Friday, January 6, 2012

Our new reality for a while…

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Well, life has a funny way of keeping it interesting sometimes, and this time, we’ve been thrown a bit of a curveball. When Ben was first born, Brian and I (although mostly Brian at first), noticed he had an “odd shaped” head, which we mostly attributed to normal newborn molding.  We had mostly been noticing some flatness on the sides of his head near the back, but more prominently, he seemed to have a “bulge” on the right side of his forehead. By the time he was 3 months old, it had not gotten any better, and seemed to be getting a bit worse, causing his ears to be misaligned, and his right eye to be shifting down ever so slightly. Most of what we were noticing was not seen by anyone else, because of the angles at which people usually see him from- including his pediatrician.  It was generally not noticeable at all when looking at him from the front, which is usually the way he is positioned in most of his pictures as well.

When I finally pointed it out at his 3 month check-up, his pediatrician appeared to be slightly concerned, and suggested that we might want to see a craniofacial specialist in the future if we didn’t notice any improvement from some “repositioning” techniques, commonly used to correct infants’ misshapen heads. Wanting an evaluation sooner than later, we got Ben in to see a specialist at the Children’s hospital here, and were quite quickly & shockingly told that he has a severe case of “plagiocephaly” and “torticollis”. We were told at that time, that there was good news, and bad news… the good, and most important news, was that this was not affecting his brain development at all, and was purely an issue of the growth pattern of the skull & more cosmetic than anything else. The other good news was that for the most part, this could be fixed, and this was the perfect time to do it (starting between the ages of 4-6 months old). However, the bad news was that in order to do so, he would need an orthotic helmet for upwards of 6-10 months, which would need to be worn at least 23 hours a day. Left untreated without a helmet,  we would have no way to know what the extent of his facial asymmetry would be.

After leaving this shocking & devastating appointment, it was hard, but I had to remind myself that I was so thankful that we were dealing with a relatively “minor” issue as far as medical issues can go, and that Ben is a healthy, happy little guy… he just has a lumpy head! When I got home, the research phase began immediately, and I started learning what everything meant, what appointments needed to be made to get all the facts straight, and what we needed to do about it to get the best care we could for Ben. When I started telling everyone the results of these appointments, every single person said, “I know I’m not a professional, but I just don’t see it! He’s beautiful!” Since no one else could see this “abnormality” until we pointed it out to them, it made it that much more difficult for me to come to terms with the fact that there was something that needed to be “fixed”. Brian was ready right away to start the process, but I wasn’t at that same place… However, after A LOT of prayer, many different opinions, physical measurements taken, and some time, I have come to realize that this is the ONLY time we will be able to do anything to help him, and I can’t let this time go without trying… What I also realized in this time of preparing for his helmet, was that many people have SO many questions, and that it was up to us to educate everyone as much as possible, so we would have a good support network as we go through this journey together. That is why I felt the need to create this “informational” blog post- to explain what everything means, to share the upcoming plan of care, and to ask for prayers and support as we embark upon this journey.

To begin, “Plagiocephaly” is simply a common condition of a misshapen head in many infants, caused by the fact that their skull is still so soft. They have noticed an increase in this condition since parents were instructed to put their babies on their backs to sleep, which has drastically reduced the risk of SIDS. There are different types of plagiocephaly, but Ben’s is categorized as “severe” (according to his specialist), due to the fact that it began in utero (probably due to the gestational diabetes, and his size in relation to mine…), and his skull bone formed that way as it was being pushed against one of my bones.  Therefore, it will take a little more work, from an external source (a helmet), to correct the problem. Even though he doesn’t have many of the traditional “flat spots” that many babies exhibit, he has “bossing” ( or a bump) on his forehead and has a slanted parallelogram shape to his head. Since half of his head is being pushed forward, his facial features are beginning to become more asymmetric.  

Ben also has what is known as "”torticollis”, or a tight and shortened neck muscle, on his right side, causing him to lean and turn to that side more often. As a result, he tends to keep his head in certain positions that are creating pressure on one side, and not allowing for even growth of his skull. This is very often seen in babies with plagiocephaly, and it is not known which is the cause of the other… To fix this issue, he has been, and will be continuing to go to physical therapy once a week, as well as home therapy with us 5 times a day, and going to my chiropractor weekly, who specializes in pediatrics.

Below are inserts from the pamphlet made by Cranial Technologies (which is the company through which we are working to treat Ben). I put red boxes outlining the information pertaining to his case. If you would like any more information on deformational plagiocephaly, feel free to check out the Cranial Technologies website, : http://www.cranialtech.com, or  a helpful FAQ page at: http://www.plagiosupport.org/faq.htm

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At our first appointment with them, they did a photostudy, where they took pictures to outline the extent of the plagiocephaly to submit to the insurance company. Thankfully, a week later we learned that the insurance company accepted the form of medical necessity & will be covering a large portion of the cost! Since everyone has been asking, on the photos I’ve drawn some straight lines so that you can see where the asymmetries are beginning in his facial features. (If you click on the pictures, it should bring them up larger to see). You can see the spot of “origin” (next to the arrow on the left side) where his bone grew against mine, causing a flat and almost concave area, and in turn, creating the beginning element to his plagiocephaly. You can see that the midline of his right eye is in line with the bottom of his left, and his left ear is drifting lower than his right. You can also see in the bottom page, the slant of his forehead, that is actually consistent throughout the whole face when seen at the right angle. While these may seem like subtle differences right now, due to the large amount of head growth he has left, there is no way to know which way these features will continue to grow, if something isn’t changed. Unfortunately, waiting isn’t really option either, because by the time we wait to see which direction they will move, it will be too late to do anything about it.  We’ve been told that while we aren’t to expect a perfect head at the end of this, the flat areas should be filled in, the facial features should be relatively symmetric, and the larger prominent spots should appear “softer” and much less noticeable.

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Ben goes to my chiropractor weekly to help with the torticollis. He really enjoys his visits, and he’s all smiles most of the time! The doctor said that the frontal bones of his skull are out of alignment, and his C1 vertebrate was off as well, causing him to lean to the right side, and making the torticollis worse.  After the adjustments, the doctor uses an “pressure gun” which slightly vibrates and uses air pressure to help with realigning the bones. After his first adjustment, he held his head straight for the first time!

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Ben also visits the outpatient therapy department at the Children’s Hospital here once a week for physical therapy. This is also helping the torticollis and working on stretching and strengthening his neck muscles. Our therapist has shown me MANY techniques and exercises that we have to do with him several times a day, and for the most part, he’s been great about them! He is showing much more neck control and strength already, and he’s even beginning to learn how to roll over!

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The helmet has been specially designed for Ben’s head shape so that gentle pressure (no more than his head on a mattress) will be placed on the prominent spots, and allow his skull to “grow into” the flatter areas where there are hollow spots inside the helmet. There will be weekly appointments at the Cranial center, where they will check for growth, and adjust the helmet as the process continues. It is unknown at this point how long or how many helmets he will need, but it is thought that he will grow out of the first one in the first 5-8 weeks, and require a second one for several months. To fit him for his helmet, he had a DSi profile done, which is simply a very quick 360 degree image taken of his head shape, so that a traditional “cast or mold” did not need to be made for him. They placed a mesh net over his head so that they could get a perfect image without any hair, etc… getting in the way. He did surprisingly well with it on his head, and was even still smiling at the tech as she was taking his picture. It lasted all of 15 seconds to get him in the right position… he did a great job, and they got a perfect image.

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One week later, we returned for his fitting, and it was quite a long appointment. After 2 hours of trying on the helmet, shaving it down, adjusting it, and giving him time to acclimate to it, we finally left there with a VERY tired and cranky little helmet boy… It will take a few days to get used to it, with frequent skin checks, and monitoring… not to mention getting him adjusted to sleeping with a “round” head now! Hopefully we will all get used to it quickly, and soon enough, this will all be a distant memory!

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While I am getting much better at dealing with this process now, in the beginning, I was a wreck. I just wanted to know, as does every parent, that we were doing the right thing, with the least amount of pain brought to our child. I know now that this is what needs to be done, and we are moving forward 100% with this process. I trust that God will allow this to work for him, and that we will all make it through with nothing but a beautiful head and a story to tell in the end Smile One of things early on that gave me a laugh (which was MUCH needed at that time), was this coloring book that one of the cranial centers sent home for our girls… It talks all about the things this little boy could pretend to be with his helmet on (an astronaut, a race car driver, a jockey or a football player) and how his siblings could help him through the process. It is actually a very cute book, but laughter is the best medicine, right????

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Thank you all for taking the time to learn more about our upcoming journey, and I will be sure to keep everyone up to date when there is anything new to report! In the meantime, look forward to seeing a lot of pictures of one cute little boy in his helmet (which I’m sure will be decorated with MANY stickers by two excited big sisters)!

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If anyone is interested in any other blog posts related to Ben’s helmet, the following is a list from 1/7/2012 thru his final graduation day on 6/8/2012:

1/7/2012: First night after wearing the helmet: http://blog.beachfamily.us/2012/01/everything-is-going-well-so-far.html

1/18/2012: Update after 1st appointment: http://blog.beachfamily.us/2012/01/exhausted.html

1/19/2012: Only one hour per day without the helmet: http://blog.beachfamily.us/2012/01/one-hour-day.html

1/24/2012: First time decorating with “blingyourband.com”: http://blog.beachfamily.us/2012/01/just-fixin-my-flat.html

1/29/2012: Ben can’t sleep without the helmet!: http://blog.beachfamily.us/2012/01/i-really-like-this-thing.html

2/5/2012: New “bling” for Ben’s half birthday!: http://blog.beachfamily.us/2012/02/6-months-old.html

2/14/2012: First helmet graduation w/ photo study (we thought we were done)…: http://blog.beachfamily.us/2012/02/graduation-already.html

4/3/2012: Round 2 (Ben gets his second helmet): http://blog.beachfamily.us/2012/04/round-2.html

4/30/2012: Fun playtime in the mirror Smile: http://blog.beachfamily.us/2012/04/i-love-my-new-playmate.html

5/13/2012: Some cute helmet pictures at the lake on Mother’s Day: http://blog.beachfamily.us/2012/05/happy-mothers-day.html

6/8/2012: Ben’s final graduation day with photo study & celebration pictures!: http://blog.beachfamily.us/2012/06/graduation-day-for-real.html

 

Thanks for following Ben’s journey with us! We couldn’t have done it without all of your support!

Karin

4 comments:

Grace said...

Hi, Karin. Your post made me well up and shed tears. All I know is that God loves us so much that he gives us trials and hardship. When we are in this hard time, we don't understand why God is giving me such pain but in the future when we look back at our past, it was actually a true blessing disguised as a struggle. And thru these trials, I think he molds us into a stronger person who that you could have never been without the hard experience! Will pray for Ben and your family~! Thanks for sharing your life with us!

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