Courage

I love the fact that my little boy can hear and play the piano and sing along with his older sister. Quite honestly, that is something I've always taken for granted, when my little ones began doing those things.

I haven't decided if I think the Internet is a blessing or a curse: the world at our fingertips. That should be a good thing, however, as I've been looking up these new diseases that we're going to be testing for, I am fighting a gamut of emotions. I wonder if it would be better if I was the type of person to just wait until I have a definite answer before I began researching anything. It is always easy to let fear overwhelm us. The hard part is to rest in the Lord, be strong, and take courage. I am truly trying.

"Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them." ~ Ralph Waldo Emerson

"Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest." Joshua 1:9

More Testing

photography by JCPenney

This is William's 2-year-old picture. I just had to post it, even though he looks completely different with his glasses, only a month later.

The rest of the ERG results are in. The cells in both of his retinas are affected equally and both the rods and the cones are affected (color vision and black/white vision). Deterioration is a little worse than we originally thought, as the doctor is now saying somewhere between 30-60%. He is hopeful that the rate of deterioration will stable out now and the deterioration will not happen as drastically as it did in the past 4-7 months. We will continue to pray for his vision.

Based off of the ERG, we do have several things to start looking at that cause deafness, hypotonia, imbalance, lung dysfunction, and retinal degeneration. Some of them seem less likely than others, but the one that stands out to me and seems to fit all of his symptoms is a retinal phenotype psuedo-Usher Disease associated with Retinitis Pigmentosa, presented in the GTPA regulator gene. We have a couple of doctors still speaking with each other to figure out some other things, but we will have a definite direction next week. I am so glad they are working together to try to keep William's testing to a minimum.

William is getting a walker next week. We are hopeful that this will help him to begin to learn to get around more independently.

I found this quote while reading recently. I did not write down where I found it exactly, but it has been a sweet reminder on our white board.

"Peace affects our everyday living. It is not for a season, it is a way of life."

"And let the peace of God rule in your hearts, to the which also ye are called…and be ye thankful.” 1 Corinthians 13:5

William's Day at the Nature Park

feeding the geese

On Memorial Day we went to a nature park near our home. We had such a good time! It was so much fun to watch William, with all of the new sights and sounds he is now able to hear and see! I lost count of the number of times he heard something new and pointed to his ear and said, "Oooh?" That's his, "What?" It's his cue for me to go point out what the new sound is.

William loved the beaver! He kept patting his leg and trying to call it over to him. It was so cute!

He also had a great time talking to the coyote. Michael would make a coyote sound, then William would repeat it back, then the coyote would start in howling, too! It was hilarious! The girls got a little video of it that they posted on their blog - www.sendingoutarrows.blogspot.com - it's kind of hard to tell with all of the howling who is who, but you can hear all three of them!

William enjoyed his first oreo cookie - well, half of it anyway. After he ate the first half, he carried the second half around in his hand for a good while. I ended up taking it from him after I felt it was not edible anymore. He wasn't very happy with me!

This picture is actually on the way to the nature park. I think it is so cute! William likes his new glasses so much - he wants to wear them all the time!

P.S. In case any of you are wondering why on earth we would dress our sweet little boy in long sleeves and pants at the end of May, it's because the poor child is severely allergic to mosquitoes! And chemicals (bug spray)! For his comfort though, we did wait until later in the day to go, when it was cooler.

"For the invisible things of Him from the creation of the world are clearly seen, being understood by the things that are made, even His eternal power and Godhead; so that they are without excuse:" Romans 1:20

Eyeglasses

William got his eyeglasses today. Doesn't he look cute? He's such a sweet and handsome boy! It was so fun to watch him with them. He kept pointing at everything. It was easy to tell he was seeing things from a new perspective!

I spoke with another ophthalmologist last night who is very close to our area. He was extremely helpful. He was very open and honest with me, not giving false hope, but not being hopeless either. I appreciate that. Of course, I was very concerned about blindness. I asked a lot of questions about blindness and what constitutes "legally blind." A person is considered "legally blind" when his/her visual acuity is 20/200 or less in the better eye with best correction. William's visual acuity is about 20/400 without correction, but fortunately he can still receive correction. As long as he is able to be corrected with lenses, he will not be considered legally blind. Dr. Groves also explained that there is nothing that can be done to stop a degenerating retina. We just have to wait to see how quickly it continues to deteriorate. His suggestion is that we prepare William to live with the worst, but hope for the best. At some point we may end up seeing a low vision specialist for braille and other things helpful for people with low vision. Of course, we are hoping that the rate of deterioration is slow and that his vision will always be able to be corrected with lenses, no matter how thick!

We are going to try to really press forward quickly with speech therapy. Our therapist is moving back to the city, over 2 hours away, but we are going to follow her. Now, more than ever, it seems such a great blessing that we did the CI when we did. We had honestly considered waiting until he was older. I am excited to see how this affects his speech therapy. I've noticed times when Krissa asks him for a certain toy and he reaches for something else. I've thought to myself, "He knows what that is." I wonder if being able to see better will change how he performs in therapy. I'll let you know!

William, pointing to Mommy's glasses, then pointing to his own

"And in that day shall the deaf hear the words of the book, and the eyes of the blind shall see out of obscurity, and out of darkness." Isaiah 29:18

ERG Complete

waking up from anesthesia

The ERG went well. They were able to get a good, solid, valid test. Yeah, no repeat! For now, anyway. You'll notice in the picture that William has his processors on already. This was before he was even fully awake. The first thing he did when he opened his eyes was point to his ears, which is what he does every morning when he gets up. That's his signal for, "Hey, I want to hear!"
We did receive some good news. Based off of William's retina, it was easy to tell that he does NOT have Usher Syndrome. The good news here is that there is nothing to say that he will definitely go blind. The hard news is that his retina shows only 20-40% deterioration, which means we face two possibilities. One: his retina is now stable and his current vision will be what he keeps. Two: his retina could continue to deteriorate and may have another 60-80% to go. That would obviously be bad for his vision. Because of this we will have to repeat the ERG several months into the future to see how the progression is going.

kicked back, relaxing with Mommy

We are waiting for the rest of the test results to be read. By next week we should have a better idea of what we need to be testing for. We are hoping to have some clear direction by Tuesday or Wednesday at the latest.
At this point I must say, we are very happy with the surgery center and staff. Everyone was compassionate and attentive to William's needs. Dr. Siatkowski was caring and informative. I have to admit that it's possible to misjudge someone after only one meeting. I would hate to be summed up after only one meeting, especially if I was having a bad day. I realize that the first impression isn't always the right one. That being said: thank you to Dr. Siatkowski, Dr. Crane, and to everyone at the Surgery Center. Aside from safety, our big concern was William's emotional well-being. Do you know, he never cried once? Praise the Lord!
with Sarah, dressed and ready to head home!


I know I left off with this verse last time, but it's so comforting and reassuring that I just had to post it one more time:

"Casting all your care upon Him, for He cares for you." 1 Peter 5:7

Calming Down

Wow! Did you ever totally overreact to something, then feel bad that your first reaction wasn't to fully rely on God and take comfort, knowing He is in control? Well, that's what happened to me Friday. I was so dumbfounded at the possibility that William could be blind and deaf, that I momentarily forgot Who would work all things together for his good.

So, here is an update: first, I had to get through the weekend. This could have been extremely difficult if it weren't for my super fabulous, intelligent, godly, loving husband who, among other things, pointed me to this comforting passage in 1 Peter 5:

Therefore humble yourselves under the mighty hand of God, that He may exalt you in due time, casting all your care upon Him, for He cares for you. Be sober, be vigilant; because your adversary the devil walks about like a roaring lion, seeking whom he may devour. Resist him, steadfast in the faith, knowing that the same sufferings are experienced by your brotherhood in the world. But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. Amen. (6-11)

We spent the weekend praying for our little boy, researching doctors and hospitals, asking friends for help, and writing letters to doctors. Monday morning Michael faxed letters out and I ended up speaking with several doctor's offices. By late Monday afternoon, things had come together very well. I am especially thankful for our pediatric ophthalmologist's office. Dr. Scott's nurse was very helpful to me. She took the time to explain many things and really made me feel better about how things were playing out. And she got us an appointment with a retinal specialist here in our state! We will see him after the ERG is done, which will be tomorrow (Thursday, May 21). We have to be there at 6am and I believe they will start sedation within the hour. I am unsure how long the procedure will take, but we appreciate your prayers for William. We are very happy with the way the ERG worked out. The facility has been more than accomodating to William's needs and has indeed been very child-friendly and caring.

We are still looking at the possibility of doing some testing at a hospital out of state, depending on the results of the ERG. I am very glad that we were able to get the ERG scheduled so quickly.

Thank you so much to everyone who was looking for doctors. Everyone was so very helpful. A couple of them we are still talking to for possibly using at a later date.

I meant to update yesterday, but my grandmother died Monday night and I spent a large portion of the day with family yesterday. The funeral is this afternoon. I'll try to update after the procedure tomorrow, but if I don't get to it, don't feel bad about calling. Thank you for checking on our precious little boy!

"Casting all your care upon Him, for He cares for you." 1 Peter 5:7

Disappointment

Dr. Siatkowski
We finally were able to see the pediatric neuro ophthalmologist today. The good news is that his pale optic nerves are not caused by nerve damage. The bad news is that they are caused by his degenerating retina. William's eyesight has definitely gotten worse. He is being fitted for glasses and will be undergoing another sedated procedure called an E.R.G. (electroretinography). Hopefully it will tell us how bad his retina is and will be in the future. The doctor could not tell at this point if he will lose his eyesight altogether, though he does expect it to continue to get worse. He is hopeful that he will know more definitively about William's chances of blindness after the E.R.G.
The procedure will be in about 2 weeks. We are diligently seeking another facility for this procedure, but there is not one in our state. We will do it here if we must, but if anyone knows of a facility that is capable of this type of procedure and is child-friendly and sensitive to each child's unique needs, please contact us as soon as possible. We are willing to drive anywhere in the USA.

William really liked his eye patch, especially when they were done with testing and he was able to wear it as a sticker on his shirt!

Some time ago, one of my daughters wrote out this quote for me that seems especially pertinent at this time:

"A house built on sand is, in fair weather, just as good as if built on a rock. A cobweb is as good as the mightiest chain cable where there is no strain on it. It is the trial that proves one thing weak and another strong." - Beecher

I must say, I'm feeling pretty weak right now. I'm glad the Lord is strong!

"Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." 1 Corinthians 1:3-4

Better Hearing and Speech Month

May is Better Hearing and Speech Month.

Here are some interesting facts:

*1 out of 10 Americans have a hearing loss - that's more than 31 million people! (Better Hearing Institute)

*Each year in the United States, more than 12,000 babies are born with hearing loss. (Centers for Disease Control and Prevention)

*Hearing impairment affects 10% of the population and is the 3rd most common chronic health condition in the US. (Audiology Foundation of America)

*93% of consumers with hearing devices say their quality of life has been improved. (Audiology Foundation of America)

Did you know...

*crickets have their hearing organs in their knees?

*male mosquitoes hear with thousands of tiny hairs growing on their antennae?

Here are some fun ideas for supporting Better Hearing and Speech Month:

*Enjoy a conversation with your child today - take pleasure in the sound of his voice!

*Turn off the television and share a story with your child.

*Enjoy a nature walk with your child - point out your favorite nature sounds.

Some great quotes:

"Because Life is Worth Hearing!" - Cochlear Americas

"It is a terrible thing to see and have no vision." - Helen Keller

"Many persons have a wrong idea of what constitutes true happiness. It is not attained through self-gratification but through fidelity to a worthy purpose." - Helen Keller

"I will hear what God the LORD will speak: for he will speak peace unto his people, and to his saints: but let them not turn again to folly." Psalm 85:8

CALLING ALL CHRISTIANS

I've never actually made a post about the children in the sidebar that we are praying for, but I made an exception for this one. I won't give all the details here, but Little Tait was born 6 months into the pregnancy. Praise the Lord, after 3 months in the Neonatal Intensive Care Unit, he is at home and doing well! However, his hospital bills are enormous. His parents have taken a noble stand to not accept welfare and force the tax payers to pay their son's bills. Instead, they are sacrificing and accepting their responsibility to care for their own child. As Christians, we should rally around them and support them in any way we can. If you are interested in making a donation or reading Little Tait's story, go to his blog at http://www.littletait.com/. May the Lord bless their integrity!

"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

Goofing Around

This picture is of William laughing at Mommy who is trying to do the hula hoop, but not succeeding very well! He got the biggest kick out of watching me!

There's not really much to update. We saw the geneticist a couple of weeks ago. He confirmed that William has a mitochondrial disease. Now we have to decide whether to keep testing to find out which one. Since there are no cures for these diseases, knowing which one will only tell us what to expect in the future. We are going to wait until after we see the Pediatric Neuro Ophthalmologist on May 15 to make any decisions.

By the way, thanks for the ideas on the water play. I even received a link to a video on YouTube about parents who "waterproof" their child's processors. Very creative! Michael and I discussed some ideas and came up with something we think will work for him. We had to place a couple of orders online, but I'll make a post on it when we get it all working.

After waiting 4 months for an appointment for the most recent specialist, we only have 9 days left! I can't wait to go!

What man of you, having a hundred sheep, if he lose one of them, doth not leave the ninety and nine in the wilderness, and go after that which is lost, until he find it? Luke 15:4