Saturday, July 31, 2010

Ear ache or helmet problem??

So today we had a pretty relaxed Saturday. We went for a drive and found some amazing lakes which of course we have 15,000 in the state we live in. It made me want a vacation so bad!!! We are torn between going home in two weeks or waiting until january or february and then we would take a real vacation. Anyways during the trip I noticed Nolan trying to push on his helmet by his ear. Now he has done this once or twice before but then he stopped.

He continually had his hand up by his  helmet on his right ear. Once we took it off tonight to clean it and give him a bath he only put it up for a minute and then stopped. We have a 6 month checkup in just under two weeks. I am going to continue to monitor him because if it appears that it is bothering him I may have to take him sooner. He of course doesnt have a fever but has been quite whiney all day. He woke up at 4:40 am this morning!! UGHHH I want the baby back who gets up at 7 am. I know the helmet is an interference but i assumed since he is use to it that it would not effect his sleeping, WRONG!!! So I have to adjust everything and just be aware that he will probably get up early tomorrow. He has for the last two nights. Oh and last night was his first night in his room all by himself. I missed him dearly, but it was well overdue. He has been taking all of his naps in his crib but slept in the pack n play in our room for the last few months. I hope tonight goes much better!!!! Hope everyone continues to have a good weekend!!!!

Friday, July 30, 2010

Here are some photos!!

Well i promised and here you go!! I tried to get every side of the helmet so i apologize if some are blurry but you get the point. Coree was excellent at I would definately work with her again!! Of course we had to get the red sox in there :)

**To the left of the Boston logo it says "Helmet Laws are a Bummer!" ---Sooooo True!!! Have a great weekend all and please know this was a huge step for me to take. I have not posted any helmet pics anywhere!!!**

Thursday, July 29, 2010

Another Day

Well Nolan was quite rowdy last night. He was up very late just chatting away but he did sleep in a little. We had so many errands and unexpected doctors appointments *for myself* that we just didnt have time to upload the photos, I did take some though. So tomorrow it is. This will be the first time I ever post a picture of baby boy in his helmet. Im very nervous about it but i just hope everyone see's the same handsome boy that I see.

When I went to the doctor today, the office assistant stopped me and said Oh he has a flat spot right, my nephew wore a helmet. I just felt so relieved that I was standing next to someone who understood it. She said her sister wanted to hang a sign on her son that said "stop staring I am only fixing my flat" lol. I agree!!! Don't stare its sooo rude!!! Anyways the helmet is getting its second coat of modge podge so Im off to see if it is dry. Have a great night and see you tomorrow!

Wednesday, July 28, 2010

Helmet Decals

Well they came in and lucky enough for me, my hubby volunteered for this job. It took him about 90 mins to do it. SO yes the helmet was off for an extra 30 mins. The dr said it would be okay so that helps. Im going to try to take some photos tomorrow because N is sleeping right now.

Today was just a normal day. He wasn't overly tired or overly awake. SO all in all this was normal. I on the other hand had several malfunctions with anything electronic. My laptop decided to crash so I am on our desktop and then this morning i had an error on my blackberry that did not allow me to see anything or make a call or anything. I said what is next our tv???

I was talking to my mom tonight who asked me if it was hard to feed the baby while wearing his helmet. I said its been two weeks so I am already adjusted and don't really notice it except when i get hit in the face with it which hurts!! It is definately an adjustment not to feel your baby's head on you but instead a cold hard huge helmet. I think what get's to me the most is not being able to see his eyes without physically moving his head upward. That seems to be the hardest thing for me. When the helmet is off i just stare at those giant blue eyes.

To those who told me everything would be okay, i know that it is but it is a major life adjustment. You have to change the way you do everything. I have switched positions holding him. Which may not seem like anything but when I first did it i was wondering why that arm was so sore, duhhh!!! I also have to change the way I lay him on the changing pad and just carrying him. Cleaning the helmet and monitoring his body temp along with making sure zero moisture gets in there. This is insane!!! Since my baby is an Acid Reflux baby there is bound to be spit up and straight up it happens every time he eats.

On a funny note completely unrelated to Plagio, i have been reading to him twice a day and he cracks up laughing and Im not even doing any funny voices!!! I love it but it just cracks me up to think what is he laughing at.

Tuesday, July 27, 2010


This is the best way to explain Nolan and myself. He has slept so much today which really helped me get some things done around here that I really needed to. Last night, he fell asleep on our bed and then he woke up and we were taking pictures of him because he was being so cheesy! This was during his one hour of time off from the helmet.

Everytime the helmet comes off it is as though I see a new baby. I took a photograph of the back of his head and I can notice a difference. I wish i would have taken the same kind of side shot when he was diagnosed but I was so overwhelmed with the diagnosis that i did not think of it until 3 days after he had the helmet. I am by no means saying he is 100 percent better i just notice a slight change. Plus since he lost all of the red hair he was born with (sad moment), it is really easy to tell since some of the hair is missing now. He is now a dishwater blonde boy. I wish he would have kept that color he got from mommy :) I wanted a redhead so bad since I am one. He was definately born with it but when hair loss kicked in a month later this other color came in. Oh well such is life.

So he has been doing well today and isn't comfortable in the helmet but he must understand its a part of his life now because he has stopped crying when we put it on. On occasion he may cry a bit if he is tired or if we have it angled wrong but that is few and far between. Hope everyone had a great day.

Monday, July 26, 2010

PT this morning!!

Well early can be good and bad. Nolan woke up earlier then i had wanted this morning but it was good and bad for his appointment. He was exhausted by the time we got to PT which is not good!! She wants to see what kind of work he can do on his own and when you are sooo tired what can ya do?? The helmet is always considered a set back so she warned me ahead of time.

I had noticed when doing his belly exercises he wont lift his head very much and feels like its a brick sitting on his neck. She gave us some more tips and said really encourage him to lift it up. We do exercises 4x a time which is basically every time he eats. He has not improved or decreased. She said he is exactly where he was three weeks ago which was good then. I told her im just glad he didnt get worse so we will keep working with him and make the adjustments need be to help aid with the helmet.

So he is fine, not worse or better. I think the decals may come today i really hope so!!!! Sorry for not posting yesterday but I have been run down and so exhausted. I barely have a minute to spare but when i do i post it here!! Have a great Monday!!

Saturday, July 24, 2010

Sleepless and cranky!

Well we had another bad night with baby boy. He is not napping well at all. I feel so bad because i know how tired he is. He is definately having a growth spurt right now. We go to the physical therapist on monday and he was super tight in his neck right now.

Now he does this thing where he rotates his head in his helmet and it drives me crazy like he is itching a spot he cannot reach. I am constantly reaching for his hair that is in the top of his helmet just so he can feel some human contact up on his head.

I am so exhausted from our weekend so far so i apologize for these small posts but there has not been a huge difference in his helmet wearing lately.

Friday, July 23, 2010

Its Friday!!

Lately Nolan has been moving his head around in his helmet. There is a bit of space in there for growth. Im not sure if he is just sick of it or super itchy. It seems lately he certainly does not love his helmet. I hope he loves it more when the decals come in. There was a shipping notice for the decals so i hope they come soon!!!

Each day i feel less and less stressed and the guilt is starting to disappear. All the emotions i once felt I have put into taking care of my child (not that i wasnt before). I look forward to his measurements in the weeks to come. I think i notice a slight improvement but by the time we go it will have been three weeks. I know not to expect any miracles but improvement is better then declining right.


This is a post for yesterday. I was up so late with a screaming baby. He didnt take his last nap and just screamed for an hour. I felt so bad for him. His back was soaking wet from being so hot and he was majorly thirsty.

He has a physical therapy appointment next week and i hope his tortecollis is improving. The exercises are harder with the helmet on.

His sleep has been so poor lately and this weekend we are moving him to his crib and now im terrified to do so because he will probably sleep poorly. Any tips out there??

Wednesday, July 21, 2010

Wide awake

So today Nolan has completely wanted to be a momma's boy and be with me every second of the day. While i enjoy this, it is so difficult to get what little i can get done. So i had to nap with him for a while earlier and tonight he did not want to go to bed. That is quite unusual for him.

He is still touching an pulling at the helmet but i hear less crying when we put it on so that is an improvement. His tort exercises are so hard to do with the helmet on but i do it that way so we do not have to remove and replace the helmet several times a day. Also, he is waking up twice during the night now in the last few days. He has slept through the night since he was 6 weeks old so I am not use to this. Thankfully last night my husband got up both times with him because i was so out!!! If there are any moms out there with plagio kids did your child go through this at all? We just figure he wakes up and is hot. If we give him his paci, he will go back to sleep. Hopefully we figure it out because this weekend he moves to his crib full time. He has only been napping in there during the day and for bedtime he goes in the bassinet. Im crossing my fingers tomorrow is a better less clingy day. Dont get me wrong i love him more then anything and love holding him but mommy has housework too!!

Tuesday, July 20, 2010

No measurements

It occurred to me late last night that they may remeasure his head to see if there was any progress. Unfortunately they did not. They adjusted a few hot spots in his helmet and adjusted the sides by his ear. We go back in 2 weeks and she said they will definately measure then. I look forward to that. He is still adjusting okay to the helmet. I told her how he tries to push it up which is normal of course. Today he has been super fussy and cranky and rubbing the helmet by his ear. So tonight when we removed it he still rubbed his ear. I am going to monitor it for an ear infection but also today at the doctor she noticed dry patches on that same ear so i wonder if he is bothered by that. We did put some lotion on it but then of course have to wipe it off before the helmet goes back on. Other then that today was uneventful.

Monday, July 19, 2010

Finally figured it out

Over the weekend I finally got it through my mind. It's me. I have the problem. I am the one with the hang up just like other supporters had told me that they went through. It is as though I have had an epiphany. I am the one who is letting the helmet block me. My mom and I talked while she was here and the helmet was still in process. It is my business and I choose who i share it with and no matter what those that DO love us and DO care about us will be with us through the whole process. The helmet does not change who Nolan is or how much we love him. It is purely a procedure that we have committed to in order to make his head round.

For those who may judge or say things and even think things but do not necessarily tell me. He is a perfect little boy who has met or been ahead of all of his milestones. Holding his head up was the first one that ever came across as on time or concerning. The helmet in no way affects his mental capacity or means that he is slow by any means. From speaking with other moms, it could be a possibility that his crawling may not occur as early as it would have because the helmet does weigh 7-8 ounces, which may not seem like a lot but to a very tiny body it is. At first i was upset about this but i will just take it as it comes. Every baby grows and develops in different ways and I am still going to be right by his side helping him reach those milestones when its age appropriate.

All in all, I was the one with the problem. I am the one who has to overcome this and all I can do is know that I am doing what is right for him and I will get through this one day at a time. If you know anyone who has Plagio or just been diagnosed, please do not make light of it. It is serious, it is a hardship and they need your support more then they may let on. The worst thing to say to a parent of plagio in my opinion is "at least it isn't something worse". I have had 3 people (that's not many considering not many know), yes I am glad it isn't something terrible but this is not something I would ever expect to look for. It is very expensive, hard on the child and parent, and can cause asymmetry in the face. That is nothing to take lightly. In fact a majority of the children with plagio have asymmetry. Nolan does with his ears. His is very very small and will be corrected with the helmet but if you let it go long enough it may not be corrected. So please be kind to those who have plagio kids and please understand that it IS something serious.


I started to journal the day that the helmet came. So i will copy and paste my journals into this one post and from here on out i will do a post daily if i can about how i feel that day or what new obstacles are occurring.

Day One of Plagio-
The helmet arrived. Nolan took to it very easily but avoided looking at it when the doctor placed it in front of him. It’s a solid white helmet that blocks those gorgeous blue eyes that I adore seeing every day. We are in the breaking process right now so while he sleeps he does not wear it. When we came home tonight, I completely lost it. I just stared at my ‘new” son and cried. He was perfectly fine but I had a problem. When he did start to cry Nick assumed it was because he wanted to eat which it was time to eat.I just lost it and asked how he didn’t know it was due to the helmet, he of course backed down when he saw my tears. I really hope the next few days are easier. I just sat in the kitchen on our bare floor and cried for an hour. Nick doesn't understand and is way too easy going about everything. I understand that there could be worse things, but i would never ask for this or wish this process on anyone.

Day Two of Plagio-
Nolan cried when I put on his helmet this morning and I managed to smash his ear. I felt terrible. Today he wears it for 2 hours at a time but honestly only does and hour and a half before hes crashing for a nap so then we are required to remove it. The reddness is there of course but goes away. I hate putting this helmet on. It really should take two people and I cannot wait until he does wear it all day because then its less times I have to put it on. After 90 minutes he was soaked in sweat so I can imagine 23 hours!!! If it gets any worse today I do not know what I will do. I joined a support group online last night and I think it will be very beneficial to me.

Day Three of Plagio-
Today was 4 hours at a time plus leaving it on while he slept or napped if it was during his 4 hour time period. He did really well sleeping it during the day today. It is so hard to open the helmet and especially by myself. He still cries for a minute or two but then everything seems okay with him. We are watching for redness and of course his head is red every time but no localized spots that we can see.

Day Four of Plagio-
Today is a big day in many ways. Nolan will wear the helmet for 8 hours at a time and has to sleep in it overnight. I sure hope he sleeps well! He has slept through the night since he was about 5-6 weeks old. We noted a localized spot on his head during an hour break but luckily it went away. I started to feel a bit better today about the whole helmet situation. We went furniture shopping and took him out for the first time with the helmet on. I was terrified that everyone would stare and say things under their breath. While at the furniture store, the lady helping us asked us what it was for. She assumed it was for a soft spot on his head so we explained and she was so kind. This was a huge relief for me in many ways. He also met his Biological grandfather. I was not excited to do this as the helmet was a huge barrier for me, not for Nolan.

Day Five of Plagio-
Well my son is a trickster. He began touching the helmet and now tries to push it up after hours of wearing it. Today is his first full day of wearing it. The doctor was not wrong, there was plenty of sweat and you definitely have to thoroughly clean the helmet, you don't want that smell around all day! I know that it is gross, but this is the reality i face everyday now. Nolan also will twist and turn his head all around as he watches the helmet come down on his head. Little sneaky boy :) I received many emails checking on me from my support group and my new friend Allison. I cannot tell you how much it has helped to talk with or email other parents who all felt the same way that i did. They know how much work it is and the obstacles that i will face. I am blessed to have "met" other moms who feel the same way.

Day Six of Plagio- Today was the first time while being out where everyone stared or at least i felt that way. Granted, we were in a really different area that we went to on accident. We were not close to home and were very outside the comfort zone. None of them said anything but stared at us like we were aliens and not once did i let it show that it bothered me because for once it did not. It was so hot today i felt absolutely awful for the baby. He was actually dripping sweat off of his head onto his nose. I keep remembering what Allison told me which was if you appear as though you are embarrassed about the helmet others will feel the same way. You have no idea how this has stuck with me. Times have been hard and taken me on the worst emotional roller coaster possible but in the end we are doing what is best for him and I always will.

Today otherwise known as Day Seven of Plagio- So far this morning he has been fine. It is just now noon and he is doing okay with the helmet. I will not say he loves it or hates it but just cannot wait until it is bath time when he is free from the helmet. Last night when we put him to bed he slept through the process of putting the helmet back on. That was wonderful i wish i could have it that way everyday!!! We go back to the doctor tomorrow to talk about localized redness, which is appearing on his cheeks from the helmet and one spot on his forehead. Nick thinks he has grown because there is not as much space in there anymore. We will see i guess.

Our Diagnosis

On June 21st we went for a regular 4 month checkup. I had expressed concern to my Pediatrician that Nolan was only holding his head up if we carried him. We had tried the bumbo and jumperoo and he would constantly lean to one side. The Doctor suggested physical therapy and barely mentioned the word Plagiocephaly. I had only heard part of the word and thought nothing of it.

The following Monday we went to the Physical Therapist who confirmed the diagnosis for our little boy. He not only had Plagiocephaly but also had Tortecollis. Plagiocephaly also means flattened head. Nolans is on the right back side which in turn came about because of the Tortecollis, which is a twisted neck, again also on the right side. I started to tear up in the Evaluation room. She immediately brought out the "helmet". This was the scariest thing at that time and moment. I completely lost it in front of my baby, the PT, and a student who was observing. I felt like a complete idiot.

My husband had to come and get us because I could not drive, I was shaking so bad. I explained everything to my husband who left work and came to get us. The physical therapist then told me he would have to be fit for a helmet immediately because it generally takes 2 weeks to arrive. I told my husband I did not even know if i could go and handle the process. So he stayed home with us and we went to the Orthotic. At the Physical Therapist, she measured his head to see how much of a difference there was between the flattened side and the round side. She said around 10 mm.

When we arrived at the Orthotic, he measured 12 mm which was more accurate. For those who do not know, anything 6mm and higher qualifies for a helmet. Anything below that just needs to be monitored or you can utilize positional placement to fix the problem. Also, your child must be 4 months or older to utilize a helmet. Insurance only covers certain types of Plagio and specific measurements. Brachycephaly, Plagiocephaly, and Scaphocephaly. Nolan has a combination of Brachy & Plagio. Brachy is the entire back of the head is flattened. Plagio is the side of the back of his head. Scapho is the head appears to be long and most often seen in Breech babies.

I have read and researched that parents of children with Brachy often find out their insurance does not cover a helmet. Nolan's is mainly Plagio but there is slight brachy because of the way his forehead is shaped. Now to explain this in layman's terms. His head is growing forward instead of growing around. He was in the birth canal and positioned most likely on his right side which is why the tortecollis came naturally. The back right side is flat while the rest of his head is round.

For tortecollis, aka twisted neck, he goes to physical therapy once every two weeks now and i have to maintain a program at home which he does 3-4 times a day depending on the tightness of his neck. There are stretches and certain ways that he can play in order to help reduce the knots in his neck.

The helmet fitting was awful for me but Nolan did not mind it at all. Our facility does not have the famous STAR machine. Our orthotic took an hours worth of measurements and then placed plaster strips around his head to make a mold for the helmet. The orthotic turned to me and told me the instructions for how to take care of the helmet and etc. Then he gave us a design book. At that point I had stopped listening. A design book??? As if this is fun for us? He showed us a website which i will review in the future for decals that you can order for the helmet if we chose a plain one which we did. We chose a plain white one. We left the office and I felt unsure, guilty, sad, angry, and ashamed. I had no idea what journey we were about to embark on.