All Aboard for Jose! (The Edmonds Family)

All Aboard for Jose!

For: The Edmonds Family
Organizer: Alyssa Larsen
All Aboard for Jose! (The Edmonds Family)
$14,885
of $15,000 goal
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This fundraiser is closed. Thank you for your support!
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

Updates

03/08/2015
by Alyssa Larsen
Jose has continued to run fevers and the infection markers in his blood have been rising.  The area on his forehead also reopened and they were unable to close it with stitches in his room.  (It is larger than a quarter.)  Because of these difficulties, Jose required a 3rd surgery this morning.  They clean out the wound on his head and found some additional infection around the temporal lobe of his skull.  The infection washed out and some of the bone was removed.  At this point his shunt does not appear to be compromised but they will continue to monitor him closely.  He is a very sick little boy but hopefully this surgery today will help us get back on track to recovery.  Thank you for your continued love, prayers and support.

03/06/2015
by Alyssa Larsen
Sorry for the delay in updates. I realized that I had been updating the carepage and facebook, but not this site. So here is a quick run down. Jose developed an infection in his head and pneumonia. He had to have a second surgery on Monday, March 2. He has been on the ventilator since then and really having a difficult time. Here is the update from today... Hospital internet has not been so great and Charlie really needed me last night. We are so physically and emotionally drained its really even hard to focus to write. I am going to try. It may sound very clinical, but thats kind of where we are. Writing it all down may help me keep up with it better. Depending on which doctor you talk to, you get a different answer as to where we are. We think the overall trend is a slight improvement. Eyes- Still stitched shut but everyday they open them to do an exam. The abrasions are improving but not resolved. Doctor feels we definitely made the right decision to close them. Tummy- not where we want to be. However, his pee color is better and we are doing LOTS to help things move along. He seems uncomfortable there. We are trying to give him tiny bits of formula through his feeding tube. The kid is bound to be starving. Central Line in neck- Everything looks good there. No growth from cultures. Arterial Line- Replaced yesterday (move from foot to wrist) however it is very inconsistent with blood pressure readings. Muscles/Legs- He has Clonus which basically means when you try and flex his feet you get a series of spastic muscle contractions. He still has the drain in his right thigh from where they took facia to try and repair his head. White Blood Count- Trending down but still high (17 this morning) Lungs- Some slight improvement over yesterday. Still diminished on both sides. Left is worse than the right. He is not taking any breaths on his own over the ventilator. He gets IPV (intra pulmunary ventilation) every 2 hours. Basically, they shake up his lungs every 2 hours while giving breathing treatments through the vent. He was being treated with 3 antibiotics, Cephapime, Vancomyacin, and Flagyl. Typical treatment for pneumonia is 7 days of these medications. Yesterday was the 7th day. However, since he continues to run fever, they extended the Vancomyacin for another 48 hours. The Cephapime is being used to treat the infection in his head. He will be on that at least 4 weeks. Fever- spiked to over 103 at 11:30am Head- one of the drains stopped working so they removed it this morning. (so now he only has 3 in his head) There is some drainage that the infectious Disease docs are concerned about. Watching him closely. He will be having a CT Scan later this afternoon to look for any possible pockets of fluid (infection) that may have developed. However, the main sugeon, Dr. Taylor, thinks that his head is okay. The halo is still in place. Infections- pseudomonas (bacterial) and candida (fungal) - Will continue Cephapime and also added Fluconazole. The doctors consulted with Johns Hopkins yesterday to get there opinion on the treatment plan. They agreed. He is heavily sedated, but even with the sedation he needs extra help quite often to relax. We have a long way to go. Like I said earlier, I think we are headed in the right direction, its just going to take some time. Chris is leaving tomorrow. Sharon is still here. My dad is coming up tomorrow. Jose's teacher surprised us and is coming in tonight. That will get us through the weekend. Again, thank you Lauren and Barry and Alison for your help with Charlie. Thank you to Jose's teachers for the balloons, monkey and gift cards. Thank you to all of you for your ongoing love, support and prayers. Keep this train moving, Jose. Full speed ahead. All Aboard for Jose!

03/01/2015
by Alyssa Larsen
After a horrible night and a really rough morning /midafternoon, Jose was finally able to get some rest.  He went without pain meds, fluids or any other medications for nearly 7 hours because his last remaining IV stopped working.  He was poked, prodded and stuck 7 times trying to regain access through his veins but no one had any luck.  A special type of IV was finally placed by the doctors in his groin. His breathing is better, the fever is down but not gone.  The air in his head is getting worse.  He will have surgery tomorrow to try and repair this issue.  The doctor is confident but I am very concerned.   It is so difficult to see you child in pain and suffering, especially when you are completely helpless to fix it.  We are all weary and need your continued prayers.   FYI, Chris was supposed to fly back to Atlanta tomorrow,  but was able to change his flight to tuesday.  We had hoped Jose would be getting out of the hospital early on in the week, but that is obviously not happening.   It's going to make  juggling both boys this week pretty challenging. It's also going to be hard for Chris not be here. 

03/01/2015
by Alyssa Larsen
Yesterday was crazy.  Sorry I wasn't able to send an update last night.  It took a long time to get him comfortable but once we did, he had a few moments where he was with it and somewhat interactive.   I was able to sit him up in my lap for a few minutes.   He did have a few drops of sweet tea and a couple of tiny bites of applesauce.  We were even able to take him off the oxygen for about an hour. We celebrate every small improvement!   We are still battling the fever and there has not been much improvement with the air in his head.  I stayed the night last night.  He had 2 good hours of rest.  Other than that, his fever was high, he was pretty agitated and we struggled with breathing on and off.  In fact things got down right scary this morning in regards to his breathing. (Sats in the 70s and 80s while on 20L at 100%).  When he is struggling to breathe his head inflates and deflates like a balloon...it is very hard to watch.  I am usually pretty solid in dealing with Jose and all the medical stuff, but this really bothers me. It took about an hour,  but he has settled down and is resting  very comfortably at the moment.  He is on quite the cocktail of meds....3 iv antibiotics (flagyl, vancomycin and cefepime)   oxycodone, dilaudid,  ativan, benadryl,  tylenol and motrin.   Hoping these really kick in today and he perks up a bit more.   Thank you for your continued love, support and prayers.   They help carry through these long and difficult days. 

02/28/2015
by Alyssa Larsen
Well, it was not a good night or morning.  Chris had to stand by Jose's bed all night long to try to keep him calm.  Extreme itching, lots of pain, dehydrated, fever back to 103, heart rate stayed in the 170s, now a bit of pneumonia. The biggest problem is the air leak in his head. I mentioned something about this after the surgery, in that we were seeing his eyes puff up with each inhalation.   With the swelling we are not seeing it in his eyes, but now it is in his forehead.  Dr. Taylor had put a graph in the area between his nose and cranium but it doesn't seem to be sealing. This is a concern because air is not clean and the last thing Jose needs is an infection due to unclean air being trapped in his head.  Dr. Taylor himself came this morning (a huge deal since it's the weekend )  and tried several things to help.  It was pretty traumatic for me and painful for Jose.  The things he tried did not work.  He is going to give Jose until tomorrow night to see if he is able to heal this on his own. If not, he will need another operation on Monday.  We REALLY don't want that to happen.   We are trying a new concoction for pain management and giving him Ativan to help with the itching and to take the edge off.  Increased fluids, more aggressive with breathing treatments and even though he is completely out of it, we are going to try and sit him in a chair to help him breath better.  (PT is devising a plan for this.)  Dr. Taylor assures me that nothing we do pain, breathing or movement wise will have a negative impact on the issue with his head.  This is tough friends.  Very tough.

02/27/2015
by Alyssa Larsen
On a scale of 1 to 10, if yesterday was a 3, today was a 4.5.  He has had a few good moments today where he was responsive and even said Hi! He had a pretty good morning but really rough afternoon /evening.  Keeping his pain under control is a challenge and his fever went back up to the 102-103 range...not good.  The swelling has definitely increased and it is hard for him to see. His breathing is much better but he still needs the oxygen.  He has been able to swallow a few sips of water today and we were able to start his formula through his gtube tonight  (that should have happened much earlier in the day...don't get me started on that!).  He has been pretty itchy from the morphine so we are hoping to get him off of that and onto something else tomorrow. Chris is taking the night shift again and we are all hoping for some much needed rest.  Thank you for your continued support and prayers. 

02/27/2015
by Alyssa Larsen
Jose had a pretty good night.  His vitals are much better and while he is still requiring continuous oxygen support, we were just able to turn down the concentration level.  They have unpacked and repacked the dressing and that went surprisingly smooth. They also removed the dressing from his head. This halo is something else!  His fever is down to 100.5.  We think he might be itchy from the morophine so we have given him something to help with that.  He is still pretty out of it.  Because he is at such a high risk for needing to have the breathing tube put back in, he is not able to eat or drink anything right now.  Hopefully today we can start giving him a slow rate of feed through his g-tube and maybe a few sips of water.  We shall see.  I am optimistic about today, I think we are in a much better place...thanks be to God!

02/26/2015
by Alyssa Larsen
All things considered, Jose is doing pretty well.  He is requiring continuous  oxygen support and we are trying to stay ahead of the pain.  He is running a slight  fever, but  that is to be expected post-op.  He had a CT and everything  looked okay.  The air escape into his eyes and forehead is improving but not resolved.  So far blood levels look good and he has not needed any additional blood since the surgery.  Today's goals are stay ahead of the pain and keep him comfortable.  He is still pretty out of it and for that  I am  grateful.   Thank you for your continued support!

02/25/2015
by Alyssa Larsen
The surgeon was pleased with how things went today.  The surgery lasted about 8 hours.  He had a substantial amount of bleeding and requied 1600cc's of blood.  However, he was able to come off the ventilator and is only requiring occasional oxygen support. There were many challenges and the surgeons said this was by far one of the most complicated cases they have done.  There were tears in the dura which caused CSF leaks, but these were able to be repaired. The sides of the skull had to have titanium  mesh plates put over the bone to stabilize  and reinforce the structure in order to hold up the halo.  The surgeon assures me these will be able to  be removed when the halo comes off.  The forehead was advanced 8 milimeters.  The midface and upper jaw will be moved 20+ milimeters over the course of the  next few weeks.  The swelling  will be pretty severe  over the next couple of days.   Most likely his eyes will be completely  swollen  shut which will be quite scary for him, I'm sure.  We are somewhat concerned about how he is taking in air.  It seems as though some air may be escaping from the airway through the sinuses, into the eyes and up into his forehead.   We are watching this closely for possible problems with  inner cranial pressure.  For now, he is still pretty out of it but he is stable.  The next few days are going to be very difficult  with the swelling, pain management and helping him adjust to this crazy halo device on his head and across  his face.  Thank you for your  continued love, support and  prayers. 

02/24/2015
by Alyssa Larsen
We are back in Philly and Jose's surgery is scheduled for tomorrow morning. This this the BIG surgery he was suppose to have in January that had to be rescheduled when he got sick (If you are curious, Google Lefort III) The surgery will start first thing in the morning and will last about 8 hours or so. He will be in the hospital 5-7 days and we will stay in Philly about 2 weeks after he gets out...or until the doctors release him to travel home. This is going to be very difficult...both the surgery and the recovery. Please keep us all in your prayers.

01/19/2015
by Alyssa Larsen
Well, as most of you know by now, we got to Philly for the surgery but the surgery did not happen.   The morning of the surgery Jose woke up with a fever of 101.5 and a terrible cough.  If Jose had just had a fever, the surgery probably would have taken place.   However, with a fever of 101.5 and a cough at go time, it was too great a risk. This is major surgery...lasting 6-8 hours...with so much involved.  He has a complicated small, airway and the slightest respiratory issue could cause significant problems while intubated.  (Jose needs a 4.5 size tube.  Sizes range from 2-10...it is very small and fragile having been used so much!)  Anesthesiologist guidelines say surgery shouldn't happen for 4-6 weeks minimum following illness.  Ugh.  I thought we could just let this run its course, stay in Philly and do the surgery in a week or so.  Not so much.  So, we are back in Atlanta.  Jose is heading  back to school tomorrow and we hope to have a surgery date by the end of the week. So, what about the urgency with the rods....for now we are okay. But time is of the  essence. Basically,  airway wins for now. 
  So many people continue to support our family through all of this.  It is incredibly humbling.   Just today I was blown away when the family of Paul Mattox contacted me wanting memorial gifts be given to Jose's fund.  These folks have been a part of my life since I was very young and they mean the world to me. There are no words to describe this incredible gesture in memory of PeePaw,  as I so fondly called him.  There is much gratitude and many tears as we remember and celebrate a life so wonderfully lived.  Please hold this family in your prayers during this difficult time.    PeePaw and Jose share a passion for all things Disney. There's a line in the lyrics to "It's a Small World"  that is most appropriate for both of these guys.  It says, 
"There is just one moon
and one golden sun
and a smile means friendship to everyone
though the mountains divide 
and the oceans are wide
its a small world after all!"
There is no doubt that PeePaw ' s smile could light up an entire room and the same could be said about Jose.  Let's make an extra effort to share a smile as we celebrate a life well lived.
 If you are making a gift in memory of Paul Mattox,  please be sure to indicate that in the comments section of your gift so that this information can be shared with his family.   Thank you. 


12/30/2014
by Alyssa Larsen
Could use your prayers today.  Packing and preparing to leave tomorrow.   Headed to Richmond for a few days then onto Philadelphia for the next round of surgery for Jose.  I have tried to put this out if my mind during Christmas and today the weight of what is about to happen is hitting me pretty hard.  Jose will have a procedure to pull the front of his face forward.  The worst part is that Jose will have to wear a halo device (Google Lefort III halo if you are curious what it will look like...it is absolutely horrible) from January until April.  In April we will go back and have a second surgery to remove the halo.  Depending on his progress, they may or may not be able to put in the cranial implants to fill in the bone gaps in his skull.  If not we will have to go back for a 3rd surgery.  I do not feel ready for this....mentally,  physically, emotionally or spiritually.  These next few months could potentially be our toughest yet.  I love Jose just the way he is and  I am quite sad that this surgery will change his appearance....terrified really.  This surgery and recovery is so intense that Jose will not be able to return to school, most likely at all the rest of the year.   Eating will be a challenge, what little speech we have could be lost, pain will be intense and bleeding/breathing are big concerns.  We will really need your prayers and encouragement to get us through.  The financial support page is still up and we are so grateful for all of you who are helping us help our boy.  All Aboard for Jose!!!!

11/14/2014
by Alyssa Larsen
(posted by Rebekah Edmonds)
"This ship is sailing pretty smoothly and I don't want to rock the boat!"-That's what I said to the surgeon in Philly.  And it's true.  After our last hospitalization due to the infection in August, things have been going really well.  For the first time in about 1.5 years, we have been living a pretty normal life.  Sure there are the therapies, doctors visits, all the medication, the helmet, etc...but for us, it's been fairly calm.  No surgeries, no major medical issues, no babies being born.  It has been a nice break, which is why I am ABSOLUTELY DREADING what the start of 2015 will bring.  Let me back up....
During the July surgery in Philadelphia, it was decided that Jose's skull had not grown enough bone to hold the posterior cranial vault in place.  So, even though they removed all of the titanium mesh plates from his skull, they had to put in to small rods on either side to hold the cranial bones in place.  Bummer.  We knew then that this was not a permanent fix, but rather a place holder, in hopes that the bone would fill in the gap.  We also knew that given the structure of Jose's skull and his complicated facial features, a future surgery to pull the front of Jose's face forward would most likely be necessary.  It wasn't urgent, but it was coming. 
Over the past month or two Jose has been in a tremendous growth spurt.  We have also noticed that he is snoring like a freight train at night.  We recently had a sleep study done and while it wasn't terrible, there were still some obstructive sleep apnea episodes.  We also had a few xrays taken of Jose's skull to check on the bone growth process.  There has been some, but not what we need. 
Given where Jose is in his growth, the obstructive sleep apnea and the poor cranial bone growth, the surgeon in Philadelphia feels that we need to move sooner, rather than later, in regards to the next steps.  He wanted us to come this month, but I said no way, not how I want to spend the holidays.  So, come January, we will head back to Philadelphia.  Jose will have a procedure to pull the front of his face forward.  The worst part is that Jose will have to wear a halo device (Google Lefort III halo if you are curious what it will look like) from January until April.  In April we will go back and have a second surgery to remove the halo.  Depending on his progress, they may or may not be able to put in the cranial implants to fill in the bone gaps.  If not we will have to go back for a 3rd surgery.
I can not express to you how discouraged I am with all of this.  I long for this sense of "normal" that we have had these past few months.  However, I do not want us to get into an emergency situation if the temporary rods fail and we lose all the progress we have made with relieving the inner cranial pressure and creating more cranial space.  So, we have to stay ahead of it.
We are so grateful for all of your support and encouragement over the past year.  You have blessed our family immensely.  However, we still need your support...2015, here we come!  (And let's hope and pray that this will be the year that we can close this chapter and get into a more steady pace of "normal!")

08/04/2014
by Alyssa Larsen
After the last surgery was so successful, we did not expect to find ourselves back in the hospital in Atlanta...but here we sit. Jose has developed an infection. He outwardly seems ok, eating, laughing, watching his movies but some little bug is wreaking havoc on the inside. They are still trying to determine what to do. However, it doesn't look like a short term fix. Please keep us in your thoughts and prayers.

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.

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!

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!!!)

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.

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.)



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!


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!


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!

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.

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!



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. :)

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!



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. 




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

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

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! 


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