A Sister's Post

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

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!

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

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