30 June 2010


Some days being the mom of a kid with special needs is not that big of a deal. Really. I can handle it. I love Liam and most everything about him (not fond of the drooling though, hence the 'most').

And other days, it can be exhausting: PT, OT, SLP, vision teacher, calling insurance, Dr. appointments, scheduling appointments, researching, fighting...

But he's so worth it.

post signature

29 June 2010

Insurance is a pain.

It seems like all I ever do is fight insurance these days. It shouldn't have to be this difficult. I mean, who makes bogus claims for medical food, equipment and doctor visits? Do people really pick random doctors just to see if insurance will pay for the visit? Are they sitting around the dinner table and trying to figure out ways in which to mess with insurance companies?

More and more lately I am trying to justify and prove, beg and plead with BCBS.

Liam had an appointment with a developmental pediatrician back in February from a Dr that is not in our preferred provider list. I submitted the claim in March and in April I was still calling them trying to find out if they were going to pay. They finally put it in priority status and then I heard immediately that they weren't paying. BUT, they paid for the over $2000 of lab work that Liam had done at that appointment. What?

I appealed their decision on the dev. ped. and when I called today to check on that status they said they don't have the appeal. That's twice now that I have sent papers to BCBS and they have mysteriously not received them. And once the lab sent papers and they didn't get them. Humph. The lab said they "never thought BCBS would stoop so low as to say they weren't getting claims".

I also spent considerable time today trying to get them to cover Duocal (powered fat for food) for Liam. I finally found someone who said they would cover it under the medical benefits section of my plan since Liam is primarily g-tube fed. I hope they are right. Cuz Liam could sure use it.

We had an appointment with GI yesterday that yielded good news. Liam is now doing well enough on his new diet that we are going to start slowly increasing his volume intake. SLOWLY. Cuz I'm afraid if we mess with the good thing we've got going he's going to end up refluxing badly again. But he definitely isn't getting enough calories still, even though he's keeping everything down, so we need to increase it a bit. Unfortunately his weight dropped from the 5th percent to the 3rd percent in the last two months. He's holding steady at almost 25 lbs, but he shot up in height to the 25th percentile (wow) and it's thinned him out a bit. Hopefully getting the Duocal added will help make up the slack.

post signature

24 June 2010


Our previous PT had mentioned a long time ago that she was interested in checking into e-stim for Liam but she didn't know enough about it for kids and wasn't aware of anyone around here doing it for children. My interest was piqued and I made a small mental note that it could be a possibility somewhere down the line.

When we started with the new agency last month the PT asked me if I would be interested in doing e-stim on Liam. I couldn't believe they knew how to do it and they were right down the road all this time. I wasn't sure if e-stim would help but having had it mentioned by two different PT's I figured it was worth trying.

Liam had his first e-stim session last week. It's similar to a tens machine in that you place the 4 pads on Liam's back and attach the 4 electrodes. The pulse sensation for Liam is supposed to be different than your average tens machine but in principle it does the same thing, it sends impulses into the nerves.

It is set at a very low range right now and we will slowly work up to longer and stronger pulses. While Liam has it on we work with him in the sitting position to try to facilitate lifting of his head and using his back to try to sit. He's actually doing fairly well on the lifting his head part. The goal is that it will help Liam register that he has back muscles and that he can use them.

post signature

17 June 2010

It's the small things that mean so much.

I can't believe I can say this...

Liam has been vomit free for 4 whole WEEKS!

It's insane, I know.

I never thought there would be a day in my life when I would celebrate a milestone of this nature.

Well, I never thought I'd have a kid that could vomit as much as Liam does either! Liam's reflux started out mild when he was so tiny but escalated to a level I didn't know could exist by the time he was 2. Luckily he took it all in stride, because I can't imagine what his throat looked like at times. It had to be raw.

After getting the g-tube in January Liam's reflux went into hyperdrive and I would end up in tears at times. We had to start feeding him his 4 ounces of milk over an hour at a time, by pump, just to settle his stomach and let him adjust to his new anatomy. He started to settle down and quit vomiting for a couple of weeks on this routine (which I thought was the end of the vomit woes) when he got a fever that set his reflux back on the course that would rival a college kid on a weekend binge. The fever was mild, he didn't act sick, yet something happened to his gut because the reflux flared up and he wouldn't quit vomiting even though the fever had gone.

While doing our last round of hbot, Liam would show off his projection skills when we would get to the chamber. It's such a blessing to be around other moms of kids with issues because no one bats an eye at this kind of behavior. Anyway, three quarters of the way through our dives Liam started to quit vomiting. And by the last week, he hadn't vomited at all. I continued on hour feeds until about another week home when I decided to finally try bolus feeding him (feeding him all of his milk at one time by letting gravity push it in). And he's been doing great ever since! Not only is he now vomit free, I am finally able to feed him 4 ounces at one sitting.

I don't want to say we've made it. But it's looking that way!

post signature

16 June 2010

If we want to hear Liam talk...

We put him in the pool.

He ooohs and aaahs over and over while swimming.

Water was one of the first things I taught him about.

When he would start to vomit I would race to the sink to distract him all the while I'm yelling, "Do you want some water?" Usually he would be so interested in the water it would stop him from vomiting. Seriously. You CAN distract a kid from vomiting. Who knew?

And when he was really small we would put him in the tub and he would kick and splash and giggle. You know, those full on baby giggles that get you to laughing so hard your now crying?

Apparently he thinks water is the bomb.

My only wish?

That we had an 'aquatherapist'* here that could work with Liam in the water....

where he really loves to be.

*apparently that isn't a real word but it's a nice descriptor.

post signature

12 June 2010

A stander of our own

Liam got his very own stander this week.

We had been borrowing a stander from our Child Developmental Service Agency but because Liam is no longer getting services through them, we needed to get our own. CDSA was kind enough to let us continue to use it for a while longer until we were able to get insurance to buy one.

Luckily they approved it.

Because the cost is staggering.

$4000.00 was what was on the bill.

Our new one is better equipped than the last one.

  • There is a sturdy toy/activity tray.
  • The foot rest has straps because Liam would get sneaky and could get his legs out of the old one.
  • The base has wheels so we can go anywhere easily.
  • The base has a gas spring which allows the stander to lay flat to put Liam in.
I didn't want the rolling base because it was so big but I'm glad we went ahead with that one. It's been very handy to have and Liam likes to roll in it, let alone the fact that getting him in it has become a million times easier. I just wish I could convince Liam that being strapped down is worth his while. Because he still isn't fond of this thing yet.

post signature

08 June 2010

The last MM post. I promise.

Although I'm way behind because I have already been home for 2 weeks today, I did want to highlight the last weekend we had at MM!

We tried to cram in as much as we could again, not only for our last free Sunday, but to be with several of the families we grew to love over the course of treatments.

Sunday morning had me and Laura heading high up into the mountains on a road that we thought would never end. When we finally reached the top we were at Hawk's Nest Resort where we took to the zipline and completed the longest zipline on the east coast! Rylie and Laura's dad Mark watched over Liam, Jon, and Leah while we went zippin' through the trees. We had such a great time and I'm so glad we got to go. Our next goal is the longest line on the west coast! Ha!

Then Rylie and Liam and I went for some hiking fun at Moses Cone Manor while Laura was going to take her kids horseback riding. But Laura and crew showed up there too to hike since they couldn't find the horses.

They have a shop at the manor that supports local artists. Rylie and I loved trying on their hand made hats.

After the manor, Laura and I split up. But, then we ended up again at a local kids park to let the boys play. Liam loved their swings and seesaw. They had two disability swings and I sat in it and spent over half an hour just swinging with Liam. I also took him for his first slide run. =)

Our last two nights were spent eating out and hiking some more with Laura and crew to the top of Mount Jefferson. The views were gorgeous. It's amazing how small and insignificant one can feel when viewing the world from that height. For me, it makes God's presence so much more tangible.

I am so grateful for the trip to the mountains for hbot. While I did have a great time in the off hours, the purpose for being there was for Liam to receive more help. I am so excited about the changes we have seen in Liam already. For the first time Liam is trying to use his back when I sit him on the floor. He normally falls over and still does...the fact that he is trying every now and then to get up is good news. He loves to read his books and when we put them in front of him and he falls over he works so hard to get back up. He's trying and that's what's important.

I've also noticed an increase in his 'talking' which is so cute to hear. For the first time ever, he talked all through the store tonight. He normally becomes quiet in his stroller (he hates being strapped into anything) and listening to him tonight was sweet music to my ears.

Here's what the chamber at Miracle Mountain looks like that helps my little guy to achieve miracles and milestones:

And this is Liam's buddy Jon:

Two peas in a pod, they are... Both born too soon, both survived against the odds and both face life long challenges. But they are the happiest kids you'll ever meet.

Liam considered dragging Jon home:

Those are the highlights of a trip made possible by our amazing friends and some of the results of oxygen treatments. So far. I know there's more exciting stuff for Liam right around the bend.

post signature