All Aboard for Jose! | Medical Expenses - YouCaring.com
YouCaring.com - Free Online Fundraising
It's simple and 100% free!Create Your Fundraiser
Search fundraisers

All Aboard for Jose!

$8,640raised of $15,000 goal
57%

Organizer: Alyssa Larsen Beneficiary: The Edmonds Family

Jose will need at least three cranial facial surgeries this year to correct defects in his skull. The specialists are in Philadelphia. Jump on the train creating a community of care for his family!

Tap to expand
Fundraiser Details

Jose has a severe case of Apert Syndrome, a very rare genetic disorder in which the seams between the skull bones close earlier than normal.  The cranial defects cause major concerns for brain growth and development. Jose is at high risk for stroke or blindness due to the increased cranial pressure caused by the shape of his skull. Many of you already know Jose and are aware of the level of care and medical intervention that has been required in the past in order to keep Jose healthy and safe.

Rebekah and Chris, Jose's adoptive parents, have been advised that Jose will require three separate surgeries over the course of the next year in order to improve his skull abnormalities and hopefully decrease the risk of blindness and/or stroke.   Their surgical team in Atlanta can not perform these highly intricate procedures.  They have been referred to Dr. Jesse Taylor and Dr. Scott Bartlett at the Children's Hospital of Philadelphia.  Dr. Barlett is the President of the International Society for Craniofacial Surgery.  Dr. Taylor is a member of this group and in addition to teaching at U Penn and performing surgery, he conducts research in the area of techniques for bone engineering using stem cells.  Bone engineering is vital for Jose as there are so many significant gaps in his skull.  As you can see, Jose will be in the care of the best of the best in the world. 

Jose's first surgery (scheduled for March 26, 2014) will pull the back of his skull out, relieving the pressure that his constricted skull has placed on his brain. The second surgery will remove all of the metal from his skull...most of us know that these screws and bolts and plates have been a major issue for Jose as they continue to break through the surface of the skin. Once the metal is removed, the surgeons hope to use portions of his rib and hip bones to cover the defects in his skull. The third surgery will pull his face forward, a repeat of a surgery he had in 2008.

Each of these surgeries will require a minimum three week stay in Philadelphia. As you can imagine, getting the surgeries covered by insurance out of state is a huge task. Please pray that the insurance company will see the urgency and need for the procedures explained above.  Another major source of stress for the family is covering the cost of the hotels, food, gas, airline tickets, incidentals and other unforseen expenses that will occur during these three stays in Philadelphia.

The goal is to raise a minimum of $5,000 per trip to help cover these expenses for the family.

Please share this page with everyone you know. To know this sweet family is to love them all. Jose has quite a fan base. I know we can do this!  Jump on the train conducted by this precious engineer and help us create a community of care for his family!

Can you support Jose and his family at any of the following levels?

$5 - vending machine snacks/toiletry items/special treat from gift shop
$10 - breakfast
$15 - lunch
$15 - dinner
$40 - meals for one day
$40 - one day of hospital parking
$50 - one tank of gas
$120 - one night at the hotel


Goal 1: $5,000 by March 15, 2014
Goal 2: $10,000 by June 15, 2014
Goal 3: $15,000 by August 15,2014

Contact the Organizer
Updates

Updates

07/19/2014
by Alyssa Larsen
Jose was discharged this afternoon! Yeah!.....BUT.... We have been back at the hotel for less than an hour. Jose has spiked a fever of 101.6. Called the doc, he said treat with tylenol. Doc called back a few minutes later and said he talked with radiology from the ct scan Jose had this morning. Jose's ventricles are bigger than they were in the last scan. Praying that this is not a sign of infection. For now we are watching and waiting. Feeling very anxious.
Share This Update!


07/17/2014
by Alyssa Larsen
Jose is doing great! Some pain but we are on top of it. He was moved out of ICU. He is eating, drinking and watching his movies! Way to go Jose!
Share This Update!


06/25/2014
by Alyssa Larsen
This is hard. After the last surgery, you may have noticed I kind of disappeared. I did. I physically could not write about what was happening anymore. When I write it, it somehow seems more real. I was numb. And still am. I hate this for Jose. I hate this for our family. I hate how all of this is affecting me. Enough of that. Here is where things are:
     Last surgery was successful. Jose got his award, went back to school and has gone back to many of his normal activities. (The doctor even cleared him to swim, much to Jose's delight!) Healing has been slow, a few minor issues, but nothing major. We took xrays today and sent them to Philadelphia. We are hoping for good, sturdy bone growth. The next surgery is scheduled for July 16. We are planning at least another 3 week stay in Philadelphia for this surgery. In this surgery they will remove all of the hardware in Jose’s head…distractors, pins and the titanium mesh plates. That’s the scary part. This is a VERY delicate procedure with a lot of risks. But the plates cannot stay in his head any longer. After the surgery Jose’s head will be extremely fragile. He will not have anything protecting his brain on the top/forehead part of his skull. He will wear a helmet as much as can be tolerated. The helmet can cause skin breakdown and we don’t want that. So, we will have to juggle safety and skin integrity on a daily basis. If all goes well, we will do this for 6 months. Jose’s head needs to become sterile and the bone will need to continue to gain strength. The next phase (Dec/Jan) will be to pull the front of Jose’s face forward, similar to what was done with the back. He will be in a halo device for several months. The final phase will be to rebuild Jose’s skull using PEEK material. We may end up in Seattle for this procedure. We shall see. One procedure at a time.
     Did I mention this is hard? And yet I am grateful. Grateful to be connected with some of the best, genuinely caring surgeons in the world, grateful that Jose is so incredibly strong, grateful for the continued support from so many we know and don’t know, and grateful that somehow I was chosen to be mom to this amazing kid. Keep praying. Keep sending healing thoughts. Keep sharing Jose's story. This is a marathon, not a sprint. A year from now, we will still be dealing with all of this. Please stay the course with us. We need you more than you know. All aboard for Jose!

PS…after this surgery on the 16th, the doctor is guessing Jose will be in the hospital at least a week. After that, we won’t be able to come back to Atlanta for at least another 2 weeks. However, the surgeon is comfortable with us going outside of the city…within a 2 hour commute. He suggested the Jersey or Delaware shore. I laughed. But seriously, if you or someone you know has connections with some sort of condo/house/apartment and would be willing to rent it out to us for a cheap rate during Jose’s recovery, we would be so grateful! (beach, mountains, lake…anything but the city!!!)
Share This Update!


04/02/2014
by Alyssa Larsen
The sun finally came out this afternoon!  We celebrated by taking the boys on a long walk.  (We rented a wheelchair for Jose for the next two weeks...its just too risky to have him up moving around too much!)  It was good to get out of the room and get some fresh air.  

Jose saw Dr. Taylor today.  He was pleased with Jose's continued progress and we will see him again next Wednesday.  We will also be seeing a hand specialist that is part of Plastic Surgery team at CHOP.  Don't know where it will lead, but it is good to finally get a second opinion.  

The turning of the rods and the cleaning regiment for Jose's head is a bit overwhelming.  Jose is as patient as possible and it doesn't seem to cause him too much pain.  However, just knowing what I am doing in moving the bone and trying to keep everything clean just gets to me.  He continues to have some bleeding and oozing from the sites of the rods.  We are already seeing a difference in shape of the back of Jose's head.  In turning the rods, we are moving the bone 1mm per day.

Charlie continues to be fairly tolerant of all the chaos.  He is enjoying tasting various table foods and had his first "real" feeding of baby oatmeal today!  He was literally smacking his lips!  (He also really wanted my pickle at lunch...I let him have a taste and he wanted more!  Crazy kid!)  

Through a connection of a friend (Molly Foos) of a friend, it looks like Jose's story is going to be mentioned on a local radio station here in Philadelphia tomorrow morning.  The station is 93.3 WMMR.  It is suppose to happen between 8 and 10 in the morning.  The radio station does have live streaming available on their website, www.wmmr.com.  Who knows where this may lead, but the possibility is pretty exciting!

We are so grateful for your continued love, support and prayers.  Things here are going better than we could have imagined. We continue to be amazed at Jose's strength and ability to overcome the difficult hurdles along his path.
Share This Update!


03/30/2014
by Alyssa Larsen
Jose is doing great! He got the drain out this morning and was given the green light to get out of bed! To celebrate we had lunch in the cafeteria! Daddy went back to Atlanta this morning and Sharon was due for some much deserved rest this afternoon. This meant it was me and the boys...wow. Who knew I could hold/nurse a baby and hold a urinal at the same time??? Who knew I could push a wheelchair and a stroller at the same time? It wasn't pretty, but we survived.

A highlight for the day was the video message Jose's Sunday School class sent to him this morning. I wish you could see it. Absolutely precious. At first he thought they were on Skype, and he tried to talk to them. When he realized it was a video, he watched it over and over again. My favorite part is at the end. They all say "We love you Jose" and then one little girl yells "SO MUCH!!!!" It doesn't get much better than that!

I have been a blubbering mess tonight. I am crashing at the hospital with Jose and Sharon has Charlie back at the hotel. This is the first time in Charlie's short little life that I have not put him to bed or gotten up with him in the morning. I know he is fine, but I am a mess.

Today I had Jose's head wrapped like the Karate Kid. Of course he had no reference, he just looked at me when I told him that. Lo and behold, tonight the Karate Kid is on TV. So, we are having a rite of passage ceremony here in room 4S6 and watching The Karate Kid. (Quite a shift from Thomas the Train!)

Jose is my knight in shining armor and we did it all (and would do it all again) for the glory of love! (Thank you Peter Cetera.)


Share This Update!


03/28/2014
by Alyssa Larsen
It has been a great day! Catheter out, asked for and ate a quesadilla, watched several movies and even sat up and played a few games of Kerplunk! This kid is amazing!
 
Chris is there for the night shift again. Tomorrow we remove bandages and start turning the distractors...ouch!
 
Hoping for another great day tomorrow!

Share This Update!


03/27/2014
by Alyssa Larsen
It has been a great day! Catheter out, asked for and ate a quesadilla, watched several movies and even sat up and played a few games of Kerplunk! This kid is amazing!
 
Chris is there for the night shift again. Tomorrow we remove bandages and start turning the distractors...ouch!
 
Hoping for another great day tomorrow!

Share This Update!


03/27/2014
by Alyssa Larsen
Overall, Jose is doing well.  He is still pretty out of it and having some gagging/wretching episodes.  Pain seems to be under control.  Bleeding some, but his blood count looks ok.  Chris stayed the night.  We anticipate a good bit of swelling today and finding a good balance with pain management as the meds from surgery begin to wear off.  Charlie was a perfect angel all day yesterday.   He had a fitful night but we did get some rest.  Thanks for your continued support. For more information,  find Jose's carepage at www.carepages.com.  His page is titled JosesSurgery.  Please continue to share Jose's story!
Share This Update!


03/25/2014
by Alyssa Larsen
(from Jose's mom)
We arrived in Philadelphia on Sunday night.  We left Atlanta on Friday and drove to VA.  Saturday was a FULL day of visits with family and friends!  It was exhausting but wonderful to see so many people!  Sunday we headed to Philly but made a quick stop in DC to have lunch with my brother and his wife. Monday we met with the plastic surgeon, Dr. Taylor.  He went over the procedure and showed us the actual device that will be put in for the distraction.  Monday afternoon we took Jose to see the new Muppet movie...his laughter was contagious throughout the theater!

Today was a crazy day...ENT, Neurosurgery, Pre-Op Clinic and Lab work.  Surgery is scheduled for 7:30am.  We were told it will take between 4 and 6 hours.  ENT will scope him to be sure the airway is secure from the previous surgery.  Then the Neurosurgeon and Plastic Surgeon will go to work.  The shunt is in the area where the bone will need to be cut.  Pray that it doesn't dislodge and there are no CSF leaks.  Externalizing the shunt and then a shunt revision are not things we want to have to add to this hospital stay!  The other big concern is the skin.  Because there have been so many incisions made in the same place, scar tissue may be an issue.  I have no doubt that Jose is in the best hands possible.  I just wish he didn't have to go through this. (Side note:  I shaved Jose's head in preparation for the surgery.  It was pretty traumatic.  You don't realize how severely misshapen his head is until his hair is gone.  I wasn't quite prepared for it.)  

Managing all of this with an infant is proving to be quite a challenge. (Hence the reason I am just now posting an update...I have tried 4 separate times since Sunday, but can't seem to get one complete!) Thank God for Sharon!  There is no way I could do this without her!  Chris arrived late tonight and will be here through Saturday so hopefully, between the three, of us we can juggle both boys.

Thank you for your continued love, support and prayers.  Tomorrow will be a long day.
Share This Update!


03/16/2014
by Alyssa Larsen
We leave this Friday for Philadelphia.  To say I am a bit overwhelmed is an understatement.  Between trying to tie up loose ends at work, packing, squeezing in a few doctors appointments and juggling the emotional roller coaster that comes with the territory, we sure could use your prayers this week.  We did make some time for family fun this weekend...baseball and brunch, family portraits, dinner with friends, church and a family outing to Midevil Times...thankful for good moments, memories and friends. Today, Jose's Sunday school class gave him a super cute monkey blanket that they made for him.  It was so sweet!

Thank you again for your continued encouragement, prayers and financial support.  We have had supporters all the way from Australia!  How cool is that!?!  Continue to share Jose's story because we really need everyone on board with my little engineer in the days and weeks to come!

Thank you again!  All Aboard!


Share This Update!


03/11/2014
by Alyssa Larsen
Insurance approved the surgery! The hotel has been booked and all of the appointments have been confirmed! Thanks to the genrosity of all of Jose's supporters, this is one less burden for the family to carry. Pray for them. As the surgery approaches, naturally, the anxiety about the trip, the procedure, the recovery, and the future increases for everyone. Well, Jose is fine. The rest of us? Not so much. :)
Share This Update!


03/10/2014
by Alyssa Larsen
Jose has been selected for the YES I CAN award through the National Council for Exceptional Children!  We are so honored and incredibly proud.  And get this, the award ceremony is in Philadelphia...when we will be there for the surgery!  Amazing!

If you google, Jose Edmonds, YES I CAN, you can find the press release with more information about this great honor.  It was published in the Gwinnett Daily Post on Sunday 3/9/14.

Way to go Jose!

Thank you for your continued prayers and support!  Don't forget to keep sharing this page!


Share This Update!


03/04/2014
by Alyssa Larsen
Between the donations made through this page and the donations collected at Jose's school, we have met our first goal of raising $5000! Meeting this monetary goal is very important, but the friendship and emotional support means a lot, too. You have no idea how important this is to the Edmonds! Thank you for being a part of this jorney with us. 

We have come a long way and still have a long way to go. Pray that this procedure is approved by the insurance company. Pray for Jose's health unitl the surgery can be performed. Pray for strwngth and peace for all of the Edmonds as they prepare for the upcoming surgery and recovery. 



Share This Update!


03/01/2014
by Alyssa Larsen
(post by Rebekah, Jose's mom)
Thank you so much to everyone who has jumped on the train to support our family!  Your generosity is overwhelming.  Yesterday, the faculty and staff at Jose's school, Arcado Elementary, presented us with a gift of $1450.00 that they have been collecting.  I was speechless and brought to tears.  So, with that gift, we are really at $4575!  Almost a third of the way to our goal in just one week!  Amazing.

Jose seems to be doing okay.  His head still bleeds when he strains, but there are no signs of infection.  This morning, after his bath, the big scab on the main wound on top of his head came off.  I was prepared for gushing blood, but it just oozed.  I cleaned it really well and am keeping my fingers crossed that there will be no complications from this. 

Jose has a piece of artwork that was selected for an art show in Lilburn on Sunday.  We can't wait to see it!  Baseball season has begun and we are trying to make the most of it since his season will be cut short by having to go for the surgery.  Jose plays on a Buddy Baseball team at Murphy Candler Baseball Park in Dunwoody.  He absolutely loves it!

We are still planning to leave Atlanta on March 22 to start the trek to Philadelphia.  I am hesistant to make any firm arrangements though because WE STILL DO NOT HAVE INSURANCE APPROVAL!!!!   So frustrating.  Please pray we will hear something this week.

Thank you again for all of your love, prayers and support. 

~Rebekah
Share This Update!


02/24/2014
by Alyssa Larsen
We have reached the halfway mark for our first goal! Thank you! 
Share This Update!


02/22/2014
by Alyssa Larsen
We are thrilled to see the progress that has been made in meeting the first goal of $5000! Thank you to everyone who has taken the time to donate and share this fundraising page. 

While we are celebrating the donations we have received so far, we are also becoming increasingly worried about Jose. His head has started bleeding every time he strains. Even laughing causes an increase in the pressure and his head begins to bleed. The Edmonds need to get to Philadelphia as soon as possible. Your donations and sharing of this page is very important to helping the family afford the tremendous cost of travelling for three weeks. Please share on all of your social media forums! 


Share This Update!
Supporters

Supporters

Comments

Comments


Spread the word
More photosView Gallery

Gallery

Widget code for All Aboard for Jose!

Copy the embed code shown then paste it on your site. You can select from 3 premade sizes.

x

Just copy the code above and paste it on your site!