Long overdo update

Hey everyone! I apologize for such a long gap in posting. Time is just flying by!

It's hard to believe Alice will be 7 years old in a couple of months. I remember in the beginning of this journey, it seemed like time moved SO slow. Waiting for a diagnosis was agonizing, then waiting for the surgery date, in tears everyday...then the LONG year in the helmet. I'm not sure how time has flown by since then but it has and here we are with a sweet, beautiful smart little girl who made it through and is doing amazingly well. I am so thankful that I listened to my gut instinct and pushed for the endoscopic surgery. If I had to do it all over again, I would still make the same decision.

We took Alice for another opinion a while back. It was actually the first neurosurgeon that diagnosed her at VCU, Dr Gary Tye. We wanted to hear his thoughts all of these years later. He had ZERO concerns. The plastic surgeon also came into the appointment. She took pictures and told us she thought she looked great. She did mention that at any time in the future we wanted to do a small 'fill in' surgery, we could always do that but they both agreed that the average person would never know she had anything wrong. She still has a small indentation on her forehead but it has come SO far since she came out of that helmet. Of course we see it, because we know what she went through but to this day Alice has never asked about anything looking different. She knows about the surgery and the helmet but has never seen anything in the mirror that she questioned. So we will follow up as needed as far as her cranio.

We also had a followup at the ophthalmologist. They thoroughly examined her and said that she had outgrown the eye problem that she had and that she no longer needed to have the surgery to have it corrected. Oh my goodness that was a relief. Again, I followed that mommy gut instinct and chose not to have the surgery. We did some simple eye exercises with her and she ended up outgrowing the issue. I am not the type that's going to immediately jump and do exactly what the doctor says. I will get second and third opinions and do my own research for my child. I do the same for myself with issues I've had in recent years. I try my best to avoid surgical intervention unless it's absolutely necessary. Thankfully Alice was able to avoid the surgery and is doing well. I pray that she will continue doing well. She is a healthy, normal little girl and I'm so proud to be her Mom.

Thank you to all of you that take the time to read my blog. I appreciate your comments and messages so much. All I wanted when I started was to help other parents that were in my shoes. I truly hope it has.

We took Alice to Disney World for her first time about a month ago. Here is a picture of her with Jasmine and Aladdin. Seeing that smile just melts my heart.

4 years post op - neurosurgeon appointment

Alice is a little over 4 years post op. (surgery date- July 12, 2013)
Each year near her "Cranioversary'  I take photos of her, so that I can document her progress.
Here are a couple from July 2017.

Alice had a followup today with her neurosurgeon, Dr Magge. It's been almost a year since we had seen him. We were past due to see him, she should have seen him in the Spring. This was the longest we have gone without seeing him since her surgery. I was very anxious to say the least.

I know many look at her and don't know she ever had surgery or the ones that do know may think 'she had surgery, she's fixed now' The thing is, her skull isn't 'normal' like the average skull. Yes he made room for her brain to grow but he will continue to follow her into her teenage years. 

Why? He's monitoring the growth of her skull, making sure it charts within normal range and that growth doesn't slow down. If it does, then that would be a red flag. Dr Magge also wants her to continue to be monitored every year by an ophthalmologist and checked for Papilledema, which is the swelling of the optic nerve as it enters the back of the eye due to raised intracranial pressure, which would be a red flag also. This is all pretty standard for most cranio children. 

Dr Magge took several measurements today of her head. Her head on the left side is about 12mm less than the right side. But her head growth is good overall, continuing to progress on the growth curve. He did discuss how he could surgically fix the left side of her forehead, an orbital advancement, an ear to ear incision, basically a reconstruction of the front part of her skull, forehead and eye sockets BUT I just can't put her through something like that solely for a cosmetic reason, I would only agree if it was medically necessary, meaning signs of intracranial pressure.

I talked to him about how I read that when the sinuses start to form, that things will improve even more, physically. He looked at me and smiled and said " I forget I'm talking to the cranio expert" lol. No I am definitely not an expert but I am very knowledgeable on the subject since June of 2013, I have done TONS of reading. He does think things will continue to improve for many years to come, as she gets older.

Overall it was a great checkup. I will always worry about her but I feel a little sense of relief after seeing him again after so long. I am so thankful she was able to have this less invasive endoscopic surgery and that she is doing so well. She has no delays and is a very smart little girl. Her head/face is not perfectly symmetrical but who's is, cranio or no cranio.

We followup with him again in one year. 

Facts about endoscopic surgery

The one thing I have tried to do is just stick to the known facts about endoscopic surgery when trying to help others. I had to research so much to get accurate factual information (instead of opinions being thrown at me) The main reason I started this blog was to make it easier to find information about endoscopic surgery. I take this same approach on social media and on support groups. All I want to do is highlight the benefits of endoscopic surgery and make people more aware that it can be done up to six months of age. I genuinely want to help people. I have learned SO much in the past 4 years since Alice was first diagnosed and I just want to share what I know.

Dr Mark Proctor is a well known neurosurgeon in Boston. Alice was scheduled to have surgery with him initially however insurance denied it because they found a doctor closer to us that would do endoscopic surgery on her. He trained under Dr Proctor, so it was a huge blessing.
Dr Proctor did a study about the benefits of endoscopic surgery for each type of craniosynostosis. This is based on his actual experience, about actual cases. It is very informative and full of FACTS. He offers both types of surgeries. I do feel like everyone needs to see a doctor that offers both types of surgeries or get 2nd or even 3rd opinions.
Here is a link to the article...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4729850/

Since my daughter had unicoronal (left coronal) I need to point out how much I agree with this study. Everything that is stated has been true for our case. Dr Proctor states one of the early benefits of endoscopic surgery for coronal babies is that the nose and mouth asymmetry starts to correct quickly after surgery. Yes! It does, that is one of the first things we noticed. It was amazing to see how things shifted so quickly after the suture was opened like it should be. Also in the before picture of Alice, her left eye socket was significantly larger than her right one. This was also corrected. The brow bone correction is slower with endoscopic surgery, but I was ok with that. Knowing that immediately after surgery, my daughter's brain had room to grow. I didn't have to wait and worry for months wondering if she had pressure and also continue to watch her facial features worsen. The flattening on her brow has continued to improve each year, just as Dr Proctor stated. You have to be patient. I understand that's hard, but it is amazing to see the changes. Endoscopic surgery is a pretty natural approach, it essentially recreates the suture so that the brain can grow without being restricted. The helmet then helps to shape the skull.

The before and after photos speak for themselves,
It is truly amazing to see how far she has come.

With that being said, when searching for a surgeon who offers endoscopic surgery please make sure they are experienced. A HUGE component in the outcome of your child's results is helmet therapy. For coronal babies it is very important that they stay in the helmet for as long as possible. Alice wore hers until she was 18 months old (1 year post op) Helmet therapy is crucial after having endoscopic surgery..

This a video I made and poem I wrote for Alice's 3 year Cranioversary (3 years post op)
It shows her progress over the years. I thought I would share again.

Following my heart again...

A few weeks ago Alice returned back to the ophthalmologist because I noticed her eye drifting more often. I see it most often when she is looking in to the distance at something. We were told to call them if we noticed that things were worse, so I did. She has strabismus, more specifically intermittent exotropia. Strabisbus is something that is very common with Craniosynostosis, unfortunately. They want to do eye muscle surgery within the next few months to prevent more problems. I'll be honest, it took everything I had not to fall apart the second that she said the word 'surgery'. The whole idea of it obviously triggers some things for me...even though this surgery is much smaller, it still doesn't sit well. I've been pretty upset about it and didn't want to tell anyone. I suppose it's my way of pretending it's not happening. We were thinking about waiting until February after the holidays and after her birthday but then we decided waiting was just harder...so we scheduled it for early December.

In the mean time I started noticing Alice's right eye not acting quite right either. I was not totally confident that fixing one eye would magically fix the problem. I researched online and started reading about Vision therapy. I started wondering if this would be a possibility for Alice. My heart would simply not accept that surgery was the only option for her. I started calling all over the area and could only find one optometrist that offered it. I scheduled her for an evaluation asap. She was evaluated today and he feels that her eyes are not that bad and is VERY confident that she will improve, with some simple exercises he showed me. He did also note the right eye was a little off as well. He didn't think her eyes were bad enough to suggest therapy sessions 1-2 times a week like many other patients do. We will followup with him in 4 months and if in that time she has not improved, we will revisit the surgery option. We have nothing to lose by giving this a try.

Please keep our sweet girl in your thoughts. We only want the best for her. With her skull surgery, I followed my heart and pushed for another opinion. I felt the same calling in this circumstance. I can only hope and pray it helps her.


Below is a video of us practicing one of the techniques we learned today. Focusing on something in near proximity to essentially cross her eyes. The hope is this will help her eyes and brain to work better together. You can see at the end that her right eye tried to focus on me and her left eye goes out.

UPDATE: March 2017
Alice is now able to bring her eye back in on command when it drifts. This is wonderful news! She is not leaving it out there anymore and I know that the vision therapy exercises have helped with this!!


https://youtu.be/5BIKvYDwR5E

3+ years neurosurgeon followup

Alice in the atrium lobby at the hospital where she had surgery

Alice had a followup with Dr Magge today. She is about 3 years 2 months post op. She has been out of her helmet for about 2 years and 2 months.
So just a brief summary of her visit...
Overall, Dr Magge didn't have any immediate concerns, meaning her brain still has the room it needs. Her head is gradually growing, although she is still in the 10th percentile. He is going to continue to monitor her. We discussed symptoms to look out for, which would indicate signs of pressure in the brain. We followup again in 6 months. We are hopeful that she won't need any more surgery but we know that is not a guarantee, just as with an 'cranio' child, no matter which type of surgery they had...the most important thing is that as soon as they opened her skull up during endoscopic surgery, her brain immediately had room to grow. Any other surgery recommended would most likely be for cosmetic reasons, which we wont consider unless it's for medical reasons.

We went to a Nationals game after her appointment today...she had SO much fun!!!
She loves baseball and wearing caps (I think her helmet had an influence on that lol)

Always a Beauty to me

I have mentioned in previous posts, how the longer you wait to treat unicoronal (left or right) craniosynostosis, the more the facial features are affected...causing more asymmetry and eye problems, in particular by waiting to have CVR. Which is why being diagnosed and treated in a timely manor is so important. Six months of age is the cut off for endoscopic surgery. I feel very strongly about treating craniosynostosis as early as possible, to prevent even more medical problems.

Alice has done amazingly well. She was 5 and a half months old when she had surgery. She did so well with her helmet, without that, she would not have the results she has today. I can't stress enough how important it is to keep that helmet on 23 hours a day, and the longer the baby wears it, the better. Most doctors recommend wearing it up to a year, which I think is VERY important to the end result. Alice wore hers until she was 18 months old, she wore it for almost exactly a year.

3 years post op and we are starting to see a few minor issues. At Alice's followup at the ophthalmologist, they observed her left eye drifting. This only seems to happen when she 'stares off into space' or becomes tired. We followup in 6 months, but if she starts drifting more often, then we need to call them. I can just hope and pray that it doesn't get worse. I can only imagine how much more her eye would have been affected if we had waited 6 more months to have the larger surgery. Babies with coronal, in particular, should be followed by a ophthalmologist. I hate to think of her having a surgery for her eye muscle, but if she does, I know it's a much smaller procedure than her skull surgery and she will be ok. Will keep you updated.

Coronal babies will never have perfectly symmetrical faces (really, who does?) but I'm ok with that, and it doesn't matter which surgery they get. I know by treating her sooner rather than later (vs 1 year of age, as recommended for CVR) not only gave her room for her brain to grow but it also helped to improve her facial asymmetry from getting even worse. As soon as Alice had the surgery and they opened her skull up how it was supposed to be, her facial asymmetry started improving right away.

Alice was dealt a card in life that I wish she hadn't been, but it has taught me so much. Not only have I learned about a condition that I never heard of. I also learned how strong, brave and resilient these cranio babies are and just how beautiful they truly are... scars, imperfections and all.

Alice will always be a 'Beauty' to me. Which is fitting because she is really loving Princess Belle these days and insists on sleeping in her dress and crown.

She follows up with her neurosurgeon in September, we are very eager to hear what he has to say...

Always a Beauty to me

3 years post op

It's so hard to believe how far we have come since we first heard the word Craniosynostosis. It felt as though time stood still that day...and everyday leading up to surgery. To this day, I get emotional about what she went through and it's sometimes hard for me to talk about it without tearing up. 

When we were told she would be in a helmet for up to a year that seemed like eternity. but here we are 3 years post op and it's been 2 years since she's been out of her helmet. It flew by and she's doing great. All that worry and just look at her, I couldn't be more proud. Now I'm not saying I don't worry. I will always worry about her, I do with my other children too, it's just a little more of a worry with her. So forgive me if I hover around her more than the average parent. I will always be protective of her and of her skull. 

We are so happy with her results and still so grateful that we fought for the endoscopic surgery and that she was a candidate for it. Thankful to Dr Magge in Washington DC, thankful to our orthotist at Hanger. Without them, it wouldn't have been possible. 

I made a video and wrote a poem to celebrate this special and emotional day.

You can view it here...

https://www.youtube.com/watch?v=vnfHhy3SVMk