28 March 2014

My Testimony

I was asked by Pastor Joe to give my testimony a couple of weeks ago. He called on Tuesday and asked if I could give it at the Wednesday night service. That gave me a little over 24 hours to prepare. Luckily I happen to know the topic very well. ;)

I asked what exactly he was looking for because I have a long and winded testimony from my first experience with a saving grace God to a testimony of what we've been through as a family over the years. He said he would be preaching on the verse in Thessalonians on praying without ceasing and asked if there was something I could share from there. I told him I hadn't ever been asked for a testimony so this was new for me but I'd see what I could do.

I had no idea what Joe would be preaching on other than that verse. I knew I would be talking after Joe's message and as I sat there listening to him preach that night, I felt like I understood why he asked me to share.

I had spent the day fasting and in prayer over what exactly I should share. I wasn't sure. I knew there were things I wanted to say but felt God leading me away from those things and focusing more on a bit of our journey over the last 7 years.

When I was listening to Joe preach, I was in awe over the direction his topic went and how my heart had been prepped by God to share exactly what I shared. I was thankful that God showed up and spoke for me, I know he was at work that night and prepared everything exactly as He wanted it. He told His story.

Joe spoke on continual gratefulness and how everything works for good for those who are called according to God's purpose. He talked about how God intentionally takes us through unpleasant circumstances and takes us through pain and difficulties. And yet, those things can work out for out good. I can so relate.

I prayed that sharing my testimony would bless just one person, that God would speak through me and that He would be seen in the bigger picture of my life. I pray that if you haven't heard me speak yet, that you'll listen and hear God's story woven through mine and you will see God's unending mercies in my life.

If you'd like to hear me speak, you can click on this link. It is the March 5th message titled Praying Without Ceasing.

You can also hear the message and my testimony from our Temple website.

You have to listen to the entire message. It's so good. Especially when you realize that Joe and I did not synchronize our messages. That's the kind of God we serve, who speaks through a mom like me and allows me to share the glorious things He's done.

The whole sermon is only 37 minutes, I'm a bit long winded, at 12 minutes at the end.  So if you'd like to just listen to me it's the last 15 minutes of the sermon.

Whew! God is powerful stuff!


https://itunes.apple.com/us/podcast/pray-without-ceasing-audio/id325048943?i=273850713&mt=2
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24 March 2014

Didn't see that coming.

Holy diagnosis, Batman!  I got an email to log into our Blue Cross Blue Shield account because new information had been added for Liam. I've never gotten a notice like that so I logged in to check it out. I found a page that I didn't even know existed. It's a list of everything that Liam has ever been diagnosed with. It's creepy scary. 

A personal health record, with line after line of issues.  Some of them aren't even true and when I click on them I am able to say he either no longer has the issue or delete it entirely. Like 'cerebral brain deterioration'. What the... I don't even know how that's there. His brain isn't deteriorating, nor has it since the day we brought him home. That's NEVER been a diagnosis that I was aware of.

Delete.

Tooth loss? He's not even lost his first tooth yet.

Delete.

TB-related miliary fever?  Nope.

Delete.

Complication of medical care?

How is that a diagnosis??

Delete.



 It's also interesting to look at who listed each diagnosis in his chart. Some are the medical supply company, the medical equipment company, some the therapists, some his doctors, and some are even from the pharmacy.  The pharmacy? I don't even know how they can list a diagnosis.

What's funny is that years ago, if I would have seen this list, I would have freaked out. I would have been sad, looking at a bunch of terms that the world has to use to define my son. It's a lot of medical terminology and scary sounding words (muscle wasting, anyone?). But I look at this list now and I don't see each individual diagnosis. I see an amalgam of terms that can't even begin to remotely describe my boy. He is not defined by his diagnosis, we certainly don't define him that way. He is unique, wonderfully created, and so much more than a sheet of terms could ever describe.

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18 February 2014

It shouldn't be this hard

Liam needs total support and that means without a wheelchair accessible van, he has to have a good car seat that provides proper positioning and sufficient support.

 We were approved, easily, for a special needs car seat last year. So what could be a problem?

The DME (durable medical equipment) company we work through, NuMotion, had recently merged or bought out a company that had recently bought out another company. With Numotion, efficiency would be more streamlined, the steps of the process would be posted on your account on their website after you log in so you could always see exactly where you were in the process and what next step was needed to get the equipment to your door.

It's lovely.

However, NuMotion doesn't carry the different types of special needs car seats that are available on the market today for you to try out. They can't show up at my door, have Liam try out 4 or 5 different models and then we pick which one works best for him and our truck. They may be able to get one or two but if those don't work, you are still stuck with trying to figure out if the one in the catalog is going to be the one that works best or not. Some car seats are too big for certain vehicles, some are too wide, some don't provide the proper positioning for Liam, etc.  It's all a guessing game if you don't have one in hand.

Back in 2012 we picked the Special Tomato car seat. When we tried it out Liam did seem to sit in it well, it provided proper positioning, and it fit well in our truck. Fast forward 8 months to when we actually received the car seat. Liam had had a huge growth spurt and the brand new, $1500 car seat just barely fit him. There was no way once winter hit and he was wearing thicker clothes or if he hit another growth spurt that this car seat would last the expected 2-3 years. He just fit in it.  I had his PT check it out and she was concerned as well.

After letting NuMotion know, they ordered the next size up in the Special Tomato. When we received it, our DME guy and I were shocked to see such a huge difference in sizes. This one was too big. So big, in fact, that we couldn't even get the chest strap to come within the 2 inches of Liam's neck that is required for proper safety positioning. He was even trying to position foam inserts over foam inserts to get him to sit in it right. At that point I was saying huh uh. That is not going to work. We need a different seat. The Special Tomato is not the one for Liam.

After getting approval to order a new car seat that was not Special Tomato, our DME guy was able to find a car seat that he thought might work for Liam.  He brought it out to our house, we tried Liam in it and put him in the car and it was a beautiful thing. He fit perfect. It fit like a dream.  We finally had one that would work. And for years to come too. He said he would get it ordered and it shouldn't be no time at all to get it in.

Fast forward to yesterday. My DME dude had to come to the house to fix Liam's stander. I asked when we were getting the car seat and he told me he had bad news. NuMotion won't let me get a new one. After getting over my shock and finding words to say, I asked him, "So you are telling me NuMotion said that Liam has to use a car seat that is too small for him because they don't want to get us a new one?" He said that was not what they were saying. Just that we couldn't get another one. So I said the same thing again. NuMotion won't allow a new car seat, that would provide proper positioning and safety in the event of an accident because they don't want to. NoMotion said we could get a new car seat, fitted us for one, and then said they had changed their minds and we couldn't get one. I asked for the corporate management's number.

Liam is fortunate to have a Medicaid case manager who has his back. She will fight to get Liam what he needs and she does a lot of dirty work in order to get things done. I can't say enough good things about her. It was a hassle on her end to go through the process of getting this car seat paid for in the first place and to have it not be right and NuMotion not fix it was going to have her on the phone with them immediately.

After I put in my call to my case manager I called the the corporate number and spoke with a very nice lady who took down everything I said. She said she was forwarding the information on to our regional manager and I should get a response within 24 hours. If I don't hear within 24 hours a formal complaint is auto-logged with corporate so she said I should definitely hear something today.

We started this process back in 2012.

Liam deserves a car seat that fits right, keeps him safe in the car, and provides proper positioning. It shouldn't be this hard to make that happen for him.

His normal smiley self on the way to school. Sitting in his way too small Walmart seat because it's easier than the too small Special Tomato.


 
 
 

03 February 2014

Standing tall

After outgrowing his stander 9 months ago, we finally got Liam's new high falootin' Lecky Mygo.  There's a few pros and cons to this bad boy.

1) The butt and chest straps (they use the politically correct term 'harness' and the term 'hips' but it's a butt strap) are too big. I can't get it tight enough to make me feel like Liam feels secure in it. It should be tighter and there's just no way to get it to fit snug against him. He doesn't complain but I don't think he is getting as good of a benefit without the proper tightening of the 'hip harness'.

2) Did you want a tray with your stander? Oh, well that will only be an additional $298.40 please.

3) It's not pneumatic like the last Leckey we had. Granted, this was only $5000 and you can't get bells and whistles at that price, but that benefit on the last one was sweet.

4) Sandals (foot plates to me and you) that don't adjust.

It is kind of pretty in a durable medical equipment kind of way . It's got a really cool color, has a spiffy tray with a built in bowl, and the ability to see the degrees at which Liam is standing. But what I really, really wanted, and was told it had, was the adjusting plates for his feet.


What you can see in this photo is that Liam has a pretty big discrepancy between the length of his legs. His left leg is about 1 1/2 inches shorter than the other. Actually, his entire left leg is smaller than the right, something I noticed when he was a wee babe but was brushed off as it not being true. I noticed his left knee was smaller, as was the thigh and the foot and before long the leg wasn't growing as quick as the right.  With this stander we were supposed to be eliminating the need to wedge things under the shorter leg and it was the first thing I checked out when it was delivered only to find out that we would still have to do wedgies. Poo.

The Mygo does come with a precious little 'sandal raiser' but that wasn't enough to compensate for the difference so we still have to wedge hard foam under his foot to get him bearing weight evenly.

I've been told that we could potentially make up the length difference by having him bear weight in the stander on those tiny little legs for 3 hours a day.  I have not been able to work that into my schedule since we got it but that is the goal.  Luckily Liam really doesn't mind standing in this stander. He does seem to fit well in it regardless of the issues and if we could get a good aid in here to help me, we just might be able to see Liam someday have legs the same length.

It's the little things, people.


Doesn't he look precious in this thing? 


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