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 

The mind of a Cranio Parent

It is such a whirlwind of emotions, this whole cranio journey. It's hard to believe it's almost been 3 years since I first heard the word CRANIOSYNOSTOSIS. In the moment it felt like my world stood still. I still get teary eyed thinking about everything that Alice went through and the emotions that I experienced the first year of Alice's life....anger, fear, joy, happiness...geesh it was quite a journey!!

Cranio has changed me as a person...for one, I will never be able to just admire a baby anymore and say "awhhh"...I will inspect EVERY baby head, child head and even adult head. (it comes w the territory lol) You too will become a 'head picker' through this journey...

Another thing that will probably never go away, is how much you worry about your cranio baby. It does not matter what surgery they have or anything...you WILL worry your heart out. This is normal. Even almost 3 years later, I worry, not quite as much as I did in the beginning, but I do. You'll worry about your baby's head, appearance...everything. Just remember YOU are doing everything you can to make your child 'better'. Surgery is necessary to correct this condition. (except for some metopic cases)

The thing we loved about endoscopic surgery is that we didn't have to wait. The Doctor released that suture and instantly, her brain had the room in needed to grow. That was why we pushed so hard for endo...I just wanted her problem treated as simply and as quickly as possible. The idea of a cut in her skull VS a reconstruction of the skull sat better with me. The skull is essentially how it should have been at birth, and the skull and brain can grow as it should.

Here is miss Alice being so proud of her new haircut! (her 1st haircut was by the neurosurgeon)

She'll be 3 years post op on July 12
We couldn't be happier with our decision of endoscopic

Craniosynostosis Endoscopic Surgery Support Group

Please join this group and post any questions or stories about Endoscopic Surgery for Craniosynostosis. Hoping to help others just starting this journey with Craniosynostosis

https://www.facebook.com/groups/523481684505643/

She really has come so far...

Our sweet Alice turned 3 years old today. I thought I would post a comparison picture to celebrate how far she's come in 2 and a half years. She had endoscopic surgery for left coronal (unicoronal) craniosynostosis when she was 5 months old.

I noticed her asymmetry at birth and I kick myself for not following my gut feeling and getting it checked out sooner. I convinced myself not to worry and that it was just from the birthing process. Thank goodness it was caught in time...it was caught just barely in time for her to be a candidate for the endoscopic surgery. Moral of the story is to always follow your gut feeling!