The Year of the Helmet continues

I know, my titles are pretty lame, but it's our life lately, so that's what you get to read about. :) No pictures today because I forgot the USB cord on our trip, we'll have to wait until Iain gets here for his visit. Jack was able to be seen at our new facility the day after we arrived in town, and they scanned him right away; the people are great, very supportive, good communication, and we really like them. Jack had his THIRD new helmet within 10 days. He is now in week 3 of the helmet, and doing great. No skin problems, no fit problems, so far so good! Yea!!

I'm not sure, but guessing it might have to do with the fact that he was scanned this time as opposed to casted. He never sat still for the casting, and it didn't make sense to me that they could get a good mold if he never stopped screaming and thrashing. So, we like our orthotists, we love the facility, Jack is tolerating this helmet- he certainly doesn't like it, but it's working, and I've already seen improvements!

Our next battle is the insurance issue. Finally, today, after asking our health benefits person (kind of like a patient advocate) to find out what the heck is happening with our last bill and if we actually have to pay $3100 for the last helmet or not, never hearing back from her. I finally called all the right people this morning to find out that we have a ZERO balance at the first facility, just like we're supposed to, and they will stop sending us bills. Yea! We are in the process, now, however, of appealing the denial from our insurance company, and I've already contacted our Senators, Congressman and State Representative. The Congressman's office has called back, and wants to get involved. Yea! Essentially, I'll send them everything we're going to send in the appeal, and a congressional liaison will look at it and contact Tricare to see why they have such stupid policies. :)

In my research, I've found lots of interesting tidbits that will hopefully really help in our appeal. Lots of incongruities, and arbitrary rules; paying for cosmetic things, but not the helmet, etc. I can't wait. Iain wrote the appeal letter last night, and up until now, I've been doing all the research because he's been so busy. Now, my lawyer hubby is on it and they are in for it! Yea!

So, while living away from my husband and being a 'single' parent is NOT super fun, we are getting lots accomplished, and still really feel that this was the best decision. Thanks for all the notes of support! We really appreciate it and can't wait to give another update!

Today is the day

We're headed out today for our hometown- packing the car with kids and 4 months of whatever we might need. Iain is driving us home and flying back in a couple of days. Not too much to say- pretty freaked out, apprehensive, nervous, excited, sad. I cannot wait to get Jack good treatment and to fix his problem. However, leaving Iain, especially right before a deployment is too sad for words. I'm not really sure how to express it. Just wanted everyone to know we'll be out of touch for a bit, and I'll update again when we get there and get settled.

To all drivers...

Wherever we have lived, I've always been annoyed at drivers- Chicago was terrible with their horn blowing, D.C. was a bear when it came to traffic jams and people cutting others off, the slow pace of Japanese life didn't skip their drivers... North Carolina has now been added to the list. I've decided to post rules on my car:

1. Pick a lane- I know that riding the dotted yellow line might help you get home, but it does nothing for the people behind you except to infuriate and annoy us.
2. Pick a speed- If I had a dollar for every time I've been behind someone who sped up and slowed down every 10 seconds, I wouldn't have to drive, I'd have a chauffeur.
3. Use a turn signal- God gave Man the idea to put two of them on our cars- they're there for a reason.
4. When you get ready to turn, don't swerve in the opposite direction to take up the entire lane- Seriously, if you're turning left, get over to the left- it's not that hard. You don't need that much space to turn your Ford Focus.
5. If you ride a motorcycle, for the love of Mike, wear a helmet! Wear full leathers! Drive with your lights on! And stop swerving in and out of the lanes to pass cars- most of them won't see you.
6. Park correctly!! - Does your Camry really need to take up two spaces?
7. Stop driving parallel to the car in the other lane- I've seen it before, but it is actually a phenomena here in Eastern Carolina. I'm not kidding when I tell you that every time I get in the car and drive somewhere where there are two lanes, the car in front of me will drive exactly parallel to the car in the next lane- no matter the speed. It's like every one's got a buddy.
8. Get off of your phone/food/paper/makeup/etc.- I know we're a society of multi-taskers, but seriously. You're driving a 2 ton bullet. Quit smacking your kids, lighting cigarettes, eating your taco grande, texting your bff, or reading the paper. It doesn't take a genius...
9. Don't stop at a yield- The very definition of a yield sign is as follows: 'The yield sign assigns right-of-way. Vehicles controlled by a yield sign need to avoid interference with other vehicles, including trains, which are given the right-of-way. ' The yield sign is not a stop sign. If you come to a complete stop on the on ramp to an expressway when everyone behind you is speeding up, you WILL cause an accident and it WILL be your fault. And I'll be mad.
10. FOR THE LOVE OF ALL THAT IS RIGHT IN THE WORLD... THE LEFT LANE IS FOR PASSING- MOVE OVER!!! - That's right- if you are driving slower than the person coming up behind you, move over. I don't care if you're already going over the speed limit, move over. If you are not actively passing someone, move over. However, if I'M in the passing lane, and there is a car in front of me that isn't complying with the rules of the road, get the heck off my butt because it should be crystal clear that I can't go any faster than the jamoke in front of me.

I could come up with more- but these are a good start. While we're at it- return your shopping cart to the return slot, throw your trash in a trash can, not out the window, stop smoking with kids in the car, stop skipping people in the 4 way stops!

In Japan, lots of people don't have a drivers license because it's a huge responsibility, and they're actually considered professional drivers. We seem to hand out licenses (for everything!) with not much regard to intelligence or common sense. I think the whole process needs to be reevaluated...

And the hits...

Last night, Iain had duty, which means he stays on base all night long. I get a teensy bit creeped out when he's gone at night, so I left the porch light and driveway spotlight on all night. We had switched cars so that I could bring his truck in for maintainance this morning.

After loading the kids in the car, and starting the drive to the car place, I reached down to turn on the radio and realized that there was nothing there... the radio face was gone! After arriving at the car place, I called the police and they came so I could make a report, and while the officer was there, he said he got three more calls for our neighborhood. Looks like some kids are bored now that school's out...

Of pointy heads and deployments


I truly, truly am at a loss right now. I kind of want to throw up. Haven't posted about Jack's helmet issue in some time because so much has been happening, but nothing is actually being done. Some of you have asked what's going on, and we're still waiting to hear, too, but I thought I'd at least vent a little- or I might explode.

Jack has plagiocephaly. It's a fancy term for 'flat head'. The docs think it was a combination of things that caused it- he prefers to look left, he started sleeping long hours through the night at an early age, and also started gaining weight and never really stopped, so he had a hard time moving his big self around when he was really little, and he hated tummy time. We tried repositioning him for almost three months, to no avail. Our military pediatrician referred us to a pediatric plastic surgeon in Chapel Hill- almost 4 hours away. He wrote a script for a helmet, and we started therapy with the brace shop there. After two weeks of wear, and after multiple phone calls to tell them that it didn't fit correctly, Jack got a pressure ulcer on the inside of his ear because the helmet shifted so much. They finally agreed that it didn't fit, and casted him for a new one. When that one was ready, the first time he wore it, they still had to ADD padding to the inside because it STILL didn't fit correctly, and shifted too much. He wore that helmet for a week, and got another pressure ulcer one evening. By the morning, when I was able to take him into the regular pediatrician, he had a staph infection. We took Jack back to the brace shop, they insisted that the helmet fit correctly, which we didn't understand because it gave him a sore, and they wanted him to continue to wear the helmet that had the moleskin padding with bacteria from his staph infection all over it because they didn't want to make a third helmet.

In between all the medical issues, we were also dealing with Tricare, our insurance company; I called the 1-877 number about 15 times before this all started, and got all the information we needed to process the claim; each time I called, I was told that it was considered a DME (durable medical equipment) and that since Iain is active duty, it would be covered. Lo and behold, when the claim was sent to Tricare, they took 4 weeks to review it, and big, fat denied it! Even though the pediatric plastic surgeon wrote a letter of medical necessity because he said 'he is the second worst case I've ever seen...' Verbatim... So, now we have a kid that has had two pressure sores, a staph infection, a funked up, pointy head, no helmet, and a $3100 bill.

Also in the midst of all this chaos, I had been calling around to different military medical facilities because someone told me that it was paid for if done on base. I found out that there was a military medical facility that did helmets and called them. I was told, yes, we do it here, and yes it will be paid for. I called our original pediatrician, threw a fit, made her write a referral to the military facility, and then we went on vacation. It was a nice respite to not have to think about it- but when we got back, it was looming over me like a big, ugly dirty word, and I had to start calling people again.

Health benefits called me to inform me that even though the referral had gone through to the military medical facility, we would actually be responsible for the cost of the helmet there. I called the other facility, and found out that not only would we have to pay for the helmet there, but they actually don't do it in that facility, they would just refer us to a civilian in THAT city- again, 4 hours away. After sitting in silence after the woman told me this, and then holding back tears while I made her repeat it, I bit my tongue so as not to curse her out and hung up the phone. On a whim, and because I was so desperate for any news, I googled facilities in my hometown. Turns out there is a facility there that is actually a leading clinic for treating plagiocephaly, and it's close to my parents house.

Iain and I have been discussing the likelihood of me taking the kids and going home, staying with my folks, and getting Jack the treatment he needs for the next 4 months. It would be a no brainer but for the fact that we found out about a month ago that Iain will be deploying. Turns out that if we go soon to get Jack started on a new helmet, we'll be getting home right around the time that Iain will be leaving. It breaks my heart to think of spending so much time away right before he leaves, but if it's best for our son, how can I say no? What parent would?

I've been calling the potential clinic and leaving messages, and calling our health benefits counselor and leaving messages with no responses yet today. So, not only are we left with no answers; we might have to look forward to being apart for Jack's treatment for 4 months, and then however long Iain's deployment would be- 7 or 13 months. We've been trying to decide if another baby is in our future- and if it is, we might like to try before he leaves, especially if he's going to be gone for a long deployment. However, being in two separate states will make that pretty difficult.

So, you can see why I am frustrated. No one at our clinic here seems to understand the severity or the urgency or importance of fixing Jack's skull shape. Sure, it's partly a cosmetic concern, but our overall concern is for his health- he deserves a helmet that fits correctly and doesn't give him sores; and most importantly, he NEEDS it to be taken care of because of the severity and asymmetry in his face- all components of his face are asymmetrical. If not taken care of, it will lead to visual problems, TMJ, auditory problems, learning disabilities and certainly, self esteem issues. There are no doctors in our area that can treat it, and frankly, no doctors that seem to care enough to advocate for him. Not only must it be taken care of, but there is a time limit... soon, the skull will start to fuse, and treatment with a helmet only will not be an option anymore. It's terribly frustrating and nerve wracking. Makes me feel helpless.

That's what's happening. A whole big fat bunch of nothing. I appreciate all your thoughts and prayers- we're in need of it right now. Hoping that soon, we'll have some good news and I can write a nice happy post about how well his treatment is going! Till then, I may need to use this arena as my venting page. :)

'She is a party girl...'

If you don't know Milkhouse, the title won't mean anything to you...

Despite the rain that never stopped, the overflowing, muddy pool, the wet dog, and some minor meltdowns, everyone had a great time! I'd say for having 10 kids ranging in age from 0-4 and all the parents that come with them, we had a great party with only minor mishaps... a success in anyone's world! Grace loved the cake and all the people there to see her, got to skip her nap, and loved all the generous gifts! She has two new 'babies' that she will not let go of, and some great games and books. Thanks so much for a great time, guys- I'm glad that everyone came and had fun!

p.s. In the case of the doors- as of 8:30am the morning of the party (party started at 10am) the three doors were hung and functional... We are NOT replacing all seven upstairs if I have anything to say about it... :)

Birthday Party Eve

That's right. This is what my husband does the night before Grace's birthday party. About 10 months ago, Iain gutted and renovated our kitchen and first floor bathroom; and also painted the entire interior of the house, because it needed it badly, and also because the previous owners smoked indoors and had three big, stinky dogs. Ick. It was an amazing transformation that he really wanted to complete before Jack was born.

Let's just say that sometimes the details get a little lost. :) We've been without doors on our first floor for some months now because we wanted to replace the cheap ones with doors that were nicer, and heavier. Unfortunately for Iain, when he decided on the right door, and the right hardware, and finally had some time to install them- we found out that the jamokes that built this house didn't build anything level. The door frames are all uneven! Since finding that out, Iain has been insanely busy with work and when he's home, he's been too tired or it's been too late.

Which brings us to tonight. We have 10 kids and about double the adults coming tomorrow morning for Grace's party, a door that won't shut on the bathroom, and two doorless closets in our front room. Iain was inspired to get them all done this evening, and I have to say, he's doing a great job! However, now that he realizes that this could've been done without TOO much trouble, he now wants to also replace the doors upstairs! He thinks there are five, but I counted- there are SEVEN... no way!

As of this posting, the doors aren't up yet, but they are all shaved down and ready to go. I'm guessing I'm going to have to be the one to hold them in place while he drills them in- wish me luck... they're not light! Here's to having some privacy in our first floor bathroom!