Monday, December 29, 2014

Emily's Consultation

I can't remember if I blogged about this in one of my 10 on Tuesdays, but we referred to a specialist on the shape of Emily's head. We have noticed more and more that she has more of a bulge on the one side of her head and a flat spot on the back right side. It's the way she lays so we even tried switching her bed around and she is still laying to that one side. I figured babies get flat spots and there was nothing to worry about. I also knew that girl friend has a big head so that's probably why it looked weird to me. It wasn't until the doctor pointed out that it may be throwing the symmetry to her face off and making one ear lower, that I realized that this may be a problem. I followed their recommendations and made an appointment for Cranial Technologies for that following Friday.

Let's start off with the fact that the place was an hour and twenty minutes away. Me being me, we left right on time, which traveling on I-95 is not a good idea. We ended up being 20 minutes late! Huge fail! I was so nervous by the time I got there that I probably was a disorganized mess. Luckily they were amazing and took her right back. They started with imaging of her head. It was this huge circle we went and sat in and they put a little stocking over her head and snapped the picture and we were done. That quick snap had a full 360 of her head! I thought that was pretty neat. Even neater was I was emailed all the images and even had one that I can spin around and look at! Technology amazes me sometimes!

Next we went into the room and waited for the doctor to come in. She was super nice and seemed very knowledgeable. She examined Emily's head and also the way she moved. This is where we hit our first bump in the road. I never noticed, but Emily barely turns her head to the left. To the right she turns and looks all over, but not to the left. They said it appears she has stiffness in her neck and it is most likely due to her muscles being tight.  So now they have recommended to her pediatrician that she goes for a physical therapy evaluation. She tends to tilt her head to one side which is also a result of these stiffened neck muscles. She has always screamed at tummy time and where other kids are starting to crawl, she lifts her head and screams. She only rolls to one side and she never rolls back. These are all developmental delays due to her neck. She waves, sits, and does everything like a normal baby so I figured these were just little things she just didn't want to do, but they said she has to work so much harder then the rest of the babies and it is uncomfortable putting strain on something that is already sore and tight. They also said that it can delay her ability to follow and track objects since she can't follow the items past her comfort spot that she perceives it as just disappearing to that one side. But the good news is that this is fixable and will involve some stretches and exercises to get her working those muscles.

She was rated with severe plagiocephaly (medical term for misshapen head). We went over the scans and could really see it there. And though it doesn't look bad in person it is off in the way her skull is forming. As far as the muscles and that bump on her head, these were formed probably before birth while she was laying and developing. She said there is nothing we have done or we can do to change this. She said we are probably noticing it more because of her growth spurts. So along side with the physical therapy we are being recommended for a Doc band treatment. This will be a band that will go on Emily's head to help reform her head. At this age children's heads are pretty moldable. This will help her head reform as she is growing. She will have to wear it 23 hours a day and for 2.5-3.5 months. She will need to go for adjustments and check her growth every other week. It's going to be a long process and a lot of strict guidelines, but they said that this should help her out tremendously, especially with the physical therapy.


To be honest I have been pretty depressed about the whole thing and have only told Kenny and my mom about how her appointment went just because I haven't felt like talking about it. I know these are all minor things, but I am sad at the thought of her having to have a helmet and wonder if she is going to hate wearing it. She is a beautiful and sweet baby and she is healthy, which is what I know is the most important thing, but I don't want people looking at her or staring at her or asking questions. Hailey has had a tough time understanding that Sissy needs to wear a band and I worry about her getting upset about it or if she will be embarrassed of her little sister during the time she needs it. I know these all sound crazy, but based off of the support groups and pages I have found, these are all valid thoughts when it comes to your own kid having these issues. Hailey and I have looked at a lot of pictures of children with these bands (they gave us a calender full of DocBand babies!) and ways they decorate them. I also showed Hailey bows that I found on etsy that can attach and swap out with Velcro made specifically with crainal bands in mind. She's coming up with ideas and wants to be a part of decorating it for Emily to make it look special for her. She even looked at little gem stones at the craft store. There are a ton of ideas online and that is something that the doctors encourage to help make it more personal for the children and other children in the household.

Another thing bringing me down about it is the cost. We are in network with this place which is good. The cost is $3800 so by being in network we get it adjusted to $2500. The insurance "fully covers it", but "only pays $700 out lifetime on it". So we will be left with $1800 due at the time of the next fitting. I am still working to pay off the air conditioner and was really hoping to get myself back on my feet, but not with this added expense. I do have a Care Credit card that will give me one year with no interest, but it's still going to be hard to make this work and if we miss the one year deadline then we get all the deferred interest charged to the account. Then also adding on the deductibles for insurance and the cost of physical therapy is stressing me. Kenny and I both agreed that this is what is right for Emily so we will move forward with it. Time is also not on your side with this. The longer it takes the longer the treatment will be needed because their brains and skulls are changing daily. Of course I most likely will be the one paying it so I have been really stressed about it. I just wanted to get myself back to a good place and clearly that won't be happening anytime soon. Medical bills really suck!

So there you have it! That's how little Missy's appointment went. It wasn't what I wanted to hear, I was hoping to have a "oh it will just fix on it's own as she grows", but it did bring some light to how to fix the situations. We are now waiting for the pediatrician to write out the prescription and the insurance has requested a letter saying that it is medically necessary. Once those are gotten then we will be scheduled to come back in and do more 3d imaging to make a mold for her head and then a band will be created for her. After that we will be scheduled for a fitting and that's when our journey will begin.

Oh sweet little Emily! I needed your big smiles today!

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