainly least on the list, we need the initiative to continue as normal with our schooling. We are fortunate that all of our girls are pretty well self-motivated and a good deal ahead in their schooling, but we don't want that to cause us to get lax. I have been struggling with keeping up with grading and planning, but I am thankful to have a lot of help.

Thank you all for the prayers, words of encouragement, and the phone calls to check on William. I know I post information here, but that is only because I can't possibly call everyone. We are always grateful when you let us know that he is on your hearts as well. We appreciate all of you!

"For My thoughts are not your thoughts, neither are your ways My ways, saith the LORD. For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts. For as the rain cometh down, and the snow from heaven, and returneth not thither, but watereth the earth, and maketh it bring forth and bud, that it may give seed to the sower, and bread to the eater: So shall My word be that goeth forth out of My mouth: it shall not return unto Me void, but it shall accomplish that which I please, and it shall prosper in the thing whereto I sent it. For ye shall go out with joy, and be led forth with peace: the mountains and the hills shall break forth before you into singing, and all the trees of the field shall clap their hands." Isa 55:8-12