Testing the Waters

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

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

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!

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

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)!

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

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

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

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

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

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

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