Monday, June 2, 2014

How Far We Have Come!

On the way to DC

As May, June, July approach...I must admit I feel more emotional than I thought I would feel. I am in awe of how far we have come! Last May I remember getting the referral to a neurosurgeon...and then the beginning of June is when we saw the neurosurgeon for the first time...and heard the word Craniosynostosis for the first time. And then July...fighting insurance, waiting for what seemed like eternity and then getting the green light for surgery. It was such a whirl wind of events. I was a wreck, for sure...but I had more strength than I thought I did. I look back and wonder how I didn't just crumble and fall apart. A friend of mine, who I met through a cranio forum, who's child also had the same type of cranio and same surgery shared this with me. It has been so nice to talk to her through this journey...

This is so perfectly fitting for our cranio journey

We traveled to Washington DC today for Alice's followup with her neurosurgeon, Dr Magge. I think every parent who has a child with Craniosynostosis can relate to the nerves that come with each appointment. The construction and traffic on the way up didn't help the nerves at all.

My husband and I had some questions going into today's we were eager to hear what Dr Magge had to say. Alice is on her 2nd helmet. She was in her first one just under 3 months...and has been in her current one for almost 8 months. The plan was for Alice to stay in her helmet until around 18 months of age. So with her being 16 months old now...we wondered how this would play out...whether she would need a 3rd helmet or not. See, when you first get a new helmet, they are somewhat large and need lots of adjusting to make them fit in my opinion, you don't get alot of change in the beginning of each notice the most improvement when they are snug, like Alice's is now...which is why Hanger was reluctant to order that 3rd helmet. Being as that we already owe Hanger right much money for the helmet she is in now, Dr Magge thought it would be silly to get a new costly helmet when she would only be in in for a month maybe. So....
Dr Magge said she will stay in this helmet until she outgrows it!!!! Which could possibly be earlier than 18 months...although we really want her to make it to 18 months to get as much improvement as possible before the end of helmet therapy.

Playing after a long car ride home

Dr Magge did tell us in the beginning that because Alice was on the older side when having the endoscopic surgery, that her results may not be as good as a younger baby. But we were willing to risk that...because we wanted this surgery for her. But Dr Magge seemed VERY pleased at how Alice looks and her results so far! We then starting discussing some pros and cons to both types treatment for Craniosynostosis (CVR and endoscopic) I told him my view point about how I see what endoscopic surgery does...and how I feel it stops Craniosynostosis in it's tracks...and stops any physical distortions. When the strip craniectomy is performed and that suture is released...the skull starts to grow as it should be. The nasal and mouth deviation that Alice had before the surgery, was noticeably improved within a short time. For Coronal babies...if you wait months for the larger CVR surgery, that is just more time for things to distort and worsen. Dr Magge did say that during CVR surgery he can correct the flatness that occurs on the forehead in Coronal babies but the nose deviation is something that cannot be corrected. Well... I am just fine with that!. Alice's forehead may be a little flat on one side for a little while but I am ok with that! If we avoided putting our sweet baby through a large reconstructive surgery of her skull, an ear to ear incision etc...and all she has is a flattened what?!? Although Endo babies continue to improve after helmet therapy and their brow is pushed out by sinuses. When her helmet is off, you can't even tell what she has been through. I couldn't be happier with our decision to FIGHT for this endoscopic surgery! So grateful for Dr Magge coming into out lives at the perfect time and so blessed to have our beautiful little Alice...she is my hero!

I also want to take time to thank a sweet friend of mine who recently hosted a fundraiser for Alice on Instagram to help us pay for her helmets. I can't thank you enough for your hard work and your sweet heart! (@auctionforAIC)

Below is a new awareness video I have been working VERY hard on to help other families and also awareness of Craniosynostosis and shed light on the endoscopic surgery option. It would mean the world to me if you would share this video with others...especially new mothers/fathers.