Tuesday 9/01/09

What a GORGEOUS day...cool and sunny, perfect!!  September already???  Wow, summer did fly by, especially since we were so overly consumed with Thomas and his diagnosis of craniosynostosis.  We ventured out in the neighborhood for a nice walk, prepared to take on any looks or questions that were coming our way about Thomas' incision.  Although, when Thomas lays down in the stroller, you cant even see his stitches!  Brianna and Katie wanted to go down the street to the tree park to run around and climb in the trees.  A nice woman down the block did stop us to say hello.  Recently I had told her very briefly about Thomas' surgery and she really wanted to know how he was doing and what he had done.  She was pretty taken aback when I picked him up, but it was so great because she asked so many great questions about craniosynostosis....something she had never heard of!  Let's keep getting the word out!!  Please click on the following tabs to view pictures.

Sunday 9/6/09

It is such a beautiful morning!  I woke up early (thank you Katie....shouldn't there be a rule against toddlers waking up at 6:30 on a Sunday?) and really can't believe that two weeks ago we were packing and preparing for our trip down to Philly.  Tomorrow will be two weeks post-op!  Incredible how fast time can go.  Thomas is doing so great!  His swelling is all the way down and he is completely off of his tylenol.  Although his head is a little lumpy and bumpy, he looks amazing.  I am sure that it will all smooth out in time.  And, the incision looks fabulous! 

I realized, when looking through this website this morning, that there are not a lot of photos of Thomas pre-surgery.  It is sometimes difficult to look at pictures and see that there was anything "wrong" with him.  His saggital suture was prematurely fused, which caused his skull to grow only forward and back.  It gave his forehead a bit of a protrusion-type look and he had a slight bulge in the back of his head.  Therefore, when looking at him straight on, it was hard to even notice anything wrong.  I think that is why so many people were shocked to hear about his diagnosis.  If he was laying in his carseat or stroller, he looked perfectly fine!  It was only when I had him out and pointed out the shape of his head, especially looking from above, down at the top of his head.  It looked very narrow.  So, here are some pictures of Thomas from this summer, pre-surgery (click on the images to view the album).
Just one more note for today.  This morning, when I woke up, I grabbed a cup of coffee and came to my computer to check my emails.  There was an email from my friend Liz, a fellow Cranio Mommy!  She forwarded me a story from a woman named Kristine who lives by her in Toms River.  Her daughter had craniosynostosis and had surgery performed by Dr. Sutton at CHOP a few years ago.  Although Kristine knew from the moment her daughter was born that there was something "different", something "wrong", her doctors told her that she was being paranoid and that she looked like she did probably because of her positioning in utero and may even have facial paralysis.  Long story short, she trusted her motherly instincts and went against every doctor who told her she was nuts, drove down to CHOP to see Dr. Sutton and it was confirmed on the spot that her daughter had craniosynostosis (right coronal cranio) and would require surgery.  This is just another of many stories that I have heard where doctors are not informed!  That is why I am so proud of Thomas and all of the amazing people whom I have met through this journey.  Together, I am confident that we can get the word out there about craniosynostosis, so parents and pediatricians are aware and can make the proper diagnosis correctly and early in a child's life!!

Tuesday 09/08/09

What a GREAT day!!  After visiting Brianna's first grade classroom, Thomas and I took a quick trip into Manhattan to buy Katie an American Girl doll for her birthday tomorrow. 
Laura & Jorge Posada had their book signing for their new book, Fit Home Team, at the Barnes and Noble on 5th Avenue, just three blocks from the American Girl store.  I figured that if we could get in to the city quick enough, we would try to stop by and hopefully catch the tail end of the signing.  More than anything, I just wanted to say thank you to them in person for all of their efforts with the Jorge Posada Foundation, and all of their support of families affected by craniosynostosis.  Well, we arrived about 10 minutes too late.  The book signing was wrapping up and I was told by the slew of security guards that there was no way we were allowed back to see the Posadas.  Disappointed and after a lot of begging and pleading, I stood there with the stroller, thinking of a way to get to the table where Laura and Jorge were sitting.  I finally took Thomas out of his stroller and explained to a different security guard that I drove in from New Jersey to see the Posadas and say hello, that my baby had just had surgery two weeks ago and that I had told Laura on facebook that I would stop by and introduce her to Thomas, etc.  Long story short, after a lot of back and forth, the guard agreed to go and get Laura Posada's publicity manager.  She could not have been a nicer woman!  She escorted Thomas and myself back and personally introduced us to Laura and Jorge.  They were both thrilled to meet Thomas and were so interested in hearing about his surgery.  They are both two of most lovely and caring people I have ever met!  I quickly thanked them for all of their efforts with the Jorge Posada Foundation and told them how much I want to get involved, starting with becoming a mentor for another family faced with the unfortunate diagnosis of craniosynostosis.  A few pictures were taken....everyone loved the photo op of Laura holding Thomas!   We then got our books signed, Thomas and I thanked the Posadas and said goodbye.  I walked out of Barnes and Noble and was on top of the world!  It was such a great experience to obviously just meet the Posadas, but their interest in Thomas and his surgery motivated incredibly to get involved and try to make a difference.
 

Saturday 09/12/09

WHEW...what a week!!  In a nutshell, here it goes...
Monday was Labor Day and marked the end of a long and emotionally packed summer.  We had a great time at the pool with the kids...one last horrah!  Tuesday was the start of new beginnings, almost like New Years!  As you read in my last post, Thomas and I had the fabulous opportunity of meeting the Posadas at the book signing for Fit Home Team.  I sent Laura a personal message on facebook, telling her how amazing it was to meet her and Jorge and thanking her for all of her efforts with the Jorge Posada Foundation.  I explained to her how much I want to become involved with the Foundation, starting as a mentor for another family.  She immediately responded and told me how touched she was by meeting Thomas and how much she would love for the two of us to attend the JPF Heroes4Hope Gala in Manhattan on Thursday night.  I was so extremely honored and excited and thrilled about the opportunity!!  Woohoo!!

It was hard to think about the fund raising event right away because Wednesday was another BIG day in our household...Brianna had her first day of first grade!  It is so hard to believe that my big girl is already going to Franklin School!  She was so excited and really did a great job...I am so proud of her!
Wednesday was also such an exciting day because it was Katie's 5th birthday!  After dropping Brianna off at school, we went out for breakfast and then back home to make Little Mermaid cupcakes.  Katie is quite the baker!!  The nail salon was booked, so we had to put off our manicures and pedicures (our annual birthday ritual) for a day.  After two attempts of getting birthday balloons (the first bunch flew out of the minivan), we picked up Brianna from school and then went to play miniature golf with Ashley and Patrick.  We had to settle for a quick celebration in the backyard with singing and cupcakes.  But, the excitement didn't stop there because Granma and Granpa came over to wish Katie a happy birthday...which meant, time for presents!  Katie was thrilled when she FINALLY got the American Girl doll that she has been wanting for so long!! 
Thursday, Katie had her first day of school.  After I picked her up, we went to get our nails done.  At 3:00, it was time to put all else aside and try to pull myself together if I was going to make it into the city for the Gala.  I quickly showered, got dressed and tried to look as glamorous as realistically possible!  After a lot of persistence, Liz finally got tickets for herself, Mikayla and her husband Mike to attend the event, so we planned on driving in together.   It is really so amazing how we had never even seen one another in person, yet once we met, it was as if we were old friends...our little angels have brought us together!  Rather than bore you with the details of getting there, let's just go right into the evening.

THE JORGE POSADA FOUNDATION, HEROES 4 HOPE GALA, Benefiting Children & Families Struggling with Craniosynostosis

Although it was quite overwhelming arriving with Thomas to such a big event with more than 650 people, it was so wonderful to be welcomed with such opened arms!  Everyone who works for the Jorge Posada Foundation was so helpful and so nice and all of their hard work for the event was very evident and certainly paid off.  From the instant we walked in the door, we met incredible people!  Ok, I will admit, I was very awe struck and had my hawk eye out for Derek Jeter, Bernie Williams, or any other famous Yankee or celebrity.  Cocktail hour was well underway, so I wandered the room, ooh'ing and ah'ing at all of the auction items that were sure to raise a ton of money for the Foundation!  As I walked around with Thomas out of his stroller, I was so amazed at how many nice people went out of their way to introduce themselves to me and ask about Thomas and his surgery and then to tell me about how their family had been touched by craniosynostosis.  The network, the family, the people who were so happy to share their stories....it was all so inspiring and heartwarming!  I felt so at home and was so incredibly motivated to get involved with this Foundation, and work for such a great cause.  And to meet the children who were there, so happy and so excited to be with their families and with the Posadas....all so awesome!  I never imagined that I would have the opportunity to talk with people who knew so well what we had just been through!! 
I walked into the VIP room (as if I belonged there), again awe struck by the people....this time, the baseball players, the photographers...WOW!  Ok, I let it get the best of me a bit and somehow managed to get a quick photo of myself with CC Sabathia AND Derek Jeter!!  Woohoo...being the die-hard Yankee fan that I am, this was really, really cool (wait until my dad sees these pics!!).   I felt like the whole thing was a dream.  Then, I spotted the nice woman who I had met at the book signing on Tuesday (of course I couldn't remember her name), the publicity manager for Laura and Jorge Posada.  She recognized me right away and instantly led Thomas and myself across the room to see the Posadas.  I was so, so excited to finally get the opportunity to see them both again and to thank Laura personally for inviting Thomas and myself to the Gala.  She had a big smile on her face and instantly grabbed Thomas to say hello.  Then, the cameras started snapping all over the place!  It was like a scene from being on the red carpet in Hollywood!  I guess with Laura's beautiful smile and Thomas' incision across his head, the moment screamed "Photo Op!".  The next couple of minutes were a complete blur....then Laura handed Thomas back to me, said thank you and both she and Jorge gave me a kiss on the cheek and told me how happy they were that we were able to be there.  They were thanking me???  Wow!
After nursing Thomas in the Ladies Room (while chit-chatting with Laura Posada, as she touched up her make-up), I made my way into the ballroom.  The event honored the 20 greatest living Yankee catchers and they were announced into the room as I found my way to my seat, next to Liz, Mike and Mikayla.  This was all so cool... 


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The Posada Family (Jorge, Laura, Jorge Luis and Paulina) welcomed the guests and spoke about the Jorge Posada Foundation.  Laura spoke about their son, Jorge Luis, and how he was diagnosed with craniosynostosis when he was only 10 days old and since, has undergone eight major surgeries to correct the condition.  Because of their family's experience with craniosynostosis, the Jorge Posada Foundation was born.  "The Foundation is a global vessel for change and hope in the area of craniosynostosis.  It provides emotional support to families, as well as financial assistance to underwrite a portion of the costs of initial surgeries.  The Foundation strives to create awareness about craniosynostosis through educational outreach efforts".


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The special guest of the evening was Dr. David Staffenberg, chief of Plastic Surgery at Montefiore Medical Center and Surgical Driector of the Center for Craniofacial Disorders at The Childrens Hospital at Montefiore in The Bronx.  Dr. Staffenberg works very closely with the Jorge Posada Foundation and spoke about how the incidence of craniosynostosis might be more common than originally believed, due to the underdiagnosis and misdiagnosis on the part of doctors.  This all stems from the lack of awareness about the signs and symptoms of the condition!!  So many parents feel that there is something "wrong" with their baby's head or their facial appearance, but finding information about a diagnosis and guidance is a challenge.  I have heard so many heart wrenching stories where a mother has been told that their baby is fine, it is just your imagination, the problem is not even a problem, it may just be a cosmetic issue and nothing to worry about.  Early detection and treatment is so, so important!!

During the live auction and dinner, Thomas and I sat at the table and met so many incredible families who have been touched by craniosynostosis and people who work in support of the condition.  One story was more amazing than the next!  Children never cease to amaze me!!  And, it was such an honor to share Thomas' journey with others.  The highlight of the evening was when the NY Yankees catchers were honored, being escorted on stage by the craniosynostosis children, the Foundation's Heroes and Ambassadors.  It was really adorable and touched my heart to see how proud not only the kids were, but their families as well.  Next year, I am hoping it is Thomas up there on stage too!!

After a LONG night, we decided to leave before the night was fully over (yes, we missed Jon Secada).  Looking around, I knew it was late because every little person was sleeping on someone's shoulder.  I wished that I could do the same....what an exciting and exhausting week!!!  Thank you so, so much to Mike and Liz for driving into Manhattan and for getting Thomas and me home safe and sound.


Monday 09/14/09

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Well, it is hard to believe that I would have more to say after the last post, which was very long and exhausting!  But, I was sitting here and thinking about my dad and just felt the need to share my feelings.  A couple of weeks ago he was diagnosed with prostate cancer.  He kept the news from me initially because of everything we were going through with Thomas.  He wanted to be sure that our homecoming was as peaceful as possible and therefore, did not tell me the news until the following week.  I felt as though my world was coming crashing down when I heard the words "Dad has cancer"!  My dad is my absolute hero and hearing that he is sick broke my heart into a million pieces!!  I know deep down that he will be ok...he has to be!  Plus, we are fortunate that he was able to get an appointment with a world renowned surgeon from Sloan Kettering in NYC.  Men fight and beat this type of cancer all of the time and he is going to be in the hands of the best of the best!  It just makes it that much worse when it is your own father. 

I am posting this about my dad Tom (Thomas' namesake!) in hopes that you keep him in your thoughts and prayers.  Thank you and I love you Dad!!!!  xoxo


Friday 09/18/09

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Thomas is four months old today!!  It is so hard to believe that my baby is growing so fast!  His smiling, cooing and laughing are the most adorable things ever and it is all so contagious!  This really is a fun age...he is such a LOVE!!

Yesterday, Laura Posada posted on her facebook page the most incredible slideshow from last week's fund raising gala.  The photographer, Tomas Flint, did such an amazing job capturing the phenomenal energy of the evening in his photographs.  The slideshow was so well put together and made me cry....maybe it was the music that he picked to accompany the pictures, or maybe it was when Thomas flashed up on screen.  The images of the back of his head with his incision and the way that the Posadas were looking at him....oh geeze, here I go again!!  I know I have said it many times before, but I feel so honored to be a part of such a fabulous organization.  My mind has been working in overdrive, coming up with so many great ideas in how to get involved in fund raising efforts, the mentor program, etc. all for the benefit of families who are faced with craniosynostosis.  Please take a minute to view Tomas Flint's slide show when you have a moment...it really is great!  http://slideshows.flintweddings.com/posada/

One last note, it was so much fun seeing Liz and her adorable twins Mikayla and Mikey today.  Even though it was a brief visit at the rest stop on the Garden State Parkway so I could get my cell phone that I left in her car, it was really great to catch up a bit in person rather than just on facebook or the phone.   QT with a fellow Cranio Mommy!!


Thursday 10/01/09

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Wow...October 1st!  I am sorry that it has been so long since my last post....I guess I have been busy!!  School is underway and the girls are happy, which is great.  We have been lucky with the weather, so it has been really nice walking in the morning.  Pushing the double stroller, I drop Brianna off at school and then walk to Presbyterian and drop Katie off at school and then Thomas and I walk home.  He usually takes his morning snooze in the stroller and I get in a little exercise!  It is amazing what walking also does for the mind.  I have had the opportunity to throw around a bunch of ideas for fundraising events (more to come on that soon!!) and am really excited to continue in getting the word out about craniosynostosis and also raise funds for Thomas!!

We were even able to get down to the beach to visit Joe's mom, which was wonderful!  There is nothing better than the beach in September....we even brought Teddy for his first swim in the ocean, which was such a treat for him!  Click on the photos below to see some cute shots of the girls enjoying the day.


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Thomas had his four month check-up with the pediatrician on Tuesday.  Dr. G said that Thomas really looks great and that his incision is healing nicely!!  At 15 pounds, 3 ounces, he is a happy and healthy little baby boy!  I did ask him about the small "ridge" on the back of his head which has concerned me a bit.  He seems to think that it is all in the healing process and is most likely nothing to worry about.  We drive down to CHOP next week for our post-op visit, so Dr. G said that the surgeon would tell us for sure if it is normal healing or something to be concerned about.  Almost all of Thomas' stitches are gone!!  I was wondering when they would start dissolving and they really starting "falling out" one after the other...some with a little help from me!  His incision really does look fabulous and he is even starting to grow some hair, cute little blonde fuzz.

Last weekend we drove down to Toms River for a visit with Liz, Mike and the kids.  It was so much fun to get Thomas and Mikayla again!  Also, we loved seeing Mikayla's twin brother Mikey (lots of energy in those two little ones!) and meeting Liz's daughter Megan.  Brianna and Katie had a great time, as they always do, especially getting into Megan's dress up clothes!  And Liz, who claims she does NOT cook, even whipped up a delicious recipe from Laura Posada's Fit Home Team book...very yummy!  I know that I have said it many times before, but tragedy in our lives has brought us together and an amazing friendship has been formed.  I really am looking forward to working with Liz on her fundraising event and also with her newly formed support group, Cranio Families Support Group of New Jersey.  And there will be nothing better than watching our beautiful cranio babies grow up together!

One last small note.  I am excited because tomorrow morning I am meeting a friend for coffee.  Karen and I met during our yoga teacher training last summer and she found out about Thomas and his diagnosis of craniosynostosis the day that we were packing up to drive down to Philly for surgery, on August 23rd, my birthday!  What is amazing is that her son had the same surgery to correct sagittal synostosis, more than 10 years ago!!  Karen just happened to see a post on my facebook page about Thomas and she instantly called and emailed me!  I was so touched at her emotional outreach to me and was also upset that she and I had not connected sooner (it would have been great to talk to her in preparing for Thomas' surgery).  So tomorrow it will be so fun to get together and talk and compare stories.  She can't wait to meet Thomas!  I am also excited to pick her brain a bit about my thoughts on my fundraising event.  I will be sure to fill you in on our morning together.

Friday 10/02/09

Just a quick post to say that I had such a great time with Karen this morning!  She was so sweet to have us over and she was thrilled to finally meet Thomas.  He definitely touched her heart and filled her head with memories of her Jack when he was a baby.  She told me all about her story and Jack's surgery 14 years ago.  It makes me so happy that I have created this website about Thomas' journey because so much was really a fog to Karen and she had a hard time remembering some of the details.  I loved looking at all of her pictures that she got out to show me!!  Jack had the same type of craniosynostosis as Thomas, fusion of the sagittal suture.  He had surgery as a baby and his incision went straight from the back of his soft spot all the way down to the back of his head...no zig-zag, from ear to ear like Thomas.  She was amazed as she remembered that Jack went home from the hospital the day after surgery!  It really is neat that Karen and I have connected on a different level and have more in common than just being a fellow yogi!  I picked her brain about my fundraising idea at my friend Gina's yoga studio.  She absolutely loved it and has offered to help me plan the event.  I am really excited to move forward with everything and love that she was so happy with the idea.  Thank you so much Karen for such a nice morning!

On a different note, I drove my Mom and Dad home from the train station today, after they came home from being in New York City for the day.  This morning, Dad had a doctor's apointment with a surgeon about his prostate cancer.  He is evaluating the option of having the sugery done robotically.  In a couple of weeks, he meets with the surgeon from Sloan Kettering, who will examine his diagnosis and go over his method of surgery with him.  That option would involve completely removing the prostate.  Please keep Dad in your thoughts and prayers.  No matter which route he chooses, surgery will probably be between Thanksgiving and Christmas.  I am so happy that we live so close and that we can be here for him and my Mom.  Dad, you are the best...I LOVE YOU!

Thursday 10/08/09

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Yesterday was a big day!  We drove down to Philly for Thomas' follow-up appointment at CHOP.  Knowing that we were only scheduled to meet with the nurse practitioner, I called down to be sure that Dr. Sutton would be there, just in case we had any questions and/or issues.  Thomas has been doing so great and healing incredibly well and looks fabulous, but there is always that one little itty bit ounce of "what if?" that has been settled in the back of my head.  So, needless to say, I knew that I would be very happy and have peace of mind once we got a positive report from the neurosurgery team.  After a quick and uneventful drive down to Philly (thank goodness), Joe and I had lunch in the hospital's cafeteria, believe it or not.  Sitting there and eating while I nursed Thomas was really a bittersweet experience.  I was so happy that are finally on the other side of the craniosynostosis surgery, but was also so sad as I looked around at some of the other people there, obviously in the hospital for much different reasons than ours.  I count my blessings every single day!!

The waiting room was packed, which gave me the sense that we would be there for awhile.  We were fortunate because Dr. Sutton happened to walk past and caught our eye.  I think he caught the sight of Thomas' head more than anything, but he did come over to say hello.  He commented, "wow, what a great looking head!".   With the amount of surgeries that the doc performs every week to correct craniosynostosis, I am not sure if he actually recognized Thomas seven weeks later, but it was comforting that he took a minute to look at his head and feel around the sutures with his fingers and examine the incision.  He was thrilled with how Thomas looked!  I asked him about the bumpy ridge on the back of his head....his comment, "what bump?".  And with that, he gave us a quick smile and walked away.

We finally made it into the examing room to meet with Deb, the nurse practitioner.  Her face said it all as she walked into the room!!  She could not believe how fabulous Thomas looks!  She really was so happy with the shape of his head and how nicely the incision is  healing.  Only one last scabby area on the top of his head to go and then Thomas is stitch-free!  She told us that the incision line would be a little red for up to six months, thanks to his nice fair Irish coloring.  But heck, who cares about that?!  She felt around on his head, just as Dr. Sutton had in the waiting room.  She informed us that so many "cranio babies" have lots of lumps and bumps, but Thomas felt great!!  I asked her too about the little bumpy ridge in the back of his head and she agreed with Dr. Sutton that it was nothing to worry about.  I guess any little thing will set off my radar now! 

Deb went over Thomas' operative report with us, which may as well have been written in Chinese because I could not even begin to understand a word of the medical jargon that Dr. Sutton dictated in the operating room.  I asked that she explain to us EXACTLY what Dr. Sutton did during surgery to reconstruct Thomas' skull.  She drew a diagram of all of the doc's cuts into the skull and how they were strategically done to create a sagittal suture (where it had prematurely fused) and make the other sutures larger.  I couldn't believe that everything she was telling us was typed up neatly in a half page report!  The surgeons are absolutely amazing in what they can do.  And it still blows my mind everyday when I look at the new shape of Thomas' head....incredible!!  It is especially incredible when I compare how he looks now to pictures of him pre-surgery.

We asked a lot of questions about what to expect from this point on with Thomas.  Deb explained to us that our job is to really just keep a very good eye on the shape of his head, as he gets older.  She said that she does not want to see any protruding forhead or bulging football-like head in the back!  If we have ANY questions or concerns or thoughts about anything, we can call her directly.  We can't take any chances.  And yes, there is the very small possibility of the suture re-fusing.  She has only seen it happen a handful of times ever, but it can occur.  My little guy is a fighter  and I am confident that we won't have to go down that road of another surgery, but we do have to be aware.  What's next?  We go back down again in four months for another check-up.  So far, soooo good!!   I am so, so proud of Thomas for being such an incredible baby during the past few months...he is my little angel!


Saturday 10/10/09

I received an email the other day that I really want to share.  It is from a woman who visited Thomas' website.  Here it is:

HI,
Thank you for posting your blog to the CAPPS  post, I have read it and am so happy for your son, he is beautiful.  Hutton will go for his CT scan this Thursday and I am still a wreck.  I am so glad you showed pictures of the surgery, it helps to see what I am going to be looking at in a couple of months.  He turned 3 weeks old yesterday and I still cannot believe we are here.  I can't really stop crying and I know that the hormones are really adding to my mess of a self.  Thanks again, hopefully Huttons CT scan will go as well as Thomas'.  
Amanda

I am so incredibly happy that I have touched someone and hopefully have helped, all by sharing our journey with craniosynostosis.  I emailed Amanda and am hoping that she will keep in touch with me and call me, because talking about Hutton's upcoming surgery will help her so much.  My mission of touching even just one person has been accomplished!!

Thursday 10/29/09

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It has been a few weeks since my last post...I apologize!  So much has happened in these past weeks too...I have been busy, as usual, and feel that there are never enough hours in the day.

Before I start to write about what is going on with our lives, I want to mention that today a sweet little boy named Eric, who is three months old, is having surgery to correct craniosynostosis.   I connected with Eric's mom Amy through Facebook after she read Thomas' website (they live down in Maryland at the Air Force Base).  She is anxious and scared and it made me so happy and so proud to be here for her, to answer her questions and offer her moral support.  Surgery is scheduled for 8:30 this morning, so I will be keeping Eric, Amy and their family in my thoughts and prayers.  I will be sure to add an update on how the sweet little guy is doing.

I have kept in contact with Amanada on Facebook.  She too is feeling as we all did in the weeks before surgery...the waiting is so hard and so emotionally draining!  Hutton had his CT scan and bloodwork and he is doing great.  I am hoping that I can continue to answer any questions that she may have about surgery and post-op.   Our cranio babies are just so amazing and so incredibly adorable!  With Amy and Amanda's permission, I will post pictures of Eric and Hutton and keep you updated on how they are doing.

I really am amazed about the people who I have touched through this website!  I am so honored to be making a difference.  Heidi, who is from the United Kingdom, contacted me after reading Thomas' story.  Her son Josh had surgery in 2007 to correct sagittal synostosis.  He is now awaiting surgery in perhaps December or January to correct the fusion of his metopic suture, which fused after his initial surgery two years ago.  Hearing  this broke my heart!  One surgery is hard enough for any mother and baby, but to go through it all again two years later?!  I am sending lots of love overseas to precious Josh...what a trooper!!       

Well, on to Thomas.  He is continuing to do amazingly well and healing beautifully!!  He turned five months old on the 18th.  I know I have said it before, but time goes so, so fast!!  He is thriving and is such a happy little boy...that little toothless grin and chubby cheeks is enough to melt anyone's heart!!  His hair is starting to grow, which makes his scar a little less noticeable.  It is still pretty red, which the nurse had told us is very normal, especially with his fair skin.  I started feeding him baby food, which has been a lot of fun and a nice break from all of the breastfeeding.  Brianna and Katie love to help feed their brother!  He still has no interest in taking the bottle, which, I know from experience is far from the worst thing in the world!  All in all, I am really enjoying my time with Thomas.  I have put so much on the back burner (yoga, paddle, etc.) so I can savor these times with my baby, and every minute has been so worth it!!

My dad met with Dr. Scardino this past Monday and has his surgery scheduled for December 15th.  I am so thankful that he has found such an amazing surgeon and I am confident that he will be in the best hands!  And it makes me so happy that I am close, so I can be here and help both he and my mom with his recovery.  It is bittersweet to know that the date has been set...I am anxious for this to be behind us and for my dad to be on the road to recovery!  We love you so much dad!! One thing is for sure, I have my fingers crossed for 2010 to be the year filled with GOOD news!!

LET'S GO YANKEES!!!!  It is so exciting that we made it to the World Series!  It has been a long time coming and as every big fan feels, we are long overdue!  I like to think that Thomas has brought them a little bit of good luck this year, in meeting Jorge Posada.  I kind of had a hunch that we would all be wearing our Yankee gear in October this year.  We may be down one game to Philly, but I can feel it that we will come back with a vengeance, win game #2 tonight and then on to Philadelphia this weekend!  I know that all of our friends down at CHOP are wearing their red from head to toe right now, but sorry everyone, this year it is all about pinstripes and the Yanks!!!

One last note, I am in the beginning stages of planning a fundraiser for Thomas at my dear friend Gina's new and beautiful yoga studio in Cranford.  The event is an effort to increase awareness of Craniosynostosis, as well as to raise monies for Thomas and expenses incurred during his surgery this past August.  There will be several items which will be raffled and auctioned during a wine and cheese reception following the yoga class.  The reception will be open to people who are interested in coming to support the event, but not necessarily taking the yoga class.  At this time, I am still working out the details and have to work pretty quickly with the planning, but I can safely assume that with friends and family, the turnout will be quite favorable.  Lots more on this to come once I am able to confirm a date, time, etc.

Happy Halloween!  Ok, is it just me, or is this holiday one month long celebration?!  The fall leaves are still pretty and I have been out and about with my camera.  I will be sure to continue to post some fun pics!  Click on the tabs to view the pictures below.


Thursday 11/05/09

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THE YANKEES WIN!!!!  After a long season, a lot of games watched and many very late nights during the post season....the Yankees are 2009 World Champions!!  Woohoo!!  It really feels good this morning to be a Yankee fan!  Deep down, I knew that Thomas meeting the Posadas, Derek Jeter and CC Sabathia would help to bring the team good luck.  Plus, my little fans' Katie and Brianna slept with their Yankee shirts under their pillows every night that the Yankees played during the post season.  It's been a long time coming!  Now, if I could only figure out a way to get into the city tomorrow with all three kids, in the blustery cold for the ticker tape parade!  hmmm....


Wednesday 11/18/09

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My baby is six months old today!!  It really is just so hard to believe that in another six months, Thomas will be one!  People say all of the time that "it goes so fast"...it could not be more true!  I am so thankful that I have the opportunity to be home with him as much as I am.  I am a very lucky Mommy and savoring every precious moment that we have together!  And a day does not go by where I am not amazed by how he has recovered from his surgery.  His hair is really starting to come in (well, at least for him) and his scar is continuing to fade.  I recently have found out from a couple of my fellow cranio friends about a procedure called "scar revision".  This is when an additional surgery is required on the scar, which has widened and sometimes become deep...aparantly something that is not that uncommon after craniosynostosis surgery.  The fun never ends!  Now, of course, I have become obsessed with Thomas' head once again, staring at his scar everyday, especially when he is nursing.  He does look fabulous and as I mentioned, his scar is fading so nicely, but there are just two spots by either ear where the marks are much wider and redder than the rest.  I am guessing that it is nothing to be alarmed about....just a little something to add to our list of questions for our next follow-up visit at CHOP.

I have been two weeks since I have posted an update on this website and therefore, I still have to mention that we once again were very fortunate to see Laura and Jorge Posada.  On Saturday November 7th, just three short days after winning the World Series, Laura and Jorge were at the Yogi Berra Museum at Montclair State University for a book signing of Fit Home Team.  Knowing that it would be pretty crazy with the buzz of the 27th World Championship still in the air, Joe and I decided to drive to Upper Montclair with the kids to attend the event and support the Posadas.  I was so excited to not only have Brianna and Katie there with me, but for the opportunity to see Liz, Mike and the twins at the event as well.  When we arrived at the museum, it was pretty much a mad house, as expected!  But, leave it to my good friend Liz to somehow manage to get the five of us to the front of the pack with them.  Both Laura and Jorge were so excited to see us and especially Thomas.  They were genuinely amazed at how fabulous he looks!!  As always, they were extraordinarily generous with their time and allowed me to take a fabulous photo of Brianna, Katie and Thomas with them (Brianna was so excited that she got to sit on Jorge's lap!).  A gentleman from the school newspaper informed me that he got a very good photo of my kids with the Posadas and wanted my permission to print the picture in the upcoming issue.  Of course I obliged and gave him the proper spelling of their names, as well as a few comments about the Posadas and their overwhelming support throughout our craniosynostosis journey.  We were excited to read the article in The Montclarion (click to read) online and are anxious to receive a copy of the newspaper in the mail.


Friday 11/27/09

Happy Thanksgiving!  We are home after a couple of fabulous days in Manhattan with Tim and Miche!  Brianna and Katie especially were so, so excited to spend two nights with their Uncles...they always have the best time and it brings out the kid in all of us when we are with them.  So fun!!  It was very bittersweet to not have my mom and dad there with us (they were down in Charlotte visiting Scott, Gracy and the kids), especially because I think that this was the first Thanksgiving ever that I was not with them!  Although, it gave Tim and me the opportunity to cook our very first Thanksgiving dinner together!  And, if I must say so myself, it was a huge, delicious success!!  I appreciate more than ever now all of the years that my mom cooked and cleaned and hosted our family at her house.  Coming home today really reminds me of how much I have to be thankful for.  I always love being with my family, but this year, with everything that we have been through and all of the challenges that lay ahead of us, I realize more than ever how much my family means to me.  And it is so important to me for Brianna, Katie and Thomas to understand and feel the love of family around them.  I am so thankful for the love that we share!!

In the season of Thanks and Giving, I have set up a new page on this website, called donations and fundraising.  Please take the time to visit this page and read the information that I have posted regarding craniosynostosis awareness and fundraising efforts.  I am forever grateful for the love and support that I continue to receive.

Saturday 12/05/09

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I am very sad this morning.  Yesterday we had to say goodbye to Jackson, which is one of the hardest things that I have ever had to do.  For anybody who knew Jack, there is no need to explain how amazing of a dog he was.  And for those who never got to meet him, he was the most incredibly loving, sweet and loyal black lab who just loved life and loved always being around people.  Jackson turned 14 years old this past summer and old age eventually took its toll on his tired, old body.  Yesterday morning, mom, dad and I took Jackson to the vet and Dr. Schaffer agreed, it was time.  It was so horribly devastating, but I stood there with Jackson as he went to sleep, my head next to his, hugging him and petting him and telling him how much we all loved him, and that it was ok to go, everything would be ok.  Saying goodbye to a pet is like losing a family member.  I had to go through the heartache again later in the day when I told Brianna and Katie that Jackson went to Doggie Heaven.  We cried together and talked about how much we love Jackson and then read an amazing book that talked about how wonderful Dog Heaven is and how happy and strong Jackson is there.  They knew that he was old and getting sick, so hearing how happy he would be, running around with other dogs made them happy too.  Going over to mom and dad's house is going to be really difficult, walking in and not having that big happy old guy greet us at the door with his favorite toy in his mouth.  Here are just a few pictures of the girls with Jackson that bring a smile to my face (click on the picture to view).  Love ya buddy!!

On a MUCH happier note....tomorrow is my dad's birthday, which is a great excuse to celebrate....and not to mention, bake a chocolate cake with Brianna and Katie!  I am so happy that he and my mom are home from South Carolina.  It is funny how much I miss them when they are gone!  The excitement in this family never stops though....when they were down there last week, my mom broke her ankle.  She was at a party, dancing, having a great time and whether it was the high heels or the wine....she landed herself at the doctor's the next day with a cast and crutches.  And of course, only to make it worse, it is her right foot, so she cannot drive.  Thank goodness for online shopping!! 

We will not be able to see my dad too much during the day tomorrow because we are going down to Lakewood for Mikayla's benefit Christmas party.  Liz has been working so, so hard, around the clock!  I admire how much she has done for her daughter...it is amazing!  She even has 8 craniosynostosis families attending, which is just so cool (even one flying in from Wisconsin)!  I am so anxious to meet them and hear their children's stories.  And I am honored to be attending with Thomas.  I will be sure to post an entry about the event, along with some great pictures. I am confident that it will be an amazing event and that Liz will raise a tremendous amount of money for her little girl.

HAPPY BIRTHDAY DAD...I LOVE YOU!!!

Sunday 12/06/09

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Today was a great day!  Liz' event for Mikayla was so fabulous.  All of her hard work and dedication paid off!  The attendance by cranio families was so awesome....seeing the strength in all of the kids and their parents is really amazing!  I am proud of Liz for raising so much money on Mikayla's behalf.  Click here to view a link with some photos that I took at the event.  I am anxious now to really work hard in organizing a fundraiser for Thomas after the New Year.  The love and support that we receive from friends and family is truly incredible!  PS, I love this picture of Thomas' scar, with his big sister Brianna resting her cheek on his head...so sweet!


Friday 12/18/09

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Happy 7 months old Thomas!!  Just a quick post to say that Thomas is seven months old today...amazing!  He continues to do remarkably well.  It is funny to watch him learning to sit on his own, wobbling around on his cute little tush!  With more hair growing, his scar looks less and less noticeable...it is incredible.  We are anxious to back down to CHOP in February for our next post-op check up with nurse Deb.  In the meantime, we will continue with our fun and anticipation of Thomas' first Christmas.

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Thomas meets Santa for the first time

Thursday 01/14/2010

My first post in 2010!  Well, let me start off by saying, Happy New Year!  I love a new year, as do most people....fresh start, new goals and desires.  This New Year in particular is one which I am very thankful for.  It has been a very eventful and emotionally draining six months for our family.  The shining light of 2009 was the birth of Thomas (in May) and his cousin Quinn Wooster (in July)....two miracles that make the year so special!  Thomas had a fabulous first Christmas and was very much in awe of the typical Christmas morning commotion and excitement (more so in all of the wrapping paper!).  Brianna and Katie were just so much fun and I can say that there is nothing better than enjoying Christmas with your little children....the innocence and sheer joy and surprise and happiness that they bring into the room is priceless!  It could make you forget about any worry in the world and fill you with more love than you thought possible.  I am so lucky for so many reasons.  And I am so unbelievably thankful that Brianna and Katie are able to spend Christmas with family.  There is nothing more important to me and to see them light up when my parents come over to our house on Christmas morning is really just incredible...warms my heart!  So many of my Christmas memories as a kid include my Grandma...I don't think that I can remember a Christmas without her.  That actually brings me to my first bit of sad news.  Last Friday, January 8th, my Grandma passed away at the young age of 93.  Grandma, GG, Hot Rod Helen, 80 Action, Go-Go Grandma....no matter what you called her, she was unbelievable!  Two daughters, four grandchildren and nine great grandchildren...her life was lived to the fullest!  She loved to bowl and play golf and go out for margaritas  with her friends.  And what an amazing and beautifully talented artist!  I will miss Grandma so much and I wish more than anything that I had had the opportunity to fly out to California so she could have met Thomas.  As much as I know she loved TJ (as she loved to call him!), she would really have fallen in love with her little great grandson once she got her hands on him!  We will all miss Grandma so much and are so lucky to have had such an amazing, strong and beautiful woman in our lives...she is my hero!!

Last Wednesday, January 6th, my dad had surgery for prostate cancer.  He was so strong and a great patient...everything went very well and after a couple of days in the hospital, he is home recovering.  Having someone you love in the hospital and undergoing surgery is scary enough, but when it is your own father, it is unbelievably heart wrenching!  I thank God for giving him the strength to make it through and as of his latest check with the doctor yesterday, he is officially cancer-free!!  I am so proud of him and so, so happy that he is taking such good care of himself and recovering so well.  With my mom in physical therapy for her ankle, we are all on track for a HEALTHY 2010!!

Our next appointment for Thomas down at CHOP is on the calendar....Thursday February 11th at 2:40 pm.  Our fingers are crossed for another fabulous report from Dr. Sutton and Nurse Deb!

Everyday, I continue to say prayers and send love out to all of my new cranio family friends who are facing the nightmare of surgery and for those babies who are home safely and recovering.  It makes me so happy to know that I can be here for them.

Tuesday 01/26/2010

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Good morning!  Here is a fun picture of Thomas that I took last week, when he was 8 months old.  It really does blow my mind that in another four months, he will be one!  He is at such a fun age right now....sitting up and thrilled with anything and everything that you put in front of him to play with.  He is always laughing and smiling and really just loves being around people, especially his two sisters (who constantly crack him up!).  He is eating like a champ and is finally starting to get a hang of feeding himself.  Most of the time, Teddy (our 100 pound, three year old lab) gets more in his mouth from what falls on the floor, but Thomas really is having a great time figuring it all out!  Now, if he could only master the sleeping thing, then I would really be happy!  Oh well, I guess one blip on the radar screen isn't too bad.

I have been saying prayers and sending lots of love out to LA for baby Hutton, who underwent surgery yesterday morning.  Amanda reported that everything went well and he is recovering now in the hospital.  She is such a strong woman and mother and talking to her on facebook and ready her updates about Hutton just brings me right back to being in the PICU with Thomas at CHOP.  Although she is one day closer to having this nightmare behind her, the healing process unfortunately gets worse before it gets better.  Sweet little Hutton will swell and bruise, but, the good thing is, the nurses will keep him so comfortable and it goes as quickly as it comes.  Plus, having his Mommy by his side is the best medicine of all!  Amanda will probably be going on autopilot the next few days, but before she knows it, she will be home with her baby and her other children and husband.  I have said it so many times before, it is absolutely incredible how quickly their little noggins heal and how their heads take on a new shape almost instantly!  I am happy that I was able to be here for Amanda, even from across the country in NJ.  Way to go Hutton!!

I received an email yesterday from a woman who owns an organizaiton called Westfield Moms Town, an online resource for all Westfield area Moms (they can exchange ideas, resources, and support and find deals from local businesses, etc.).  She is going to feature Thomas' story and his journey with Craniosynostosis in her next newsletter!  I am so excited that she took the time to read our story and is helping to raise awareness and sharing our website.  I will be sure to post a link to the article once it prints.

One last note....I am thinking about my mom, out in California.  My Grandma's memorial service was on Sunday and my mom is there for the week, helping her sister to clean out and pack up her house.  I can't imagine how difficult that must be, for her to have to say goodbye to her mother and then to stay alone in her house.  Love you Mom!!


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FAMILY YOGA! I couldn't help but share this amazing photo, that I love so much of me with my three little yogis! Look at Thomas' face...he is so happy looking up at his mommy!! Thanks Joanie for capturing such an amazing moment!
Click on the photos above to view more of Joanie's fabulous artistic work,
taken in her gorgeous sun-filled studio!

Thursday 02/18/2010

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Someone pop open the chilled bottle of Veuve Clicquot!!
 

Not only is Thomas nine months old today, but we drove down to CHOP and had the most fabulous meeting with Dr. Sutton!  Last week our appointment with Nurse Deb got cancelled because of all of the snow, so we were fortunate enough to be able to reschedule and meet with the surgeon himself.  Now remember, we hadn't seen Dr. Sutton since surgery day, when he approached us in the waiting room to let us know that Thomas was out of surgery and everything went extremely well, no surprises.   So,  Joe and I were both very anxious and excited to be meeting him for a follow-up with Thomas today, six months later!  We walked into his office, said hello and as Dr. Sutton came over to measure Thomas' head, he looked down and exclaimed, "WOW!!".  He was absolutely blown away by how amazing Thomas looks...his scar, the shape and smoothness (is that a word?) of his head, etc.!  He felt his head, examined the scar and confidently told us that it was one of the "best he's seen", as far as post cranio surgery heads go.  He called in a few other surgeons to take a look at Thomas' head (personally, I think to also show off his impeccable work!).  He then told us that since Thomas looks so great and is healing so beautifully, he was going to discharge him....we would never have to come back, "have a nice life!"!!  I cannot think of anything more incredible to want to hear from your neurosurgeon, "have a nice life!".  THOMAS WAS OFFICIALLY DISCHARGED, no need to come back in a year....WE ARE DONE!!!!!!!!!  This nightmare is finally over and behind us!!!  Now, let me just note that I did ask Dr. Sutton about the chances of the sagittal suture re-fusing, because that is something that has always been out there as a possibility of happening down the road.  He explained to us that yes, there is still a very slight chance, but he was doubtful that it would re-fuse.  It would be up to us to just keep an eye on his head and monitor the shape.  If at any time we were concerned, just give the doc a call!  And that was the end of it...yeah Thomas!!

We were also so lucky to meet a fellow craniosynostosis facebook friend in the waiting room today.  I recognized Beth immediately when I walked in with Thomas.  After leaving Dr. Sutton's office, I saw Beth again and approached her in the waiting room (yes, I am sure she thought I was just a crazy cranio mommy!).  It was great to meet her in person and put a face to a name....HUGE congrats to Beth and her beautiful daughter Kyra, who also got great follow-up news from Nurse Deb today and also was officially discharged.  Kyra is four months post-op (from sagittal surgery, as well) and looks gorgeous!!   What a great day!!! :)

Baby Thomas is not the only one to receive great follow-up medical news.  His Granpa Thomas also had an appointment in NYC earlier in the week.  His check-up with the surgeon and blood work all proved to be fabulous!!!  I am so proud of you Dad!! xoxo

Cheers to a great week!!!


Friday 03/26/2010

Wow!  I cannot believe that it has already been a month since my last post!  It has been a very eventful few weeks, to say the least.  The good news is that the massive piles of snow have finally melted and we are enjoying some gorgeous spring-like weather!   Thomas turned 10 months old on the 18th and he is growing up so fast.  In two more months, we will be celebrating his first birthday!!!  Truly unbelievable!!  He continues to bring absolute joy to this family every single day....I am very blessed for my three little angels!  Please click on the pictures above to view a few shots from the past few weeks.

When I first created this website on Thomas' behalf, my intention was to hopefully reach out to someone looking for help, for  a resource that they could turn to for information about craniosynostosis.  Perhaps reading our story would touch close to home and help a family get through the extremely difficult times involved with a diagnosis, the waiting, surgery and eventually recovery.  My goal was to reach at least one family, just as Liz reached me before Thomas had surgery last August.  Well, the response that I have received and the people that I have met, from all over the world, has been absolutely amazing!!!!  From overseas to even right in my own backyard in Westfield, people have contacted me, who have read Thomas' website and want to talk further about their own personal craniosynostosis journey.  Just this past month, I have personally spoken to several people via email and over the phone.  People who have just found out that their baby has that horrible C word that is so difficult to pronounce, and they are scared and confused with so many questions.  And others who dont know exactly the right path for choosing a surgeon....how can they make the decision about someone cutting into their little angel's skull?  Some wanted to know, what the heck do I pack for the hospital, or what can I even expect when I am in the PICU or finally make it home?  The internet and email is really a tremendous resource.  I have spoken to women who are in the PICU, exhausted and emotionally drained....is what they are seeing and how their baby is acting really normal or is something wrong?  I know that Thomas' sagittal synostosis diagnosis and surgery is not the same as every craniosynostosis case out there and there is such severity across the board, but if I can help emotionally and be a friend to someone, then I cannot ask for more!

One evening a couple of weeks ago, my phone rang at about 10:00 at night.  Which, if you have young children, you know is a big no-no, especially during the week!  Well, it happened to be a neighbor down the street.  She was calling because she has a friend, who has a friend, who has a friend, who has a brother, who's daughter was just diagnosed with something called craniosynostosis.  Through many conversations between many people, and several questions about "does anyone know anyone who may know something about this?", Nicole called me because Helene told a friend of her's, that she knows a woman who she grew up with, who also happens to be a Franklin School mom, who has a son who she thinks had the same surgery!  She created a website!  You should call her.....let me give you her number!   Long story short, a friend of mine read Thomas' website, listened to our story and learned about craniosynostosis....and remembered!  I did end up having a long conversation with the mom of the little baby girl who was diagnosed with craniosynostosis and it was wonderful to answer so many of her questions and help to guide her with the process of interviewing surgeons, joining groups online and via facebook and reading stories such as ours.  This story of reaching out goes to show that it is so important not only to educate people who are going through their own craniosynostosis journey, but other's who do not think they have anything to do with it.  You never know when a friend of a friend of a friend will need a little help!

I do have another story that I would love to share.  I received an email from a woman who had visited Thomas' website.  Her son Mason was also diagnosed with sagittal synostosis, just like Thomas.  Her path was very similar to ours, as she had interviewed a few of the same surgeons.  The difference was that Mason was now 6 1/2 months old.  That in itself dismissed the endoscopic route with Dr. Feldstein....Mason was too old.  As it turns out, Lorice lives in Westfield.  I could not believe that there was someone right in town who found me, who also was going through what we did with Thomas!  I told Lorice that I would love to meet her in town for coffee, to give her the opportunity to meet Thomas and see his head and the beautiful scar and to talk to me about our journey and any questions that she may have.  It would help tremendously to discuss her fears about what her baby was about to undergo!  Well, as it turns out, things moved along very quickly for Lorice and Mason ended up having surgery in Manhattan at Cornell.  While they were in the hospital, Lorice was able to keep in touch with me and give me updates on how they were doing.  It brought me right back to our time in the PICU with Thomas....it instantly felt like it was just yesterday when Dr. Sutton came to get us out of the waiting room to tell us that Thomas was out of surgery.   Mason's surgery went very well, his stay in the PICU was as expected, with all of the unpleasantness of throwing up, blood transfusions and IVs, the swelling and bruising, and he is now home and happy and recovering with his family.  I cannot wait until we do finally meet in person!  And it really is a small world, because after Lorice and I became "friends" on facebook, it turns out that she recognizes me from teaching yoga and taking prenatal classes at Satsang yoga studio in town.  I glanced at her pictures and yes, I completely recognize her as well!  Amazing....the last time that she and I saw one another, we were pregnant, with big, big bellies, taking a prenatal yoga class.  Who would have thought that our paths would cross again, in such a different and unexpected way than a downward facing dog?!

Saturday 03/27/2010

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After rereading my recent posts and after a lot of thought about craniosynostosis and what we have been through, I woke up this morning and have decided that it is my mission and my heartfelt desire to take this to the next level.  I am going to put more time and energy into helping others.  I want to take the website as a stepping stone, to creating other outlets of reaching out.  And through fundraising efforts, I wish to hold events, in order to help other families faced with craniosynostosis and to continue to get the word out there about the condition.  I honestly believe that things happen for a reason.  And perhaps what I have been through with Thomas was a blessing, for me and how I can give back to others.  More to come.....this is all very exciting for me!!  xo  


Tuesday 03/30/2010



Saturday 05/22/2010

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It has been close to two months since my last post and I am so sorry to everyone, including and especially to Thomas!  First, let me explain why the above entry for March 30th is blank.  After writing and posting on that morning, I was overwhelmed with people contacting me about what is going on in my life, mostly with extreme sympathy.  I took a risk and really dumped my emotional cup into my writing.  I think that I may have gone a bit overboard in what is going on with me personally (completely non-cranio related) and especially financially.  Yes, I am facing extremely difficult times right now and really am uncertain as to what the future holds for me and my beautiful children, but I don't want to use this website as an outlet for things in my life that I first have to face on my own.  I took a yoga class recently and the instructor was talking about how there is always a diamond buried deep in the pile of mud.  And no matter what you have going on in your life, you first have to search internally.  The diamond is there, shining brightly and waiting to be found.  I realize that in order for me to move on, I first have to make so many changes with myself.  And only I can do that.  Thank you to everyone for all of your love and support through these difficult times.  Yes, I continue to keep my head high and a smile on my face.  I have three amazing little reasons to make this life the best one possible! 

Last week we celebrated Thomas' first birthday!!!!!  It is so unbelievably hard for me to even think that a year has passed since my little love was born.  I know that people say all of the time that "time really flies"....amazing that a year has come and gone.  I guess when you are preoccupied with so much CRAP (yes, had to say it, sorry) in your life, you can lose track of the simple day to day which is so precious.  When Thomas turned one on Tuesday, as a gift to him, I promised to slow down and take more time and cherish every single moment and hug and kiss and tear that I can with Brianna, Katie and Thomas.  Yes, it is so easy to be distracted but the noise in your life, but at the end of the day, what is it that REALLY matters?

Laura, my absolute best friend in the world, threw Thomas a first birthday party last Sunday.  It was the most incredible day!!  The weather was gorgeous and honestly, she went so above and beyond to make the day extra special for Thomas.  My mom flew home from South Carolina, Tim and Miche and my friend Tiffany came out from the city, it was really awesome!  The only thing that would have made it more perfect, was if my dad were able to make it home from South Carolina and my brother Scott, Gracy and the kids from Charlotte.  Other than that, everyone had such a great time!  Especially all of the kids.  Tim and Miche's present to Thomas was hiring their friend Margot to come out with them to the party.  She is an actor, a mime, and dressed as a Fairy and spent more than five hours interacting and entertaining the children.  It was the most incredible thing to sit back and watch the amazement and sheer joy on their faces.  We adults still cannot get over the fact that there was not a single peep or cry or meltdown from any child the entire day.  And the birthday boy could not have had a better time, with his personal smash cake and all, compliments of Laura!!  Here are some fun pictures from the day that you can view by clicking on the photo tabs.  There were hundreds to choose from, so to take the time and see the rest, click on the following link from Shutterfly

Tuesday May 18th was Thomas' actual birthday and it was great to celebrate at home, especially on a cold and rainy day.  Thomas really does love life, especially now that he is crawling everywhere and discovering all of the fascinating ways to get himself in trouble, including climbing the stairs, splashing in Teddy's water bowl and pulling up to throw every single book off of the bookshelf (half of which fall straight on his head).  He is still the happiest little baby, and spends his day smiling and waving and chattering up a storm.  I am so blessed!  As you can see from pictures, he is still waiting to get more hair, but the blonde fuzz is getting thicker and starting to grow a little bit.  He has the cutest little bunch of hair that is growing along his scar that sticks up on the top of his head.  And of course I must mention that his scar looks so, so amazing!!  It really is incredible how beautifully he has healed!!  Ok, I can hear the little guy waking up so it is time for me to get this day going.  Again, sorry for not being as diligent as promised in my posts.  Promise to be back soon....

Tuesday 06/01/2010

Congratulations to Thomas!!  Thomas was voted Cranio Kid of the Month for June by the CAPPS (Craniosynostosis and Positional Plagiocephaly Support) Organization.   His adorable picture and bio are featured on the Jorge Posada Foundation website (article posted below).   I am so excited for my sweet little boy, especially after celebrating his first birthday.  Also, this is another great way of getting the word out about his website and spreading awareness of our craniosynostosis support. 

Cranio Kid June 2010
Congratulations to Thomas Joseph Phelan

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Thomas Joseph Phelan was born on Monday, May 18, 2009...a healthy and beautiful
baby boy! We were so thrilled and I instantly fell in love, as did his two big sisters! On
June 4, 2009, at a routine four-week doctor?s check-up, Thomas was suspected to have
Craniosynostosis and referred to a pediatric neurosurgeon. This was the first day of our
journey and the nightmare that we would face!  For the weeks that followed, I was overly consumed with finding out as much information as possible about this “C” word. I spent countless hours and days  researching Craniosynostosis and interviewing pediatric neurosurgeons in the area, all of whom were extraordinarily qualified and informed on the best way to treat Thomas? condition. On August 24th, at three months of age, Dr. Leslie Sutton at the Childrens Hospital of Philadelphia (CHOP) performed surgery to correct Thomas? fused sagittal suture. Thomas spent four long days in the PICU with the most amazing nurses in the world caring for him. He has healed beautifully and in February, at his six month postop visit with Dr. Sutton, he was fully discharged and told to “have a nice life”. Dr. Sutton and his surgical team were unbelievably thrilled with how amazing Thomas? head and scar looked. We just celebrated Thomas? first birthday on May 18th and it was a time to smile to reflect back on our amazing journey with Craniosynostosis. As a gift to my angel Thomas, I created a website on his behalf (www.thomasjoseph.weebly.com) and continue in my efforts to reach out to other families who are facing what we did last year. Craniosynostosis has changed our lives and the people who we have met along the way, and continue to meet everyday, will always hold a special place in my heart.
 


Monday 06/28/2010

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Welcome Summer!!!  A few events since my last post, including Thomas' Baptism on June 13th.  Better late than never, I guess!  He was so funny in church, laughing, smiling and chattering on like he does.  When Rev. Roberts touched the top of his head with the water, the look that Thomas gave him made the entire sanctuary erupt in laughter, which Thomas responded to with letting out a nice, loud cry!  It was so cute to just look at the look on his face, "what the heck is going on Mommy?! and why is this dude in the long black robe getting me all soaking wet?".  Anyway, it was a very special moment for my family and me.  And although his God-Daddies Tim and Miche and his Godmother Laura could not be there with us in church, they were there in our hearts.  Laura, Shawn, Ashley and Patrick were able to meet us that night for dinner with my Mom to celebrate Thomas, which was a lot of fun, especially for the kids!  Here are some cute pictures of Brianna, Katie and Thomas from after the service (click on the tabs below to view the pictures).

It really is amazing when I look at Thomas in these pictures.  I see him all day, every day and I know that his scar is there and is slowly being covered by his cute little blonde hair that is coming in, but now I can really see how amazing it is that you really cannot see any indication that he had major reconstructive skull surgery last August!!  He continues to be my little inspiration that you can overcome major obstacles in your life and keep a sweet smile on your face!  I am so proud of my little angel.

School is finally over and summer fun has begun!  Brianna and Katie both had fabulous years and made such amazing friends.  They have had the best time at the pool already, enjoying the water slides more than anything!  It will be fun to see them develop new friendships throughout the summer months at their "new pool".  Thomas has already met a couple of friends in the baby pool....all girls, of course!  Hey, we Cranio Mommies know the saying very well..."Chicks dig scars!".  He certainly has turned on his charm with the ladies in the baby pool, showing off his two new top teeth that are quickly making their decent.  We are off to South Carolina tomorrow for a very needed and well deserved trip to Colleton River with my parents for the Fourth of July.  For those of you who know me and my camera passion (or obsession, really), I will be sure to be posting a ton of new, fun photos from our trip...cant wait!!!

Just a quick little shout out to all of the Cranio families out there whom I have met through this website and on Facebook.  Good luck on all of your upcoming surgeries.  Stay strong and as horrible as the waiting and anticipation may seem, you will be on the other side of this horrible nightmare before you know it!!  Our little cranio babies are so unbelievably brave and strong and you will be amazed how incredibly well they do!!  I am here for you for support at anytime!  Lots of love and prayers to you all!!

Sunday 08/15/2010

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Wow....ok, so much for my diligence in keeping up with Thomas' website this summer!!  Instead of apologizing to everyone wondering how we are doing and asking why I have not updated my posts, I will just promise to do a better job in my future efforts.  In three days Thomas will be 15 months old.  And in nine days, we will be "celebrating" his cranio-anniversary.  I am not sure if there is really such a thing, or even something to be celebrating, but a year ago today, I was doing my last minute preparations in the week before the scariest and hardest day of my life.  So much of it seems like such a blur, very similar to when you wake up in the morning and try to remember the vivid details of the dream you just had the night before.  I guess that I should be thankful that I did document our journey and create this website on Thomas' behalf.  Don't get me wrong, there is so much that I still pray will be erased from my memory, but without this resource, I would not have the opportunity to look back for my own sake, as well as reaching out to help others.  I encourage anyone who is going through the horrible and scary times of craniosynostosis surgery and recovery to please take the time to make these "memories".  I am not necessarily saying that you have to create a website like I did, but please try and find the time to take pictures, jot down your thoughts and feelings and what happened with your child, before and after surgery.  You never know when you will be able to help someone else out!  You would be so surprised the things that we forget.  Even with my poor efforts in keeping up with my writing the past couple of months, I have been contacted more than a handful of times this summer by people who have found our website and read our story.  They are all so unbelievably thankful to have had a resource that is personal and heartfelt and really hits close to home, making them not feel so alone with so many unanswered questions.

The other day when I was giving Thomas a bath, I got a glance of his wet head and scar that instantly took me back to our few days at CHOP.  For some reason, a flashback hit me like a ton of bricks!  Do you know when you are watching one of those programs on TV, and when a character gets a sudden and crystal clear memory replay of a past event and it makes even you the viewer feel as if it had just happened?  Weird, I know, but instantly, there I was, a year ago, at Thomas' bedside, covered in blood and spit-up and exhausted from crying and lack of sleep, just holding his hand and watching him sleep, looking down at his incredibly sore and swollen head.  And the whole time always wondering, "why Thomas?".  I felt paralyzed in my thoughts for a few short minutes that seemed to last forever!  Today I watched a video on Facebook that was posted by Laura Posada.  Jorge was being interviewed, talking about his life with the Yankees and his role as a husband to Laura and father to Jorge Jr. and Paulina.  He then spoke about Jorge Jr. and their families' journey with craniosynostosis, which finally led to the creation of The Jorge Posada Foundation.  During the interview, Jorge said that his son was sent to them from God for a reason and that he "taught me how to be tough!".  I think that is the feeling that I have been trying to express to myself and put to words for the past year!!  Thomas has given me the strength as a Mother that I never even imagined was possible!  Friends would always ask me how I ever survived, how I did what I did and even now, with all of the hardship that I am facing in my life....how do you do it all, and with a smile on your face?  I gained so much from Thomas and I feel so blessed for the gift that he continues to give me every single day!  And the faint scar that runs zig-zag across his head, from ear to ear, is a subtle reminder that I have three beautiful and healthy children and with them and their love, I can overcome the obstacles in my life, even with keeping a smile on my face.  Because, I am a PROUD and strong Cranio Mommy!!!

On a completely different note, I know that people are always amazed with how fabulous Thomas looks.  And, the comment that I get most from people is something along the lines of, "Wow!  You can't even tell that he ever had anything wrong!".  With that, I just keep my comments to myself, smile and say "thank you!".  For you other Cranio Mommies out there, here are some pictures of Thomas that are taken at different views and will hopefully give you a sense of the amazing shape of his head.  Just click on the tabs to see the pictures in larger view.

PS, Thomas took his first two steps today! Yeah Thomas...let the walking FINALLY begin!


Tuesday 08/24/2010

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As I sit here and write this post, I am so completely overwhelmed with emotion!  Today is the one year anniversary of Thomas' Craniosynostosis surgery!!  It really is a bittersweet feeling...there is such a big part of me that is rejoicing and celebrating what we have been through and that Thomas is ok, and that we have hopefully seen the last of any cranio-related surgeries.  At the same time, I am very heartbroken and sad all over again.  The memories and visions are pouring through my head and every time I look at Thomas' sweet little head and touch his scar, tears come to my eyes.  I will never forget those few days at CHOP.  The bruising and bleeding and swelling and all of the sleepless nights, worrying about my baby.  What a strong and brave little angel!  I cannot believe what not only Thomas had to go through, but every single baby who is faced with Craniosynostosis.  I want to take this time to send out love and prayers to every family that is facing surgery and recovery.  I am going to go back tonight and visit Thomas' website myself and reread our story, including all of the details from our time at CHOP.  I think it is so important to remember and I have encouraged so many people who have contacted me through this site to please document your experience.  I am not saying that it is necessary to create a website like I have, but with everything that we are faced with (the days leading up to surgery, Craniosynostosis surgery itself and finally recovery), it is so easy to forget because of the overwhelming mountain of emotions with which we are faced.  I know that I want to remember because I want to help others who are looking for answers, or for a friend to talk to and cry with.  So, with that being said, I am sure that I will be back in the next couple of days and write about my trip down memory lane.  In the meantime, I am going to go and put a nice bottle of bubbly in the refrigerator to chill...time to celebrate my sweet little angel Thomas!  xo