This has not gone the way we had hoped and expected. Avery is not getting acclimated to his helmet as most little ones who have to wear one do. So it's a slow process. Apparently this is very rare. And somewhat frustrating. When all you want to do is be able to make your baby "better".  Add this to the overwhelming sadness I'm feeling today. For not knowing how long it is that he will take to get "used" to it. To worrying about if he is going to be uncomfortable during sleep. And sad for all of the soft and sweet baby head snuggles I will be missing out on. But then I take a step back, breath, and think about it all. How blessed I truly am to have three beautiful babies. And how, it could be worse. So, I will suck it up. Deal with it. Cherish that one hour I will have. Find other ways to closely snuggle him. And stick with it, until he is fully acclimated.

 The orthodist got us in last week fast, when we called her with concerns. The band was leaving marks on Avery's head and he was hysterical. She had us keep it off of him. She did some adjustments, and he has been doing alot better. We have been able to have him in it, for a total of three hours so far. It may not sound like much, but it's progress.

 I was lucky enough to find an amazing support group, full of a bunch of awesome momma's whose little ones have been, or are going through the same thing as Avery. It's a relief to be able to have people to go to to ask my questions, share my concerns, and everything else.


Here's the shape of little man's head BEFORE. I don't have the top view yet,but will share when I do.

 

 

Even now, there has been a big improvment from when he was first diagnosed, to now. WITHOUT the helmet.

An OFFICAL diagnosis.

 Avery was originally thought to have Craniosynostosis.  This was when he was seven weeks old. Talk about a HUGE relief once the neurosurgeon told us that this was NOT the case. I cried with joy that my sweet little baby would NOT need to undergo such a serious and scary surgery. He is perfect. But I couldn't shake the feeling that I KNEW something wasnt exactly as it "should be." So, back to the pedi for some more measurments and physical exam. And another, new diagnosis. Plagiocephaly. I had heard of Craniosynostosis. She reffered us to Hanger Clinic Orthodists. Where his Ortho, Kathy officially diagnosed him with Brachyephaly. Brachyephaly is where The head flattens uniformly, causing a wider and shorter shape. She decided that is would be beneficial if Avery were to get a cranial Band. (helmet) Hangers website describes it in this way:
 The cranial band applies steady, even pressure over the areas of the skull that are most prominent. Opposite of this, the band has open areas where the flattened section of the skull can grow. The design of the orthosis is to direct the natural growth of the skull towards a more symmetrical and/or proportional shape.

Before we got the helmet. I was thinking "Bring it on, We got this with no problem". This changed the moment we walked into the office yesterday to pick it up. I felt queasy. And in the room, I started to cry the minute she brought it out. I felt stupid. As, I know it can be so so much worse. I sucked up the tears and started asking my questions. How long do you expect him to wear it for? Something she couldnt answer. Whats the difference between the doc band, the star band, and yours? Well, she basically told me that this is just "their brand." That they have seen nothing but amazing results with this. That they handle every aspect of it. From his care and appointments, to the scans, to the making the helmet. It's all the same specially trained company.

 So, she shows us how to put the helmet on him. At first, he was just annoyed by it. But then he began to hate it. He screamed and cried like I have NEVER seen him do. And I just sat there dumbfounded feeling completely helpless and I tried to soothe him. He did this for both hours he wore his helmet yesterday. This morning we made it to an hour and a half with no crying the first time he wore it! He currently has it on for the second time today, and it will be on for two hours total and no crying! I am SO proud of him.

What I'm going to miss the most is the close snuggles with his head into my chest or my neck. And smelling the sweet smell of his baby shampoo in his hair. I know more than ever I am going to cherish the one hour a day that he can have it off and snuggle him like no tomorrow. His daddy's exact words were "I always give you crap about coddling the kids too much. But go ahead and coddle him as much as you want right now." AND, you can BET that I most certainly will!


This is his "wearing schedule"

Day one. On one hour. off one hour. Reapply othosis atleast three times a day. Not to be worn during naps and night time.

Day two. On two hours, off one hour.  Reapply othosis atleast three times a day. Not to be worn during naps and night time

Day three. On four hours, off one hour. Reapply othosis atleast twice a day. Wear during naps. Not to be worn during night time.

Day four One for 6 hours off for one hour. Reapply othosis atleast twice a day. Wear during naps. Not to be worn during night time.

Day five. worn 6-8 hours, off for one hour. Reapply othosis atleast twice a day. Wear during naps. Not to be worn during night time.

Day six. Worn for 8 hours off for one hour. 8 hours a day/8 hours a night.

Day seven. On for 23 hours. and off for one hour.

Later, I will post pictures of the scanning and little man with his new gear. Gotta admitt, he does look like a little bad ass.

Plagiocephaly..

The last six weeks have seemed to drag on and on. But finally, we had Avery's second appointment with the ortho today. Going over Avery's history. Looking at his head, which seems to have a whole new shape to it these days. And doing more measurements. Firstly it was determined, Avery does indeed need to have a helmet. I've been dreading hearing those words. (more of that later on) However, with the previous diagnosis from the radiologist,and then a completely different one from the neuro the ortho decided to wait. WAIT?! More waiting? It seems as if this is all we have done. But she decided to wait, because she would like Avery to have another ct done. Being that his first was at such a young age,and we had conflicting diagnosis and the shape his head now is. She wants to make sure there is NO fusing before she puts him in a helmet. Okay, fine by us. Better safe than sorry. So then we needed to call his pedi and get that set up and the ball rolling. Earliest they can get us in for something like this? August 14th. Then another day or two on top of that to have the ct set up. Over all, his head circumfrence seems to have had a decent amount of growth. Spots induvidually? Barely at all. So, I guess we just wait some more right? Well let me just say, I'm extremely impatient. I just want definiate answers on what is going on with my sons head/skull so we can move to the next step. Work on fixing it. It's frustrating. Knowing something needs to be done, but not exactly what yet. I do not want Avery to have a helmet. If it has to be done, then yes I will obviously do what is best for him. But I wish he didn't need it. It might sound horrible of me..but I don't care what people think or say about me. But I know that it will get him stares, and people saying god knows what. And that's one thing that will bother me. But most importantly, I'm worried on how he will handle it. Will it bother him? Will he have difficulties sleeping? Will it delay him with things such as sitting up and crawling? I know it could be worse, and I thank god it isnt. But, I think any parent wants to protect their child from something being wrong no matter how big or small it may be. And this is just one of those things that I myself cant fix or change.

  A side view of my sweet boys head<3

Finally, an update.

I've been meaning to update this. But,  I've really been slacking.

I went to see Avery's pediatrician to talk about a second opinion and what she thought about Avery's appointment with the neurosurgeon. First, she measured his head because her office,and his had measurement that were wayyyy off. Hers had said his head circumference was only in the 15-25th percentile. The nuero had that it was the 50th. After measuring his head, she told me that he was right. That his head had already grown, and was in the 50th percentile. She ensured me she has worked with this doctor before and would never second guess him,not even with her own children. She suggested that since they want to bring him in to watch the back of his head that we will also check his head circumference monthly to make sure it continues to grow. The back of his head is flat,and sunken in in one spot.  This ISN'T from him laying on it. We've made sure of that by making sure that most of the time he is off of the back of his head, weither it be him being held, him being in his Bumbo seat, or me carrying him in his moby wrap. He goes in today and they will decide if he needs to be sent back to the specialist or if he needs to be fitted for a helmet. Or maybe to just continue to watch him. And then we take him on the 22nd to see the cardiologist again. He's going to do another ultrasound and ekg to check for the aortic insufficiency and make sure the palpitations haven't come back.

He's getting so big. 14 lbs 14 oz the last he was weighed. He loves to just sit here and talk to me and laugh. He absolutely adores his sisters and his face,as well as theirs lights up everytime they see each other. No matter what, it's all worth it. We were so blessed to have him come into our lives even with everything that's happened.

Second opinion?

So after Avery and I driving three hours, our reservations being messed up, so we thought (Chris booking them under my maiden name lol.) Getting it all straightened out. Avery and I settled down for the night. I hardly slept at all,and was already awake when the alarm on my phone went off. So we got around. Waited for his daddy to meet us. Got the road name from the man at the front desk that had the parking garage on it. To go there, realize that not only was it wrong..but that we forgot something. Great.  Turn around. Make sure we have everything, including the correct address. Finally get there..a half an hour late. I'm not sure how long we sat in the waiting room for,but I'm sure it seemed longer than it really was. I'm guessing we were in the room for maybe fifteen minutes. Saw the doctor for about five. And he told us exactly what I was hoping to hear, there's No concern for surgery. Thank God. He told me that his head was in the 50th percentile. And that he will just have our pedi keep an eye on head circumference. Such a relief.

After getting home and talking to my mother and grandmother, they reminded me of something.  At his last check up,just a week prior, they said his head was only in the 15-25th percentile. Would it really grow that fast in a week? They suggested getting a second opinion. And now, I'm back at not really knowing what to do. I don't want to not get a second opinion and have the first be wrong. And really, I would rather know for sure, even if others  consider it a waste of time and effort. So, I called our doctors office and am expecting a call from Dr leanord around three today. Were going to go over everything and discuss a second opinion. 

I'm hoping to hear the same thing. But after being in the position. Having that fear, my heart goes out to all of the families who are in those shoes. All of those parents stories I have read about them handing their babies to the surgical team and just waiting. I've talked to some amazing and strong cranio mother's, who are so inspiring. And am so thankful for those who have made it their mission to reach out to other mother's and help them. There are a few organizations that do things such as make care kits for the kids who need this surgery. I will be posting the websites on my blog for anyone who is interested in helping them out.

Almost time.

Do you ever just wish you could hide under the blankets,and it would make all the bad stuff go away?  Or even freeze time?  Almost like when you're little, and it made the monsters go away. Well, that's how I feel right now. As were sitting here ready and waiting until it's time to head to the hospital, I'm going over everything I want to ask the neurosurgeon.  I just want it all to go away. Being a mother, that's all we ever want is to protect our children. To make sure nothing bad happens to them. Some things are out of our control. So I remind myself, to be strong for Avery. That no matter what this doctor tells us,I have a very strong and amazing boy who will be okay. He's got a stubborn daddy and mommy. He had to of inherited some of that. Non the less, I would gladly take anything that could possibly hurt him away,and take it on myself.

There isn't too much longer and we leave the hotel and head over. I can't help but hope that the pedi and the radiologist are wrong. My grandmother thinks it's wishful hoping. I guess we will see.

So close.

Only two more days until we head to Rochester. And three more until the morning of Avery's appointment. Now, I'm starting to get really anxious and nervous. I cannot wait to get it done with. We spent the last two nights an hour away from home.  Relaxing and spending time with my parents. This has made all three of the kids happy. And I think it's something I really needed.

Tomorrow will be a hectic day for us.  Avery's big sisters Brookelyn and kayleigh will be coming back Monday to stay with their nonnie and poppa while we are in Rochester. (I get extreme separation anxiety,but know they are in good hands) so we will hopefully be going to my nieces birthday party and then be spending the afternoon making sure I have everything they need packed,and everything Avery and I need packed. I have no idea what to expect for this appointment.  I don't know if the neurosurgeon will want more scans done, or what. I just can't wait to get this done so we know what's next for our sweet baby boy.