Garrett graduated from Cranial Technologies today. He got a certificate and applause from the staff and everything. And we took donuts to everyone to celebrate. Technically he got his 'diploma' early. He had his exit photos and measurements done, but he also had a final adjustment to the band. He'll wear it for 2 more weeks and then we'll take it off on October 5th (2 weeks from today), and he'll be done forever. It's gone by fast, and has been much easier than I thought it would be.
I remember after Garrett's evaluation for the band, I was so overwhelmed. We walked out with another lady who was carrying a baby in a band. She was really encouraging to me and it was nice to talk to her. Her boy was almost done with treatment and I remember wishing I was in her shoes. Today I was walking in with a women carrying a little boy, we talked for a minute and they were just beginning treatment. It's crazy how much we've learned, how well Garrett has corrected, and how fast the time has gone by.
We'll be in PT for another 6 or 7 weeks, and then we'll likely be done with that too! ...Just in time for 2.0 to get here.
Here are Garrett's before and after pictures:
The ones on the left are the befores, rights are after.Still a little tilt to the left (but the muscles have lengthened really well), and still a little jaw work on the left side that needs to be done to pull the left ear up a bit. That's why we're staying in PT.The back of his head has filled in great, and the egg shape is gone!The flat spot is gone, and his forehead and lips are symmetrical now.
I know I've said it a million times before, and I'll probably say it a million more, but I'm so proud of Garrett. He just goes with the flow and handles everything so well. He had 3D images done today again too, with the nylon completely covering his head and face. No crying, no trying to pull it off. And he sat perfectly still for all the pictures. I've met 2 mom's of helmet kids and they both told me they had to stop PT with their babies because they screamed the whole time. So thankful that Garrett hasn't shed a single tear in any of his sessions. We're really blessed. He's a good kid.
Here is Garrett and his clinician. She has a little crush on him.My little graduate.
I am not claiming to be smarter than your Pediatrician.
I am not claiming to be smarter than you.
I know flathead (not combined with torticollis) usually doesn't become a problem for a couple months, therefore, a lot of my advise and opinions about when to get a second opinion and start cranial sacral therapy won't apply if you're just dealing with flathead.
I'm not an expert on flathead (Plagiocephaly), torticollis, cranial sacral therapy, pediatric physical therapy, or DOC bands. However, I know a whole lot more about all of it now than I did 11 months ago. In the past 2 days I've had 2 concerned moms approach me and ask if they could ask me a few questions about the helmet. Both had kids that are past the age where being treated for flathead (with a helmet) is an option. One child is over 2 years, and one will be 2 in a couple weeks. People seem to be asking more and more about it these days. That's why I'm writing this. If your children are older and/or have perfectly beautiful round heads and symmetrical ears and faces, you'll be bored. But if you have questions, are still having babies, or have a baby you've worried a bit about, I may say something that will help. Seriously though, I'm not an expert, this is just going to be the post that I wish I could have read before Garrett was born.
I'm learning that most pediatricians don't know a whole lot about flathead. I mean, they know what it is, and they know what causes it, and they know it's common, (10% of babies have it) but based on the 2 peds we've had, and a lot of conversations I've had with strangers, and other doc band moms at cranial tech, flathead is kind of one of those non-life threatening things that peds will discuss, but ultimately leave up to the parents to decide. Our Utah ped didn't talk much about it because Garrett was still too young when we were there, and his flathead wasn't very bad, (torticollis babies are very likely to develop flathead because the neck literally pulls the head to one position when the baby sleeps or is on their backs) but when we talked about the head tilt and asymmetry of his face, she suggested we just wait it out and see if he grows out of it when he learns to roll/sit up, etc. Because he was only a couple months old when we moved, I didn't expect much more than that, and at that age, that's probably the advice I'd give too. (I would however find a good massage therapist or physical therapist who does cranial sacral therapy, AND STUDIED PEDIATRICS DURING THEIR SCHOOLING AND CAN PROVE IT...don't let your baby be an experiment for someone who wants to start working on babies. Anyway, I'd start that at about 1-2 weeks old) When we got to California, our ped here noticed the tilt and asymmetry. He talked to us about stretches to do, about physical therapy, and told us what pillow we could order to help with the flathead. Even with all that info, he still talked like Garrett should outgrow it, nothing was too urgent, it was up to us to decide, and that maybe in a few months if we didn't see improvement he'd refer us to a cranio-facial doctor. Garrett was 4 months old when that conversation took place, and had I known then what I know now, I would have asked that day for the referral and we would have started the doc band and physical therapy 4 months earlier.
Our ped had us come in at 5 months to look at G's head, and we had almost the exact same conversation as at 4 months. Then at 6 months it was a repeat again, except that he seemed to think the flathead had improved a bit. We went in at 7 months for one last check and he told us things looked really good and anything we wanted to do at that point was up to us. I asked him for the referral because as Garrett's mom, and being with him everyday, I could see things that I wanted a second opinion on. That's something we need to remember as parents, your ped sees your baby for 10 minutes every couple of months. They don't see how they sleep, how much they favor one side, how their range of motion is throughout the day. And also, I think one of the biggest things with G was his thick, long, voluminous hair. It did a great job at hiding the imperfections, but when it was slicked down (in the bath) the issues were so obvious. Peds don't see that stuff.
Pediatricians don't know how to treat or even diagnose everything that might be wrong with a baby. If they did then there would be no need for specialists. You're not going to offend your ped if you tell them you'd like a second opinion about something. And if they do get offended, ask for the referral anyway and also get a new pediatrician.
Do I think Garrett could have avoided the need for a helmet at the age he was when you started it? No. I knew that too many of his problems developed in utero, therefore him outgrowing the problems would be somewhat unlikely, but I think now that I've worked so closely with a PT and she shares so much with me about what she's doing, the body, the head, and how everything works and connects, etc. (Seriously, I feel like I'm taking a class twice a week, I'm learning a lot.) I do feel now that with our situation, we could have dealt with the torticollis more aggressively and possibly avoided it. But, I'm impressed with Cranial Tech and I see positive changes there too. Because we got the helmet and we started PT so late, I really can't say for sure. Do I think the time he's spent and will spend in the helmet could have been shorter? Yes. The sooner you treat, the easier it is to correct because the head gets harder and harder the older they get. Do I think the need for a helmet can be avoided when torticollis causes flathead? Yes, if physical therapy is started early enough. (This one, as well as most of my thoughts and opinions are for sure a case by case basis.) At what age would I take my baby to a pediatric cranio-facial doctor for a second opinion? 3 months. When are you still in the window of time to be treated? If you have questions or concerns I would always keep asking. But typically at 18 months, not much will change about your child's head shape, and treatments would need to begin 6-8 months before the 18 month mark.
The lady I spoke to a couple days ago was devastated about her son. She asked her ped what she should do for his flat spot every time she took him in. She adopted him when he was 1 month old and he already had the flat spot when she got him. Her ped told her at every appointment for over a year that they'd keep watching for it to improve. She finally took him to a neurologist when he was 20 months old, and ultimately she was told that he's just too old to do anything to correct it. Knowledge is Power. As cheesy as it sounds, this really is true.
Like I mentioned, 10% of babies have flathead. Probably not all of those babies need reshaping helmets, and a lot of them can outgrow it when they roll, sit up, start tummy sleeping, etc, but if you think your child might fall into that 10%, its worth asking about. The good news about the increase in flathead babies is that the SIDS rate is at an all time low. Since 1983, the rate of SIDS has fallen by over 50 percent.
Am I worried that 2.0 might have some of the same issues Garrett has? Sure, having to do all of this again crosses my mind from time to time. (Although babies who are born with torticollis are almost always the first born.) Do I feel more confident in the decisions I'd make and how we'd go about getting treated? Absolutely. Not that money is the main issue, but I know for a lot of families it is. If Garrett needs a second helmet, we will have spent over $10,000 out of pocket in one year for him. If we would have started 4 or 5 months earlier, I'm confident it would have been about half of that. Remember, the younger you begin, the quicker and easier everything fixes. Is there anything I'll do differently when she's born? It all depends on if she's posterior, how long labor lasts, etc. But no matter how that all goes, she will be treated by Garrett's physical therapist a few times, and have a couple appointments with my chiropractor in the first 2 months or so of her life. Being born is one of the most traumatic experiences the human body goes through. A little massage and a good adjustment or two is beneficial for any baby. And even if she has a perfectly round beautiful head, she'll sleep on an infant pillow for the first 6 months or so of her life.
If your baby has a little flat head, or even a head so perfectly round it would make a bowling ball jealous, here are a couple pillows I'd recommend for your infant from CLEVAMAMA and APPI. The one I have for 2.0 is almost just like the appi, I'm also thinking of getting a clevamama baby pillow or positioner too.
If you have any other questions or you'd like the name of our doc band clinician, physical therapist or chiropractor here in southern California, or if you have a baby that favors one side or has torticollis and you'd like some simple exercises you can do to strengthen the neck and improve the range of motion, feel free to leave a comment with your info and I won't publish the comment.
And on a somewhat related note, a sad story that brought me to tears. A 31 year old women (my age) from La Habra, California (one town over, where my in-laws live) had a baby boy just a couple months younger than Garrett. When he was an infant the mother was diagnosed with postpartum depression. When the baby was a few months old he was diagnosed with Torticollis, and because of that he also developed flathead, and began wearing a reshaping helmet. Are you catching all the similarities? A couple of days ago, the mother was at CHOC (Children's Hospital of Orange County) with her baby boy. She took him to the 4th story of the parking structure, took his helmet off, and dropped him over the side. He lived for 39 hours after the fall. They interviewed her husband who talked a lot about her depression. He also said that when the baby was diagnosed with torticollis the mother stopped thinking of him as her child because he wasn't a normal baby. The reporter on the news said she claimed to be too overwhelmed with his medical issues. As much as I can relate to this women, and say that I know EXACTLY what she was going through, I can't even begin to imagine getting to the point she got to. It breaks my heart.
Babies are born with so many different issues. Some life threatening, some not. Some time consuming, some not. Some expensive, some sad, some scary, some confusing. I wouldn't even know how to define a 'normal' baby. Even if you're overwhelmed, you'll get through it. Ask a lot of questions, take it one step at a time, and do what you think is best. Your baby needs you to get them through it!
That's what I said to Paul over the weekend after watching my little fearless, 4 wheel drive son playing. He is outta control. He literally bounds down the couch while holding onto the cushions and tries to jump over the back of it. He climbs over boxes, laundry baskets, and people. And if he happens to get stuck on top of something or someone, he just dives off, head first.
A couple weeks ago when we were at Lake Arrowhead, he climbed a flight of stairs in a matter of seconds. We have no stairs where we live, and he climbed those things like he's been doing it his whole life. And at a play date with friends last week, the house we were at had 3 little steps off the living room down to another room, and he climbed down those face first without even thinking about it.
If he wants to get somewhere, he'll get there, and fast. And the crashes, bumps and falls don't stop him. At one point last week he had a bruise on each leg, a scratch on his nose, and a red spot on his forehead. I was a little worried about being turned in to CPS at physical therapy. I promise I don't neglect him, he's just a little unstoppable ball of energy these days.
I told Paul that we need to be ready for stitches, casts, and ER visits with this one. Probably much sooner than we think.
And he can't even walk yet...
Also, today marks 2 months in the DOC band. (Which has saved his life several times during his crashes and falls.) We're hoping today is the half-way point, but it could be just the 1/4 done point.
First of all, Garrett is almost 10 months old. Yesterday I realized that when he turns 1 I'll be about 34 weeks pregnant. And if the home stretch of this pregnancy is anything like my first, I won't have much energy or motivation to plan a birthday party. I'd already come up with the theme for his birthday but hadn't done much else. Until yesterday. I'm in full on party planning mode! I told Paul not to worry because it likely won't last the full 2 months, but right now, and probably for at least a couple more days, the creative juices are flowing! I think he believes me...although I did hear him mutter a comment about contacting TLC's Most Outrageous Kid Parties. I told him last night in bed that I know Garrett won't remember it, or even know what's going on. But I asked him how much of his early childhood he really remembers. I don't remember much of mine. But I have pictures of fun things my parents did for us kids, and seeing those, even though I don't remember the days or events makes me feel loved. I told Paul, as funny as this may sound, planning things like this, and then having memories of it through pictures is kind of a little love note from me to Garrett. That helped him understand, although he didn't really have a problem with it.
But the main reason I started writing this. Garrett had an appointment at Cranial Tech yesterday. They see a little progress already, which is good. But there's still some concern about the left side of his neck. We got a call from his pediatrician today saying Cranial Tech called him and asked him to write a physical therapy prescription for him. We also have to take him to a specialist to have x-rays of his neck to see how bad it really is. I read somewhere months ago when I was trying to become educated about Torticollis that something like 8% of babies who are born with it have to get is corrected surgically. (I really don't think his is that bad, but what do I know?) Physical therapy is expensive! Just like everything else. But if he needs it, I suppose we'll do it. Paul talked to our insurance guy yesterday because we got a check from them to help with Garrett's helmet. We were told the most they'd pay would be $700 of the $3800 and we were pretty sure we'd get all of that. We got $585. Our insurance guy told Paul, "You need to remember, insurance companies aren't in the business of paying out money." ...Comforting... And, um, yeah, we know. In the month of June, between Garrett, my unborn child (who we pre-pay for the delivery for), counselling, and my tooth, we've been billed out of pocket, almost exactly $8000. In one month!!
My parents were always good when we were growing up about making kids the priority. Whether it be medical stuff, school stuff, extra curricular stuff, etc. But I do remember hearing from time to time when several things would hit at once, them saying to each other, "it never ends..." I only have one kid right now who's less than a year old, and I've already learned what those three words (when it comes to parenting) really mean. (But it's oh so worth it.)
I think Garrett is cute. Quite possibly the cutest baby in the world. ;) I've gotten used to strangers on a regular basis just eating him up. Not only does he smile at everyone, but he acts excited to see everyone, and people can't get enough. He's a total charmer.
When my mom and I were sitting with him at Cranial Tech I said to her, "Is it bad that one of my biggest fears about the helmet is that he probably won't get compliments all the time??" (I know, but I said 'vain' in the title, what did you expect?)
Well, we're on our third full day with the doc band. I had this horrible feeling when I first saw the thing. You know that scene in 'The Man in the Iron Mask' when the king brother captures his twin again and puts his back in the mask and as he's pinning him down to put it on him the brother screams and screams and flails his head back and forth and begs him to kill him instead?? Yeah, I saw that seen over and over in my head when I thought of putting G in his band. Much to my surprise it was quite opposite. He sat still while we put it on and then he smiled as soon as he got strapped in. No tears, no frustration, no trying to touch it or pull it off. And as soon as it was on he was all over the place playing with toys again. They made a couple minor adjustments, gave us some instructions and we were on our way.
That first evening we went out to a street fair. I was a little nervous. Paul, Taylor and Garrett walked way ahead of my mom and I because we wanted to check everything out. Every time we caught up with them they'd give us a report. "Two people said how cute he is, and one lady walked by and said, Ooohhhh, cute!" Then the next time, "Three people said he's adorable, and one guy asked what it was." Etc. I know this isn't something that I should even worry about, but I felt better after that.
Then for the next two days Paul and I went out of town for a late anniversary trip. (maybe that post will come tomorrow) My mom did a great job at taking care of Garrett and he's doing great at acclimating to the band. The first couple days we were supposed to check his head for rashes every 4 hours. He has a couple pink spots a couple times at the opening of the band, (which is normal) but they faded fast and he acts no different whether its on or off. Phew, I'm so happy about that.
So we're on to 23 hours a day. An hour off to swim, bathe, play, whatever. We wipe the band out with rubbing alcohol and let it dry during that hour and then its back on. It's a new routine, but its not too time consuming and it doesn't interfere with much.
We went out to dinner last night and he made friends with a one year old boy sitting next to us. I noticed some people watching the babies and I could tell that people were wondering what it was. I know I have no room to talk, because its a little uncomfortable for most people to see something different or unfamiliar, but I wish people weren't afraid to ask if they really want to know. I don't think I'd mind answering questions. But I know I'm not the type that asks either, so, I get it.I'll try and give updates every now and then on his progress. But, so far, so good. (And for my own record, Garrett got the DOC band on 6.22.11. One day before his 9 month mark.)
Garrett got his second round of pictures taken of his head today. The ones where they cover his whole head with a white nylon and make him look like the worlds cutest criminal.The pictures went well. Even when the women taking them messed up and had to try again. Garrett just sat there like a champ and waited for her to redo them. The 2 helping her said that G made this whole process look easy. I was happy this went well. My only knowledge of this process was what I saw on Quints by Surprise. And the baby boy on that screamed and screamed and screamed during his pictures.
We go back in 2 weeks to pick up the finished product, and then we go back every 2 weeks for the next 4-8 months.
I thought today would be harder for me than it was. Especially when I walked in the door and heard an out of control screaming baby, and then 3 more screaming babies throughout our appointment. It's hard to have a baby look or act uncomfortable or scared because of something I'm choosing to do, (that of course is beneficial in the long run) especially when I can't explain why we're doing it. So I was glad it was a tear free visit for us. Every 2 weeks they measure his head and adjust the band accordingly. It helped when we left that the waiting room was full of strollers and full of happy doc band babies. Garrett will do fine, I'm sure!
We are still waiting to see if our insurance will kick in and cover anything, but in the meantime, we paid in full today for band number 1 in order to get a $300 discount. Thanks to our Dave Ramsey inspired emergency fund and 2 sets of grandparents who love the crap out of Garrett we were able to do this.Here is Garrett waiting for them to call us back to see the 3D image. Yes, it looks like we've left our child standing on a 4 inch ledge all by himself, but I assure you Paul's hands were at bum level just outside of the picture.
This morning I was going through some of Garrett's stuff and I came across his drawer full of adorable hats. I think we'll do a hat photo shoot in the next couple weeks and then say good-bye to all the summer hats that we'll never get to use. No biggie...
We stopped at an outlet mall on the way home just to walk around and I found some size 18 month baby hats. I almost bought one to fit over the band so he doesn't get a weird tan, but I didn't get it. But I did go in 5 different baby stores trying to find 12 month sleepers that snap, not zip, and I found zero. Do they make em? Garrett's toes are curling and the sleeves are too short now on his 9 monthers, but his room stays really cool so I still want a couple sleepers. And speaking of baby stores. Have you ever been in Sprockets? Wow, if you have a baby and you lack self control, stay out! CUTE STUFF! I'll frequent that place when we have money again.
I've gone back on whether or not to post the first round of pictures. But I know most of the people who read this don't see us that often, and when we do see you and the head situation comes up, no one can ever really tell what the problem is. So here you go. Notice the head tilt, how much lower the left ear is than the right because the left jaw is pushed in and its pulling his ear down. The left side of his forehead is flat and the back right side pulls back too far. And the last two pictures show the flat spot on the back of his head and how once his hair line starts (at his ears) his head is a little too wide. That little helmet has a lot of work to do. (Which is why he'll probably outgrow this first one and need a second one.)I know, he's still the cutest baby ever, even with all his asymmetry. The best thing Paul has said in this whole process, "What if his asymmetry is the source of all his cuteness?!"
The good news is that our pediatricians price estimate was off and the doc bands only cost $3800.00, not $4500.00.
The bad news is that doc bands cost 3800 dollars!!! And, that I got a call yesterday from the insurance lady and she said the two who did the evaluation and pictures of Garrett (who can almost always tell how long a baby will need), think that he will in fact need 2 bands. And, she talked to our insurance company. I won't bore you with everything she said, but she went over some numbers, total costs, max they cover IF we get approved, percentage they cover of that max, and a deductible that we pay. Bottom line, we're looking at a total cost of $7600.00 and IF we get approved for the MAXIMUM our insurance will cover, they will pay AT THE MOST, $700. Seven. Hundred. Dollars. (Not $700 of each band, $700 total. I asked.) After doing a little quick math, I think that leaves Paul and I with a MINIMUM out of pocket of $6900. Holy Shit. I try not to swear cause my mom, my aunt(s), a couple friends moms, and maybe a couple younger cousins read this. But shit is my favorite word. And yesterday I deserved a good, Holy Shit. And, because this treatment is elective, we pay the whole amount in full, and then when/if the insurance company decided to, they send us a teeny, tiny check directly.
I think the lady who called probably thought I was crazy and emotional, but I had been working on labeling my old blog posts, and the one I was on when she called was THIS one, the one about my uncle dying. And today is the 2 year anniversary of his death.
Thankfully, God put a lot of things on my heart and mind last night that reminded me of how blessed we really are. I guess I needed some perspective, and I got it.
From the moment I found out I was pregnant with Garrett, I always knew I'd do whatever it took to provide my kids with whatever they need. Garrett needs a doc band (or two), and now Paul and I are learning how to sacrifice and make things work so that we can do just that.
We wont starve and we wont be homeless, so I'm pretty sure we'll survive this. Not sure how at this moment, and if today someone came up to me and asked if I wanted seven thousand dollars I probably wouldn't say no. But we'll figure it out.
Paul had a cold. Then he got over it. Then Garrett got a cold. Then Paul got a cold. Then Paul got over it. Then Garrett got over it. Then I got a cold. That brings you up to date on the cold situation at our house.
I didn't take my unisom combo last night. I took Metoclopramide instead. Big mistake. Huge. My doc warned me that it could make me a little loopy. She said it was safe to take every 6 hours, but if I did, I'd want to have some help lined up because I may not function. I took it just before 9PM when Garrett was asleep. Paul and I went to bed at 11PM. I start feeling tired with unisom within about 20 minutes. I felt nothing from the Meto-blahblah. I laid in bed. Then I started singing 'For health and strength' and 'Row row row your boat'. Oh did I mention that I threw up right before I went to bed? Then I made Paul sing the 2 songs with me in rounds. Then he dosed off. I woke him up to talk about something. Honestly can't remember what. I think it was something about me being a bad wife and a bad mom. Then I noticed the light on the ceiling from the screen of Garrett's monitor. So I did a hand puppet show with the shadows. It was a dinosaur and a unicorn fighting. Then I made Paul try and guess the shadow sign language for 'I heart you'. Then he went back to sleep. At 2AM I realized I was still awake. At 3:30AM I realized I was still awake and needed to pee. So I did. I also realized it had been more than 6 hours since I took a pill. So I took a half of a unisom. Those don't wear off for about 9 hours, so I got about 3 hours left. I played brick breaker on my phone for an hour and then fell asleep. 2 hours later the men who are re-roofing our building got here. It sounds like a herd of wild elephants running around for about 10 hours a day. And that's where we're at right now. Oh and this morning? I remember singing and puppet showing. I just don't remember why I did it. I also text Paul at 8AM to see if we could go camping and he said, "Is this the meds talking?" But it's not, I really want to go camping.
We took Garrett to Cranial Technologies yesterday for a head evaluation and the first round of pictures. He's getting a helmet. Paul and I feel good about what they told us. I'll fill in more details when we go in for round 2 of pictures and get fitted, but for now, he'll probably have it in about 3 weeks and he'll wear it for 23 hours a day for the next 3.5 to 8 months. I know, right? Oh well. We saw a lot of doc band babies yesterday and they all seem to not mind the 4 ounces of plastic on their heads all day. And I talked to a lady in the elevator who had a 12 month old who was in his 5th month of doc band usage and she said he loves it and she sees tons of improvement. When its off for the 1 hour a day he wonders where it is. My only question is how does 4 ounces of plastic cost so much? Oh well, you can't put a price on a round head. Well, actually you can, and it's about $4500.00. Oh and did I mention that if he needs it for more than 4 months we have to have a second helmet made? So $4500 X2. We're waiting to hear tomorrow if our insurance covers any of this 'elective' treatment.
Still a little tilt to the left (but the muscles have lengthened really well), and still a little jaw work on the left side that needs to be done to pull the left ear up a bit. That's why we're staying in PT.
The back of his head has filled in great, and the egg shape is gone!
The flat spot is gone, and his forehead and lips are symmetrical now.
My little graduate.
