Hope in Mary-land

Whew...what a long and nerve racking drive it was to Maryland to see Dr Magge today. Lots of construction and it took a very long time to get there. Jason and I have both been very emotional leading up to today...and we were feeling like the appointment wasn't going to go the way we wanted it to... especially after getting an email from Dr Magge last night that sounded like he wouldn't be willing to do the endoscopic surgery...but we had to go either way for insurance purposes because if he said no, then we would be approved for Dr Proctor, a stepping stone, more or less, to Boston.

I kept looking for guidance, praying, begging for some kind of clarity in making this decision between the endoscopic surgery or the larger surgery and trying to decide on which Doctor. As we approached the Maryland state border, I looked over and saw the welcome sign...and it just hit me. Welcome to MARY-land is what I saw... Mary is my grandmother that passed away not very long ago and Alice's middle name was also in honor of her, Alice Mary. I couldn't help but feel like it may be meant to be as we drove past the state line. As we anxiously awaited Dr Magge to come in the room, my stomach kept rolling over and over, I was nervous, very nervous. Dr Magge did call me several times this morning before the appointment to talk about Alice, because I had sent some pictures and he let me know that he wanted to try and get a CT today, if possible...but it turned out it couldn't be done today, he said that we could reschedule the appointment to later in the week when we could also do the CT...but I told him we were coming today anyways because we needed an answer TODAY. I already had a great feeling about him from speaking to him on the phone...and Dr Proctor from Boston also told me we were in good hands. He walked in and within the first ten or fifteen minutes Jason and I both thought he was leaning towards not doing the endoscopic surgery and really trying to explain why he should do the larger surgery on her. Then after examining her and talking more he had a change in his tone...he said, I initially thought leading up to this appointment that there was no way I would be able to help her by doing the endoscopic surgery but after seeing that she has a very mild case I am willing to do it....I started tearing up, I tried to hold it back....but I wanted to jump up and hug him. I was so relieved, not only did I have two doctors willing to do it, now I had one that was within 2 hours of my house, which would make return visits so much more convenient and affordable. This is what I have been fighting for...and to know that all my effort, research and work I put into this was all worth it made me feel very proud of myself...

Now, Dr Magge did discuss in great detail the pros and cons of each type of surgery. The endoscopic surgery is less invasive, less blood loss, less hospital stay and less time under anesthesia. The best results are when it is done before 3 months of age, which is why it is hard to find a doctor willing to push that window. But I felt in my heart that Alice was a mild case and that she would benefit from this surgery. She will have to wear a helmet...which will hold back/restrict the side of her skull that has grown outward while allowing the other side that is fused to catch up, so to speak. The helmet therapy may last up to 18 months of age, and I know the helmet may be challenging at first but I feel that it's worth it. The only concern, especially with the type of craniosynostosis that Alice has, is that we won't be happy with her result, appearance wise...but, that is something that we can address later...yes that would require another surgery, a larger one, but there is a chance that the endoscopic surgery could be all that she needs. It's really a case by case thing...and you don't know until a ways down the road. Later, if needed, her brow bone would possibly have to be moved outward. With the larger surgery the skull is physically taken out, reconstructed and smoothed, plates are put on it and then it is put back in (seriously? Just a little overwhelming)..but everything is fixed at once, no helmet therapy for months but a MAJOR reconstructive surgery.

I kept reading on forums from other moms that if they had the option to do the endoscopic surgery they would in a heartbeat, but most of them didn't have the option. That stuck with me...I even called Alice's pediatrician right after the appointment and she said that is what she would choose for her child if given the option. So...that is the plan...and it could be happening as soon as this Friday. I will know for sure tomorrow and will update the blog when I know.

My grandfather, that was married to my grandmother Mary, passed away in September, just 10 months after her...he was cremated and because of various family conflicts we kept putting off the burial of his remains. It has been scheduled for this Friday, July 12th for a while now. After talking to my Aunt Elizabeth, I can't help but find it ironic that Alice's surgery may fall on the same day... maybe this is what he wants ,and that's what is meant to be...it's almost like I had signs from both my Mema and my Grandaddy in the same day, finally giving me some guidance. While I hate to miss the graveside service, if the surgery happens Friday, I know this is what they would both want for Alice Mary.

Thank you Mema and Grandaddy for giving me the clarity and guidance that I needed.

Waiting for Dr Magee to come in and see us

The Unknown

Alice with her big brother and big sister (Trevor and Cassidy) on July 4th. 

No update yet, I just need to vent I guess. I am such a nervous wreck. My head hasn't even let me get nervous about the surgery yet because everything is so up in the air right now. I don't know if her surgery will be in DC, Boston or possibly even in Richmond. After the appointment tomorrow we should have more of an idea...we will either be scrambling to get to Boston, or scheduling the surgery in DC very soon or worse case scenario, waiting for the larger more invasive surgery in the fall. The unknown is tearing me up! If I find out that the surgery is this week or next, then I think I will physically become ill when it sinks in...the thought of my baby being sedated and in surgery is such a scary thing. As a parent, we want to protect our children and don't want them to be afraid, be in pain or be upset in any way, especially at this age when they are so innocent and have no idea what is about to happen. I know this will help her in the long run, but she doesn't understand that. I can't imagine the emotions I am going to feel when they take my baby out of my arms to the operating room...or the flood of emotions that will hit me when I see her after surgery, swollen, upset, scared...ugh it just tears my heart up! Like I said, it's like nothing I have ever experienced before...the unknown is so scary.

Alice's first time in the big girl tub in her bath seat. She loved it!

Update

Alice Mary's first 4th of July!

So after a very long and nerve racking week...we finally have an update. On Wednesday I called the insurance company pretty much begging them to help me and asked them what I needed to do to get an answer. I got in touch with a case worker and everything was re-faxed to her personally. With the help of Alice's pediatrician and office staff they were able to get them moving on it even more today. Unfortunately they denied us going to see Dr Proctor in Boston, for now, because they said there is a doctor in Washington DC that offers the endoscopic surgery past 3 months of age there. His name is Dr Suresh Magge and he actually trained with Dr Mark Proctor at Boston Children's Hospital. Dr Magge said he wouldn't be able to to say for sure if he will do the procedure until he evaluates her on Monday. If he doesn't want to do the procedure or feels like she is past his personal window for doing the less invasive surgery then we will automatically be approved to see Dr Proctor in Boston. So the good news is that it looks like the endoscopic surgery will be done, but we don't know for sure which Doctor will do it or when it will be done. So... Jason and I will be headed to Maryland on Monday (where Dr Magge's office is) and by Monday evening we hope to have an answer...I suspect that either way Alice will be having this surgery either later this week or early next week...which brings a whole other level of anxiety and worry. Although I am so grateful that she may have the chance to have the less invasive surgery and that there is a way to help her... it is still so very scary and overwhelming...it really is alot for Jason and I to take in. Unlike anything I have ever been through in my life...I am terrified but trying to be strong. Thank you all for your support...

Here is a link with information about Dr Magge
http://www.childrensnational.org/research/faculty/bios/cgmr/magge_s.aspx

Alice's first time in the pool

Running out of patience...

So all day Monday I was super anxious hoping to hear an answer by Monday evening, then all day today I was somewhat anxious but had high hopes of hearing something today...then learned how unconcerned the insurance company was about my child. The case worker that handles referrals at her pediatrician's office called our insurance company, where the fax was sent, 7 times today to try and push them along...and said things like "how would you feel if this was your child", "this baby really needs this surgery, she's in a tight window" and her response was "everyone has problems"..I mean really??? That cut like a knife for some reason...the reality that they just don't give a damn about how urgent this is and what a tight window it is to have this procedure done. If they are the cause of us missing this opportunity, I really don't know how I'm going to react...I was doing pretty good, and had been pretty strong for a while now...then this afternoon I broke down...

Snuggle time-
feeling defeated and down

I have never felt the feelings I am feeling right now or gone through these emotions of feeling helpless, and that the fate of my child's surgery is in their hands and not my decision. So in hopes of not feeling let down again, I don't expect to hear anything tomorrow either, then Thursday is a holiday...we will be lucky if we hear something by Friday. In the meantime we are on standby, my parents are on standby in case they have to keep the kids while we are gone and everything is basically on hold...can't even think about  the Fourth of July or celebrating. I sure hope I have an update soon, will let you all know when I hear something. Thanks so much to everyone for your kind words and prayers, we really appreciate it.



Here's a video of my happy little Alice today...

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.

5 months old

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. 

The different types

These sites will help explain it more

http://beyondaglimpse.com/craniosynostosis

http://www.childrenshospital.org/az/Site2130/mainpageS2130P0.html

http://www.craniofacialmd.com/diagnoses/non-syndromic-craniosynostosis/

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. 

http://craniocarebears.org/

http://www.craniokids.org/

http://www.cranioangelnetwork.com/Cranio_Angel_Network/Welcome.html

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...

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...

Alice Mary's baptism
My Uncle and Aunt (godparents), My dad, sister, mom, Cheryl and Jason and our 3 babies
(left to right)