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| 5 months old |
On June 18th 2013, our soon to be 5 month old baby girl was diagnosed with Left Coronal Craniosynostosis. We were told she missed the window for having the smaller endoscopic surgery and that she would need a major reconstructive surgery of her skull around one year of age. We were determined to find a doctor who would still do the smaller surgery. This is documentation of our journey in hopes of helping others who are going through the same thing.
Sunday, June 30, 2013
So Nervous
Well... we finally shared the news about Alice...thanks so much to those of you who have reached out to me already. I don't know why it has been so hard for me to talk about, I guess I just wanted to block it out but I realized we need as many prayers as possible for Alice and for our family. My stomach has been in knots all weekend, one, because I am nervous about the insurance company's decision and two, because if she is approved my baby may be having surgery very soon. It's alot to take in...and to think I was an absolute basket case when my kids had tubes put in their ears...that was nothing compared to what Alice is about to go through. Of course I want the endoscope procedure done over the more invasive surgery...I think any parent would choose that direction if they could...that is why I am so nervous. This is what I want for her, and I don't know how I am going to handle it if they turn us down...then I will have anxiety over the next 5 months or so, awaiting the time when they would do the larger surgery...to think of that makes me physically ill. The endoscope surgery is still very scary, and she will be in the ICU and be swollen and it will still be very overwhelming.With the endoscope surgery a helmet is used to help mold the skull after they open up the suture in her skull. With the larger surgery they actually remold the skull in surgery. I guess what is meant to be will be... I will update you as soon as I hear something from the insurance company. Thanks for your support.
Friday, June 21, 2013
Roller Coaster of Emotions
After crying all week and being sick as
can be...I decided to start researching...I was determined
to find a Doctor who could still do the endoscope procedure...the thought of my
baby's head being cut open from ear to ear and her skull being taken out and
reconstructed terrified me to say the least.
What is Craniosynostosis???
It's the premature closing (or fusing) of
one or more of the boney gaps in an infant's skull. These gaps are known as
sutures. The sutures are supposed to remain open until 2 years of age to allow
for
proper brain growth.
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| The different types |
These sites will help explain it more
I
came across several great sites...some that offered alot of information,
support sites, sites that offered care packages, forums where I talked to other
parents going through the same thing or that had in the past. I couldn't
believe it...this long "C" word that Alice was diagnosed with has
been around for a very long time, yet I had never heard of it?!?! Many sites
were trying to raise awareness to help other parents detect this birth defect
in their children. I hope this blog of our journey helps others that are going
through this and helps raise awareness as well.
These
sites are very helpful for families going through this journey. Cranio Care
Bears actually sends out care packages to families. Please, if you want to do
something for these sweet babies going through this, donate to any of these
sites to help assist families and also consider donating blood to help children
that need transfusions during these surgeries.
In
the forums I came across so many friendly moms that were willing to help me, it
was so refreshing and really felt good to know that I had a support system of
people that had gone through this. I was told about several doctors in the U.S
that offered the less invasive surgery or endoscope surgery past 3 months of
age. I reached out to Dr Mark Proctor in Boston, MA and Dr Jiminez in San
Antonio, TX. I also reached out to UVA for a second opinion, although they
didn't offer the endoscope procedure past 3 months of age. Monday morning I
heard from UVA first, scheduled an appt with them, shortly after that Dr
Proctor personally emailed me himself and thought Alice would be a good
candidate for the surgery based on the photos I sent him. I heard from the
practice in TX a couple days later. The entire week of June 24-28 was a roller
coaster of emotions. I had read so many conflicting reports about which surgery
would help Alice the most....Jason and I went back and forth, trying to make a
decision and we finally decided to go with Dr Proctor at Boston Children's
Hospital...but it wasn't that simple...now we had to get the approval from the
insurance company and convince them that Dr Proctor was the best fit to help
our daughter. The last couple days I have been working with the case worker
from out pediatrician's office to gather a file to present to them...we had a
doctor's note from MCV we hoped would help along with all office notes, etc.
The file is ready to go and will be faxed first thing Monday morning
(7/1/13)...we hope to have a decision by Monday evening, as this is a rushed
case with not much of a window for opportunity. The endoscope procedure needs
to be done asap or we will no longer have that option and she will be scheduled
for the CVR surgery, the much larger, longer and more invasive surgery all
around.
As
some of your know my family has been through some very scary things recently
and many trials and hard times for almost 2 years now. My sister was in a very
bad accident last weekend, the car rolled over and by the grace of God she made
it through and is ok. My mom was ventilated and sedated back in December for
what was believed to be caused by an allergic reaction to newly developed
allergies. It was a very scary week, but thanks to God and 'our angels' for
watching over her. She also had another scare on June 11th (the same day as
Alice's first neuro appt) and had to use her epi pens and was in the
hospital... luckily this time it wasn't as severe. I hope 'our angels' are
watching over Miss Alice Mary like they so amazingly watched over my sister and
mom. Our Angels are my Mema and Grandaddy, who we lost 10 months apart just
recently...
Please keep Alice and our family in your
prayers as we anxiously await this decision. If we get good news...we could be
on our way to Boston Children's Hospital as early as next week...if not we
could try to appeal it but may run out of time for getting this procedure done
and will have to schedule the larger surgery...
Tuesday, June 18, 2013
It was confirmed
We went for a second opinion on June 18th, 2013. I had been obsessively researching all weekend leading up to this appointment and I already had a gut feeling of what was to come. Within minutes of walking in the room he dismissed one of the possible diagnosis...and confirmed that she had Left Coronal Craniosynostosis, it felt like my heart dropped to my stomach...but in my research over the weekend and looking at pictures, I was almost positive that this is what she had...but hearing it confirmed was a different story. In the remaining minutes of the appointment he described what had to be done...no options...she had to have surgery....and because it wasn't caught sooner...she had to have a more invasive surgery, a major reconstructive surgery of her skull. It was to be scheduled between 10 and 12 months of age. I was sick...angry, confused...I just didn't understand how this could happen to our sweet baby girl. Furious that it hadn't been caught sooner because if it had she could have had an endoscope procedure done ...which is usually only offered up to 3 months of age. I was numb for the next few days, but grateful there was a solution...I began to fight for my daughter, and do whatever I could to help her...
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| Alice Mary's baptism My Uncle and Aunt (godparents), My dad, sister, mom, Cheryl and Jason and our 3 babies (left to right) |
Tuesday, June 11, 2013
Blindsided
We went to see a neurosurgeon on Tuesday June 11th, 2013, with the mind set that worse case scenario, she may need a helmet to help shape her head. The doctor walked in and said a whole bunch of fancy words for what she thought was going on...it could be Anterior Positional Plagiocephaly, which would be the first she has ever seen (most of the time it's in the back of the head) and that would be the best case scenario, requiring a helmet to help shape the skull... or it could be Left Coronal Craniosynostosis, which I was clueless about. She initially said lets get an xray...then changed to let's get a CT. There are concerns about radiation on young children so I didn't want to do that now without knowing more...I needed someone to tell me by looking at her...what was going on. So I came home and contacted another doctor for a second opinion and set up an appointment with him for the following week. I was a wreck...was completely blindsided by all of this...
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| Alice trying very hard to sit up |
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