nolan

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The Best News!!!

We officially have a part timer!!!! Nolan will only wear the helmet when he is sleeping or in the carseat. He will be part time for three weeks before graduating unless he grows out of the helmet sooner which may just happen! Im excited and nervous. I am just extra paranoid about when he does not wear it so I am constantly making sure he is sitting up and not laying down while he is playing. He has been a really good sitter for the last 2 weeks. Therapy is improving and we have the tape on for one more week even though he doesnt really need it I requested it from our therapist.

I am looking forward to meeting some other Plagio mommy's tomorrow night at an event where we take Nolan. I think he will wear his helmet because on the ride over he needs to wear it so we may just leave it on for the event. Nolan is very squirmy now a days and very loud. He gets so excited and starts waving his arms and yelling mama lol. He just needs to say dada so his daddy can get off my case about me being his favorite :) Which is fine with me since he is with me all day. Anyways i have to get ready we have a therapy session this morning.

Im a slacker im sorry.

There is no excuse of course. This last week has just flown by.

The first piece of great news is that Nolan has mastered propped sitting. He does lean a bit but our PT said that he could have come out of the helmet last week. This is amazing news!!!! We are going to call his orthotist tomorrow because she wanted him to transition out of the helmet. So he would go to part time before it comes all the way off. I believe part time wear is only during naps and sleep overnight. This may be a huge week for all of us. I love to see his smiley face outside of the helmet. He looks so much like my husband when he isnt wearing it :) Either way I think hes adorable anyways.

On another general note he now has added green beans and carrots to his favorite list of bananas and peaches. He makes the sweetest noises and just screams Mama everywhere we go, he gets so excited he starts moving his legs and arms so fast and sticks his tongue out at his if were playing with him.

His favorite toys are still Sophie, his seahorse of all things still, his jumperoo, and the bumble bee he uses in therapy. Of course anything he can shove in his mouth is always good. He has no teeth but i can see some white in his gums in three spots so I dont know if they will all spring up at once or what. Also, fall has arrived here in MN. He has been wearing long sleeve sleepers for the last 2.5 weeks. Althought today was unusually warm. With his helmet he is so hot but when those fall temps are here he is cool enough.

The kineso tape seems to be going well. He just had it put on Wednesday, Its starting to unravel which she said it would but i notice him sitting up quite a bit straighter now. I really hope it helps. Also we have him kneeling beside a cushion and he keeps standing on his legs and laying his head down, it is just so weird to see him standing even if its only half standing! Hes growing way too fast :(

Sad day but thankful!!

Well my in laws left today and although there were more headaches then anything we all cried a bunch. It is so hard to be so far away from family and friends when going through something stressful like this. However, i count my blessings every day that my son does not have something worse then this.

My mother in law pointed out to me a few times that for as many things that have gone wrong, Nolan has handled everything very very well. He is the best baby when it comes to being strong and just handling every situation. He did not cry when or fight anyone when he had to have drops at the eye doctor, during his shots he just cries for a split second and then its over. I keep telling his doctors who are always shocked at how well he does that he has gone through so much that these other things are nothing compared to what he goes through daily with the helmet.

The helmet is officially trimmed as much as possible in the front where he has skin breakdown, which is basically where the helmet rubs and it leaves a red mark. They dont want it to get worse so then it does not leave any permanant marks or rashes. She said his head is still perfect. The therapist said his propped sitting is definately mastered and now we are on to trying something new.

We are going to use Kineso Tape on his obliques. She said it will speed up the process and make him learn to use his tummy muscles to pull himself up and catch himself. Since we are in a hurry due to the helmet not fitting properly, we need to speed up the process. Kineso tape is used by the olympians and looks similar to bandaid material with grooves in it. they will make an X across his belly and he will wear it until it falls off which is about a week and then get new as long as hes learning and it works. I just pray it works because the helmet will probably come off in about 2 weeks. Being that his measurement is now only 2.5 mm he has made drastic improvements with his head now we just need his neck to catch up to his head. I will most likely be away from the computer for this weekend but promise to return to normal on Monday. So in light of that Happy 7 month birthday tomorrow to my handsome son. I love you more then anything and no matter what we could not be prouder of your accomplishments everyday!!!

I am so sorry!!!

I have been a terrible blogger. I forgot to update everyone and let you all know that my in laws are in town for two weeks. I currently have 4 extra people in my house and its been nuts.

Anyways, i will be a better blogger once the weekend comes and everyone leaves.

Nolan is only 2.5 mm now!!!!! We need to celebrate. He is chatting up a storm with mama and baba. He sits but will start to lean after a while. Therapy is going okay he still needs it every day and 2 times a week at the hospital. I just pray and hope it works for his neck. I wish i seen fast improvements with his neck but I will take what i can get right. I will be back to regular "programming" on the weekend lol.

I am now that mom

Today after PT, I had to run some errands. We were in target and i swear i spotted a pink helmet from a mile away. So i ran up to the mom and said i love your daughters helmet and then she said i love nolan's helmet too (his name is right on it obviously). It had pretty flowers all over it. She looked about  a month younger then nolan. She said you never see them and i told her she would soon.

I couldnt believe that I was that mom, i was the one approaching someone else. This seems like a giant step for me. I remember sitting in the kitchen on the floor just balling when it was so brand new. Im a mom but I am also part of a different community now too. Im a plagio mommy and thats fine and Im proud to be educated about it now. Sorry for my absence again. I am no longer interning due to a few reasons which are personal but for this semester I am off.

Nolan is working very hard in PT and propping himself up and bearing weight on his arms which is a great step towards sitting up alone. We can let go for a little bit but he still needs us. His current fave new food is bananas. He absolutely does not like sweet potatoes and applesauce, is take it or leave it. The pt also suggested certain types of toys that assist with his torticollis. They are so hard to find because most of them came out about 5 or 6 years ago so they are not made any longer. Ebay here i come i guess!

Tummy sleeper

We officially have a tummy sleeper. He has been rolling onto his stomach at night which is fine now, the doctor said its appropriate to let him do so. Well now we lay him on his back to start and about 10-15 minutes later hes all twisted up from trying to get on his belly without squashing his arms. So we pull his arms out and let him lay. Now me being a paranoid mama i worry about him being on his belly but i have to realize that everyone said it was fine if he ended up on his belly so i need to relax.

Also he has been smashing his right eye so the fluid in his eye goes up into his lid and it looks swollen. The doctor checked it and he said its fine as long as there is no redness or goop. Gross i know. I just wish it wouldnt do that but he sleeps best on his belly like his mama. Well im exhausted and have a house to clean and PT to get up for in the morning.

My apologies

I have been so ill and back and forth with Nolan and starting my internship that I just slipped.
Nolan had an adjustment and now is down to 4 mm!!!!! We could not be any prouder!!! He lost 10 mm is just 6.5 weeks!! We are so proud of him. He will continue with the helmet for the next month and be reevaluated again. He needs to be sitting unassisted in order to remove the helmet. We are working with his physical therapist in order to do this.

He is a month behind in motor skills but the physical therapist said not to worry with therapy he will be right back where he needs to be. His head looks amazing and i just adore seeing it every night at bath time.

We also went to the pediatric eye surgeon and he does not need eye surgery. I knew the dr was wrong because she was brand new and seen Nolan when he was exhausted so of course his eye was going to droop. Anyways he has a stigmatism in each eye. He is farsighted in his left eye just like his mama. he does not need glasses but she said at some point in school he may. They will check on him once a year until he is in school to make sure his vision remains the same. Im glad he doesnt need glasses because honestly I cannot handle it. I feel like the smallest thing could break me right now. I have so much going on and feel completely overwhelmed. Now i know glasses are not the end of the world and I wear some part time, however when you already do at home therapy, take him to therapy, and deal with his helmet plus intern and do homework and take care of a house! Phew!!! No wonder im so tired and sick lately. I hope to get back to normal with this. I will probably start to update during the day because i intern in the evenings. sorry again for the delay!

Just pics!!!

Nolan with my grandfather---They share the same middle name!!

First rice cereal pics

I love the before shot!! He looks so nervous! He really hated the spoon for like 6 days and now he will open his mouth. We started rice cereal two weeks ago and he just had his first veggie, sweet potatoes last night and hated them. He pursed his lips shut!!

We're back!!!

I have actually missed blogging. So much has happened and so much is going to happen soon. Nolan went back to avidly rolling over in the last two days. He also has been saying mama since we left. He started around two weeks ago but he only said it a few times and now he says it non stop! I love it, nick is a little jealous but thats okay he spends all day with me. He did well on the trip. Everyone loved him. I had very little questions about the helmet which was good and bad. I think some were afraid and others just asked and i educated them.

Sleeping was very difficult for Nolan. One of the agreements we made with my mother in law to stay at her house was that the house would have to be kept cool. Most of the time she was fine with it but a few times it was raging hot in the room we stayed in. Several nights he woke up pouring sweat and just crying. So we had to take the helmet off to let him cool off as instructed by our Orthotist. He was so tired on the way home he practically slept the whole way!!

I have some pictures we took of him at his first trip to the zoo and with some of our relatives that I will post later if i get some free time. I start interning this evening so my time becomes even less. It is the first time i will leave nolan for a longer period of time. He will be with daddy and fine but im so sad :( especially now that he calls my name a lot.

We had a physical therapy appt today and it was good and bad news. He is improving but only slightly. He did not want to show off his rolling at all. So now we will go 2-3 times a week for the therapist to work with him as well as home therapy with him still. He will do that for a month and then be reevaluated. She said he will probably go for update appts until he is a year old. They want to make sure he walks on time and etc. He is currently 6 months old but his developmenet is a month behind due to the helmet. That was the part that made me the most sad but i know with hard work we can do it. Since I am currently having a situation with my university and internship, if it doesnt work out it may be a blessing in disguise because my child needs much more attention and he will always come first. I feel a bit defeated like I have not done my job but i know and my husband knows how hard i work to maintain his therapy at home and i barely get a chance to relax so I have to keep reminding myself I am doing the most that i can.

I promise to update more later but Nolan is waiting for me to come play. Im glad to be back.

6 month update

Today was little mans checkup. We had a different doctor and I definately did not care for her at all. She was thourough though. Nolan is only 14 lbs 11 oz. That puts him in the 9th percentile for weight. This has been a battle for us. Every time we meet with the doctor they are concerned. He went up from his last check up though he was only in the 7th percentile. His head circumfrance is in the 85th percentile!!! WOAHHHH!!! Thanks Daddy for my large head :) His length we are unsure of the percentil because the nurse measured him wrong but he was 25 inches long. He was born at 19 inches. The doctor suggested we see another specialist for something else. I wont get into what type because I think it will just result in just an appointment.

I am very upset that this doctor is making something small so large. I kno wit is better to be safe then sorry but our regular doctor has never expressed a concern. Why does everything happen at once!!!!!!!!!!!!!! A mommy can only handle so much. I bear alot of the guilt because I take care of him all day long so if something happens i feel like it is my fault. I know that it isnt but that is how i feel. He does have 2 ear infections so along with all the shots he had today we are on some antibiotics. I just hope it helps him get back to himself. Maybe it will help his sleeping issues!!! I just knew the way he was messing with his ears that there was a reason. We basically have one more day before we leave and i really hope i dont forget anything. There is so much to take!!! Im off to rest before his last late night feeding so sorry its late. We had no internet until this evening!

Adjustment

So we had to go for our very first unexpected adjustment. You can get localized spots that can cause problems when wearing the helmet. Nolan had on the back of his neck and I wanted to make sure we took care of it before we leave this weekend. The orthotic found a few others that were not too bad but he trimmed then since I told him we would be out of state.

I got to just carry him in without the carseat which was nice and so much lighter. The carseat weighs like 30 lbs without him in it. Then add another 14-15 lbs!!! Tomorrow we have his 6 month checkup and I am excited to see his stats. This is not his usual Pedi so it will be different for sure. I just want to see how much she knows about helmets. We are keeping our regular Pediatrician but with back to school he couldnt fit us in so we get to see her instead.

Just in case i forget to point this out, since I will be out of state for a week I will not be updating until I return. We are not taking our laptop because we have internet issues everytime we are my MIL house. She has a computer but it is way slow and our schedule is so jam packed. I am going to try to jot down some notes every day so i can remember them when we return. I will post a week long update when we come back. We leave this saturday and will come back a week later.

Is there a target on our carseat?

So yesterday and today I had very interesting encounters. Just as I was finally feeling good about the helmet, someone has to come and knock me down a few notches. We were waiting at the doctors office for an appointment I had to make urgently. Anyways I had to see an unfamiliar doctor and had to see across the room. Minutes later a mom and her three young daughters came and sat near us. Of course the oldest daughter came up and asked What his helmet was for. I just said we are making his head round.

The mom over heard me and starting asking how old he was and then came the sentence "Well that is just horrible to have him in that helmet during this heat". Ughhhhh!!! Just then they were called back. The only response I gave her was that the helmet would be off before we knew it.

Totally unrelated to his helmet, we were at my internship site today filling out paperwork and getting my badge when someone who worked there stepped into the office while i was meeting with the director and she commented how Nolan was wearing shoes and he should be barefoot because shoes are pointless. Im sorry that I put shoes on him instead of letting it go. I mean who does this woman think she is the shoe police?? I am aware he doesnt walk or crawl but he can wear shoes so that way he is use to wearing something on his feet when the time comes lady!! Anyways is there a target on us where everyone had to just be rude these past two days? I mean come on people I want to have faith in humanity!!

Explanation

Well we are making more arrangements for our big trip coming up and I find it funny that i have to pre warn my parents to warn others. I just do not want to explain it over and over again. I have no problem explaining what Plagio is and educating others but I really do not need to go back through the very emotional experience of how it came about. I know I will get frustrated and upset.

As I sit here writing a list for packing just for nolan, it is insane how long it is. There is so much stuff to take. Luckily my mother in law is trying to get a few necessities there so we do not need to bring as much so that will help us. We are trying to squeeze in a few fun activities but honestly our schedule is so jammed pack it is ridiculous, it feels more like work then vacation.

He is still grabbing at his helmet so I dont know if this will just be his thing that he does or something else. We go for his 6 month checkup this thursday so then I will know if his ear is okay or not. He also now puts anything you hand him in his mouth!! he grabbed our cell phones yesterday and then a card that he got and tries to shove it in his mouth before Mommy and Daddy see it. Tricky baby boy :)

Another day

Just another regular day. I think we actually wore Nolan out running errands. I felt bad we had to keep waking him to leave the house. We had dinner tonight at a local place and there was a family of three across from us in another booth. It was the two parents and their adult daughter. The mother and daughter kept staring I just about said something out loud. Now I am not one to start anything or speak up but when it comes to my son I for sure will. I do not let others walk all over me. Since my husband was with me he was good at taking my attention off of them. Sometimes i just want to say what are you looking at?? GEES. For those moms who are new to this trust me you will have those days, but most of the time i could care less. I dont know them and vice versa. Anyways Im off to rest until he wakes up for his last feeding tonight. Tomorrow is a new day right!!

Sleeping

I don't know what it is but we just can't get back to normal. I guess i have taken advantage of the fact that Nolan has slept through the night since he was 6 weeks but I am not use to these 2 am or 5 am calls. When the target parents stopped me, they mentioned sleeping problems but I should have asked when will they stop. I cannot believe I am back to napping when he takes his first nap. Although sometimes I just cant because I have so much to do. Our parents have been prepped to tell our families about the helmet if they see us so I am relieved. I just hope i dont have to tell the same story a million times. There isnt very much to post today because nothing has really changed and he just did not sleep well last night or during his first nap today. Im praying the sleep gets better! Have a great weekend.

Today was refreshing

So we were running errands today and I went in to target to pick up a few things. While i was placing Nolan's carseat in the cart I seen a mom come in with her 3 children. Two were in a stroller and one was by her side. I glanced over and seen a white helmet. I should have went over but instead we both just glanced at each other and did that "hello" nod. As i walked past the food court/starbucks i heard someone say "oh look he has a helmet tooo awww". Now mind you i was walking and heard it come from behind and then i barely heard "should we...i dunno".

Then i heard them get up and start to walk behind me and i thought maybe i should slow down so they can catch up. I just had a feeling they were going to come talk to us and I welcomed it. The husband and wife came up and said their son wore one and we talked about sleeping issues and the husband said hello nolan and he started crying lol. I have to laugh because he does this new stranger thing. He cries when a stranger says hi or anything. Anyways, they made me feel so comfortable and for once i found somebody in person who felt those same things and went through everything we are going through. So i shared his progress and they just couldnt believe it and said it was wonderful. The mom said its the best thing you will ever do you wont regret it. I truly don't. I was so excited after I had to call Nick and tell him I met some people in "real life" who talked to me. Its the little things in life right. He has been his usual self today. He actually pushed on the helmet and arches his back and wiggles so you cannot put the helmet on but mommy and daddy are smarter then that.

Celebrate!!!

We had one of the best appointments so far. I was so enouraged after today. Our orthotic said he set records at their office and is definately an over achiever. Nolan started at 12 mm then went to 14 mm (for those who dont understand he got worse) the higher the number the worse it is. So he dropped from a 14 to a 9mm. he dropped 5 mm's in three weeks!!!!!!!!!! Yayyyy Nolan!!! I am such a proud momma. We will keep up with the helmet, they prefer you to be under 6mm. They also would like him to be sitting unassisted and then the helmet can be removed. So it still looks like october but who knows it could be sooner. We go back in a month for another measurement. I am so excited for him!!!

Sorry and thank you!

I am so sorry i missed posting yesterday. It was just one of those days. Nolan is having a hard time with naps and now sleeping during the night is interuppted, plus trying to figure out if he has an ear infection. I think im going to just have to take him to the doctor. Next week is his six month checkup but I dont know if i should wait that long.

Today is a big day in our household. Nolan will be remeasured for the first time ever. I really hope to see an improvement from the 14mm. When we first were diagnosed it was 12 mm but during the 2 week wait to get the helmet it had gotten worse and went to 14mm. So we definately made the right decision. Its a hard decision to make but really it isn't. We all want what is best for our children so we just do it. In the end it really is harder on us then them. Sure, it is a huge adjustment and it is really hard to avoid the looks and glances but you get over that and somedays you just have a bad day.

Thank you for the people who "came out". Elizabeth i knew you'd be one. Michelle & Caro, I know your there too and i appreciate all the love and support. For those girls who came upon my blog I am so glad it is there for you. I felt like I had no one through this process but I had friends pull through for me that had no experience but offered a shoulder or ear. I just decided i want to be a mom who blogs and will post her story to help others. The support groups are great but once you get so many emails it is just easier to post updates in one place. I will post tonight about his progress with the helmet after our appointment.

Anybody Out there??

I know i have a few readers *wink wink, i see you*. I just wonder if this really reaches anybody. Can anyone relate or am I just mindlessly jabbering on the internet to myself. I really wanted this blog to help make a difference or provide some awareness to others who maybe did not know what Plagio is. I know that I never knew what it was and I am someone who heavily researches everything. When we were TTC I pretty much knew everything that could happen or would happen with Nolan. This was one of the few things I was not warned of. Anyways, not much is going on with us today. He is napping terribly again today. It is another one of those clingy days. Im just praying i have an ounce left to make it throught today. I am not feeling well and the stress is getting the best of me. Well im off to start his therapy routine again. Enjoy this monday!

Bad Day

Today was a bad day. It is hard to express in detail what occurred, but i would call it a mini-breakdown of sorts. I have been bottling up all of my emotions and just flat out ignoring my own health. I went to the doctor recently and have a follow up this coming week and now I have a new problem. I hope it isnt anything serious but I am pretty sure its going to require a MRI or CAT scan. I told myself that everything is fine and just get over this whole helmet situation and just deal with it but even though I slap a smile on my face, everything isn't alright.

I try to be really positive about it and pick the next thing to look forward to with Nolan and then I focus on that. Well in the midst of that everything else is getting shoved down and is stressing me out to the max. I am getting physically ill from the stress and it is causing my body harm. The exercises, therapy, the worrying are just a few examples of day to day life. I do not complain to anyone because I am sure they do not want to hear it but for once i have a legitimate situation. I feel the need to reach out to the support group just to vent and it helps me to hear other stories so I do not feel like the only mom in the world to ever do this. I feel blessed to stay at home with my son but it is also very taxing during this time. There are so many things to worry about and of course he is my number one priority but I just need a little more help when my hubby is home. Don't get me wrong he will help when I ask him too but I almost feel like I need to tell him that in the evenings i need him to do all the stretches and exercises just to give me a break. I feel like Nolan see's me as the bad guy because I am the one who is constantly doing all these things he doesn't want to do.

He is still messing with his ear today. He did not do it when the helmet was off. I noticed he is pushing the side that is in front of his ear so we adjusted it to see if it helps but before I put him to bed he was grabbing it again. I think the dry skin is back so I put some lotion on it. The helmet seems to dry it out like no other. Anyways that is all for today! Talk to you tomorrow!

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!!!!

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 blingyourband.com. 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!!!**

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!

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.

Exhausted

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.

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!!

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.

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.

Screaming

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??

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!!

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.

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.

Journaling

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.