Sunday, August 29, 2010

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.

Saturday, August 28, 2010

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!

Tuesday, August 24, 2010

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!!


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.

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!

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.

Tuesday, August 10, 2010

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!!

Monday, August 9, 2010

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 :)

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.

Wednesday, August 4, 2010

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.

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!