Tuesday, December 31, 2013

Reflecting on 2013

We received the best gift this year, our sweet Alice was born!  I wasn't thrilled about my daughter being born in 2013, I guess you could say I am slightly superstitious of the number 13, because of my grandfather and how he felt about it. (long story) So...as I reflect back on 2013 I could easily talk about all the negative things that happened, I could blame the number 13 for all the bad things ...and say 2013 was a terrible year...BUT I am not...instead I am going to look at the positive things...

Our family

My mom has pulled through some very scary episodes that she was hospitalized for and thankfully is on the verge of getting some answers so that we can avoid it from happening again. My sister survived a very scary car crash, thank God!  My Grandmother has been in and out of the hospital but has pulled through and fought her way back up. She has been such a trooper! I am so thankful for all of these things...sad that they have happened but grateful that they are still here with me. Grateful for a strong support system, and my wonderful family and friends.

Alice's 1st Christmas

Of course how could I leave out the reason for creating this blog? Alice being diagnosed with Craniosynostosis. Yes it was a very scary and emotional trying time for us...but I am grateful that she was diagnosed with something that COULD be treated. Happy that it was caught early enough that we were able to get her early treatment. Blessed to come across Dr Magge that was able to give Alice the surgery that we wanted for her, endoscopic surgery. We didn't have any options, she had to have surgery...and if she had to, we knew in our hearts that fighting for the less invasive surgery was what we wanted for our baby. So thank you 2013 for proving to me that you didn't bring just negative things...but there was a light on the other side.

When I first found out about Alice's diagnosis I was a basket case. A friend of mine said some things to me that helped alot. She said,

"I know it's hard but when you are worrying, try to focus only on the things that you can change or have control over. Focus on doing the best you can for her right now and doing as much research on the condition, etc. See if there are other families who have been through it before.
Just knowing what to possibly expect will help. The unknown is the scariest"

Her words really helped me to look at it from another perspective and look at it as a way to help other families as well and focus on helping my daughter in any way I could. My friend, who I mentioned above, had been through the unthinkable, losing her sweet girl to a rare disease called Niemann-pick. I learned alot from her and from her sweet girl. Her daughter touched the lives of thousands and helped others in so many ways. Her blog inspired me... the way she shared her story, shared her sweet daughter with us, how positive she was and the way she took such a heartbreaking diagnosis and used it to touch the lives of others and spread the word about Niemann pick disease. Check out her blog to read more about sweet Kaitlyn and Niemann-pick disease at this link.  http://niemannpick.blogspot.com/  Thank you Deanna, you inspired me to look at the positive and to focus on what I could control. I know our situations are completely not related and there is no comparison to what she and her family have been through...but I just wanted to acknowledge her and her beautiful daughter Kaitlyn for helping me.

After speaking to her, I knew others would be as upset as I was initially and I knew that I needed to record everything I could to help others that were searching for guidance and information. If others were searching for help on the internet, I hoped that my blog would help them and hopefully even lead them to early treatment for their child. This is another BIG positive thing about 2013.  I have received so many messages and it makes me feel so good inside that I was able to do my part to help them...validation that documenting everything was the right thing to do.

So instead of looking at these things that happened in 2013 as bad things I look at them in a positive light. I am so fortunate to have my family...my mom, dad, sister and my grandmother and extended family. I feel beyond blessed to have my husband by my side and my three sweet babies. I look forward to 2014... to celebrating Alice's 1st birthday and I pray that things continue to progress with Alice and that she will not need any more surgery. As long as things continue to go well, Alice will be able to remove her helmet permanently by the end of the summer and hopefully we can put this whole 'Alice in Cranioland' journey behind us. I look forward to making many more memories with my family and cherishing every moment I have with them.

Checking out the lights

Happy New Year everyone!!!

Monday, December 2, 2013

Motherhood and decisions

Being a mother is such a blessing and so rewarding, I love being a mother to my 3 babies. Until you become a mother, you just have no idea how much your life changes. The way you look at the world and the decisions you make...everything is completely different. You worry about your children all of the time, about every little thing....and I think Alice's diagnosis and surgery made me worry even more. I look at Alice's head and worry constantly...terrified at the idea of her having to have another surgery. Worried that her skull isn't growing correctly. I have been nervous for weeks approaching her followup appointment.

Alice's first Thanksgiving

Today we saw Dr Magge in DC for Alice's followup. She is 4 and a half months post op. Dr Magge took measurements of her head today and her skull is progressively growing the way that is should...Thank goodness! He think she looks great and that she will continue to do well. Alice was a little older than most babies that typically have endoscopic surgery...but in his opinion, Alice had a milder case of Left Coronal Craniosynostosis. ..so that should help things. We were originally told Alice would be in her helmet for 18 months....or so we thought. ..but it turns out the we misunderstood Dr Magge! Alice will be in the helmet until she is 18 months old...which has her being out of the helmet next summer...woo hoo! That is excellent news considering we thought she would be in it until she was almost 2. So we are SUPER EXCITED about that and I expect a huge celebration that day! Praying that this whole Cranio experience will be behind us that day...

Alice at her appt today with her doll. A lady makes these dolls for all of the kids. They are wearing little hospital gowns....what a sweet thing to do!

For those of you out there that may have stumbled across this blog in hopes of making a decision between endoscopic surgery or CVR surgery for your child. I just want you to know how happy we are with our decision. I chose not to put my baby through a reconstructive surgery and I fought hard for this endoscopic surgery. I met a sweet lady that made up my mind for me on a cranio forum. She simply said...

" I don't know how much you have read about endo but it tends to have a shorter hospital stay and recovery period, less blood loss and although the helmet can be challenging most babes and parents get used to it pretty quickly. I don't know of any endo parents who wish they had done CVR but I do know some CVR parents who wish they had been able to do endo(myself included)."

This is what ultimately made my mind up and made me realize that fighting to the endoscopic surgery was what I needed to do. So I did....I fought, I cried, I waited , I cried, I got angry...but I won...lots of hard work on my part with the help of others but we got our baby the treatment she needed. A friend of mine said..."endoscopic surgery stops Craniosynostosis in it's tracks" and it does. I started to see my baby transforming right before the surgery. ...and I know that she would have only gotten worse if we had waited 6 more months for the larger surgery. Instead once the doctor opened that suture up and allowed the brain and skull to grow as it should...her deformation stopped....possibly preventing further problems such as eye problems, pressure on her brain, developmental problems etc. Please consider endoscopic surgery if your child is given that option....not everyone has a choice.

Snoozing on the drive home