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.
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Wednesday, October 6, 2010
Friday, September 17, 2010
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.
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!!!
Monday, September 13, 2010
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.
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.
Monday, August 23, 2010
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.
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.
Thursday, August 12, 2010
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!
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!
Wednesday, August 11, 2010
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.
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.
Saturday, August 7, 2010
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!!
Friday, August 6, 2010
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.
Thursday, August 5, 2010
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.
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.
Wednesday, August 4, 2010
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.
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.
Monday, August 2, 2010
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!
Sunday, August 1, 2010
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!
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!
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.
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.
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!!
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!!
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!!
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.
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.
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.
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.
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