Best $35 ever.

I happened across this really cool head rest while on facebook recently. It's original intent was for keeping kids from collapsing into a ball while sleeping in their car seat. But the momma who designed these has had special needs parents, like me, asking her to make one for them due to their little ones lack of head control.

While the headrest isn't perfect, because nothing involving Liam ever is, it has been a huge help keeping Liam positioned in his car seat. I'm usually having to reach back while I'm driving to help reposition him but when he has this support on he sits pretty well and I can focus on driving!😨

He didn't like it at first because we all know Liam doesn't like changes. And to him this was a big one. It took him a few days to get used to it.

Sherri is the momma who started making the Sleepy Time Headrest and she personally called me to talk to me about making one for Liam. She was more worried about making sure it worked for us than she was about selling her product. 

You can check them out on facebook or visit Sleepy Time Headrest to learn more. It velcros closed under the chin and with Liam being such an avid thruster,  I was concerned it wouldn't hold but it's done a great job and hasn't broken loose once. It's even been crash tested!

It's not usual to find a product for special needs kids that is this affordable!

Traveling with Liam is hard and until we can get a handicapped van, I'm thrilled to have something to keep us going with the vehicle we have. ❤

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.

     

Two weeks to go!

Two weeks from now Liam and I will be sleeping in our hotel room in the Dominican Republic resting up for his procedure the next afternoon.

I'm trying not to over think things because that will get me mentally in trouble. I will be traveling alone with Liam and obviously if I could be traveling with someone else, that would be the best option, to have the extra hands.

Liam does not like his car seat in anything other than our suburban. We have put him in Rylie's car and he threw a fit the entire drive across town, took forever to calm down once he got out, then started crying again when he say the door open knowing he had to get back in.  We also tried a friends jeep thinking the open top would be fun and would take his mind off of him not being in his car. He cried all the way to the beach and back.

Our flight is at 6 am so that has us leaving our house at 5 am (luckily we are 5 min. from the airport). I'm not happy about that myself and that will be really hard on Liam as well. So he's going to be starting off really bad that morning.

The day of traveling isn't terrible, but it will be long for Liam. He will have to be in his car seat for much of it and it isn't his favorite place even when it's in our vehicle.

As you all know, Liam has no head control. What he wants is to have his head up on it's shoulders the way it should be. He continually tries to put his head upright from the reclined position he is in in his car seat or stroller, but then when he gets it upright it falls down and he can not pick it back up. He also gets very excited around lots of people and when he gets excited he has even less control of no control, if that makes any sense. What that means for us is that while walking through the airport, pulling my carry on and pushing a stroller with my free hand, I will continually be stopping and picking his head back up for him until he can calm down and relax. We will have one layover going down and two coming home.

Once we get to the DR we will be taking an hour taxi drive to our hotel which means another location, strange to Liam, that will give him anxiety.

We will land at 2:30 DR time but allowing in the time to get through customs and out of the airport, the taxi drive, and checking in at our hotel, I expect we won't be able to relax until 5. That's a 12 hour travel day for Liam which is asking a lot out of him. He's a very easy going kid so I have high hopes but know that it will still be rough for him.

If you can, please think of us February 20th and say a few prayers that it all goes better than I could have hoped.