Graduation Day!

Today Maycie graduated from physical therapy! She has been so close to graduating for the last 3 months or so. But then she would start to tilt or she wasn't doing a motor skill she should be and so we would make another appointment. But today there was no tilt. And everything they had her do today she did almost perfectly! Every time she would pull herself up to something or bend down to get a toy her therapist would say, "look at her! Look at how wonderful she looks!"
We have come so far in the last 8 months. In some ways it is hard to believe it has been that long. In others it feels like an eternity! I remember our very first appointment and our therapist looking at Maycie and the shock in her voice when she said what a tilt we had going on! And then when I told her it was actually an improvement and that it had been worse, wow! I look back at the pictures and it is the same kind of thing.
Today I talked with our therapist about how glad I am that we did this. When I came home from Maycie's 4 month well visit and had to tell people we were going to have to do therapy I couldn't say it without bursting into tears. I remember how the thought of a helmet at that point made me sick to my stomach. And what in the world could they do with a baby for "physical therapy" for an hour?! And at our first therapy appointment I remember our therapist going over the steps and mentioning a helmet and thinking "please, please, please don't let her have to do a helmet!" I remember an overload of information! The x-ray's of her neck and head just to be sure. The first visit with the Plastic Surgeon. Getting the helmet process started. By this point praying the insurance would cover the helmet. Funny how I had come full circle from, please don't let her have to have one to please let her get it. The awful absess on the back of her head and then a scan to make sure we didn't need to do surgery. By the time we got the second helmet I was so grateful that was all we needed to do that it really seamed like no big deal! And helping me through it all was our physical therapist! Our pediatrician is amazing and so is our Plastic Surgeon. But when you start out seeing someone every week and end up with only once a month they are more like a friend.
Our therapist kept saying today that it was all me and my hard work that got Maycie where she is now. I have to say a great big NO to that! We had a wonderful team that made sure we covered every base and kept me doing what I needed to do. We had an amazing support system of friends and family that never quit praying for us. Who, when they would hold her would ask me if she was looking/tilting the right way! Who helped me realize and understand this was not my fault. And most of all there was Maycie! I have to say (again!) she really has been a trooper through all of this! She has worked hard and it shows! The last big piece of the puzzle was my Father in Heaven. His peace was with me continually and I know the reason she did so well with everything was because He was with her, helping her with this.
I know one thing that helped me work through this was talking about it. Not being afraid to say this is what we are going through and then finding a way to try and help other people who might be going through the same thing. Starting this helmet blog was one of the best things I did! I think it taught me a life lesson to not try and hide my problems away and pretend they aren't there but to face them head on and then mow them over! You never know who you are going to meet that can help you (or that you may be able to help) if you just let it out there!
Thank You again for all of your prayers, love, support, I could go on all day! I have felt it lifting me continually! We could not have done this without you all! I hope this blog has been able to find someone who has needed it. I hope it has helped someone, anyone in some way! Again, if there is something you would like to add make a comment and share with us! We would love to hear!

A Year Different From Any Other!

Maycie had her 1st Birthday last Saturday. Having a helmet changes things, that is for sure! My dad and I were talking the other day and I wondered where the year had gone. He said it went into a helmet. And that is true! So here are some of our helmet memories to celebrate Maycie's first year!

Portraits!

One thing I would highly recommend is having some professional pictures done! We had some family pictures taken and had her do some pictures of Maycie in her helmet. I am so glad that we did! They are so wonderful and I am so glad that we will have these forever.

You don't have to spend alot of money on them. Even some place like Target or Wal-mart, but something to make it special. You want them to know about this part of their life. And at least for me, embracing it has made it so much easier!

Ours were done by a friend and she really is amazing and does a wonderful job with all kinds of portraits! If you are interested in seeing some more of her work you can find her at: http://portraitsbyemily.blogspot.com/ Thanks again for everything Emily!

There is Life After The Helmet!

Maycie had her 6 week appointment with the plastic surgeon today! It was a good appointment! She no longer need to wear it. It isn't perfect (but who has a perfect head?!) but he feels any more changing that needs to take place will happen naturally!

I came home and was met by my other kids and when they saw her without the helmet they first asked to make sure and then let out quite the yell! It was so cute! My oldest son is just getting ready to play football so we joked that we were trading Maycie's busy helmet season for Jaxon's busy helmet season! So we put the helmet back on and took our last pictures in the helmet! I also took some after pictures for myself. I thought it might be kind of fun to see some before and after shots. Another reminder that what we have done and been through is totally worth it! I can't imagine where we would be if we had decided not to do this.

This is Maycie at our first appointment at Fit Well.

She was about 5 months old.

This is Maycie now! After 5 months and 2 helmets what a difference!

The first helmet put too much pressure on the back of her head. (I think her head shape changed between when they did the mold and when we got the helmet so then it put too much pressure and caused an infection. But that is just my thinking!) This is a picture at it's worst! This is why we needed a 2nd helmet. They allowed room for the bump on the back of her head and then put the padding in so the pressure still had some give to it!

This is the back of her head now! I should have taken it from the side! But you can't even tell anymore! The plastic surgeon was telling the intern (I think it was an intern!) with him today about the bump on the back of her head because they wondered why we were so excited over the back of her head!

Everything looks so much better it is almost hard for me to believe! It has been a long road. I will not deny that. This has been the last 6 months of my life and almost 2/3 of hers! We are still doing physical therapy. I am hoping we will see a drastic improvement there now that the helmet is off. I will go and do until we are done. I don't want to give up and then have her regress. Besides that therapy hasn't been bad! They are more like a friend then anything else!

Thank you to everyone for visiting and your comments! I think I am going to add a new gadget so we can "converse" a little easier! If anyone else has wisdom ideas for decorating the helmets anything else they would like to share I would be glad to do a post with your insights. Please e-mail them to me at the address on the right! Also is there anything specific that I should be blogging about? Keep the comments coming! I need your help to know if this blog is helping! Thank you!

Make it Yours!

We have had so many comments on Maycie's helmet! I knew one of the things that would be hard for me with the helmet was no bows and cute stuff. I talked to a friend who makes bows to help me figure out how to put bows on the helmet. She was amazing and came up with Velcro! Don't you just love Velcro! We put the soft side on the bows so they wouldn't stick together. That way you can have a bow for every outfit just like "normal!" The other thing we did was vinyl flowers! We have gotten lot's of great comments about those too! I can't take credit for those either, my sister totally took care of them! But what I learned with the flowers is that you can do anything with vinyl! And it holds up really well to the heat they have to use to adjust the helmets. We were in for a check today and one of the flowers was in the way so he needed to take it off. He was way surprised in the trouble he had getting it off! I have talked with people who for boys have made them into "football helmets" for their favorite team! So the vinyl is good for more then just being able to do what you want it will really stand up to what you have to put the helmets through too! So I say make it yours! I would have had a bow in Maycie's hair everyday so I found a way to put a bow on her helmet! When I told someone we were going to put the flowers on they told me not to. They said it would draw attention to the helmet. I figure, it's a helmet, people are going to notice! I might as well make it cute! And for the outfits I didn't have a bow for it was still cute! And I think doing fun things makes it easier for people to talk to you about it. And for me I would rather people ask me about it then just look at my baby like there is something wrong with her. I would love to hear all the fun things you have thought of to make your baby's helmet personalized and unique!

THANK YOU!

To Inquiring Mind,
I would like to thank you for your comment! It is so good to hear from someone who is done and can say that this is but a moment and it will seem so short in the big picture of it all. I would like to know how you found us! I hope this means that this is getting out there! If you know of others in your same situation please let them know about it also. I really feel you can help us! So again, thank you, thank you, thank you. I just can't say it enough!

To Chelsea,
I hope all is going well with you and that you are adjusting to life with the helmet. Keep it up! And my advice to you is the same as Inquiring Mind's was to me, don't be so hard on your self! Find the humor in all of this. It is those things that will help get you through.

I would love to hear from both of you. Please e-mail me. It would be really great to be able to "talk" with you!

Thank you again for helping to lighten my load a little!

6 More Weeks

We went to the Plastic Surgeon's last week and he said we should be all done in 6 weeks! Now don't get me wrong, I am so excited! But at the same time I have to admit I am ready to be done with all of this. I am ready to kiss her head when ever I want without kissing a helmet. I am ready to snuggle her without being afraid of getting clunked in the head! Again, I am not regretting our decision to do the helmet. I know this is for the best, and I know 6 weeks really isn't all that long. I just have my moments! I try and keep things very positive on our family blog. And I know I should probably do the same for all of you, but I want you to know we ALL have our moments! That is why I am doing this. It is important for me to know that other people are going through the same thing that I am. I guess I can only assume that you all feel the same. Part of what I want this blog to be is a place for us to share with each other. I found this quote that I hope says it all:
Author Anna Quindlen says, "The great motherhood friendships are the ones in which two women can admit [how difficult mothering is] quietly to each other, over cups of [herbal] tea at a table sticky with spilled apple juice and littered with markers without tops" (Loud and Clear, 30).
What we are doing for our babies is difficult. But by being there for each other I am hoping we can lift the load a little. So we have 6 more weeks (actually 5, it has been a week since we went to the Plastic Surgeons, not that I am counting down or anything!) but this is something that has changed me for the rest of my life. There will be life after the helmet, and this too shall pass!

How Far We Have Come!

This is our Maycie at her first appointment with Fit Well. This is the end of February beginning of March. What a good mom am I that I don't have an exact date! Sorry!

This is her 6 weeks ago the day before we got the second helmet. She was still tilting her head and you can still see the flat kind of spot over her left eye. Better then when we started but not there yet!

This is Maycie today. Her head tilt is pretty much gone and her head shape is so much better! We go to the Plastic Surgeons office tomorrow. I'm sure we aren't done, but look how far we have come! I look at these pictures and know that we did the right thing!

Insurance Company

For our insurance company there were a few requirements that we had to meet. When I called Fit Well to make our appointment they were very helpful and told me everything that I would need to provide. However they are required to tell you that this first appointment is to take pictures and measurements to send to the insurance company to see if they will cover the helmet. They told me that it usually takes about 10 days. We called our insurance company right after we went to Fit Well to make sure there was nothing we could do to help the process and to check our coverage. They told us that there was nothing for us to do at that time but they also didn't want to talk about our coverage then either. We really had to press and use the word "if" alot! "If this gets approved" that kind of thing. This is something I would recommend doing because the average coverage is an 80/20 split but it isn't always. You will want to know what you have ahead of you financially.
Our insurance also required a letter from us as her parents. They wanted a 3 month history of what we had been doing to correct the problem. Considering she wasn't much older then 4 months that sent me for a loop! But again Fit Well, our Physical Therapist, Pediatrician, Plastic Surgeon (our team!) were all very helpful. They told me that anything we had been doing should be put into the letter. Things like putting the mobile on the other side of her crib to encourage her to turn her head. We bought her a special tummy time mat that encouraged the lifting of her head even more then normal tummy time. I also wrote it in a very positive tone with the assumption they were going to approve the helmet. If you would like to read our letter I would be happy to e-mail you a copy.
In the end we had to call the insurance company again. Fit Well called the insurance company after 2 weeks and were basically told we will get to it when we get to it. They told me it might help if we called. I called and got told basically the same thing. My husband then called, he is really good at getting results! He asked to speak with the nurse in charge of the approval. My advice is to do this. We had approval by the next day. They care more if they know you care!
I had told our Physical Therapist things were taking longer then we had hoped. She offered to write a letter if we needed and mentioned getting one from our Plastic Surgeon as well. We ended up not needing these but I am sure who ever you are working with would be glad to do the same for you if you need it.

Our Story

My name is Brook Collins. I am a stay at home mom of 5 kids. My youngest child, Maycie, is 8 months old and is currently going through P.A.P. Orthosis Cranial Remolding Therapy. From the time she was born she would tip her head to the same side and then turn her head to look up. It looked like the most uncomfortable position in the world to me, but she wouldn't move didn't like anyone else trying to move her! We tried some things at home, like putting the mobile on the other side of her crib to encourage her to turn her head.
At her 4 month appointment out Pediatrician noticed that her face was taking on an A symmetrical shape. She was diagnosed with tortocalis and we started Physical Therapy. Our Physical Therapist sent us to see a Plastic Surgeon who started us on the road to our helmet. There was nothing along the way that was not new to me. I had four other children and had never experienced anything like this before. Every new appointment was a new experience. I had no idea you could do Physical Therapy with a baby for an hour. But you know what - they can! I had no idea that getting a helmet would be such a long road. We went into Fit Well and they took pictures for the insurance company. I don't know if every insurance company requires this but we had to write a letter telling them what we had done on our own to help our daughter. There is nothing like explaining yourself as a parent to people who don't even know you! In the end we had to call the insurance company. For us it didn't take more then a phone call but I know some times it does. Talk to your doctors and/or physical therapist. I know they would be more then happy to write the letters to help you!
Next we went into Fit Well to have the mold of her head done. Two weeks later we were able to pick it up. They were very helpful and more then willing to answer any questions we had. One of Maycie's problems was a very pronounced bump on the back of her head which really became prominent during this time. This caused the helmet to put too much pressure on the back of her head. They tried to adjust it for us but in the end the pressure had caused her head to get infected and abscess. At one point it was as big as a golf ball. In the end they decided to just make her a new helmet.
We are now about 6 weeks into our second helmet. It is going very well! There was a visible difference in the back of her head after just one week!
I have run into a number of people over the last 6 weeks who know someone who has had a helmet, but I have only talked to 2 families who have actually done the helmet. Talking to these 2 families helped me so much! Both of them told me it was so worth everything they went through and did. The more I thought about it the more I wanted to be able to talk to others who had been through what we were going through and to be able to share what we had learned with others who were just starting.
As I started asking at Fit Well, Physical Therapy and doing some research on my own I found nothing that would help me with what I wanted. That is why I started this blog. I am hoping it is able to find those who are looking for the same kind of support I am! I hope we are able to share our stories good and bad. I hope, for those who are just getting started on the road or thinking about it, it helps you know what to do.